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Go Beyond the Gut: The Changing Face of Celiac Disease

May is Celiac Awareness Month

 

Celiac disease (CD) is a permanent intolerance to gluten (a protein present in wheat, rye and barley), which causes damage to the small intestinal mucosa by an autoimmune mechanism in genetically susceptible individuals.

Autoantibodies such a tissue transglutaminase antibody (TTG), endomysial antibody (EMA) and deamidated gliadin peptide (DGP) are produced in the body and form the basis of serological tests used for screening. The diagnosis of CD is confirmed by small intestinal biopsy and treatment consists of a strict gluten-free diet for life.

Celiac disease is one of the most common chronic gastrointestinal disorders. It is estimated that 1% of the population is affected by CD, but majority of these individuals remain undiagnosed. Celiac disease was thought to be a rare malabsorptive disorder of infancy and childhood. However, it is now considered to be a common, multi-system disorder that can present at any age when gluten is present in the diet.

Awareness of CD amongst health professionals remains poor. Two large surveys from Canada have demonstrated that the mean duration of symptoms before diagnosis of CD in adults is about 12 years.

Celiac disease has a broad clinical spectrum. In classical (typical) CD, the patient presents with
features of malabsorption such as diarrhea, steatorrhea, and weight loss or growth failure. In non-classical (atypical) CD, signs and symptoms of malabsorption are absent and patient may have other intestinal and/or extra-intestinal symptoms. Majority of patients with CD now present with non-classical symptoms. Clinical indications for screening for

CD include the following;

 

Additional features in children:

The currently recommended test to screen for CD is IgA-tissue transglutaminase antibody (TTG). IgA deficiency is common in CD and hence total serum IgA level must also be measured. Patients with a positive test should be referred for endoscopic small intestinal biopsy to confirm the diagnosis. A gluten-free diet should NOT be started before an intestinal biopsy is performed, as it will affect the interpretation of the biopsy and make confirmation of the diagnosis difficult.

A timely diagnosis of CD will help alleviate suffering, prevent nutritional deficiencies and may also reduce the risk of developing certain cancers and other autoimmune disorders.

For more information visit the web site of Canadian Celiac Association at www.celiac.ca

Dr. Mohsin Rashid MD, MEd, FRCP(C)
Professor of Paediatrics
Gastroenterology & Nutrition
Dalhousie University
Education Committee, Canadian Celiac Association
April 2018

September 2013. Emily was a happy little girl when she was 5. Emily was in Kindergarten and had a lot of friends. She was always running, jumping and playing. It seemed like Emily and her younger sister, Kenzie were always getting into things. Very busy little girls.

Then one day Emily seemed to be too tired to play. She started sleeping more and laying around on the couch. She didn’t want to go to school. She didn’t want to play. My husband and I thought we was getting lazy and kept trying to get her up and active. We put Em in gymnastics. She would always try her best, but she just wasn’t able to keep up. Then we noticed she was getting skinny – I mean really skinny – where we could count her ribs. Her eyes started to sink into her head along with big dark circles under her eyes. Emily also started to get a belly – which got bigger and bigger. She looked like an Ethiopian child….all skin and bones with a big distended belly. By now, my husband and I were getting worried because we knew something was wrong.

At this time, we lived in a small Northern Town in Alberta. The doctors we very busy and we feel didn’t put sufficient time into figuring out what was wrong with Em. They told us it was a growth spurt, she had the flu and then she looked anemic. But I kept persisting. Then when her systems tuned into really bad diarrhea, vomiting and gas (which she was very self-conscience of) they thought maybe she had cancer or something else that they couldn’t figure out. We were so sure there was an explanation so I kept pushing.

Finally, they did one last blood test and checked off the box for tTg. We waited for the results. Because we didn’t have a regular family doctor, I took Em to Emergency and we waited over 4 hours to find out the results. I could see the printout of the results sitting on the counter – within reach. After 4 hours went by, I grabbed Em and left – the printout was still sitting on the counter. I figured if it was bad, someone would call us back to come in right away. I was so tired and I knew that the next week we were going to visit family in my home town so I made an appointment with my own family doctor.

When we showed up to my family doctor, Emily was so frail and exhausted. She was a shell of the child she used to be.

My doctor immediately pulled up the results and I will never forget the look on her face. She was in shock. She immediately told us that she was rushing us to the Stollery Childrens Hospital in Edmonton. Emily had been misdiagnosed for so long her tTg level was 6400. My family doctor told us that it was “criminal” that she had been misdiagnosed for so long because it was a simple blood test. Once we got to the Stollery it all went so fast. We were rushed into the Peds Ward. We met with a Gastro doctor who told us Emily is the most severe child with Celiac that he had ever seen. Within an hour, Em was in a biopsy and my husband and I were in a daze. It all happened SO fast. In an hour, the Gastro doctor came out and told us what we already knew – Emily had Celiac Disease. We then had a Dietician meet with us and our whole lives changed. By now it was February – 5 days before my younger daughters birthday. This would be a big test to see if I could switch everything over to gluten free and not gluten my child. I FINALLY received a phone call from the nurse and the hospital in our small town telling me I needed to come in right away with Em. ( This was over 2 weeks later.) If I had waited, I would have been letting Em eat all the poison that was slowly making her sick. I felt like a terrible parent for making my child sick this whole time. It was really hard on me, as her mother, to know that I was feeding her this poison the whole time.

Within a month of going gluten free – our baby was back! She was putting on healthy weight, she was playing with her sister and her gas and diarrhea were gone. Fast forward 4 years and she is a healthy 9 (and a half) year old girl. I was diagnosed with Celiac 2 years ago at 35 – but by then, I already knew and the change was so easy. I’ve never seen Emily so happy when she heard I had Celiac too. She wasn’t alone.

These kids to feel alone. At school, friends’ houses and just out doing things, they are different. People still don’t get how severe being glutened it. My family chooses to eat at restaurants because I don’t feel like living in a protective bubble is healthy for anyone. She has been glutened in restaurants, really bad sometimes, but I tell her we have to educate the staff and people around us because the more people who know about Celiac – the more choices in life we will have. Until there is a cure, this is our life and I wouldn’t change it for anything

 

Why you shouldn’t just go gluten-free

Written by: Dr Justine Turner, Associate Professor, Department of Pediatrics, Division of Pediatric Gastroenterology & Nutrition and CCA Professional Advisory Council Member

Celiac disease is a disorder of the immune system, where the individual affected does not tolerate gluten, a common part of our Canadian diet, present in wheat, barley and rye. This is the only disease that requires a 100% lifelong gluten-free diet.

It has become increasingly common to ‘try’ a gluten-free diet for many other reasons that are not celiac disease. Some of these reasons are poorly supported by facts. For example, a gluten-free diet is not a good strategy to lose weight as it can actually be high in saturated fat and simple sugars without careful dietary guidance. There are many other common conditions, where gluten is not well tolerated. In fact gluten is hard to digest and can cause many people who do not have celiac disease to have bloating or abdominal pain. However, these individuals might tolerate lesser amounts of gluten and are not at risk for the lifelong complications of celiac disease, like malabsorption and poor bone health. As it’s not easy to be on a gluten-free diet all day every day, and because gluten-free food can be expensive, most people who try the diet don’t actually stick to it 100% forever.

If you have celiac disease to be on the diet forever is critical to staying healthy and so you really want to know the truth. To get the diagnosis right it’s very important that the screening blood test and the diagnostic endoscopy test both be done while you are still eating gluten. If gluten is stopped, it can become very difficult to get the diagnosis right. You need to know for sure if you have a chronic illness and need a strict lifelong gluten-free diet, or can you tolerate ‘some’ gluten now or maybe in the future. If you suspect you have celiac disease ask your doctor for the blood test to be done. Remember, if positive the blood test warns your doctor that you might have celiac disease, but it does not prove you have the disease. It can be wrong. Keep eating gluten till the right test for you is completed, which is usually an endoscopy and biopsy test.

Consumer Alert

Sobeys Inc. recalls Sensations by Compliments Brand Pecan-Crusted Cheesecake Collection

April 6, 2018. Mississauga, ON. Sobeys Inc. is recalling Sensations by Compliments Brand Pecan-Crusted Cheesecake Collection (340 gm) from the marketplace because it contains wheat which is not declared on the label.

It is also declared as gluten-free under the Gluten-Free Certification Program and carries the GFCP Trademark. The CFIA has advised that people who have an allergy to wheat, celiac disease or other gluten-related disorders should not consume the recalled product described in the recall notice at http://www.inspection.gc.ca/about-the-cfia/newsroom/food-recall-warnings/complete-listing/2018-04-5/eng/1522942126471/1522942126923

There was one reported illness, but it is not yet known if it was an allergic response to the wheat which can be the result from extremely small amounts (i.e. there is no allowed threshold) or celiac/gluten sensitivity for which a threshold exists of <20 ppm. Regardless, if you have a concern with gluten or wheat, the CFIA recall notice advises that these recalled products should not be consumed. They should be returned to the store where they were purchased or thrown out.

The Canadian Celiac Association (CCA) and the Allergen Control Group (ACG) are jointly making the following statements:

• ACG administers the GFCP and has been investigating this event since being informed by the manufacturer on April 4 2018 before the recall was deemed necessary by the CFIA. The manufacturer reported that the source of the wheat was identified as human error occurring at the time of manufacture and isolated to three lots. Beyond the recall notice to warn consumers, these products are in the process of being rapidly being removed from the market as well as out of the distribution chain. Corrections have been made to the manufacturer’s procedures and these will be verified as being in place before any new production of this product is released to the marketplace.

• The Gluten-Free Certification Program (GFCP) is a voluntary program designed for manufacturers and brand owners committed to producing safe and reliable gluten-free products. The program combines stringent; risk-based gluten-free requirements with globally recognized food safety management systems, which exceed government requirements in both Canada and the United States by providing preventive controls. These systems are verified by an annual robust, third-party facility audit process which ensures continued compliance.

• Unfortunately, there is no such thing as “zero risk” and this is the first recall affecting a GFCP product after nearly eight (8) years and literally millions of servings of gluten-free products consumed. Consumers across North American can rest assured that this event is being handled with the highest due diligence to ensure that the gluten-free products they or their families are consuming meet the government’s strictest gluten-free requirements when they see the GFCP Trademark.

• The Canadian Celiac Association believes that all Canadians have the right to safe food. It worked with the ACG to develop the GFCP to be credibly applied in a marketplace to protect consumers who have no other choice but to follow a gluten-free diet for life. The CCA believes that the GFCP provides the highest level of scrutiny to help create trust and build brand loyalty with customers as well as expanded choices. It also provides a clear and easy-to-recognize certification trademark on packaging versus those products which display unsubstantiated self-declared gluten-free claims or marks or solely rely on end product testing. However, should an event happen, reducing and eliminating further risk to consumers is paramount. We are confident that the necessary improvements will be made at the manufacturing level before releasing any new Sensations By Compliments Brand Pecan-Crusted Cheesecake Collection (340 gm) production which carries the GFCP Trademark.

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Media Contact for CCA:

Melissa Secord
Executive Director
Melissa.secord@celiac.ca
905.507.6208 ext 226

About Canadian Celiac Association (CCA)

CCA is the national voice for people who are adversely affected by gluten and is dedicated to improving diagnosis and quality of life. It is a national charity headquartered in Mississauga, Ontario, Canada and has been serving the community since 1982.

Media Contact for ACG:

Frank Massong
Vice-President, Regulatory and Technical Services
Allergen Control Group Inc.
frank.massong@glutenfreecert.com
866.817.0952 ext 224 or 416-860-5406

About Allergen Control Group

Allergen Control Group Inc (ACG) is North America’s leading subject matter expert, developing and marketing specific risk based “free-from” food standards, for major grocery retailers, national brand owners and manufacturers, across food, natural health products, beverage and pharma industry sectors. As owners of the only recognized ISO 17021-1 Gluten-Free Certification Program (GFCP), ACG offer brand owners the most stringent product safety assurances, combined with a credible brand message, which is endorsed by leading North American celiac organizations.

 

Why you shouldn’t just go gluten-free

Dr. Justine Turner
Associate Professor
Department of Pediatrics
Division of Pediatric Gastroenterology & Nutrition

Celiac disease is a disorder of the immune system, where the individual affected does not tolerate gluten a common part of our Canadian diet, present in wheat, barley and rye. This is the only disease that requires a 100% lifelong gluten-free diet.

It has become increasingly common to ‘try’ a gluten-free diet for many other reasons that are not celiac disease. Some of these reasons are poorly supported by facts. For example, a gluten-free diet is not a good strategy to lose weight as it can actually be high in saturated fat and simple sugars without careful dietary guidance. There are many other common conditions, where gluten is not well tolerated. In fact gluten is hard to digest and can cause many people who do not have celiac disease to have bloating or abdominal pain. However, these individuals might tolerate lesser amounts of gluten and are not at risk for the lifelong complications of celiac disease, like malabsorption and poor bone health. As it’s not easy to be on a gluten-free diet all day every day, and because gluten- free food can be expensive, most people who try the diet don’t actually stick to it 100% forever.

If you have celiac disease to be on the diet forever is critical to staying healthy and so you really want to know the truth. To get the diagnosis right it’s very important that the screening blood test and the diagnostic endoscopy test both be done while you are still eating gluten. If gluten is stopped it can become very difficult to get the diagnosis right. You need to know for sure if you have a chronic illness and need a strict lifelong gluten-free diet, or can you tolerate ‘some’ gluten now or maybe in the future. If you suspect you have celiac disease ask your doctor for the blood test to be done. Remember, if positive the blood test warns your doctor that you might have celiac disease, but it does not prove you have the disease. It can be wrong. Keep eating gluten till the right test for you is completed, which is usually an endoscopy and biopsy test.

Partnering with CCA has benefits

Partnering with CCA to our community presents a big opportunity. The Canadian gluten-free food market is the fastest growing food intolerance category estimated to be $811.5 million and forecasted to grow 10% by 2018. One third of Canadians, approximately 10 million people, are looking for gluten free foods – can you afford to miss this opportunity?

Not only is this a growing market but it is highly engaged – ready to discover new products and share with their fellow community members.

2018 Partnerships… oh count the ways!

From Twitter parties, webinars and major awareness campaigns to coupons and advertisements, there is something for every budget size and engagement level.

Click here to download – 2018 CCA Partnerships

Don’t see your ideas here? Contact Melissa Secord at melissa.secord@celiac.ca to discuss. It never hurts to ask!

Celiac Awarness Month

May is internationally recognized as Celiac Awareness Month. Join CCA in building awareness of celiac disease and gluten sensitivity.

2018 Campaign

We are focused on ‘The Many Faces of Celiac Disease’ the non-classical signs of celiac disease. Thousands of people experience symptoms but have no idea that it could be celiac disease. From infertility, iron deficiency, neurological symptoms to poor bone health, celiac disease is often not the first disease to be tested for when a patient arrives at their doctor’s office. We want to change that and need your help reaching the 80% of people who are undiagnosed.

Review our partnership package for our latest plans or call us with how you’d like to help us fundraise and reach more Canadians.

Gluten-Free Certification Program

Do you produce a gluten-free product and want more people to enjoy them? CCA has partnered with a world-class certification program that carries our CCA seal of approval. The mark is highly regarded and visible for gluten free shoppers. Get your products into more hands today. Visit GFCP.

Frying wheat products still not gluten-free, warns Canadian Celiac Association

April 3, 2017 (Mississauga, ON.) The myth that frying wheat products makes them gluten-free is endangering people with Celiac disease.

People often liken the frying process to cooking an egg. In the case of an egg, frying it changes the colour and structure of the egg. While heating gluten in a fryer does change the structure of the gluten protein, it does not make it safe for someone with Celiac disease.

Heating wheat to 65°C (140°F) unwraps the three-dimensional structure of the protein, like it does for eggs, but that is not enough to prevent an immune system reaction for someone with Celiac disease.
The trigger for the gluten reaction in someone with Celiac disease is a very short peptide chain within the larger protein. Peptides are chains of amino acids that make up a protein. The only thing that will break the peptide chain apart and make gluten safe for people with Celiac disease is a complete breakdown of the chain into its component amino acids.1

“These peptides are extremely difficult to break apart – they are designed to resist the harsh environment of the gastrointestinal tract,” explains Sue Newell of the CCA.

There is some question about the exact temperature for this complete breakdown, with a suggestion that heating the food to 315°C (600°F) for 30 minutes may be sufficient. At that point, however, the food is inedible.

The Canadian Celiac Association recommends that people with Celiac disease and gluten sensitivities avoid any food cooked in oil has also been used for wheat-based products.

For more information:
Melissa Secord
Canadian Celiac Association
1-800-363-7296 X 226
info@Celiac.ca
www.Celiac.ca

References: [1] http://dx.doi.org/10.1371/journal.ppat.0040034

March 2018

CCA Position Statement: NIMA Sensor

SUMMARY:

The Canadian Celiac Association’s Professional Advisory Council (PAC) was asked to review the NIMA Sensor device as it was recently launched in Canada.

The PAC is not aware of any published independent or third party scientific data that defines the accuracy of this device.  There are potential difficulties in the measurement of the gluten content of food including:

 

At the present time, the CCA Professional Advisory Countil DOES NOT RECOMMEND that people with celiac disease or non-celiac gluten sensitivity use the NIMA Sensor device to determine the gluten status of a food for the reasons outlined below. We will continue to evaluate scientific information about the NIMA device as it becomes available. 

______________________________________________________________________

What does this mean for Canadian consumers?

Gluten testing is a complex process.

Sampling error

One small spot of gluten on your plate can make you ill, but you cannot guess where it is on your plate. Trying to find the right sample is very difficult – you might miss the gluten by millimeters and think the entire plate is safe

Complexity of processed food

Once food is combined and processed with other ingredients, detecting gluten can be difficult due to the transformations that occur during cooking. Other ingredients in the food may interact with the gluten test giving a false report

Testing

Improper testing of foods can give false readings, either positive or negative. This can lead to consuming foods that contain gluten or avoiding safe foods. For this reason, gluten testing of foods should be done by trained experts in an accredited laboratory so that:

The Canadian Celiac Association Professional Advisory Council DOES NOT RECOMMEND that people with celiac disease or gluten sensitivity use this device to determine the gluten status of a food until scientific data demonstrating its accuracy are available. Instead, it is essential that individuals ask questions about the food ingredients, preparation and serving procedures.

Tips for Eating Away from Home

Here are some questions you should ask…

 

For more information on this statement, please contact Melissa.secord@celiac.ca

Research publications by Professional Advisory Council,
Canadian Celiac Association (2003-2017)

Duerksen D, Pinto-Sanchez MI, Anca A, Schnetzler J, Case S, Zelin J, Smallwood A, Turner J, Verdu E, Butzner D, Rashid M. Management of Bone Health in Patients with Celiac Disease: A Practical Guide for Clinicians. Canadian Family Physician 2017 (accepted)

Pulido O, Zarkadas M, Dubois S, MacIsaac K, Cantin I, La Vieille S, Godefroy S, Rashid M. Clinical Features and Symptom Recovery on a Gluten-Free Diet in Canadian Adults with Celiac Disease. Canadian Journal of Gastroenterology 2013 Aug;27(8):449-453

Zarkadas M, Dubois S, Collins K, Cantin I, Rashid M, Roberts K, La vieille S, Godefroy S, Pulido O. Living with Celiac Disease and a Gluten-Free Diet: A Canadian Perspective. Journal of Human Nutrition & Dietetics 2013;26(1):10-23

Rashid M, Zarkadas M, Anca A, Limeback H. Oral Manifestations of Celiac Disease: A Clinical Guide for Dentists. Journal of Canadian Dental Association 2011 Apr;77:b39 Also reprinted in Journal of Michigan Dental Association 2011 Oct;93(10):42-6 and Journal of the Pierre Fauchard Academy (www.fauchard.org/) 2012, Mar/Apr;57(2):84-86

Rashid M, Butzner JD, Warren R, Molloy M, Case S, Zarkadas M, Burrows V, Switzer C. Home Blood Testing for Celiac Disease: Recommendations for Management. Canadian Family Physician 2009 Feb;55:151-153

Rashid M, Butzner JD, Burrows V, Zarkadas M, Case S, Molloy M, Warren R, Pulido O, Switzer C. Consumption of Pure Oats by Individuals with Celiac Disease: A Position Statement by the Canadian Celiac Association. Canadian Journal of Gastroenterology 2007 Oct;21(10):649-651

Cranney A, Zarkadas M, Graham ID, Butzner JD, Rashid M, Warren R, Molloy M, Case S, Burrows V, Switzer C. The Canadian Celiac Health Survey. Digestive Diseases & Sciences 2007;52(4):1087-1095

Zarkadas M, Cranney A, Case S, Molloy M, Switzer C, Graham ID, Butzner JD, Rashid M, Warren R, Burrows V. The Impact of A Gluten-Free Diet on Adults with Coeliac Disease: Results of a National Survey. Journal of Human Nutrition & Dietetics 2006;19:41-49

Rashid M, Cranney A, Zarkadas M, Graham ID, Switzer C, Case S, Molloy M, Warren R, Burrows V, Butzner JD. Celiac disease: Evaluation of the Diagnosis and Dietary Compliance in Canadian Children. Pediatrics 2005;116:e754-e759

Cranney A, Zarkadas M, Graham ID, Switzer C. The Canadian Celiac Health Survey-The Ottawa chapter pilot. BMC Gastroenterology 2003;3:8

Our Stories

 

Marion’s Story

“My friends and family came to the hospital to give their final goodbye,” recalls Marian Logan of Cambridge after she was admitted to hospital for a week in her mid-50s with violent and extreme diarrhea.

“My doctor didn’t know what I had wrong with me and I was rapidly losing weight.”

Marion was put on intravenous for several days before they finally saw improvements. Everyone was relieved. The doctor was ready to send her home the next day without a final diagnosis.

“I clearly remember they served me meat, potatoes and gravy for dinner. Well that did me in. The doctor the next day said, ‘oh, it must be a food related issue.’” After some testing they finally diagnosed her with celiac disease.

Marion, now in her 80’s, found support through a local Canadian Celiac Association chapter to help start her new gluten-free journey. She was grateful to finally get a diagnosis and have the support from people who understood her disease. She could learn what she could eat and how to maintain her quality of life. Marion knows what it is like to first be diagnosed and hopes no one has to go through what she experienced.

 

Mona’s Story : An Arabian Canadian Perspective

 

February 2016 was the date that changed my life forever. At the age of 45, I was diagnosed with Celiac disease (CD). Having been suffering from multiple food allergies a few years before, it meant that my “no food” list was to become much longer. But that was not the only problem. As a practicing Muslim I eat only halal food meaning I have no pork or alcohol in my diet, and the meat I eat has to be slaughtered in a specific way. With these three dietary needs, I felt quite miserable and sad. I left the doctor’s clinic and headed to the nearest grocery store. I asked for their gluten-free food department, and found myself there shuffling through the packages, trying to find something suitable for someone who is allergic to almost all the fruits, vegetables, and non-roasted nuts.

The first morning of what I like to call my “Celiac era”, was quite saddening. I opened my fridge to discover that I have to be creative in designing my breakfast. For the next few days, meal time wasn’t a good time anymore, I always felt hungry. I was constantly scanning kitchen shelves, looking for food, not just any food, but “suitable food”. I remember a day when I went with my husband to a Middle Eastern store where all my favorite Baklawa*and kunafah* were laying softly waiting to melt in my mouth. I cried and left the store feeling disappointed.

Back home, bread is the one of the staple items put on the table at breakfast and supper time. Bread, which has been around since the time of pharos, is covered in beautiful brown, bran. Growing up, most of the days, my mom would bake cakes, pies and even French bread. Baklawa*, Basbousa* and kunafah* were always made in our middle-income home along with other regular home baked goodies. Unfortunately, nowadays, I can’t eat these delicacies any more. Most Middle Eastern and halal restaurants here have never heard about CD, and unfortunately, don’t offer any gluten-free options.

As someone who fasts one month each year, with no food nor drink from sun down to sun set, I felt like I had pretty good self-control. Whether it was at work or on the streets, I had no issues while being surrounded by people eating and drinking as I was fasting. But with CD it is a completely different story. It’s like me fasting forever. This wasn’t just a day, or a week, or even a month, this was for the rest of my life. I needed to always maintain strong self-control and determination in order to keep up.

I would like to increase the awareness about CD within the Arab community in Canada. During the last two years, I have been constantly talking about the disease in all gatherings that I have been to, I brought up the topic on WhatsApp and Facebook groups. I started a Facebook group dedicated to celiac patients in Canada from Middle Eastern origin where I post all the new GF food I find in stores, in addition to food mixes that proved successful with me.

I have been in touch with people from Middle Eastern countries (where one would think these places are free from celiac) but the truth is, there are hundreds of thousands of patients there. I have to admit that being in Canada, where everything is labeled, and GF food is certified, may have saved my life from the struggles that others may face when it comes to identifying GF food. While those living in the Middle East may not have labeled food like we do here, they were able to develop recipes of our Middle Eastern food. The only difference is of course the types of flour that they use is much different to the brands here, many recipes were unsuccessful for me.

In addition to raising awareness to people of Middle Eastern decent, I would also like for doctors to change their perception of the fact that celiac is only found in Caucasian patients. Celiac disease is prevalent in all populations and doctors must be aware of this.

Two years have passed with CD and now with my daughter having been diagnosed as well, I have to say that she is a huge support for me. She is very passionate about cooking and baking. We’ve both tried many recipes, some which failed, and some were a huge victory for us. Without her, I wouldn’t have dreamed of eating a GF Mango mouse birthday cake.

I have learned how to adapt with the disappoint that comes with recipes failing, and food not tasting how I would like it to. I’ve accepted my disease and the impacts it has had, and will continue to have on my life. I’ve accepted that with my Rheumatoid Arthritis (which is connected to celiac disease) there will be some good days and some bad days, and that I have to be flexible in my expectations and learn not to surrender to my pain.

Throughout my years with Celiac, I’ve made a little “wish list” of things I hope will happen in the years to come. The first is of course to be able to dine out at a GF restaurant, where I’m not restricted to eating vegetarian food simply because the “halal” options are not gluten-free. Second, I wish for all Middle Eastern restaurants, to have a GF section in their menu, that isn’t just comprised of salads.

I hope that someday, a cure for CD will be discovered so that my daughter and the many generations to come aren’t restricted to only one type of food, but have the freedom to indulge in whatever food they like.

*Basbousa: Traditional middle east sweet semolina cake.

 

Growing up with celiac: Carson’s Story

Pull quote: “What most people take for granted in what they can eat, Carson dreams of eating one day.”

Carson’s story begins at around two years of age, when he first began to eat baby cereal. Shortly afterward, Carson would develop symptoms, such as an upset stomach, crying and within 20 minutes he would head to the washroom. They also noticed that Carson was not doing what other children his age were doing, such as talking, crawling, walking, climbing and other physical activities. They became concerned, as they noticed he wasn’t gaining weight and he had an extended stomach, with a pale complexion and appeared to show a lack of growth. They knew something was wrong, so they took Carson to his doctor. He recommended that they take Carson down to Sick Kids Hospital for blood tests, one of which would be for celiac disease. Since the doctor was very concerned he made sure to put a rush on the test results. Within a week the blood test results came back with a better than 95 per cent chance that it was celiac disease.

From that moment on everything changed for our family, in the way that they would have to adapt to a very strict gluten-free diet for Carson. There would be no room for error from now on. Our lives did not turn upside down. They would simply adapt as they knew what had to be done. They would now be making separate meals for the most part as they were not gluten free. Our kitchen and everything else under our control would now be adapted for Carson’s needs. He had his own cupboard of food, as well as things like his own toaster, stand up mixer, butter dish, separate jars of peanut butter and jam.

As Carson got older and began going to school they didn’t realize the impact that celiac disease had taken on him. They noticed that he wasn’t academically up the level of the other kids in his class, as Carson got celiac at the very early age of two. This is a very important age as children learn to walk and talk and a lot of development happens at this time. As his body was not receiving the nutrients he needed he was now behind the curve even though his body had recovered with his new diet. When he reached grade one his academic skills were not up to par…. yet. With good advice and guidance from his wonderful principal they were advised to put Carson back a year. It was a tough but right decision as he is thriving and doing well at school.

At school, camp, and play dates, they had to ensure his food was safe. Items such as play dough they found out were not gluten free. To keep Carson’s life as normal as possible, his mother made gluten-free play dough for him and sent it to school. Any obstacle like that they would deal with and find a solution. Each year they would send a letter to his teachers and classmates parents outlining and explaining what celiac disease is and what precautions need to be taken. They always had snacks for Carson that would be similar or the same as the other children kept at the school at all times. His lunch has always been sent along with him even though there were gluten-free offerings.

In Carson’s case of celiac disease, one crumb of gluten is too much as he will have severe reactions. When the family dines out, unfortunately there are far and few between truly gluten free places to go. This saddens Carson. Most places are “Gluten Friendly”. This does not work for people like Carson. He wishes he could go out to more places to eat. When they go out for dinner as a family, they either feed Carson first or bring something to eat from home or they pick up one item of Chinese food from one restaurant (that actually takes the time to ensure it is gluten free) along with his own cutlery and condiments like gluten-free soya sauce, ketchup and mustard.

When Carson goes to birthday parties and friends’ homes, they always make sure they send snacks with him. For birthday parties, Carson’s father makes him cupcakes that look and taste just like regular birthday cake.

Growing up they always taught Carson that he was different in that he couldn’t eat most of what other children were eating. He was taught at an early age to always ask someone who offered him food if it was gluten free and he would never take the chance of just eating something.

For the most part when he was really young he seemed to be okay with eating the status quo of gluten-free foods. But as he got older he would wish that he could eat things like a big mac just like everyone else. Sometimes it brought him to tears. For the family it was heartbreaking but they were determined to remedy this for him. His father made a sauce very similar to a Big Mac sauce that was gluten free. It was for him his first Big Mac. Carson really wishes that he could actually go to McDonalds and have one there. What most people take for granted in what they can eat, Carson dreams of eating one day. Even on fun occasions such as Halloween, Carson as most children love to go out trick or treating. But he knows that he can’t just eat all of the goodies he has acquired.

Family vacations for now are a little challenging. Carson prefers to go on road trips as they can bring along lots of his food that they store in the refrigerator they acquired for our car. They basically take a “mini-kitchen” with them containing things like a toaster oven, a pot to make pasta and a single burner element to cook on. Carson loves these trips and he is relaxed that he has his comfort food with him.

Today, Carson is ten years old. So far it has been an eight-year journey with celiac disease. He has come a long way. Have there been challenges and disappointments? Of course, but they believe Carson is learning to meet them and find solutions. Mom and dad are doing everything they can for their children. They are very proud to say he is a happy, intelligent, healthy kid who is thriving. Celiac disease with its challenges does not hold him back. He is doing well at school. His father and mother have documented all the recipes for him so that when he is a little older he will be able to make and continue to eat the foods he loves. But really above all his greatest wish one day is for a cure.

 

One disease; Three generations

Elizabeth:

In 1980 I was diagnosed with anemia and after a few weeks of B12 injections and no change in my hemoglobin levels, I was referred to a gastroenterologist. Many tests were done and finally an endoscopy was performed which confirmed Celiac disease.

It was a bit daunting at first as there were no gluten-free products on store shelves (except plain rice cakes!) but I could buy Celimix (a flour mix) from the 555 Shop (now the Specialty Food Shop) at Sick Kids Hospital. Back then, bread mixers were not common place and the bread that I produced was 1.5” in height, very dense and very crumbly. However, as I was used to baking at home, over the years, I’ve managed to make very tasty gluten-free muffins, cakes, cookies and even pies.

When first diagnosed, I was working and found it difficult to tell people I required a gluten-free meal if I had to go to a business meeting where food would be served, but I like to eat so I would call ahead to the restaurant or hotel and was always assured a gluten-free meal would be available.
When my daughter was diagnosed with Dermatitis Herpetiformis, it was a bit easier for her to adjust to the diet as she had grown up seeing me managing it and doing very well.

At first, I cooked separate meals but now my kitchen is fully gluten free. When family or friends come for a meal, everyone eats gluten free.

As soon as I was diagnosed, I joined the Toronto Chapter of the Celiac Association and began volunteering with them as well as at the National Office.

I thank the Canadian Celiac Association for all their help and support. They’ve always been there for me.

Lisa and Keely (daughter and granddaughter of Elizabeth Henderson):

It’s been over 27 years now since I have been diagnosed with Celiac disease and lucky for me, I did not have a hard time of it as my mother had been diagnosed approximately 11 years prior.

It started out with having extremely itchy white blisters on my elbows when I was around 25. I had been going to a Dermatologist to try to figure out what it was and had received some creams, but nothing was working. I remember one day my mom approached me in the basement with some trepidation and said, “I think I know what you have. I think it’s Dermatitis Herpetiformis. It’s connected to celiac disease.” She suggested I tell the doctor and get a punch biopsy. Turns out she was right.

Due to the family history, I went and had an endoscopy. The results were somewhat conclusive. It wasn’t the best time to receive the news as I was about to embark on a 16 months travel adventure around the world. Fortunately for me, my doctor suggested I not go on a gluten-free diet while travelling but to enjoy myself and then get retested upon my return. I was a healthy, athletic person and I did not have any of the ‘normal’ symptoms of celiac disease at that point. I was lucky in that I can only remember a few times of ‘distress’ while travelling.

Upon returning, I was retested and went on a strict gluten-free diet. I really did not have many issues with being diagnosed celiac. Having my mother pave the way and being a good cook was definitely an advantage. I grew up in a household were most meals were homemade – meat, potato, vegetable – not a lot of adjustment was needed. In my mind, there were a lot worse medical diagnoses one could have. At least this only required a diet change – no medication, no hospitals needed. I still went out a lot with my friends to restaurants and bars – I just asked a lot more questions

Fast forward to eight years ago. I’m married and have two children. Unfortunately, the auto-immune gene passed down and my daughter at the age of four was diagnosed with Type 1 Diabetes and less than a year later, with Celiac disease. I find myself getting emotional as I write this sentence. I now know how my mother felt diagnosing me. Although I have never blamed my mother for celiac disease (why would I given it is something we cannot control), the feeling of responsibility and guilt that I have in causing my own daughter to have a difficult life is overwhelming at times regardless of how irrational a thought it is.

Throughout the three generations of women in my family, the Canadian Celiac Association has been ever present. My mother volunteered endlessly at Head Office and still helps to this day. Many of you reading this might have in fact spoke to her if you called the Telephone Hotline. Back in the 80’s, there wasn’t a lot of information available and certainly very little gluten free options in the stores. The ladies on the Hotline were a lifeline to those newly diagnosed. I also volunteered for a short time with the Toronto Chapter trying to fundraise and get the word out about celiac disease.

My mother ensured I had an easy life living with celiac disease: The Canadian Celiac Association has made thousands of people diagnosed with celiac disease have an easier life. The tireless efforts of the thousands of volunteers and workers in this organization are to be applauded and applauded loud.

Samantha’s Story

Looking back, I felt I should have advocated more for my daughter, she’s eight now.  The fact that she has red hair and is fair skinned, made me- a registered nurse- I believe what she was suffering was just childhood sensitive stomach issues. Samantha has always been prone to constipation and stomach bloating, with constant stomach aches and headaches. When she was three years old we brought her to a pediatrician, who dismissed her constipation as “likely an anal fissure” and sent us on our way, with advice to get her to drink more. She would only have a bowel movement once a week. We continued to give her “PEG” laxative, a dose a day and encouraged drinking, good luck to anyone who tries this with a six-year-old who doesn’t like drinking. She would complain of constant stomach pains and nausea, along with headaches and sore joints.

In 2016 when we met our new GP who wanted a second opinion about her constipation. The new pediatrician who saw her requested some regular blood work and did some swabs. We got the results within a couple weeks, with a TTG of close to 250, and low iron. She also had a rectal strep infection, which we had always contributed red and sore rectal area to constipation. We went ahead and got the Fecal Calprotectin test done, which cost 110$ and the results were over 600. We were told they had never seen a level this high in celiac disease. We were in shock, I just remember crying on the phone when they mentioned “celiac disease” on the phone, I asked “what do I do?”. The receptionist who called responded by saying “I think she needs to go gluten free.”

Our new pediatrician called that night and explained we needed to keep her on gluten until children’s hospital could assess. Those five months of waiting and wondering, until we got the scopes, were so tough, knowingly keeping your child sick. Her endoscopy and colonoscopy were done late spring 2017, and she had +4 scalloping to upper intestine indicating celiac disease, with positive biopsies. Her colonoscopy was clear, thankfully.
We were able to immediately start the gluten-free diet, and my daughter was amazed at how much better she started feeling, less stomach aches, less headaches and nausea; however, the constipation remained. We have re done the fecal calprotectin level and this is now within normal range, as was her TTG- down under 10.

I must say I feel guilty all those years; seeing her swollen abdomen, and hearing her constantly complain of abdominal pain and nausea and responding, “just go to the bathroom”, hindsight is 20/20. She would lie in her bed, crying in pain and feeling like she was going to vomit. We continue to muddle our way through gluten-free lifestyle for her (not our whole household), and the biggest challenge we run into is cross contamination. I want to offer any parent or guardian, with potential diagnosis of celiac for their child, encouragement that it’s going to be ok. It is disease you can manage with a lifestyle change and it’s worth it. I feel that we are quick to brush off “constipation and stomach pain” in young children without doing any investigations. I’m beyond thankful to my new GP, Dr. A Mortimore, and pediatrician Dr. J Cohen, for their thorough assessment and careful examination to lead to answers to better my daughter’s quality of life!

Ottawa Tourism and Restaurants

Downtown Ottawa

Ottawa is one of Canada’s top tourist destinations, especially in the summer, and we encourage you to take advantage! The conference is in the heart of downtown, and you’re just steps from:

Tourism Sites

The Byward Market, a rollicking public market that, in its 200-year history, has played host to artisans, farmers and craft merchants who converge year round to sell their speciality items and wares. It also houses numerous cafés and some of the city’s best pubs and restaurants, and in the evening is a great spot to grab a late night drink and catch some live music.

Parliament Hill, the home of Canada’s national government and the setting for national celebrations year-round.

The Rideau Canal, a historic waterway filled with boaters and excitement, always a great place for a beautiful stroll.

The National Arts Centre, the capital’s premier performing arts venue, with a full lineup of music, dance and theatre, plus popular touring acts and shows.

The Rideau Centre, Ottawa’s largest and busiest shopping mall, with stores and boutiques to suit all tastes!

An array of fascinating museums, including the Museum of Nature, the National Gallery of Canada, the War Museum, the Bank of Canada Currency Museum, and the Canadian Museum of History.

And much more!

In downtown Ottawa, you can also enjoy Ottawa River boat tours, tours of the Rideau Canal locks, downtown walking tours, an Indigenous walk, and more. Throughout the city, you’ll find exciting options, including the Garden Promenade, a Haunted Walk, the serene Dow’s Lake,  and even beaches at Britannia and Mooney’s Bay. Outside of Ottawa, you can discover the natural beauty of Gatineau Park, or perhaps take a tour of a Prince Edward County winery!

Restaurants

Ottawa features a number of restaurants where you can enjoy delicious, gluten-free fare. Check out the Ottawa chapter website for a comprehensive list.

Of particular interest, please check out Olive & Chili, in the Byward Market. Not only this restaurant totally gluten free, but you enjoy a discount with your CCA membership card! To see other restaurants and businesses where a CCA membership card will get you a discount, please visit Ottawa Chapter Discounts.

For any questions, please contact us at info@ottawaceliac.ca. The CCA’s Ottawa Chapter would like to thank Ottawa Tourism for helping with conference promotion.

Staying heart healthy and gluten-free

Here are some tips on how to take care of your cardiovascular health at the same time you recover and thrive from your celiac disease. Having celiac disease can make healthy eating a challenge. The dietary restrictions of a gluten-free diet, and the symptoms from recently diagnosed celiac disease, can make it difficult to choose healthy dietary options and maintain physical fitness.

Contributor: Dr Jennifer Zelin is a family doctor practicing in Charlottetown, Prince Edward Island. She has a special interest in celiac disease and is a former recipient of the JA Campbell Young Investigators Award and currently participates on CCA’s Professional Advisory Committee.

 

 

CCA National Board seeks directors for 2018-2020 term

Call for Nominations – CCA Board of Director

The Canadian Celiac Association (CCA) is seeking nominations for its the national board of directors for the July 1, 2018 to June 31, 2020 term.

Nominations Close:                March 5, 2018

Who are we?

Since 1972, the Canadian Celiac Association (CCA), a national not-for-profit charity, has been the national voice for people who are adversely affected by gluten, and is dedicated to improving diagnosis and quality of life. In addition to a small national office located in Mississauga, Ontario, CCA is supported by support groups and chapters across Canada serving members locally.

Our Vision:                              The Gluten Solution – Find, Treat, Cure.

Our Values:                             Science based, integrity and compassion

Is this role for me?

We need you to be ready to:

Are you the candidate for us?

Interested candidates seeking information or to apply, please contact Nomination Chair, David Congram at david.congram3@sympatico.ca

In addition to completing the 2018 CCA Board-Nominee-Form, please include a cover note along with your resume by March 5, 2018.

 

I Luv GFCP Contest Details

February 12 – 18, 2018 – We’ve extended the love to Sunday!

 

Show us your love of our Gluten-Free Certification Program (GFCP) partners and products!

 

How to participate:

Step 1: Take a photo of your favourite GFCP products or partners

Step 2: Post your photo using the hashtag #ILuvGFCP  and tag @CCAceliac on your Twitter or post to CCA’s public Facebook page to be eligible for the contest. Be sure to LIKE us while you are there!

The more photos you post, the more chances you’ll have to win.

Two winners, one from Facebook and one from Twitter, will be drawn for a prize based on eligible posts. We’ve added a special prize for our CCA members via email. Only members can send us their favourite GFCP brands to communications@celiac.ca with: I Luv GCP in the subject line.

Prizes: One of two gift boxes valued at $100 each filled with GFCP partner products courtesy of CCA and the Gluten-Free Certified Program (GFCP).

Contest Conditions and Rules of Entry

Canadian Celiac Magazine

Canadian Celiac is published three times per year – February 1, May 1 and November 1 – exclusively for CCA Members.

The magazine is available as a downloadable pdf file. Content pages can be printed onto letter-sized paper.  If you need Adobe Reader, you can download a free here.

2018

2017

Conference Vendor Opportunities

Are you a vendor of gluten-free foods or other products that are important for our community? We would love to have you host a vendor booth at our 2018 National Conference taking place June 9, 2018 at the Shaw Centre in the heart of downtown Ottawa, Ontario.

The conference will include a line-up of fascinating speakers to bring the latest from the world of research in celiac disease and gluten sensitivity, and we always complement our conference with a vendor fair, where businesses from across the country and beyond sample and sell their gluten-free products. Conference delegates will have complimentary access to the food show, and it will also be open to the general public for most of the day. As it’s been years since Ottawa has seen such an event, we are expecting a big and enthusiastic crowd!

We have prepared several sponsorship/vendor options to as best as possible meet all budgets and business needs. Don’t miss this opportunity to showcase your products to this highly targeted, highly engaged and highly hungry audience! By supporting our conference, you are helping to make Canada a better place for those who have to eat gluten free.

To learn more or to become a vendor, please see our 2018 CCA Sponsorship Package. Fill out the form and send it in to us to secure your vendor space! For questions, please contact info@ottawaceliac.ca.

Conference Sponsorship Opportunities

Sponsoring the national conference of the Canadian Celiac Association carries numerous benefits.

We offer a range of sponsorship options to suit all budgets.

To learn more or to become a sponsor, please see download our 2018 CCA Sponsorship Package. Becoming a sponsor is as easy as filling out the form and sending it in! For questions, please contact info@ottawaceliac.ca.

Hotel Accommodations

The conference takes place at the Shaw Centre in the heart of downtown Ottawa. There are many hotel options within easy walking distance.

CCA has arranged for a block of rooms at the Novotel (a few minutes walk) at $189 per night, which is very low for that time of year. If you wish to take advantage of that rate, please book ASAP as we expect them to go quickly! Please quote code 571201 with the Novotel. Their phone number is 1-855-677-3033 and the website is www.novotelottawa.com.

You can also search on your own for a hotel or an airbnb in the area. The Shaw Centre is very easily reached by many bus routes from across the city, so if you choose to stay outside of the downtown core, staying near one of the major bus routes is a good idea (routes 61, 62, 85, 86, 87, 94, 95, 96, 97, 98 and 99 especially) for easy access to the conference.

From the airport, you can get to the Shaw Centre direct on the route 97 bus. From the train station, you can get to the Shaw Centre direct on routes 61 or 62 (westbound from the train station). Get off at the Mackenzie King stop.

Email us with any questions about that info@ottawaceliac.ca.

2018 CCA Conference Schedule at a Glance

Last Updated: January 14, 2018

Friday, June 8, 2018

5 – 6 pm 

CCA National Professional Advisory Council Meet & Greet Donor Reception  & Q&A  (By invitation only)

6 – 7:30 pm

CCA Professional Advisory Council Panel (Open to all conference attendees) 

Sponsored by CCA National

Saturday, June 9, 2018

7 – 8 am     Buffet Breakfast

8– 8:15 am    Opening Remarks

8:15 – 9 am  – TBA

9 – 10 am

Topic: Neurological manifestations of celiac disease: What’s the latest?

 Speaker: Dr. Marios Hadjivassiliou, University of Sheffield 

10 – 10:30 am

Health Break + Visit Gluten-Free Vendor Fair (opens to public at 10:30 am)

10:30 – 11:15 am 

Topic: Evidence-based Holistic Approaches to Celiac Disease Management

Speaker: Dr. Justine Dowd

11:15 – noon        

Topic: Working to ensure your beans, grains and lentils are safe

Speaker: Frank Massong – AAFC Project

Noon – 1:15 pm       Lunch

1:15 – 2 pm 

Topic: The celiac epidemic – what’s going on?

 Speaker: Dr. Joseph Murray 

2– 2:30 pm

Topic: Labelling regulations in Canada – How does it work?

Speaker: Michael Abbott, Health Canada 

2:30 – 3 pm    Health Break + Visit Vendors (closes at 4 PM)

3 – 3:45 pm

Q&A Panel – Drs. Hadjivassiliou, Murray, Dowd, and TBA

3:45 – 4:15 pm

Topic: Gluten-free, nut-free, vegan and delicious? How can it be done?

Speaker: Strawberry Blonde Bakery

4:15 – 4:45 pm

Topic: CCA National Update

Speaker: Melissa Secord, Executive Director

4:45 – 4:50 pm  Closing Remarks

6:00 – 8:30 pm Gala Dinner (6:00 cocktails, dinner served at 6:30)

Click here to register today.

Schedule is subject to change.

Gluten-free as a New Year’s Resolution? Think twice!

January 16, 2017 (Mississauga, ON)

With the onset of “New Year’s Resolution” season, the Canadian Celiac Association is cautioning Canadians to look before they leap when it comes to adopting the gluten-free diet.

Gluten-free baked products, such as bread, cookies, muffins and cakes, tend to contain more sugar and unhealthy fats and, generally speaking, are lower in fibre and key minerals and nutrients. In Canada, wheat-containing products tend to be nutrient-enriched; this is not typically the case for gluten-free alternatives.

” Going gluten free is a major lifestyle change; it greatly impacts how you shop, how you dine out, and how you approach potlucks, family dinners, and parties.” says Anne Wraggett, president of the CCA. ” There are a lot of rumours out there, especially online, glorifying the gluten-free diet, but the simple fact is that this diet should only be undertaken if there is a medical need to do so.”

For people with celiac disease or non-celiac gluten sensitivity, the gluten-free diet is a necessity and must be strictly followed; to ingest gluten can make us very sick and, in the long term, may lead to intestinal cancer.

The gluten-free diet is not one to be undertaken lightly. It should be adopted only if required, and with the guidance of a registered dietitian.

The Canadian Celiac Association, the national voice for people who are adversely affected by gluten, is dedicated to improving diagnosis and quality of life. For more information, please visit www.celiac.ca

For more information:

Melissa Secord, Executive Director
1-800-363-7296 X 226, Melissa.secord@celiac.ca

 

Conference Registration

Join our Growing Gluten-Free Momentum! Register for THE conference for celiac disease and gluten sensitivity.

Space is limited so reserve your spot today! CCA Members have access to discounted rates.

Early Bird Rates: By April 30

Members: $80        Non-member: $135

Regular Rates: May 1 onward

Members: $135       Non-member: $190

 

We are pleased to offer two registration options:

Questions? Contact us at info@ottawaceliac.ca.

We look forward to seeing you there!

 

 

 

Gluten-free Featured Recipe of the Month

 

Sue Jennett’s GF Granola

Provided by CCA’s Kingston Chapter President. For over 10 years, Sue has operated her own GF bakery and hosts a local cable TV show. You can learn more about her recipes and baking at www.suesglutenfreebaking.com.

7 cups Gluten Free Oats

½ cup Oat Bran                      

½ cup Feather strip Coconut

1 cup Walnut pieces

1 cup Slivered almonds

½ cup Pumpkin seeds

1 cup Liquid Honey

½ cup Vegetable Oil

1 cup Raisins

In a large roasting pan stir oats, oat bran, coconut, walnuts and almonds.  Mix honey with oil in a measuring cup till well blended.  Pour over oat mixture and stir till well combine. Bake at 250˚ for 2 ½ hours, stirring every 20 minutes.  Add raisins for last ½ hour.  When removed from oven, let cool completely and pack in air tight container or plastic storage bags

Variations:  Add ground flaxmeal, change up the nuts by using pecans or using sliced almonds, add maple flavouring to honey mixture.

 

Annual Reports

At the CCA, we are focused on building resources and research that create value for consumers, medical professionals, and food manufacturers.

Watch for our 2017 Annual Report coming June, 2018.

CCA National Conference

When: Saturday, June 9, 2018

Where: Shaw Centre, Ottawa, Ontario

 

Registration now open – click here!

 

The Ottawa Chapter of the Canadian Celiac Association (CCA) is pleased to invite you to our beautiful city for the 2018 national conference of the CCA. From the luscious grounds of Parliament Hill to the charm of Dow’s Lake and Gatineau Park, and from the amazing restaurants of the Byward Market to the beauty of the majestic Rideau Canal, Ottawa has lots to offer.

The conference is taking place on June 9, 2018, at the spectacular Shaw Centre in the heart of downtown Ottawa, just steps from the Byward Market, Parliament Hill and the Rideau Centre.

The conference will feature a gluten-free vendor fair along with some exciting speakers from the fields of gastroenterology and neurology, as well as gluten-free food manufacturing, and more.

A Canadian Celiac Podcast interviewed Ottawa Chapter president Mark Johnson about the upcoming conference. Take a listen and learn all you need to know! http://acanadianceliacpodcast.libsyn.com/episode-11-mark-johnson-and-the-cca-conference

Don’t miss your chance to learn the latest from the fascinating field of research into celiac disease and other gluten-related disorders!

We hope to see you there!

 

Register Today – Click link to register

Sponsorship

Vendor Opportunities

Tourism and Restaurants

Conference Schedule

Accommodations

 

Traditional Sage Stuffing

1 large onion chopped
1 cup diced celery
½ cup butter
2 tbsp sage
1 tbsp savory
1 tbsp thyme
1 tbsp dried parsley
8 cups cubed bread
1 ½ – 2 cups  chicken broth
2 tsp salt
1 tsp pepper

In large frying pan melt butter and sauté onion and celery.  Once the onion and celery soften, add seasonings and parsley.  Pour over cubed bread in large bowl.  Pour broth into pan to deglaze and pour over the bread mixture.  Stir until well blended.  Place in a casserole dish, cover and bake at 350° for 1 ½ to 2 hrs.

 

Anne’s Quick and Easy No-Bake Cookies

4 squares of semi-sweet chocolate
½ cup slivered almonds
½ cup sweetened shredded coconut
2 Tbsp GF graham-type cookie crumbs

Line a cookie sheet with parchment or waxed paper. Melt the chocolate. Add the remaining ingredients and stir to coat with chocolate. Scoop mounds of the mixture with a spoon and push them onto the baking sheet. Chill about 20 minutes until firm.

Contributor: Anne Wraggett is the CCA National President

Sue’s Sugar Cookies

2 cups white rice flour
2/3 cup potato starch
1/3 cup tapioca starch
1 tsp guar gum
¼ tsp salt
1 cup white sugar
1 cup butter
2 egg yolks
1 ½ tsp vanilla

Combine sugar and butter in mixer bowl, beat on medium speed until creamy.  Add egg yolks and vanilla.  Add flour blend and salt.  Beat on low speed until well mixed.  Portion out and wrap in plastic wrap and refrigerate for 1 hour or until firm.

Heat oven to 350°

Roll out dough to ¼ inch thickness, cut with cookie cutters and place on parchment lined cookie sheets. Bake 8-12 min until edges are lightly browned.

Contributor: Sue Jennett is a past president of the CCA’s Kingston Chapter.

Festive Tips and Giveaways

Follow us on social media throughout December using #FestiveGF for holiday tips and partner giveaways. See details below!

Details: December 11 – 15, 2017. Open to Canadian residents only except for Quebec residents.

How to participate:

 

Daily Festive Partners

 

Contest Conditions and Rules of Entry

Winners must agree to the following contest rules:

Holiday Survival Guide

Download your copy here.

The season is upon us! Stores started sprouting Christmas trees even before Halloween was over, lights and decorations are appearing everywhere, magazines brim with gorgeous decorating ideas, calendars are filling up with holiday parties and events, and …

oh … there’s all that food that isn’t gluten-free.

Are the holidays all about the food? It sometimes feels like it. This Holiday Survival Guide is the CCA’s gift to you and is chock full of our experts’ best ideas to help you cope with a joyous season that can be stressful and emotional as well as being a challenge for those who must eat gluten free.

 

For immediate release: Gluten-free claim to be removed from General Mills Cheerios sold in Canada

 

The CCA retracts its statement of October 20, 2017 and replaces it with this statement due to errors in the original statement.

October 26, 2017 (Mississauga, ON) The Canadian Celiac Association (CCA) has learned that the words “gluten-free” will be removed from all Cheerios packages sold in Canada commencing January 2018.

The Canadian Celiac Association first objected to the claim in August 2016 and strongly recommended that people with celiac disease not consume the cereal, even though the box was labelled “gluten free.”

“We are delighted to hear the claim will be removed voluntarily from the packages”, said Melissa Secord, Executive Director of the Canadian Celiac Association. “We support the General Mills decision to make this voluntary move. Based on the advice of the members of our Professional Advisory Council (PAC) and other professionals working in the field, we believe that there is not adequate evidence to support the current gluten-free claim.”

The CCA will continue to work with industry and government to ensure access to safe foods for people with celiac disease and gluten sensitivities.

The CCA received a grant from Agriculture and Agrifood Canada to examine the scope of gluten contamination in oats, pulses and other grains grown in Canada, and to determine where the contamination occurs as the grains are processed (field, harvest, transport, processing). The project is scheduled to be completed in March 2018.

Celiac disease is a medical condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. This results in an inability of the body to absorb nutrients: protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health. People with celiac disease can experience symptoms such as vomiting, diarrhea, nausea and/or migraines.

Gluten is a protein found in wheat, rye, triticale and barley. In the case of wheat, gliadin has been isolated as the toxic fraction. It is the gluten in the wheat flour that helps bread and other baked goods bind and prevents crumbling. This feature has made gluten widely used in the production of many processed and packaged foods.

The Canadian Celiac Association, the national voice for people who are adversely affected by gluten, is dedicated to improving diagnosis and quality of life. For more information, please visit www.celiac.ca.

For more information:

Melissa Secord, Executive Director                                       

1-800-363-7296 X 226, Melissa.secord@celiac.ca

Sue Newell, Manager, Education and Special Projects

1-800-363-7296 X 224,  sue.newell@celiac.ca

CCA Privacy Policy

Canadian Celiac Association (CCA) respects the privacy of people with celiac disease (CD) and dermatitis herpetiformis (DH) and those who choose to eat gluten free for health reasons: our members, donors, employees, volunteers, the public and other stakeholders in all that we do. Their personal information IS protected. Policies are in place to ensure this.

The following are those policies and practices.

  1. We record the personal information you share with us including name, address, date of birth, telephone and fax number(s) and e-mail address.
  2. We share this information with the chapter with which you will be affiliated.
  3. We will use this information to communicate with you with newsletters, fundraising requests etc.
  4. We do not share this information with any other individual(s) or organization(s).

CCA’s Privacy Policy Statement

CCA is committed to protecting and maintaining the confidential information entrusted to us by our celiac disease members, donors, employees, volunteers, public and other stakeholders. We will maintain that trust with all information shared with us. This applies to any inquiries about CD & DH, the gluten-free diet, membership, research data, volunteering, and fund raising. It pertains to any information that can be used to distinguish, identify or contact a specific individual. Safeguards are in place to ensure that information will not be shared more widely than for the purpose for its original intent. The exception is business contact information and other publicly available information, which is not, considered personal information.

We gather contact information to serve our membership through postal and electronic mailing in order to inform, advise and update them on CCA’s work toward achieving our mission.

While we are committed to confidentiality, CCA cannot guarantee that confidentiality when faced with court requests for contact information.

We commit to a regular review of our Privacy Policy and to update it as deemed necessary by our Board of Directors.

Web site

If you send us e-mail, you may choose to provide us with the personal information, as in e-mail with a comment or question. We use the information to improve our service to you or to respond to your request. Except for authorized law enforcement investigations, we do not share your e-mail with any outside individual or organization.

If you do nothing during your visit but browse through the web site, read pages, or download information, we will gather and store certain information about your visit automatically. This information does not identify you personally.

We automatically collect and store only the following information about your visit:

We use the information we collect to count the number and type of visitors to the different pages on our site. This data helps us make our site more useful to visitors like you.

Our Web site has links to partners and other sites. When you link to another site, you are no longer on our site and are subject to the privacy policy of the new site.

Disclaimer and Exclusion of Liability

The information provided in this website and in all of our printed materials has been compiled and published in good faith using all reasonable efforts and the most current information available. However, more recent information may have become available which may make the information obsolete, incomplete or inaccurate. As a result, the information provided is subject to amendment.

Also, the information provided in this website and in all of our printed materials cannot replace consultations with qualified health-care professionals and nutritionists to meet your individual medical needs. You should not rely on this information as a substitute for professional medical and nutritional advice or recommendations. You should always seek the advice of a qualified health care professional with any questions you may have.

Use of the information contained in this website and in all of our publications is at your own risk. To the fullest extent permitted by law, the Canadian Celiac Association (the “CCA”), its local chapters (“Chapters”) and all persons involved in compiling this the information in our website and in all of our publications DISCLAIM any responsibility whatsoever for the information provided, make no representations and warranties and disclaim any and all express, implied or statutory warranties and conditions regarding the information provided including, without limitation, any and all warranties that the information is accurate and up-to-date.

In no event will the CCA, its Chapters, or those persons involved in compiling this website and all of the publications be liable, based on any legal theory, for any damages of any kind, howsoever caused, resulting from the use of this information including, without limitation, for any error or misstatement that may exist within this website and all of the publications (including in any advertisements, due to an error by the advertiser, vendor, manufacturer, a third party, or otherwise).

Webmaster

For any other issues regarding our website, please email our webmaster at webmaster@celiac.ca.

Our New Brand.

Our new brand identity is hopeful, trustworthy and knowledgeable, with a modern palette of bright and friendly colours combined with fresh, inspiring imagery. The core concept of the new brand and logo is that the CCA is here to help members regain power over every aspect of their lives.

Our new logo and branding represent a unified, modern voice for all Canadians suffering with Celiac disease and living gluten free. With increased research incentives powered by our donors, community networking, and mutual support, we are regaining power over our disease, our bodies, and our lives. The Canadian Celiac Association provides a singular, reliable resource of information not only for Canadians living gluten free, but for their families and health care providers.

 

CONTENT NEEDS TO BE PROVIDED

Ravi de vous rencontrer.

L’Association canadienne des coeliaques / L’Association canadienne de la maladie coeliaque est un organisme de bienfaisance enregistré par le gouvernement fédéral et possédant son bureau national à Mississauga (Ontario). Il a été fondé en 1972 avec l’aide financière de la Fondation Kaufman. L’association a été créée par deux femmes de Kitchener, en Ontario, qui, d’après l’expérience personnelle de la maladie cœliaque, ont reconnu les besoins vitaux des personnes atteintes de la maladie.

Les objectifs initiaux étaient de fournir des informations sur les sources d’aliments sans gluten, de favoriser la recherche et d’encourager le soutien mutuel chez les coeliaques. Aujourd’hui, l’association sert des personnes atteintes de maladie cœliaque et de dermatite herpétiforme à travers 28 chapitres affiliés et 30 groupes de satellites partout au Canada.
Le C.C.A. est régie par un conseil d’administration national élu avec une représentation régionale à travers le Canada. Le Conseil élabore des politiques et des stratégies pour l’association et fournit des conseils et des conseils aux chapitres. Les chapitres sont des organismes de bienfaisance dont chacun est régi par un comité exécutif élu. Le bureau national compte deux personnes à temps plein et deux personnes à temps partiel.

Apprenez à connaître notre équipe de bureau.

Directeur général: Melissa Secord
Directeur, Éducation et projets spéciaux: Sue Newell
Directeur, Membre national: Jacqueline Petrie
Information et administration: Lisa Triggs
Coordonnateur, Comptabilité: Nisha Paul

CCA response to CFIA Beer Consultation

In July 2017, the CCA was invited to comment on our concerns with beer labelling. Members of our Professional Advisory Council prepared a response on behalf of the CCA Board of Directors.

Here are the three recommendations made:

Recommendation 1

The Canadian Celiac Association strongly recommends that the names of all gluten sources, priority allergens and added sulphites, when used in standardized beers, be declared on each individual container of beer as well as the outside packaging of these products.

Recommendation 2

To avoid misleading consumers, the Canadian Celiac Association recommends the use of the term ‘gluten- free beer’ for beer-type beverages that utilize gluten-free grains and ingredients such as sorghum, millet, rice, etc.

Recommendation 3

Beers made with malted barley and a special clarifying agent should not be lablelled “gluten-free beer” because the clarifying agent interferes with the accuracy of the R5 Competive ELISA that detects gluten contamination.

If you would like to read the complete response, please see contact us.

Public Health Alert: Deep Frying & Gluten

The myth that frying wheat products makes them gluten-free is endangering people with Celiac disease.

Numerous chefs report being told that frying something made with wheat changes the protein so that it is safe for someone with Celiac disease, and this is concerning to CCA.

People often liken the frying process to cooking an egg. In the case of an egg, frying it changes the colour and structure of the egg. While heating gluten in a fryer does change the structure of the gluten protein, it does not make it safe for someone with Celiac disease.

“The protein must be completely broken into tiny pieces to make it safe for someone with Celiac disease,” says Sue Newell of the Canadian Celiac Association (CCA). “There are no chemical processes that have been confirmed to do that for gluten in food.”

There is some debate about the exact temperature for this complete breakdown, with a suggestion that heating the food to 315°C (600°F) for 30 minutes may be sufficient; however, at that point the food is totally inedible.

The Canadian Celiac Association recommends that people with Celiac disease and gluten sensitivities avoid any food cooked in oil that has also been used for wheat-based products.

Notice about GF Cheerios

General Mills Canada announced last week that five Cheerios flavours sold in Canada will carry a glutenfree claim. Original Cheerios, Honey Nut Cheerios, Multi-Grain Cheerios, Apple Cinnamon Cheerios and Chocolate Cheerios will be rolled out across the country in August. The Canadian Celiac Association (CCA) held a conference call with representatives of General Mills Canada and General Mills US on August 2nd 2016 to discuss our concerns with the gluten-free label on these products.

Recommendation

The Canadian Celiac Association (CCA) recommends that people with celiac disease or gluten sensitivity DO NOT consume the gluten-free labeled Cheerios products at this time because of concerns about the potential levels of gluten in boxes of these cereals. The CCA is receptive to evaluating any additional information that General Mills is willing to disclose.

Why is the CCA concerned?

Oats are a naturally gluten-free grain; however, it has been documented that oats are frequently cross contaminated with gluten-containing grains, especially barley and wheat. Health Canada scientists have tested commercial oat samples and found high levels of gluten contamination (note 1). Cross contamination can occur because oats often are grown in rotation with other crops, harvested and transported with equipment that is also used for gluten-containing grains.

We know the following:

1. Oats are an extremely high risk grain and even “gluten-free oats” are at high risk for gluten contamination.

2. It is very difficult to remove gluten-containing grains from oats using optical and mechanical technology alone because barley and wheat are similar in size, shape and color as oats. Broken kernels present in the grain also add to the sorting challenge.

3. General Mills is using a cleaning system that they developed based on mechanical sorting to remove barley and wheat from regular commercial oats.

4. Gluten contamination in oats is not distributed evenly through a batch; therefore, “hot spots” of high contamination can occur. Based on the information provided to date, our scientific advisors are not convinced that the testing procedures described by General Mills are sufficient to detect these contamination “hot spots” in the oats and oat flour or in the boxes of cereal that may contain those contaminated oats. As a result, some boxes of cereal in the market may be safe for people with celiac disease while others contain significant gluten contamination that has not been detected using current testing protocols. The CCA is receptive to evaluating any additional information that General Mills is willing to disclose. Until then, the CCA stands by its advice that people with celiac disease or gluten sensitivity should not consume Cheerios products in spite of the gluten-free claim.

CCA’s Position on the Safety of Oats

The CCA relies on advice from our Professional Advisory Council (PAC) and other scientific experts for recommendations on the safety of oats for people with celiac disease. The PAC “Position statement on consumption of oats by individuals with celiac disease” indicates the need for evidence-based, peer reviewed, published data that demonstrates the levels of gluten in oats that have been cleaned using mechanical and/or optical sorting procedures (Note 2).

There are three product brands currently on the market made with gluten-free oats that are manufactured in facilities certified by the CCA’s Gluten-Free Certification Program (GFCP):

 Holy Crap Plus Gluten Free Oats

 Quaker Oats (several types)

 Nairn (several products)

These companies have demonstrated to independent parties, trained GFCP auditors and GFCP technical personnel, that both their processed oats and finished products meet Health Canada’s standard for gluten free and are safe for individuals with celiac disease.

What if I eat Cheerios and have a problem?

We realize that some people with celiac disease will decide to eat Cheerios. The CCA recommends that if you experience a reaction to the cereal, you should notify the Canadian Food Inspection Agency (MAPAQ in Quebec), General Mills Canada, the store that sold you the package and the CCA.

Canadian Food Inspection Agency (all provinces except Quebec) http://www.inspection.gc.ca/food/information-for-consumers/report-a-concern/contactus/eng/1390269985112/1390346078752

MAPAQ (Quebec only) http://www.mapaq.gouv.qc.ca/fr/Restauration/Qualitedesaliments/Pages/plaintes.aspx

General Mills Customer Service http://consumercontacts.generalmills.com/ConsolidatedContact.aspx?page=http://www.lifemadedelicious.ca&js=True&language=en

Canadian Celiac Association: Email (info@celiac.ca) or Facebook (https://www.facebook.com/CCAceliac/)

Please keep the remainder of the cereal package and any unopened boxes purchased at the same time until it is clear whether CFIA is interested in testing the package for gluten.

How do I help get the message out that “gluten free” must mean “safe for celiac disease”?

This is an issue of significant concern to the Canadian Celiac Association.

1. Contact General Mills Canada Customer service and tell them that you would like to eat Cheerios, but not until you are sure the product is safe for people with celiac disease. http://consumercontacts.generalmills.com/ConsolidatedContact.aspx?page=http://www.lifemadedelicious.ca&js=True&language=en

2. Contact Health Canada (Bureau of Chemical Safety) and tell them that you want “gluten free” to mean “safe for people with celiac disease” so that you do not have figure out if the test protocols used by a particular manufacturer are adequate to detect gluten contamination. Please copy the CCA on your messages to Health Canada. http://www.hc-sc.gc.ca/contact/fnan/hpfb-dgpsa/bcs-bipc-eng.php

Notes:

1. Health Canada study of oat levels in commercial oats available in Canada. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3118497/

2. Canadian Celiac Association Professional Advisory Council position statement on consumption of oats by individuals with celiac disease. http://www.celiac.ca/?page_id=2831

Canadian Celiac Association Professional Advisory Council position statement on consumption of oats by individuals with celiac disease

The safety of oats in individuals with celiac disease has been extensively investigated. Health Canada has reviewed the clinical evidence from numerous international studies and has concluded that the consumption of oats, uncontaminated with gluten from wheat, rye or barley, is safe for the vast majority of patients with celiac disease. A 2015 review entitled Celiac Disease and Gluten-Free Claims on Uncontaminated Oats is available on Health Canada’s web page Celiac Disease and Gluten-Free Claims on Uncontaminated Oats

Most commercially available oats in North America are contaminated with gluten-containing grains (wheat, rye, barley). This has been confirmed in various studies including one by Health Canada scientists.

We are fortunate in Canada and the USA that specially-produced pure, uncontaminated oats have been available in the marketplace for many years. These oats are grown on dedicated fields; and are harvested, stored, transported and processed in dedicated gluten-free facilities. In addition, they are accurately tested for their gluten content to be under 20 ppm. This entire process is often referred to as a purity protocol.

Health Canada’s Food and Drug Regulations include oats, along with wheat, rye, barley in the list of gluten-containing grains, so even pure, uncontaminated oats were prohibited from making a gluten-free claim. However, on May 29, 2015, the Minister of Health issued a Marketing Authorization that permits the use of gluten-free claims for specially produced oats and foods containing these oats as ingredients. The Marketing Authorization provision allows for an exemption from the Food and Drug Regulations provided these oats do not contain more than 20 parts per million (ppm) of gluten from wheat, rye, barley or their hybridized strains.

Health Canada does not specify the methods or controls oat producers should use in order to meet the Marketing Authorization requirements. Many producers of gluten-free oats use the purity protocol which has been proven to be effective. Some producers may use other methods such as mechanical and/or optical sorting to remove gluten-containing grains from oats rather than a purity protocol. The Professional Advisory Council is not aware of any published North American data that demonstrates the levels of gluten in oats that have been cleaned using mechanical and/or optical sorting.

The Marketing Authorization and other important information about oats can be found on Health Canada’s web page Gluten-Free Labelling Claims for Specially Produced Oats.

The Canadian Celiac Association supports Health Canada’s decision to allow gluten-free claims for specially produced gluten-free oats and products containing such oats. Also, the Professional Advisory Council recommends the following guidelines for individuals with celiac disease and other gluten-related disorders who wish to add pure, uncontaminated oats or oat products in their diet:

  1. The individual should be stabilized on the gluten-free diet and their celiac antibody levels should have normalized. This process may take 6-18 months, although there is considerable variation among individuals.
  2. The fibre content of an oat containing diet is often higher than the typical gluten-free diet. When adding oats to the diet, individuals may experience a change in stool pattern or mild gastrointestinal symptoms, including abdominal bloating and gas. These symptoms should resolve within a few days. Therefore, it is advised to start
    with a small amount of oats per day [adults 25-70 grams (1/4-3/4 cup dry rolled oats) and children 10-25 grams (1/8-1/4 cup)] and gradually increase as tolerated.
  3. There are case reports of individuals with celiac disease relapsing from the consumption of pure, uncontaminated oats. Individuals should be aware of this possibility. If symptoms occur and/or persist, they should discontinue consuming oats.
  4. If a reaction to oats has occurred, it is worthwhile to do a re-challenge if the individual wants to try oats again. Development of symptoms at the time of the second challenge would strongly suggest intolerance to oats. Research suggests that intolerance to oats occurs but is quite rare. The mechanism for this intolerance is unknown at this time.
  5. A consultation with a dietitian who can carefully review the diet to ensure that the individual is not consuming foods that contain gluten is highly recommended.
  6. If a reaction occurs with a re-challenge of gluten-free oats, notify your physician, as well as the Canadian Food Inspection Agency (CFIA) about the reaction. The CFIA requires contact information of the individual, brand name, package size, UPC code, best before date, name and address of store where product was purchased, date of purchase and concern. See www.inspection.gc.ca or call 800-442-2342. The Canadian Celiac Association would also appreciate notification about the product details at askthecca@celiac.ca
  7. The safety of oats in non-celiac gluten sensitivity has not been studied. The Canadian Celiac Association will continue to monitor the scientific developments in the area of oats in celiac disease and other gluten-related disorders and will keep its members updated.

Professional Advisory Council
Canadian Celiac Association
May 29, 2015

Gluten-Free Food Program for Restaurants

Dedicated facility logo                                   Verified facility logo                                    Smart trained facility logo

MISSISSAUGA, ON, May 8, 2017 /CNW/ – The Canadian Celiac Association, Fondation québécoise de la maladie coeliaque, and Gluten-Free Food Program Inc. have joined forces to create and promote the new industry standard for the celiac community.

The Gluten-Free Food Program Inc. (GFFPI) is pleased to announce the launch of its GF-Smart, GF-Verified and GF-Dedicated programs for the food service and hospitality industry. The Gluten Free Food Program (GFFP) has been developed with the endorsements from the Canadian Celiac Association (CCA) and Québec-based Fondation québécoise de la maladie coeliaque (FQMC); Canada’s two authoritative voices for those living gluten-free. This program will serve to improve the dining-out options for those suffering from a gluten-related medical disorder, by arming the food service and hospitality sector with standardized professional training, management systems and best practices.

Over 2.5 million Canadians are affected by gluten and need a consistent hospitality sector standard. Operators serving food on a commercial basis may choose or be required to provide a gluten-free menu option. The GFFPI has developed professional standards to serve the gluten-free population, including restaurants, caterers, camps, hotels, convention centers, healthcare and educational institutions, cafés, and fast food outlets.

“Gluten-free diners are looking for dining options that are safe,” says Anne Wraggett, CCA President. “They often fear eating out due to negative past experiences and lack of consistency throughout the hospitality sector, increasing the risks of consuming gluten accidentally. Our members will be excited to visit and support these outlets.”

Although the term gluten-free is widely used in the food service and hospitality sector, it is often misunderstood, unpredictably executed, and thus an unreliable assurance of a safe dining experience. Until now, a national training standard that the industry in Canada could turn to has not been available. Now, and as part of their professional advancement, food handlers can learn about the importance of proper food handling and avoid accidental contamination of gluten-free food. For food service and hospitality operators, GF-Smart functions as a strategic business partner by standardizing food handler training, thereby improving customer service, fostering staff engagement and reducing the risk of negative publicity for those establishments who employ GF-Smart trained staff.

The Canadian Society for Nutrition Management (CSNM), the national association representing Food and Nutrition Managers across Canada, has adopted GF-Smart as part of their member curriculum.

Dave Lebert, CSNM Continuing Education Chair, says “Gluten-free diets, procurement of safe food for these special diets, and, most critical, the teaching and providing direction to our staff who work with gluten-free clients, are among the many facets of responsibilities of which our members endure on a daily basis. We are thrilled to partner with GFFP to offer the GF-Smart program to our members, and even more excited to include this course as part of CSNM’s Continuing Education program, worth one Continuing Education (CE) credit for our members.”

GF-Verified and GF-Dedicated standards have been created to ensure a consistent approach to internal management systems. From the purchase of ingredients, food storage, preparation, cooking, service, and delivery of gluten-free meals, GF-Verified denotes an establishment that provides both regular and gluten-free meals. GF-Dedicated indicates that all meals provided within the establishment are gluten free.

Our logos for the GF-Verified and GF-Dedicated programs will be displayed to indicate to the gluten-free community that an establishment has achieved the GFFP standards and in doing so has been externally audited by an independent auditor.

About Gluten-Free Food Program (GFFP): The Gluten-Free Food Program Inc. is a privately held corporation which owns and operates the GF-Smart and GF-Verified and GF-Dedicated programs, developed and managed with the endorsement of the Canadian Celiac Association and Québec-based Fondation québécoise de la maladie coeliaque, Canada’s two authoritative voices for those living gluten-free. www.glutenfreefoodprogram.com

About Canadian Celiac Association (CCA): The Canadian Celiac Association is the national voice for people who are adversely affected by gluten, and is dedicated to improving diagnosis and quality of life. Based in Mississauga, Ontario, with chapters across the country, its mission includes advocacy, education, research and community support. www.celiac.ca

About Fondation québécoise de la maladie coeliaque (FQMC): The Fondation québécoise de la maladie coelique provides services and support to its members in the French language. Its mission is to improve the lives of people who are affected by celiac disease or non-celiac gluten sensitivity with information on the disease and the gluten-free diet. www.fqmc.org

SOURCE Gluten Free Food Program Inc

For further information: GFFP: Andrew Batten, andrew.batten@glutenfreefoodprogram.com, (647) 467-3972; CCA: Melissa Secord, melissa.secord@celiac.ca, (905) 507-6208 ext. 226; FQMC:Édith Lalanne, elalanne@fqmc.org, (514) 529 8806

Getting the Diagnosis – Celiac Seniors

For years, celiac disease was considered a childhood disease. Now we know adults also have celiac disease, often suffering for years before being diagnosed. Diagnosis may be difficult because symptoms vary greatly from one person to another. If the doctor suspects celiac disease, a blood test should be ordered. If the results are positive, diagnosis should be confirmed using a small bowel biopsy. Older persons may require more time for the intestine to completely heal.

Medication

Not all medications are gluten free. Ask your pharmacist to refer to his/her CPS manual to determine whether your prescription drugs are gluten free. Before diagnosis, medications may not be properly absorbed. As you heal, medications may require adjustment by your doctor. Your doctor may also prescribe vitamin and mineral supplements to correct deficiencies.

Exercise

Osteoporosis is a concern for all older persons, but especially in adults that may have experienced years of undiagnosed celiac disease. Make sure to ask your doctor to have your bone density checked. Exercise, along with proper nutrition and medication, can help to minimize the effects of osteoporosis. In addition, regular exercise will help you look and feel great.

Tips For Family & Caregivers

 

Related Conditions

Related conditions include: Type 1 diabetes, thyroid disease, osteoporosis, and others. Although the incidence of additional conditions is uncommon, advise your doctor of any medical concerns you may have.

Dermatitis Herpetiformis

Definition

Dermatitis herpetiformis (DH) is “celiac disease of the skin”.  It is a chronic skin condition with a characteristic rash with intense itching and burning sensations

Cause

Genetic factors, the immune system and sensitivity to gluten play a role in this disorder. The precise mechanisms remain unknown

Incidence

The prevalence of DH is about 10 cases per 100,000 population. It is more common in males. Onset is most frequently in the second to fourth decade of life. It is rare in children. About 10-15% of patients with celiac disease have DH

Clinical Features

A new unscratched lesion is red, raised, and usually small, with a tiny blister in the center. However, if scratched, crusting appears on the surface. The burning or stinging sensation can be very intense. The most common areas are the elbows, knees, back of the neck, scalp, upper back, and the buttocks. Facial and hair-line lesions are not uncommon. The inside of the mouth is rarely affected. The rash has a symmetric distribution

Diagnosis

DH can be diagnosed with a biopsy taken from uninvolved skin adjacent to blisters or erosions.  The vast majority of patients will also have features of celiac disease (villous atrophy) and do not require a small intestinal biopsy to confirm the diagnosis.  The skin symptoms usually predominate over intestinal symptoms. Serological tests for celiac disease may be negative.  Like celiac disease, patients may have nutritional deficiencies.  Laboratory tests should be performed including complete blood count, iron studies, albumin, alkaline phosphatase, folate, phosphate, calcium and vitamin D, as appropriate for each patient

Management

Treatment of DH consists of medications and a gluten-free diet.  Oral dapsone (Avlosulfon) is often used to treat the skin rash. The response is often dramatic with rapid relief of burning and improvement in the rash.

A strict gluten-free diet should be consumed with elimination of all foods and beverages containing wheat, rye or barley.  A referral to a dietitian with expertise in gluten-free diet is recommended.

Since DH is a chronic disorder, regular follow-up with the physician and dietitian is important.

 

Prepared by:

Developed by the CCA Professional Advisory Council

June 2016

 

 

 

 

Travelling without Fear

When travelling in Canada and abroad, plan  ahead. Bring a supply of gluten- free food, if possible. Contact the local Canadian Celiac Association for information on where to shop and eat out. The CCA can provide contact information for foreign countries.

 

Getting Started on the Gluten Free Diet

A celiac disease diagnosis changes your life. This section is intended to help you navigate to helpful resources to guide you on your way.

This is a brief introduction to the gluten-free diet (GFD) to help you get started on your journey to better health. See a registered dietitian for detailed dietary information, needs assessment and education. The gluten-free diet is a diet for life and should never be started before a small intestinal biopsy is positive for celiac disease.

What is gluten?

Gluten is a general name for specific proteins in certain grains. The gluten in wheat, rye, and barley cause a toxic reaction in people with celiac disease preventing the absorption of essential nutrients.

Gluten-Containing Foods and Ingredients:

* Types of wheat ** Derived from barley *** Small amounts of pure, uncontaminated oats are safe for those with celiac disease, however the availability of pure oats remains a problem. Most commercially available oats are contaminated with wheat or barley.

Reading Food Labels

New food labelling regulations in Canada came into effect on August 4, 2012 that apply to all packaged food sold in Canada, no matter where it was manufactured. The regulations require that the ten priority allergens, gluten sources, and added sulphites of 10 ppm be identified using plain language either in the ingredient list or in a Contains statement that appears immediately after the ingredient list. Manufacturers have a choice about which method they choose to use.

When you check for gluten, you may need to check two places:

  1. The WARNINGS section – CONTAINS, MAY CONTAIN.
  2. The INGREDIENT list

 

Step 1: Warnings.

Start with the WARNINGS. You are looking for wheat, rye, barley, oats or gluten. If you see wheat, rye, barley, oats or gluten, in either the CONTAINS or MAY CONTAIN list, the product is NOT OK.

If there is a CONTAINS statement, and it does not include wheat or a gluten grain, the ingredients are acceptable for a gluten-free diet.

If the ingredient list just says oats, assume they are contaminated with gluten, unless they are specifically identified as pure uncontaminated oats or by the source (Cream Hill Estates Oats, Only Oats, etc.).

Step 2: Ingredient List.

If there is no CONTAINS statement, check the INGREDIENT list. You are looking for wheat, rye, barley or oats. If you see wheat, rye, barley, or oats, the product is NOT OK. If you do not see any gluten source listed, the ingredients are acceptable for a gluten-free diet.

 

Notes

Plain names must be used for all allergens: WHEAT, MILK, EGGS, etc. Allergens cannot be hidden in ingredients like seasoning or natural flavour.

If one allergen is listed in a CONTAINS statement, then all the allergens including gluten must be listed.

The only warnings that have official meanings are CONTAINS and MAY CONTAIN. All other warnings (“made in a plant that also processes wheat “etc.) can only be understood by contacting the company.

Manufacturers change the ingredients in their products from time to time. A product that does not contain gluten might contain gluten in the future. Products that you might not imagine could contain gluten may have unexpected gluten ingredients. The only way to be sure is to read the ingredient list every time you buy a product.

Cross-Contamination

People who need to eat gluten free need to check both the ingredients in food and any cross-contamination with gluten-containing ingredients that might happen when the food is manufactured, packaged and prepared for eating.

When you think about avoiding cross-contamination, you need to realize that crumbs matter. Look around your kitchen to see where there are crumbs – on the counter top, in the microwave, on the cutting board or in the corners of your metal baking dishes? Anywhere you see crumbs is a potential place for cross-contamination.

At home the following practices will go a long way toward avoiding cross contamination:

 

Away from home, be aware of sources of cross contamination:

Adapted from an article prepared by the CCA Calgary Chapter.

 

Finding Reliable Information

The Internet is full of information about celiac disease, gluten sensitivity and the gluten-free diet. Not all of this information is valid, useful or accurate. Separating Internet myths from fact is a key piece of being comfortable with eating gluten free.

The quantity of information is staggering and it comes in so many forms – from blog entries to dense scientific articles. On top of sorting through the huge quantity of information, you also have to deal with a very uneven level of quality.

Some of it is sheer speculation without a shred of proof; some is the result of years of painstaking study and research. Some of it comes from people who want you to buy something (or not buy something) and some of it is offered with the best of intentions.

I don’t think a lot of people specifically try to create fear maliciously, but sometimes they repeat information they have heard from other people who have either misunderstood something or who have drawn conclusions that are absolutely unwarranted based on fact.

Here’s an example. I was sent a newsletter that basically said “there seems to be am Internet controversy about whether enriched rice is safe because there might be gluten in the enrichment coating so I suggest you avoid it”.

I went looking for the Internet controversy and found one blog post that suggested this might be true, but with no supporting evidence. That same blog post was picked up and reprinted verbatim in about 10 other blogs. Now there were 10 sources that showed up in a source making this allegation, and unless you went look closely like I did, you wouldn’t realize that 9 of the 10 sources were simply repeating the same unsubstantiated claims.

Figuring out whether a particular source is reliable is not an easy thing – it takes detective work. You have to figure out where to look and what clues to look for. You may run into way too much information or not enough at all. The easy way is to just accept whatever you find, but this may not be the best solution.

 

How do you evaluate information?

First, look at the date of the information. Information that is even a year old is often out of date when it comes to specific product data. An article that said Corn Chex was not gluten free would have been correct in 2008 but by 2009 it was wrong.

Sometimes you can tell how credible a statement by the evidence that is presented to support it.

One of my favorite Internet myths is the rumor is that some tea bags are sealed with a wheat paste. If that was the case, the tea from those bags would not be acceptable for someone who needs to eat gluten free. There are lots of Internet blog posts and email messages and web sites that repeat the myth, but the next sentence is virtually always something like “I called company A and company B and company C and they told me they don’t use wheat paste to seal their tea bags”. I have yet to find someone who has found a company that actually does this. “But it might be true” is usually the final sentence.

Hmmm. Doesn’t sound there is a lot of credibility to this myth.

I took it further and looked for information on how tea bags are actually sealed. I found some industry pages and some companies that make machines that seal tea bags and some tea companies that were trying to debunk the myth about sealing teabags with wheat paste. What did I learn? Tea bags are generally sealed in one of three ways: heat sealed with a bit of plastic, crimped where the top and bottom of the bags are pressed really hard together, or folded and stapled. When I pushed really hard at one person who was making a tea bag claim, they sent me a notice that a “food grade” glue had been approved by the World Health Organization for use in manufacturing tea bags. No information about the ingredients, nothing that even hinted at wheat. From this, they justified spreading the information that this was something people should worry about.

Does this mean that all tea is gluten-safe? No. Some herbal or flavored teas contain barley malt, but black, green, oolong, and white tea are all naturally gluten free and grow in areas where gluten grains do not grow.

If you have time and a detective bent, do your research. When you read a new “fact”, make sure you check the credibility of the information and the source before you pass it on or change your behavior.

If you don’t have the time for this, join a large national support group and read the information they send you. They will keep you up to date with the latest finding and will only pass on credible information. Look for a group that has a professional advisory board who vet new finding to make sure that the you hear about important findings but don’t get overwhelmed with rumor.

A few people with gluten sensitivity have told me that they are concerned about joining a “celiac” group. They don’t have celiac disease, after all. My answer is that the people with celiac disease are the most sensitive to gluten – even more than those with a wheat allergy. If you follow the advice for gluten that comes from those groups, you will definitely be safe.

CCA Help@Home Webinars

Poor Bone Health: Could it be celiac? 

Date: Tuesday, May 29, 2018

Times: 6 – 7 pm and 9-10 pm EDT

 

Join us as we partner with Osteoporosis Society of Canada with a free one hour webinar about how poor bone health can be a sign of celiac disease. Bone loss is one of the top atypical or non-classic signs of celiac disease.

Click here to register

 

Gluten Free 101

CCA Members have exclusive access to CCA’s FREE GF101 webinar sessions. These sessions are ideal for members who are not local to our Chapters across Canada. These one hour intimate and interactive sessions allow newly diagnosed members to access expert information and advice. The session will help build your confidence as you manage your disease or that of a family member. Registration is limited to ten (10) people per session.

Facilitator: Sue Newell, CCA’s Manager, Education and Special Projects

Current Session Dates and Times: Watch for future time and dates in your monthly CCA Connects newsletter or direct to your inbox! To register or for more information, email info@celiac.ca 

Celiac Disease & Gluten Free Diets – Online Course

This self learning course is designed for those people who have an interest in learning about celiac disease. This course will be of great use for health care workers such as personal support workers, licensed practical nurses, workers in senior’s residences, day care workers, schools and meals on wheels. In particular people who are involved in any way in the preparation and serving of meals to persons with celiac disease such as chefs, cooks, children day care workers, school cafeteria workers, volunteers, family and friends.

http://www.ccalearnonline.ca/

Consumer Alert: Sobeys Inc. recalls Sensations by Compliments brand Pecan-Crusted Cheesecake Collection

Sobeys Inc. is recalling Sensations by Compliments Brand Pecan-Crusted Cheesecake Collection (340 gm) from the marketplace because it contains wheat which is not declared on the label.

-April 6, 2018

Ontario Legislature petition for celiac blood testing

Ontario is the only providence in Canada that does not cover blood screening under provincial health insurance unless it is specifically performed during an in-patient hospital visit.  People with Celiac disease didn’t choose to have this disease, they deserve to have the test covered by OHIP. Delayed diagnosis causes lack of treatment which leads to nutritional deficiencies, bone fractures and the development of cancer. It also leads to the risk of developing mental health problems. When a person with celiac disease is diagnosed early, the individual’s health returns to the normal rate, it reduces their visits to doctors and hospitals and unnecessary diagnostics testing. Ontario Provincial health coverage (OHIP) for IgA TTG serological test for patients with Celiac disease.

Please download our petition, get your friends and family to sign it and either mail it back to the CCA or send it to your local MPP (original signatures only, photocopies or scanned petitions will not be accepted).

CCA issues statement on NIMA gluten sensor

The Canadian Celiac Association’s Professional Advisory Council (PAC) was asked to review the NIMA Sensor device as it was recently launched in Canada.

-March 15, 2018

CCA National Board seeks directors to serve for 2018-2020

The Canadian Celiac Association (CCA) is seeking nominations for its the national board of directors for the July 1, 2018 to June 31, 2020 term. Do you have the right stuff and the desire to give back?

-February 15, 2018

Stay heart healthy and gluten free – tips from Dr. Jennifer Zelin

Having celiac disease can make healthy eating a challenge. The dietary restrictions of a gluten-free diet, and the symptoms from recently diagnosed celiac disease, can make it difficult to choose healthy dietary options and maintain physical fitness. Dr. Jennifer Zelin shares some tips…

-February 15, 2018

Gluten-free as a New Year’s Resolution? Think twice!

With the onset of “New Year’s Resolution” season, the Canadian Celiac Association is cautioning Canadians to look before they leap when it comes to adopting the gluten-free diet.

-January 16, 2017

Gluten-free claim to be removed from General Mills Cheerios sold in Canada (Revised)

The Canadian Celiac Association has learned that the words “gluten-free” will be removed from all Cheerios packages sold in Canada commencing January 2018.

-October 26, 2017

CCA response to CFIA Beer Consultation

In July 2017, the CCA was invited to comment on our concerns with beer labelling. Members of our Professional Advisory Council prepared a response on behalf of the CCA Board of Directors.

-July 2017

Deep Frying Gluten Alert

The myth that frying wheat products makes them gluten-free is endangering people with Celiac disease.

-April 2017

GF Cheerios Recommendation

General Mills Canada announced last week that five Cheerios flavours sold in Canada will carry a glutenfree claim. Original Cheerios, Honey Nut Cheerios, Multi-Grain Cheerios, Apple Cinnamon Cheerios and Chocolate Cheerios will be rolled out across the country in August. The Canadian Celiac Association (CCA) held a conference call with representatives of General Mills Canada and General Mills US on August 2nd 2016 to discuss our concerns with the gluten-free label on these products.

-2016

Canadian Celiac Association Professional Advisory Council position statement on consumption of oats by individuals with celiac disease

The safety of oats in individuals with celiac disease has been extensively investigated. Health Canada has reviewed the clinical evidence from numerous international studies and has concluded that the consumption of oats, uncontaminated with gluten from wheat, rye or barley, is safe for the vast majority of patients with celiac disease.

-2015

 

We are eager to work with the media to get the message out about celiac disease and the work that the CCA is doing on behalf of people with the condition.

Whether you’re researching, looking for more information on celiac disease or looking for case studies, we are here to help.

We can provide you with:

For more information contact Melissa Secord, melissa.secord@celiac.ca, (905) 507-6208 ext. 226.

Information Brochures

These brochures are formatted for printing.

Celiac Disease: What is it?
Celiac Disease: Myths and Facts
Celiac Disease: Blood Testing
Looking for gluten in new ingredients lists
Celiac Disease: Hidden and Dangerous
Go Gluten Free
Celiac Disease: a Guide for Teachers
Celiac Disease for Seniors
New Dental and Oral Manifestations

Français

La maladie coeliaque – sournoise et dangereuse
La maladie coeliaque: La lien au gluten

New Punjabi

Celiac Disease: Myths and Facts
Celiac Disease: What is it?

New Chinese

Celiac Disease: Myths and Facts
Celiac Disease: What is it?

 

 

Thank you for considering employment with the Canadian Celiac Association. If you feel that your skills and experience are aligned to the career opportunities posted please e-mail an inquiry.

There are currently no employment opportunities.

Meet our Board of Directors.

The CCA is governed by an elected national board of directors with regional representation across Canada. The Board develops policies and strategies for the association and provides leadership and guidance to chapters. The Board meets monthly via conference calls and in-person three times annually.

Executive.

Anne Wraggett – President

AnneOriginally from southern Ontario, Anne Wraggett has lived in Victoria, B.C. since 1998. She obtained an undergraduate degree from the University of Toronto and then returned to university a decade later to become an accountant. After working for a variety of organizations, she is now Director of Finance and co-manager of a long-term care facility. She became active in the Victoria Chapter in 2001, serving as secretary and then president before chairing the organizing committee for the 2008 CCA national conference held in Victoria. On the CCA National Board of Directors since 2012, Anne juggles her volunteer work with the CCA, her full-time job, and a home life with her husband, 2 cats, and a garden.

Treena Duncan – Vice-President

TreenaTreena lives in Surrey, BC, and joined the CCA board in 2014 and became the Secretary of the board in 2015. She was diagnosed with celiac disease in 2012. She is married with two teenaged children. Both her son and daughter were diagnosed with celiac disease in 2012. She is excited to be part of the CCA board and is passionate about its work. Professionally, Treena works for the United Church of Canada as Personnel Minister. Most of her work focuses in the area of staff supervision, conflict resolution, board/committee development, communication, policy interpretation and leadership development. Treena enjoys this challenging and multifaceted role. In a volunteer capacity, Treena serves on the British Columbia Highland Dance Association board as secretary, and recently completed her term as secretary of the White Spot Pipe Band Executive. In her spare time, Treena supports her children in their chosen activities (Highland Dance, Bagpipes, Guitar/Singing, Soccer), and enjoys playing the piano, reading and travelling.

Renée Coleman – Secretary

ReneeCRenée lives in Kamloops BC and joined the board in 2016. She is married with 2 grown children and her faithful friend Oakley, the family golden retriever. Diagnosed with Celiac disease in 2013 Renée soon found her passion advocating for those with Celiac disease, and along with her position as a Director with the Board, she’s also currently the Chapter President for Kamloops. When not volunteering Renée enjoys spending time in the great outdoors with her family fishing, camping, hiking and capturing memories from behind the lens of her camera.

Chantal Gabriele – Treasurer

Directors

Mark Johnson

Mark Johnson lives in Ottawa and has served on the CCA Board of Directors since 2011. Mark works on the CCA’s awareness, revenue and education initiatives, and as such is involved with such tasks as writing, editing, internal communication, media relations, member support, advertising, and social media. Mark also serves as president of the CCA’s Ottawa Chapter. He holds a bachelor’s degree in political science from the University of Waterloo, and master’s degrees from the University of Ottawa (communication) and Carleton University (political management). Mark was diagnosed with celiac disease in 2005. He is a federal public servant, is married with two dogs, and in his spare time enjoys travelling, learning, reading, and playing board/card games.

David Congram

DavidCDavid’s career has been in the financial services sector, primarily in insurance. He has a background in strategic planning and Board memberships. He is an Actuary by profession, having recently served on the executive of the International Actuarial Association. As a celiac from Toronto he looks forward to contributing to the Board.

Selena DeVries

SelenaDSelena is a registered dietitian living with celiac disease. She specializes in the dietary management of celiac disease in her virtual private practice, Healthbean Nutrition, based in Kelowna BC. She is also the dietitian for the CCA Okanagan chapter. Selena is an advocate for celiac disease within her community, with a keen interest in increasing awareness among her colleagues and other health professionals. She graduated with an Honors BSc. degree in dietetics from the University of British Columbia in 2013. She is also the co-chair of Dietitians of Canada: Integrative and Functional Nutrition Network, which helps to promote education opportunities and increase knowledge on the importance of whole body health – mind, body and spirit. In her spare time, Selena is likely to be found in the dance studio, tapping away, travelling, and, most definitely, scouting out and enjoying gluten free food.

Julie Greene

JulieGJulie Greene is an Account Director at Ray Agency in St. John’s, Newfoundland & Labrador. She has experience in traditional and digital marketing and has worked on accounts like Newfoundland & Labrador Tourism, Cooke Aquaculture, Air Labrador and Newfoundland Power to name a few. Diagnosed with celiac disease in 2013, Julie joined the CCA Board on the Awareness committee in May 2016. In her free time she enjoys spending time with her daughter Kate, hiking with her dogs, playing piano and travelling. She looks forward to contributing to the success of the board!

Jennifer Stebbing

Jennifer is a lawyer at Ross & McBride LLP and practices predominantly in the area of estate planning, administration and accounting. Since her call to the bar in 2009, she has practiced in estate law; first as a litigator and now as a planner and administrator. Jennifer completed her Bachelor of Arts (Honours) at the University of Windsor in International Relations and went on to complete two law degrees with cum laude honours at the University of Ottawa and Michigan State University with a specialization in International Law. Jennifer is currently attending Osgoode Hall Law School for a Masters of Law specializing in Tax. Jennifer is a volunteer at heart and is involved in many different local organizations and spends her spare time hiking and participating in various community events.

Accomplishments

From its beginning as the Canadian Celiac Sprue Association of Waterloo region, the CCA has had a major impact on improving the lives of people with celiac disease and gluten sensitivities in every possible way. As an organization, the CCA has been able to interact with individuals, medical professionals, medical researchers, food manufacturers and suppliers and various government agencies ways that no single individual could attain.

 

Education & Research

From an initial notice in Chatelaine Magazine in 1973 announcing the formation of a support group to a Facebook Forum supporting almost 8500 members, the CCA has used print, radio, television, video, telephone, email and social media to provide information to and answer questions from Canadians about gluten-related conditions and the gluten-free diet.

With the assistance of an active Professional Advisory Council, the CCA has provided education and support to family doctors who need to “think celiac.” These efforts have ranged from a printed reminder to family doctors that celiac disease is not a disease that patients outgrow (1976) to guidance on the best way to monitor the health of people with celiac disease throughout their lifetime.

The CCA has supported more than 30 researchers financially with J.A. Campbell Research grants expanding our understanding of the disease, diet and psychosocial challenges in dealing with celiac disease at all stages of life.

Three large patient surveys, the first in 1989, focused on the problems of diagnosis and the challenges of managing celiac disease in everyday life.  Some issues have remained common across the years, especially the many factors leading to the underdiagnoses of celiac disease.

Food Safety

At the governmental level, the CCA has worked extensively with Health Canada, the Canadian Food Inspection Agency, and Agriculture and Agri-Food Canada to make sure government policy supports the safest possible food for people with a medical need for gluten-free food. While the biggest impact may have come in gluten product labelling, the CCA also supported the first efforts to create pure, uncontaminated oats with the assistance of oat expert Dr. Vern Burroughs (AAFC).

The CCA hosted the first cross-sector conference on producing gluten-free food in Canada, bringing together growers, food manufacturers, food vendors, regulators, and consumers to discuss the problems and potential solutions in making safe gluten-free food. This process has been repeated twice reflecting the overall growth of gluten-free food in Canada.

The CCA continues its food safety work with funding from AAFC and research assistance from the Allergen Control Group and the Canadian Grains Council. Current projects goals are to determine the actual level of contamination of non-gluten cereals, pulses, and seeds, to find ways to reduce that contamination and to complete the first comprehensive reference on sampling protocol and testing methodology for gluten in ingredients.

The CCA began the first gluten-free certification program in Canada in 1990. In 2009, however, it recognized that a food safety standard was essential to meeting goals. Through initial work with QMI and then with the Allergen Control Group, a robust safety standard has been produced and recognized by international standards associations. Since 2012, more than 200 manufacturers on 6 continents have produced more than 3000 products carrying the GFCP symbol signifying that they were produced in a certified facility with new products joining the program weekly.

With the assistance of the GF-Verified program of the Gluten-Free Food Program, the CCA has begun to educate food service staff on the challenges of producing gluten-free food. The first restaurants, bakeries and student cafeterias to qualify for the designation enrolled in 2017.

Sue Newell – Manager, Education and Special Projects

Nice to Meet You.

The Canadian Celiac Association / L’Association canadienne de la maladie coeliaque is a volunteer-based, federally registered charitable organization with its national office in Mississauga, Ontario. It was founded in 1972 with financial assistance from the Kaufman Foundation. The association was started by two women from Kitchener, Ontario, who, from personal experience with celiac disease, recognized vital needs of people suffering from the disease.

The initial objectives were to provide information on sources of gluten-free food, to foster research and to encourage mutual support among celiacs. Today the association serves people with celiac disease and dermatitis herpetiformis through 28 affiliated chapters and 30 satellite groups across Canada.

The CCA is governed by an elected national board of directors with regional representation across Canada. The Board develops policies and strategies for the association and provides leadership and guidance to chapters. Chapters are charitable organizations each of which is governed by an elected executive committee. The national office is staffed by two full-time and two part-time people.

Get to Know Our Office Team.

The Gluten-Free Certification Program (GFCP)

Gluten-Free Certification Program logoThe Gluten-Free Certification Program (GFCP) is the only Canadian voluntary certification program designed for manufacturers of gluten-free food, drug and pharmaceutical products. The program is intended to differentiate products from the increasing clutter of gluten-free claims in today’s marketplace by using the Trusted Mark of the Canadian Celiac Association (CCA).

The GFCP differentiates itself from other certification programs with a foundation based on proven Canadian regulatory and private sector adopted Hazard Analysis Critical Control Point (HACCP) systems. This approach is preventative in nature and addresses all potential hazards, including gluten, as part of a manufacturers overall safety and quality management system. This approach combined with analytical testing procedures for incoming ingredients, as well as in-process and finished products, the GFCP provides added assurance that the products carrying the mark are both safe and gluten-free.

Another key differentiator of the GFCP is that it requires the use of qualified, trained and approved independent third party auditors (not inspectors) to verify that manufacturers meet the program’s requirements on an annual basis. This third party relationship is essential to eliminate any potential conflict of interest in the certification process.

A manufacturing facility which undergoes a successful third party audit process will be recommended to the Canadian Celiac Association for certification to be eligible to use the GFCP mark on product packaging and in marketing/advertising materials.

See the list of certified brands: on this page.
Learn more about the program: www.glutenfreecert.com

Learn about the Restaurant Certification Program.

Grants in Aid of Research in Celiac Disease and Gluten Sensitivity in Canada

The Canadian Celiac Association / L’Association Canadienne de la Maladie Coeliaque is pleased to announce two research awards.

1. Dr. J. A. Campbell Research Award.

A grant to a maximum of $25,000 is offered by the Canadian Celiac Association for research projects in Canada of a scientific, applied science, and/or medical nature relevant to celiac disease, dermatitis herpetiformis, and/or non-celiac gluten sensitivity, or the socio-economic implications of delayed diagnosis and/or living with this conditions.  The CCA is open to all types of relevant research and is not restricted to medical research.

The next J.A. Campbell Research Award deadline is January 31, 2018. Successful applicants will be informed of the decision by April 28, 2018.

For details and the application form see below:

2018 JA Campbell Research Award Details

JAC-Application-Form-2018

2. Dr. J. A. Campbell Young Investigator Award

The Dr. J. A. Campbell Young Investigator Award of $5,000 for any kind of research into Celiac Disease and / or Gluten Sensitivity is available to students and those who have recently completed degrees.

The next J.A. Campbell Young Investigator Award deadline is January 31, 2018. Successful applicants will be informed of the decision by April 28, 2018.

2018 JAC Young Investigator Award Application

Previous Awards

Research Awards

Abadi, Valerie (2013)
Development of a Physiopathological Mouse Model of Celiac Disease

Mager, Diana (2012)
How do parents and child’s perceptions of quality of life affect dietary adherence to the gluten free diet and nutritional intake in children with Celiac Disease?

Greenblatt, Ellen (2009)
Prevalence of Celiac Disease in a Canadian Population of Women with Unexplained Infertility

Mager, Diana & Turner, Justine (2008)
A Prospective Study of the Effect of Vitamin D and Vitamin K Deficiency on Bone Metabolism and Bone Accrual in Children and Adolescents with Celiac Disease

Verdú, Elena (2007)
Using HLA-DQ8 mice to analyze the development of celiac disease and other gastrointestinal illnesses.

Leroux, Jean-Christophe (2003)
Polymers as gliadin binders: an innovative strategy to prevent interactions of celiac disease peptides with the gastro-intestinal mucosa

Young Investigator Awards

Rajani, Seima (2013)
Serological Diagnosis of Celiac Disease at Stollery Children’s Hospital: a Pilot Study

Wiepjes, Michelle (2011)
Role of the Serine Protease Inhibitor Elafin in Gluten-Related Disorders

Slemmer, J. (2010)
Epidemiology of Celiac Disease in PEI

Pinier, Maude (2010)
Ability of a polymeric binder to control Celiac Disease

Gunn, Beth (2009)
Prevalence of Celiac Disease in a Canadian Population of Women with Unexplained Infertility

Silvester, Jocelyn (2007)
Survey of Canadian Gastroenterologists about Long Term Follow-up Care of their Celiac Patients.

Zelin, Jenni (2001)
The role of the family physician in the diagnosis and management of celiac disease.

The purpose of the Professional Advisory Council (PAC) is to advise and assist the Canadian Celiac Association (CCA) in its mandate of promoting the welfare of persons with celiac disease and dermatitis herpetiformis, and to increase awareness among the public, governments, and health care professionals of these disorders.

The Professional Advisory Council also advises the association on the direction of funding for research and encourages support for the Association in furthering its goals.

The PAC is responsible for developing and recommending policies and programs related to the medical, nutritional research, and educational aspects of the Association, and setting appropriate standards. It is accountable to the CCA for all matters in this regard.

Counselling Tools for Dietitians

The dietitians on the CCA Professional Advisory Board have prepared a number of tools to help you provide guidance to patients diagnosed with celiac disease, non-celiac gluten sensitivity or any condition treated with a gluten-free diet. The Patient handouts, available in English and French, were developed with the assistance of Dietitians of Canada, and are available from both organizations.

Counselling Tools for Dentists

Related Conditions

Follow-up Management of Patients with Celiac Disease

Prepared by the Professional Advisory Council, Canadian Celiac Association, March 16, 2016 (Click to download)

Celiac disease (CD) is a serious disorder that requires careful management and follow-up. The gluten-free diet (GFD) should not be started before celiac disease is diagnosed by positive serology and histology. This resource will assist primary care physicians to provide long-term patient care. These recommendations may be modified according to individual patient needs.

Six key elements for management of patients with celiac disease (Adapted from NIH 2004)

  1. Consult a dietitian skilled in the management of celiac disease
    • Nutritional assessment, nutrient deficiency treatment & education re: food labelling, nutrient content of GFD, menu & food preparation, cross-contamination, dining out, etc.
    • The GFD is costly, complex and challenging. Without proper education and support, patients are at higher risk of complications (i.e., osteoporosis, infertility, gastrointestinal cancers, lymphoma, nutrient deficiencies, etc.) and excessive weight gain.
    • Strict avoidance of ALL sources of wheat, rye and barley (and cross-contamination).
  2. Educate about the disease and family testing:
    • Celiac disease, unlike other gluten related disorders, is a multisystemic, malabsorptive, autoimmune disease with an increased prevalence of associated conditions.
    • First degree relatives have a 10-15% chance of having or developing CD.
    • For steps for screening for CD see: www.celiac.ca/pdfs/blood%20test-rev.pdf
  3. Lifelong adherence to a strict gluten-free diet and evaluation of compliance
    • Ingestion of as little as 50 mg of gluten (1/60 of a slice of bread) may damage the intestine.
    • Better adherence to a GFD is seen where there is a clear diagnosis, ongoing medical follow up and support by patient advocacy organizations, such as the Canadian Celiac Association (CCA).
    • Registered dietitian to provide timely education through initial individual or group settings and further follow up as needed.
    • Refer to gluten-free diet compliance score. www.celiac.ca/dietarycompliance
  4. Identification and treatment of nutritional deficiencies
    • Most patients benefit from a multivitamin supplement initially after diagnosis; ensure that supplement formulation is gluten-free.
    • Daily vitamin D and Calcium intake through foods and/or supplements (individualized and discussed with dietitian).
  5. Access to an advocacy group (e.g. Canadian Celiac Association & local chapter)
  6. Continuous long-term follow-up by health professionals with expertise in celiac disease
    • In the vast majority of patients, symptoms begin to improve within a month of starting a strict GFD.
    • Patients are at risk of developing other autoimmune disorders such as thyroid disease.

Guidelines for Family Physicians for Following Patients with Celiac Disease

Management At diagnosis At 3 months At 6 months At 1 year Annual Symptom recurrence
Measure weight and BMI Yes Yes Yes Yes Yes Yes
Measure growth (child) Yes Yes Yes Yes Yes Yes
History and physical exam Yes Yes Yes Yes Yes Yes
Education re: gluten-free diet (GFD) Yes Yes Yes Yes Yes Yes
Refer to registered dietitian (RD) with expertise in GFD Yes Yes By request By request Yes (Ideal) Yes
Suggest CCA membership Yes Yes
Screen for nutrient deficiencies (1) Yes If previously abnormal If previously abnormal If previously abnormal Yes
Celiac serology (TTGA, DGPA or EMA) If not already done Yes Yes Yes (2) Yes
Serum ALT, AST, ALP, GGT Yes If previously abnormal If previously abnormal If previously abnormal Yes
Serum TSH Yes Every 2 years
Bone density measurement If signs of metabolic bone disease (3), severe malabsorption, or other risk factors for osteoporosis In some adults (4) If previously abnormal every 2 years
Re-refer to gastroenterologist Abnormal serology or symptoms after RD review (5)

 

 

 

  1. Tests include CBC, iron studies or ferritin, folate, calcium, albumin, phosphate, ALP, vitamin D and vitamin B12 as appropriate for each patient.
  2. Although the serological tests are not robust enough to detect minor dietary indiscretions, a positive test is very suggestive of ongoing gluten exposure; repeat every 1-2 years.
  3. Premature osteoporosis, fracture with mild trauma with follow-up every 1-2 years until recovery.
  4. Peri- or postmenopausal women and men >50 yr of age or non-response to GFD at any age. If bone density measurement abnormal, repeat every 1-2 years until recovery. An abnormal bone density measurement in the GFD non-adherent patient may strengthen the argument for dietary compliance.
  5. Non-responsive celiac disease:
    • Failure to respond to 6-12 months of GFD or re-emergence of symptoms/laboratory abnormalities while on a GFD
    • Most common cause: intentional or accidental gluten exposure in the diet; ingestion of hidden gluten can come from a variety of unexpected sources
    • Consider concurrent irritable bowel syndrome (IBS), primary or secondary lactose intolerance, FODMAP intolerances, small intestinal bacterial overgrowth, microscopic colitis, secondary pancreatic insufficiency, eating disorders, food allergies, inflammatory bowel disease, gastroparesis, peptic ulcer disease & refractory celiac disease
    • Repeat endoscopy with special evaluation of small intestinal biopsy may be indicated

GFD = gluten-free diet, CBC = complete blood count, ALP = alkaline phosphotase, TTGA = tissue transglutaminase antibody, DGPA = deamidated gliadin peptide antibody,, EMA = endomysial antibody, TSH = thyroid stimulating hormone

Primary authors: Drs. Jenni Zelin, J. Decker Butzner, and RD Joyce Schnetzler

Screening and Diagnosis of Celiac Disease:

A Summary from the NASPGHAN, WGO and ACG Guidelines

Canadian Celiac Association Professional Advisory Council, 25 May 2016 (Click to Download)

Celiac disease (CD) is an immune mediated injury to the small intestine that is caused by ingestion of gluten (a name for multiple proteins in wheat, rye and barley) in genetically susceptible individuals. In Canada, CD occurs in approximately 1:100 people. The disease can be difficult to diagnose because it presents with a variety of symptoms (see Table) at any point in life. Prevalence of CD is higher in specific associated conditions (see Table).

Practice Point: The classic form of CD can manifest at any age once foods containing wheat, barley or rye are introduced in the diet. Symptoms include weight loss, diarrhea, abdominal pain/distension, and occasionally, severe malnutrition. Most patients display one or more intestinal symptom(s), others present with non-gastrointestinal symptoms (see Table) and some may be overweight. Patients may have an associated condition with or without celiac-related symptoms (see Table). Iron or folate deficiency anemia can occur due to malabsorption. Children may present with short stature, delayed puberty or dental enamel defects. Many symptoms (for example, anemia, weight loss, bone pain, paresthesia, edema, skin changes) are secondary to nutrient deficiency states.

Classic Symptoms

Non-classic Symptoms and Signs

Abdominal distension
Abdominal pain
Chronic diarrhea
Anorexia
Irritability
Weight loss (or failure to thrive in children)
Muscle wasting
Dermatitis herpetiformis (DH)
Unexplained iron or folate deficiency anemia
Aphthous stomatitis (oral canker sores)
Dental enamel defects
Persistent/recurrent vomiting
Irritable bowel syndrome
Chronic constipation
Abnormal liver enzymes (ALT/AST)
Arthritis, arthralgia
Osteoporosis/Osteopenia
Short stature
Delayed puberty
Infertility

Associated Conditions (% affected)

Neurological presentations

Relative of individual with CD (8-15%)
Type 1 diabetes mellitus (4-8%)
Autoimmune thyroiditis (2-5%)
Trisomy-21 (Down syndrome) (2-5%)
Turner syndrome (2-5%)
IgA deficiency (2-5%, up to 30% in patients with gastrointestinal symptoms)
Unexplained ataxia
Peripheral neuropathy
Epilepsy with occipital calcifications
Depression, anxiety
Fatigue

 

CD should be suspected in individuals with ANY of the above symptoms, signs or associated conditions. Screening serologic tests can be utilized to identify individuals at risk for CD. The diagnosis MUST be confirmed with a small intestinal biopsy or a skin biopsy in patients with DH. It is strongly recommended that the biopsy be done BEFORE starting on a gluten-free diet (GFD) because eliminating gluten can interfere with making an accurate diagnosis. CD requires lifelong treatment with a GFD. The diet is complicated, expensive and there are concerns about the nutritional adequacy of GF products as they can be high in fat and sugar, and often low in fiber, iron and B vitamins. Patients should be referred to a registered dietitian with expertise in CD and the GFD.

Screening tests and intestinal biopsy need to be performed while the patient is on a gluten-containing diet. Individuals who have started a GFD will require a gluten challenge to confirm the diagnosis. See the NASPGHAN or American College of Gastroenterology Celiac Disease Guidelines referenced below for information on the gluten challenge that can take from three weeks to two years to reinjure the intestine.

The IgA tissue transglutaminase antibody (IgA-TTG) or endomysium antibody (IgA-EMA) tests are recommended for initial testing performed by experienced laboratories. The choice of test depends on availability and laboratory preference. Both tests display positive predictive values that vary from 15% (< 3 X upper limit of normal, ULN) to greater than 95% (>10 X ULN), depending on the antibody level. Since these tests are IgA based, they will be falsely negative in patients with IgA deficiency. The prevalence of IgA deficiency is higher in individuals with CD; therefore, screening for selective IgA deficiency should be performed at the same time as the serology tests (see note below). The IgA and IgG anti-gliadin antibody (AGA) tests are no longer recommended as screening tests for CD because of poor predictive values.

flow chart for diagnosis of celiac disease

Note: CD occurs in 2-5% of people with selective IgA deficiency. All symptomatic IgA deficient patients should be referred for endoscopic small intestinal biopsies regardless of their serology results, as false negatives can occur. In asymptomatic individuals with IgA deficiency, the laboratory may be able to perform IgG-TTG or an IgG-deamidated gliadin peptide (IgG-DGP). Negative HLA-DQ2 or DQ8 genetic tests are helpful to exclude the diagnosis of CD because over 99% of patients with CD are positive for HLA-DQ2 or DQ8. However, approximately 30% of the general population tests positive for one of these HLA types and most do not develop CD.

For management information, see Follow Up Management of Celiac Disease.

Primary author: Dr. J. Decker Butzner
Chair, CCA Professional Advisory Council

Hill ID, Dirks MH, Liptak GS, et al; Guideline for the diagnosis and treatment of celiac disease in children: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr. 2005; 40(1):1-19.
http://www.naspghan.org/content/51/en/Celiac-Disease

Bai. JC, Fried GR, et al; WGO-OMGE practice guideline: Celiac disease February 2005
http://www.worldgastroenterology.org/guidelines/global-guidelines/celiac-disease/celiac-disease-english.

Rubio-Tapia A, Hill ID, Kelly CP, Calderwood AH, Murray JA. American College of Gastroenterology. ACG clinical guidelines: diagnosis and management of celiac disease. Am J Gastroenterol. 2013; 108 (5):656-76.
http://www.gi.org/guideline/diagnosis-and-management-of-celiac-disease/.

Rashid M, Lee J: Serologic testing in celiac disease: Practical guide for clinicians. Can Fam Physician January 2016 62: 38-43. URL: http://www.cfp.ca/content/62/1/38.full Accessed 06, Feb 2016.

Let’s Get the Word Out.

Share your story on our social media channels and help us spread the word about celiac disease and gluten sensitivity to other Canadians to improve diagnosis rates, increase the quality of gluten free foods and so much more.

Facebook: https://www.facebook.com/CCAceliac/

Twitter: https://twitter.com/ccaceliac

 

Advocate with us.

The CCA advocates and campaigns to improve the lives of Canadians living gluten free, from diagnosis rates to eating out. We influence governments, healthcare professionals, businesses and the public to create a better life for people in Canada who need our help.

But we can’t do it alone. With your help our voice is louder and stronger. Together we can create real change for the future.

Reach out to us to see how you can help by email: info@celiac.ca, phone: 905.507.6208 or Contact Us.

 

Why volunteer?

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Current Opportunities.

Volunteer with your Local Group or Start Your Own.

Support us in the Office.

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Fundraise for Us.

 

Join Now

Join us today with a membership! Whether you are diagnosed, seeking a diagnosis, supporting a friend or a relative, or trying to find out more about the gluten-free diet, celiac disease and dermatitis herpetiformis (DH), the CCA is here to support you.

Membership Benefits:

The Canadian Celiac Association is unified, trustworthy voice for all Canadians living gluten free. We build networks that foster research and education – to help celiacs regain power over their illness. When you sign up for a membership with the CCA, you receive:

A portion of your membership fee is allocated to advocate for the following:

Join Today!

First time annual membership – $65 includes new member kit and CCA Pocket Dictionary

Renewal is only $50 per year.

Multi-year memberships are no longer available for purchase. Current members with multi-year memberships are still being honoured.

Sign Up Online,  download a form here, or call us toll-free 800-363-7296.

Help us go the extra mile for celiac disease today – with Aeroplan.

Aeroplan joins you in supporting celiac disease with a 10% top up for every donation, every time. Donate your Miles today. Visit beyondmiles.aeroplan.com.

 

 

Why Donate?

The Canadian Celiac Association relies on donations to help provide programs to our members including:

Other Ways to Donate:

OnlineClick here to make an online donation. The Canadian Celiac Association uses the secure facilities of CanadaHelps.org to process our online donations. You will receive a tax receipt by email, usually within 5 minutes of making your donation.

Telephone: Call toll free 1-800-363-7296 to talk to a real person and make a donation. You will receive a tax receipt in the mail.

Mail: Please make your cheque payable to “Canadian Celiac Association” and send it to:
Canadian Celiac Association
5025 Orbiter Drive, Building 1, Suite 400
Mississauga, ON L4W 4Y5

You will receive a tax receipt in the mail.

 

Donate Securities and Mutual Funds

A donation of securities or mutual fund shares is the most efficient way to give charitably. Canada Helps is the largest processor of online security and mutual fund donations in Canada. And, they make it easy to donate to the Canadian Celiac Association.

The Benefits: Save More, Give More

The Canada Revenue Agency does not apply capital gains tax on donations of publicly traded securities. Capitals gains are the increase in the value of your securities over the price you paid at purchase.

When you sell your shares for cash, you’re responsible for the tax due on the gain, even if you plan to donate the proceeds from the sale. If you pay the tax out of those proceeds, there’s less money left to donate. Your charity receives a smaller donation and you have a smaller donation to claim for your charitable tax credit at the end of the year.

But when you donate your securities directly through CanadaHelps, those capital gains aren’t subject to tax. This means your charity receives a larger gift, and you’ll benefit from a tax receipt for the full value of your eligible securities or mutual funds.

Here’s an example of how it works.

Let’s say you purchased common shares in ABC Company for a cost of $1,000. If the current market value of those shares has increased to $5,000, you would have a capital gain of $4,000.

If you sell those shares and donate the cash proceeds, you’ll owe tax on the capital gain. So, you set aside the taxes due from the proceeds, leaving you with less than the full cash value to donate and a tax receipt which reflects the smaller donation.

But when you donate the shares directly, you owe no capital gains tax and you’re able to donate the full value. So your charity gets a larger donation and you get a tax receipt which reflects your larger contribution.

Donate your securities and mutual funds now:

https://www.canadahelps.org/en/why-canadahelps/ways-to-give/benefits-of-donating-securities/ 

Donate a Vehicle

Donate A Car Canada accepts vehicle donations for the Canadian Celiac Association. To donate a car, truck, RV, boat, motorcycle or other vehicle to the CCA, go to the Donate A Car web site. We provide free towing in many areas across Canada, or you can drop off your vehicle to maximize your donation. When you donate your car at it will be recycled or sold at auction depending on its condition, age and location. Donate A Car Canada will look after everything to make your donation easy for you to support the CCA.

DONATE NOW at www.donateacar.ca and you will receive an income tax receipt from the CCA after your car donation is complete!

Leave a Legacy

The values that you uphold can do much to shape the lives of those who come after you. One of the best ways is to make a gift through your will or estate plan to an organization you feel holds your values and strives to create the world you would like your children and grandchildren to inherit. Your gift does not have to break the bank. A surprisingly small amount can make a lasting difference in the world.

Your legacy will directly translate into improving the lives of people living gluten free through the CCA’s innovative work. This means more Canadians will have greater access to gluten free, nutritious food, and health services.

Besides supporting CCA’s mission through the years to come, you will also be giving your family an example of philanthropy that will become a precious family tradition in your honour.

There are several ways to make a planned gift:

 

For more information

If you are interested in planned giving options, or if you would like information, please contact Melissa Secord at melissa.secord@celiac.ca or 905.507.6208.

CCA urges everyone to seek legal and financial counsel when planning a legacy gift to CCA.

 

Please send all legal documents to:

5025 Orbitor Drive
Building 1 – Suite 400
Mississauga, ON, L4W 4Y5

Donate in Memory of Someone Special

Make a donation in memory of a family member, friend or colleague. The Canadian Celiac Association will send a card on your behalf acknowledging your thoughtful donation. You will receive an official tax receipt confirming your donation.

Donate in Recognition of Someone Special

Donate in recognition of someone on a special occasion or for a special achievement-birthday, graduation, research discovery, specific holiday, anniversary, or wedding. The Canadian Celiac Association will send a card on your behalf acknowledging your thoughtful donation. You will receive an official tax receipt confirming your donation.

Lead the fight against celiac disease and related conditions each and every day by becoming a monthly donor.

By giving monthly you will be making a positive and lasting difference in the lives of people living with and affected by celiac and gluten-related disorders. Regular monthly donations allow the CCA to invest in long-term projects and research studies. Your support will help bring us closer to a cure every day of the year.

Every dollar is gratefully received and wisely invested in the fight against celiac. Thank you!

Set up a monthly donation through CanadaHelps.org or by calling 1-800-363-7296. Monthly donors receive one tax receipt at the end of the year for their monthly donations.

Why Donate?

The Canadian Celiac Association relies on donations to:

Donate Today

OnlineClick here to make an online donation. The Canadian Celiac Association uses the secure facilities of CanadaHelps.org to process our online donations. You will receive a tax receipt by email, usually within 5 minutes of making your donation.

Telephone: Call toll free 1-800-363-7296 to talk to a real person and make a donation. You will receive a tax receipt in the mail.

Mail: Please make your cheque payable to “Canadian Celiac Association” and send it to:
Canadian Celiac Association
5025 Orbiter Drive, Building 1, Suite 400
Mississauga, ON L4W 4Y5

Tax receipts are issued in in February and only donations $25 and higher will receive a tax receipt if directed through the CCA office.

CCA Shop

Order directly from the CCA using the downloadable PDF form below. Please note: we are currently updating our inventory and materials. Some materials may no longer be available. Please call before ordering online.

Books/Booklets

Growing up Celiac – A guide to surviving and thriving with celiac disease – 2003 edition ($5.00 members/ $6 non-members)

Updated Pocket Dictionary – Acceptability of Foods & Food Ingredients for the Gluten-Free Diet – 2012 edition ($6.95 members / $9.95 non-members, reduced prices for more than 10 copies) This pocket-sized dictionary was developed to help people with celiac disease and gluten sensitivity to select acceptable foods and understand food ingredients so that they may avoid foods containing gluten. It provides a brief description of each item along with an assessment of its acceptability for the gluten-free diet. New gluten free oats included.

Practical Guide to Gluten-related Disorders and the Gluten-Free Diet – 2017 edition ($12/members/$15 non-members) – Developed specifically for public and private senior’s residences and Meals on Wheels Services.

 

To Order:

Print out the Order Form (in pdf format) or call 1-800-363-7296.

Download free Acrobat Reader® software, so you can view and print Adobe PDF files.

Introducing the Gluten-Free Certification Program

Gluten-Free Certification Program logoThe Gluten-Free Certification Program (GFCP) is the only Canadian voluntary certification program designed for manufacturers of gluten-free food, drug and pharmaceutical products that are intended to be differentiated from the increasing clutter of gluten-free claims in today’s marketplace by using the Trusted Mark of the Canadian Celiac Association (CCA).

The GFCP has been designed to differentiate itself from other certification programs with a foundation based on proven Canadian regulatory and private sector adopted Hazard Analysis Critical Control Point (HACCP) systems. This approach is preventative in nature and addresses all potential hazards, including gluten, as part of a manufacturers overall safety and quality management system. When combining this approach with analytical testing procedures for incoming ingredients, as well as in-process and finished products the GFCP provides added assurance that the products carrying the mark are both safe and gluten-free.

Another key differentiator of the GFCP is that it requires the use of qualified, trained and approved independent third party auditors (not inspectors) to verify that manufacturers meet the program’s requirements on an annual basis. This third party relationship is essential to eliminate any potential conflict of interest in the certification process.

A manufacturing facility which undergoes a successful third party audit process will be recommended to the Canadian Celiac Association for certification to be eligible to use the GFCP mark on product packaging and in marketing/advertising materials.

See the list of certified brands: on this page.
Learn more about the program: www.glutenfreecert.com

Let’s Connect – Peer Support

The Canadian Celiac Association has local groups with peer support spread across Canada. To find the group closest to you, please see the listing below. Anyone can join any local group or even join more than one local group. See what is available near you and find out what events are happening in your area.

Provincial and Territorial Organizations

Chapter Email Web Site
Newfoundland & Labrador chapter.nf.lab@celiac.ca celiacnl.ca
Prince Edward Island info@celiacpei.ca celiacpei.ca
Nova Scotia info@celiacns.ca celiacns.ca
Saint John chapter.nb.saintjohn@celiac.ca
Moncton chapter.nb.moncton@celiac.ca monctonceliacchapter.org
Quebec info@celiacquebec.ca celiacquebec.ca
Ottawa info@ottawaceliac.ca ottawaceliac.ca
Kingston chapter.on.kingston@celiac.ca kingstonceliac.ca
Toronto chapter.on.toronto@celiac.ca torontoceliac.org
Kitchener-Waterloo kwceliac@sympatico.ca
Thunder Bay chapter.on.thunderbay@celiac.ca
Manitoba office@manitobaceliac.com manitobaceliac.com
West Manitoba chapter.mb.westernmanitoba.ca@celiac.ca
Regina chapter.sk.regina@celiac.ca
Calgary info@calgaryceliac.ca calgaryceliac.com
Edmonton info@celiacedmonton.ca celiacedmonton.ca
Kelowna chapter.bc.kelowna@celiac.ca kelownaceliac.org
Vancouver info@vancouverceliac.ca vancouverceliac.ca
Victoria victoriaceliacs@hotmail.com victoriaceliac.org
Yukon Territory (part of the Edmonton CCA Chapter) ccayukon@gmail.com Yukon Celiac Support Group

 

For the territories, please contact info@celiac.ca

 

Starting the Conversation on Celiac-Friendly Dining

Thank you to Ellen Bayens of the CCA Victoria chapter and www.theceliacscene.com for permission to use this document.

More and more restaurants are offering “gluten free” menu items, but providing a safe gluten-free dining experience requires the combined efforts of the kitchen and serving staff. Some restaurants have developed extensive policies and procedures to achieve this, others have not. Here are some questions you might want to use to determine whether the restaurant or foodservice establishment is really able to serve you safely.

Communication

 

Ingredients

 

Procedures

 

Pizzas Places & Mixed Bakeries

 

Personal

 

At Church

Perhaps the most agonizing issues people with celiac disease or gluten sensitivity face occur when their faith practice includes gluten. In some communities it is relatively easy to substitute gluten-free items, in others it can seem like an unsolvable problem.

A study by Annette Bentley reported that 88% of her subjects had made some change to their religious practice after their diagnosis of celiac disease. Many also indicated that religious practice was sometimes a trigger for violating their gluten-free diet and that they suffered symptoms as a result.

Catholic

The Catholic Church has presented the biggest problem for people who need to eat gluten free. The church holds the position that hosts that entirely gluten free are invalid for the celebration of the Eucharist (Cardinal Joseph Ratzinger, circular letter to the Presidents of Conferences of Bishops, July 24, 2003 (Prot. 89/78-174/98) in BCL Newsletter, November 2003 (Vol. XXXIX), p. 45.)

There are two options for people with celiac disease or gluten intolerance – to celebrate with only the consecrated wine or to use very low gluten-hosts available from several sources. These very low-gluten hosts are made with wheat starch that has been processed to remove as much gluten protein as possible and have been approved by the Vatican’s Congregation for the Doctrine of the Faith.

There are several sources of very-low gluten host. The Congregation of Benedictine Sisters of Perpetual Adoration in Missouri produce a product that contains less than 0.01% gluten. The wafers are produced in a gluten-free environment. . Similar wafers are available in Canada from the St. Robert Bellarmine Society in Oakville, Ontario.

The percentage of gluten in these wafers translates to 100 ppm gluten, normally more than is considered safe for people with celiac disease, but as Ann Whelan from Gluten Free Living magazine pointed out, at that level, a wafer would contain only 37 micrograms of gluten, a small fraction of the 10 milligrams of gluten that is considered safe for people with celiac disease to consume on a daily basis.

In other words, although the wafer contains more gluten measures in parts per million than is usually considered safe, the “serving size” is so small that if you only consume one, you are well within the suggested maximum amount of gluten consumed per day. You would actually have to consume about 270 wafers in a day to meet that maximum level.

Many dioceses are willing to provide a separate paten to keep the low-gluten wafer separate from regular-gluten wafers. You may need to work out a process where you notify the presiding priest that you are present so that your wafer is prepared.

Protestant – using Wafers

Some Protestant traditions use wafers as part of their communion practice. The very low-gluten hosts described above can be used by people with celiac disease or gluten sensitivity. Ener-G foods manufacturers a gluten-free wafer that is available from numerous sources in both Canada and the United States. This wafer is also free from casein, dairy, yeast, egg, soy, nuts and corn, for people with multiple allergies.

Again, you will have to make arrangements for your wafer to be presented separately from the regular wafers to avoid cross-contamination.

Protestant – using Bread

While virtually every congregation that uses bread as part of their communion ritual will accept the substitution of gluten-free bread, you may have to make some special arrangements to make sure that your gluten-bread remains uncontaminated by the wheat bread used by the rest of the congregation.

Some people simply bring their own bread and consume it with the rest of the congregation. Others feel that the sharing of communion bread from one person to another is an important component of the ritual. In that case, you need to find a way to separate your gluten-free bread from the rest of the bread on the plate. Your bread can be placed in a small container on the plate, it can be individually wrapped in plastic and placed with the rest of the bread or it can be placed on a separate plate. Some people have expressed concern about having to sit in the “celiac section” if a gluten-free bread is offered on a separate plate. You may have to be creative in working with the management of your church to work out exactly the right solution for you and your congregation.

Judaism

The primary gluten-related issue for Jews seems to be sharing communal food during Passover. Ironically, a lot of food that is kosher for Passover is gluten free, because of the prohibition of using any gluten except for matzos or matzo flour. The problem is that matzo is by definition made from wheat, rye, barley, oats, or spelt. Some Jewish movements do not eat any grains during passover (non gebrochts) and that food would be naturally gluten free.

There are now several sources for oat matzo made from gluten-free oats. A matzo made from potato and tapioca starch is also available. Not every Jewish community will accept these variant matzo’s, but their availability offers a level of inclusion for everyone with celiac disease or gluten intolerance.

Living a Healthy Gluten Free Life – The Gluten Free Diet

Living a gluten-free lifestyle, on a gluten free diet, can have its challenges. In order to successfully follow a gluten free diet, it is essential to have a good understanding of which foods and ingredients contain gluten. Unfortunately, there is considerable misinformation published about what constitutes a gluten-free diet. As a result many individuals are often confused and needlessly avoid certain foods and ingredients, thus limiting the variety in their diet which can lead to nutritional imbalances

Below are resources to support a healthy Gluten-Free diet.

What Not to Eat

You need to avoid any food that contains the protein from wheat, rye, or barley. Here is a list of these foods:

* These are all types of wheat

** Fu is a dried gluten product derived from wheat that is sold as thin sheets or thick round cakes. Used as a protein supplement in Asian dishes such as soups and vegetables.

*** Oats are contaminated with wheat and barley, unless they are specially grown, harvested and processed. More information.

**** Seitan is a meat-like food derived from wheat gluten used in many vegetarian dishes; sometimes called “wheat meat”.

Source: Adapted with permission from Gluten-Free Diet: A Comprehensive Resource Guide 2008 by Shelley Case, Dietitian.

Foods to Eat (including Questions to Ask to Ensure Safety)

Category Food Products Notes
Milk and Alternatives Cheese spreads or sauces (e.g. nacho), seasoned (flavoured) shredded cheese May be thickened/stabilized with wheat flour or wheat starch.
Seasonings may contain hydrolyzed wheat protein, wheat flour or wheat starch.
Flavoured or frozen yogurt May contain granola, cookie crumbs or wheat bran.
Grain Products Buckwheat flour Pure buckwheat flour is gluten-free. Sometimes buckwheat flour may be mixed with wheat flour.
Rice and corn cereals May contain barley malt, barley malt extract or barley malt flavouring.
Buckwheat pasta Some “Soba” (Japanese noodles) contain pure buckwheat flour which is gluten-free but others may also contain wheat flour.
Seasoned or flavoured rice mixes Seasonings may contain hydrolyzed wheat protein, wheat flour or wheat starch or have added soy sauce that contains wheat.
Multi-grain or flavoured rice or corn cakes or rice crackers Multi-grain products may contain barley and/or commercial oats. Some contain soy sauce (may be made from wheat) or seasonings containing hydrolyzed wheat protein, wheat flour or wheat starch.
Meat and Alternatives Baked beans Some are thickened with wheat flour.
Imitation fish products (e.g. surimi, imitation crab) May contain fillers made from wheat starch.
Seasoned or dry roasted nuts or seeds May contain hydrolyzed wheat protein, wheat flour or wheat starch.
Processed meat products: deli or luncheon meats, hot dogs May contain fillers made from wheat. May contain seasonings made from hydrolyzed wheat protein, wheat flour or wheat starch.
Meat substitutes (e.g. vegetarian burgers, sausages) Often contain seasonings made from hydrolyzed wheat protein, wheat flour or wheat starch.
Vegetables and Fruits Dates May be dusted with commercial oat flour, dextrose or rice flour.
French fried potatoes Often cooked in the same oil as gluten-containing products resulting in cross-contamination.
Soups Canned soups, dried soup mixes, soup bases and bouillon cubes May contain wheat flour or hydrolyzed wheat protein. May contain noodles or barley. Cream soups are often thickened with wheat flour. Seasonings may contain hydrolyzed wheat protein, wheat flour or wheat starch.
Fats and Oils Salad Dressings May contain wheat flour, malt vinegar or soy sauce (made from wheat). Seasonings may contain hydrolyzed wheat protein, wheat flour or wheat starch.
Cooking Spray Some types have added wheat flour or wheat starch.
Desserts and Sweets Cake icings or frostings Wheat starch may be added.
Snack Foods Seasoned potato chips, taco (corn) chips, nuts and soy nuts. Some potato chips contain wheat starch. Seasoning mixtures may contain hydrolyzed wheat protein, wheat flour or wheat starch.
Beverages Flavoured or herbal teas or flavoured coffee Some flavoured or herbal teas, coffee substitutes and other drinks may have barley malt flavouring. Some specialty coffees may contain a chocolate chip-like product that contains cookie crumbs.
Other Baking Powder Most brands contain cornstarch which is gluten-free but some brands contain wheat starch.
Specialty mustards, mustard flour and curry paste Some brands contain wheat flour or wheat starch.

Source: Adapted with permission from Gluten-Free Diet: A Comprehensive Resource Guide 2008 by Shelley Case, Dietitian.

 

Enriching Gluten-Free Foods in Canada

Background

Most gluten-free flours, breads, pasta products, breakfast cereals and baked goods available on the Canadian market are much lower in vitamins, mineral nutrients and fibre than the gluten-containing products they replace. As a result, people with celiac disease, who must consume a strict gluten-free diet for life, may not be receiving optimum nutrition from their diets.

The Good News

Canada’s Food and Drug Regulations allow the enrichment of gluten-free foods sold in Canada. The Regulation [D.03.003] states that in order to qualify for enrichment, all three of the following conditions must be met:

 

For the purpose of these Regulations, individuals with celiac disease are not regarded as the “general public”. Therefore, gluten-free foods may be advertised in magazines, newsletters, etc., that is targeted to individuals with celiac disease or others requiring a gluten-free diet.

Enrichment Levels

Health Canada recommends that if cereal-based gluten-free foods are enriched, they should be enriched to the same levels as similar non-gluten-free products, e.g., gluten-free flours be enriched to the same levels as enriched flour; gluten-free breads to the same levels as enriched bread, etc. Bakery products and snack foods should have levels of enrichment corresponding to the amount of flour replaced. Enrichment levels for standardized wheat flour, bread, alimentary pastes (such as macaroni, spaghetti, noodles, etc.), and breakfast cereals are attached as an appendix.

Labelling Requirements

Gluten-free products that have been enriched must be labelled “gluten-free”. This statement must appear on the principal display panel in close proximity to the common name of the food, e.g., “enriched rice bread”, “gluten-free”, or as part of the common name, e.g., “gluten-free enriched rice bread”. If rice flour were fortified “gluten-free enriched rice flour” would be an acceptable common name.

All vitamin and mineral nutrient preparations added to a gluten-free products must be identified by their correct common names in the ingredient list, and all of the nutrients must be declared in the nutrition panel as a percentage of the Recommended Daily Intake. Information on acceptable sources of fibre and the claims that can be made for them may be obtained from the Canadian Food Inspection Agency website.

 

Resources for Children:

Growing Up Celiac (Order)

This small easy to read book from the CCA is written especially for children who have celiac disease. It contains information about Celiac Disease, questions and answers, recipes, snacks and game ideas.

Information to help with the initial phase of adopting a gluten free diet. Includes information about eating away from home, meal ideas and example shopping lists. A compilation of resources for use with pediatric Celiac Disease patients, developed by The Children’s Digestive Health and Nutrition Foundation.

Non-Celiac Gluten Sensitivity: How to Diagnose and Differentiate it from Celiac Disease

Summary

 

The spectrum of gluten-related disorders includes celiac disease, dermatitis herpetiformis, gluten ataxia, wheat allergy and non-celiac gluten sensitivity. The term non-celiac gluten sensitivity (NCGS) is used to describe the clinical state of individuals who develop symptoms when they consume gluten-containing foods and feel better on a gluten-free (GF) diet but do NOT have celiac disease.

Celiac Disease

Celiac disease is a multi-system autoimmune disorder that is triggered by ingestion of gluten (a protein in wheat, rye and barley) in genetically susceptible individuals. A common disorder, affecting about 1% of the population, patients can present with a variety of intestinal and non-intestinal symptoms. Autoantibodies such as tissue transglutaminase antibody (TTG), endomysial antibody (EMA) and deamidated gliadin peptide (DGP) are produced in the body and form the basis of serological tests used for screening. The diagnosis of celiac disease is confirmed by a small intestinal biopsy and treatment consists of a strict GF diet for life. Adherence to the GF diet results in the resolution of symptoms and intestinal inflammation, with the autoantibodies becoming negative over time. Celiac disease is a serious disorder with patients being at risk for nutritional deficiencies and development of other autoimmune disorders and rarely malignancies such as small intestinal lymphoma.

Non-Celiac Gluten Sensitivity

Non-celiac gluten sensitivity (NCGS) is frequently a self-diagnosis; hence the true prevalence is difficult to establish. There are currently no biomarkers for this disorder. In a survey of 1,002 people from the United Kingdom, 13% reported having gluten sensitivity, with 3.7% claiming to be on a GF diet. In a large study from Italy of 12,255 individuals, NCGS was found to be only slightly more common than celiac disease. Data from the National Health and Nutrition Examination Survey in the United States found that 0.55 to 0.63% of people followed a GF diet in the absence of celiac disease. This prevalence is similar to that of combined diagnosed and undiagnosed cases of celiac disease.

The symptoms of NCGS are highly variable. These include bloating, abdominal pain and diarrhea; symptoms mimicking irritable bowel syndrome. Other intestinal manifestations include nausea, acid reflux, mouth ulcers and constipation. Individuals may have non-intestinal symptoms such as feeling generally unwell, fatigue, headaches, foggy mind, numbness, joint pains, or skin rash. An individual may have one or more symptoms.

The clinical symptoms of NCGS and celiac disease overlap making it difficult to distinguish the two disorders on the basis of symptoms alone. In one study of adults, patients with celiac disease were more likely to have a positive family history, personal history of other autoimmune disorders and nutrient deficiencies compared to those with NCGS. It is important to note that in NCGS, the TTG, EMA and DGP antibodies are absent and there is no villous atrophy (damage to small intestine) on biopsy. Therefore, the diagnosis of NCGS can only be established by excluding celiac disease.

Non-celiac gluten sensitivity was first reported in the 1970’s. However, over the last decade an increasing number of people are following a GF diet for perceived health benefits. This has renewed both interest and concern whether these individuals have a true gluten-related disorder. There is a real possibility that some of those who go on a GF diet on their own could, in fact, have celiac disease. These individuals may not get diagnosed or receive adequate nutritional counseling from a dietitian and appropriate follow-up from their physicians. As a result, this may put them at risk for long-term complications of celiac disease. Since the small intestinal damage resolves and the TTG (and other antibodies) normalize after starting a GF diet, the true diagnosis of celiac disease becomes difficult to establish.

Most clinical trials investigating the phenomenon of gluten sensitivity gave study subjects gluten-containing grains such as wheat, rye and barley in their diet rather than pure gluten. Therefore, it has been postulated that individuals with NCGS may be reacting to other components in wheat rather than gluten. FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) are types of carbohydrates that some people cannot digest very well. The bacteria in the colon ferment these carbohydrates resulting in gas, bloating, abdominal pain and diarrhea. Wheat, barley and rye are high in FODMAP, which may be a contributing factor to these symptoms. Furthermore, wheat contains other proteins called amylase/trypsin inhibitors (ATI) that in laboratory studies have shown to cause intestinal inflammation.

The GF diet can be very challenging to follow, as it is complicated and expensive. In addition, there are concerns about the nutritional adequacy of GF products as they can be high in fat and sugar, and often low in fiber, iron and B vitamins. For these reasons, patients requiring a GF diet should be referred to a registered dietitian with expertise in this diet.

Currently, a lot remains unknown about NCGS. What is its exact pathophysiology? Is the sensitivity/intolerance to gluten a dose-related phenomenon? Is it a transient or a permanent problem? Do some individuals outgrow this condition over time? Are there specific diagnostic tests that can confirm the diagnosis? Clearly, more research is needed to clarify these issues.

Take Home Message

What is most important for the public and health care professionals to know is that the diagnosis of non-celiac gluten sensitivity should not be made without excluding celiac disease. A gluten-free diet should NOT be initiated without a proper clinical assessment that includes serological testing with IgA-tissue transglutaminase antibody while the individual is on a regular gluten-containing diet.

Primary author: Dr. Mohsin Rashid

References:

  1. Lebwohl B, Ludvigsson JF, Green PHR. Celiac disease and non-celiac gluten sensitivity. BMJ 2015;351;h4347
  2. Volta U, Bardella MT, Calabro A et al. An Italian prospective multicenter survey on patients suspected of having non-celiac gluten sensitivity. BMC Medicine. 2014;12:85.
  3. Kabbani TA, Vanga RR, Leffler DA et al. Celiac disease or non-celiac gluten sensitivity? An approach to clinical differential diagnosis. Am J Gastroenterol. 2014;109;(5);741-6

 

Let’s Set the Record Straight

MYTH: Celiac disease is rare in Canada.

FACT: Recent research has revealed that celiac disease affects one percent of people in the U.S. Growing awareness of celiac disease, earlier diagnosis and excellent blood screening tests point to the likelihood of similar prevalence figures in Canada.

 

MYTH: Celiac disease is easily recognized.

FACT: Celiac disease can be difficult to recognize since symptoms are often vague and nonspecific. Symptoms can vary greatly from person to person and can appear at any age.

 

MYTH: Celiac disease can be diagnosed by a simple blood test.

FACT: Blood screening tests (EMA or tTG) may suggest that a person has celiac disease, but they do not replace the need for an intestinal biopsy. Intestinal biopsies are the only definitive means of diagnosing celiac disease.

MYTH: An intestinal biopsy is a major surgical procedure requiring general  anesthesia.

FACT: This procedure is performed under sedation by an experienced specialist and is usually done as an outpatient procedure. In children, sedation or anesthetic may be used.

 

MYTH: Celiac disease and dermatitis herpetiformis are unrelated.

FACT: Dermatitis herpetiformis (DH) is celiac disease of the skin. Persons with dermatitis herpetiformis may or may not have intestinal symptoms characteristic of celiac disease, but they will have an abnormal small bowel biopsy. Treatment of dermatitis herpetiformis requires a gluten-free diet for life and medication to help relieve the burning and itching of the skin rash.

 

MYTH: Celiac disease is a childhood disease.

FACT: Celiac disease is an inherited condition and symptoms may develop at any age after the ingestion of gluten.

 

MYTH: Celiac disease can be outgrown.

FACT: Celiac disease is a life-long disease. Eating food containing gluten will continue to damage the intestinal lining and will increase the risk of developing associated conditions and other complications. The only known treatment for celiac disease is a gluten-free diet for life.

 

MYTH: A person with celiac disease needs to avoid only wheat and wheat products.

FACT: Effective treatment of celiac disease requires strict exclusion of gluten for life. The gluten found in various wheats (e.g., durum, kamut, spelt), and in rye, barley, and triticale, must be avoided. Consultation with a registered dietitian is recommended to learn about the hidden sources of gluten and how to prepare a nutritious, well balanced diet while avoiding gluten.

 

MYTH: A trial of the gluten-free diet is a good way of selecting patients who have celiac disease.

FACT:  A gluten-free diet should not be started until the diagnosis of celiac disease has been made by a small bowel biopsy. A trial of the gluten-free diet before the blood tests and the biopsy allows the villous damage to improve which may make the interpretation of the tests inconclusive and further delay the diagnosis of celiac disease. Moreover, patients may respond clinically to dietary changes for reasons other than celiac disease.

 

MYTH: A person with celiac disease can tolerate a small amount of dietary gluten once in a while.

FACT: Even though some people with celiac disease may seem to tolerate gluten, damage is still being done to the intestinal lining when gluten is eaten Treatment for celiac disease is a strict gluten-free diet for life.

 

MYTH: Oats are allowed on a gluten-free diet.

FACT: The safety of oats in celiac disease has been extensively investigated. Clinical studies have shown that pure, uncontaminated oats are safe for most adults and children with celiac disease. Most commercially available oats are contaminated with wheat or barley. However, individuals with celiac disease must ensure that the oats they are eating are free from gluten contamination.

MYTH: After diagnosis and adherence to a “gluten- free diet”, a person with celiac disease can be considered “cured” and needs no further medical or dietary supervision.

FACT: Follow up with your physician and dietitian is recommended. Check out our follow-up management link with information you can take to your medical professional. https://www.celiac.ca/healthcare-professionals/management/

 

 

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For more information about celiac disease, dermatitis herpetiformis, gluten sensitivity and living gluten free, please contact us:

5025 Orbitor Drive,
Building 1 — Suite 400,
Mississauga, ON L4W 4Y5 Canada

Phone: 905.507.6208
Fax: 905.507.4673
Toll Free: 1.800.363.7296
Email: info@celiac.ca

Charitable Registration# 10684 4244 RR0001

This section of our website is dedicated to providing healthcare professionals with quality information on diagnosis, management and follow-up.

The purpose of the Professional Advisory Council (PAC) is to advise and assist the Canadian Celiac Association (CCA) in its mandate of promoting the welfare of persons with celiac disease and dermatitis herpetiformis, and to increase awareness among the public, governments, and health care professionals of these disorders.

The Professional Advisory Council also advises the association on the direction of funding for research and encourages support for the Association in furthering its goals.

The PAC is responsible for developing and recommending policies and programs related to the medical, nutritional research, and educational aspects of the Association, and setting appropriate standards. It is accountable to the CCA for all matters in this regard.

Learn more about: Screening & Diagnosis,  Management, or Research Awards.

 

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Celiac Disease

Definition

Celiac disease (CD) is a common disorder that is estimated to affect about one percent of the population. It is a condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. Gluten is a group of proteins present in wheat, rye and barley and their cross bred grains. The damage to the intestine can lead to a variety of symptoms and result in an inability of the body to absorb nutrients such as protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.

Symptoms

Patients with CD can present with a variety of symptoms. The classical (typical) symptoms include chronic diarrhea, abdominal pain, malabsorption and weight loss. However, many patients now present with non-classical (atypical) symptoms including anemia, osteoporosis, extreme fatigue, oral ulcers, liver enzyme abnormalities, constipation, infertility, dental enamel defects, neurological problems, etc. Children can present with short stature, irritability, vomiting, etc.

Celiac disease occurs commonly in patients with other autoimmune disorders such as thyroid disease and type-I diabetes. It can also run in families, both in first and second degree relatives. Therefore, screening of these high risk individuals should be considered.

Since many patients with CD do not present with classical symptoms, delays in diagnosis can occur.
More details about celiac disease are available at ….. (provide link to other CCA documents)

Dermatitis herpetiformis is “celiac disease” of the skin. The patients present with severely itchy blistering rash. The diagnosis can be confirmed with a skin biopsy. Treatment consists of strict gluten-free diet and, in some cases, medications.
More details about dermatitis herpetiformis are available at ….. (provide link to other CCA documents)

Diagnosis

(1). Screening
In the past, physicians had to rely on clinical symptoms and signs alone to suspect the diagnosis of CD and select patients who would require further investigations for confirmation. Now, highly effective blood tests are available to screen for CD. The IgA-tissue transglutaminase (TTG) antibody is the currently recommended test for screening. The patients must be on a regular (gluten-containing) diet at the time of testing to make the results valid.

(2). Biopsy
The definitive diagnosis of CD is made by a small intestinal biopsy. The biopsy is performed via endoscopy by gastroenterologists. Again, it is important that gluten not be removed from the diet before the biopsy is completed as it may impair the confirmation of the diagnosis.
More details about the diagnosis of CD are available at ….. (provide link to other CCA documents)

Treatment
At present, there is no permanent cure for CD but it can be effectively treated with a gluten-free diet. The adherence to the gluten-free diet must be STRICT and LIFE-LONG. Gluten-free diet can be challenging and complicated and a consultation with a registered dietitian with expertise in gluten-free diet is essential.

Individuals with celiac CD need to vigilant about hidden sources of gluten and cross contamination in food products. Careful label reading each time when buying products is important.
More details about gluten-free diet are available at….. (provide link to other CCA documents)

Since celiac disease is a chronic disorder, regular long-term follow-up with the physician and dietitian is recommended.

Developed by the CCA Professional Advisory Council
June 2016

 

 

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