Celiac Canada urges federal government to bring tax fairness and affordability measures to support people living with celiac disease.
March 23, 2023
The issues of food inflation, affordability and tax fairness have been an increasing concern for people with celiac disease. Individuals and families facing food insecurity and fixed incomes are particularly vulnerable.
Celiac Canada has drafted two letters offering solutions in advance of the upcoming federal budget and in response to the recent Standing Committee hearings on food inflation and global food security.
· The economic burden of celiac disease is significant.
· Gluten-free products range from cost 74% to 518% more expensive than their gluten-containing counterparts.
· Our community is more vulnerable to food supply chain shortages due to their highly specific and required gluten-free diet.
Davis Family Farm teams up with Celiac Canada selling sunflowers for celiac disease.
March 21, 2023, Mississauga, ON. – Get a jumpstart on your garden planning with a simple packet of local sunflower seeds. Not only will they help brighten your garden this summer, but they will also help change a life of a person with celiac disease.
For the third consecutive year, the Davis Family Farm of Caledon East, Ontario has teamed up with Celiac Canada to sell sunflower seed packets with $5 of the proceeds going to the charity. They are currently on sale until May 31. Sunflower seeds start at $7 per packet including shipping.
At an event celebrating Celiac Canada’s 50th anniversary, also attended by Hon. Sylvia Jones, the Davis Family was recognized with a Change Maker Award. The Davis’s were recognized for their support for the disease which includes not only the sunflower seed sales but also donations from their annual Sunflower Festival resulting in over $90,000 for the charity and increased awareness of the disease to tens of thousands of visitors to their farm.
“My son and I have celiac disease,” says Sean Davis. “Celiac Canada has done so much to support our family with free resources, education and help to navigate our disease and keep us healthy. It is just our way to help sow the seeds of help for other families across Canada.”
Celiac disease is a genetic autoimmune condition that strikes one percent of Canada’s population. Unfortunately, it is still widely under-diagnosed and there is no cure; but if diagnosed early, individuals have a better chance to avoid long-term complications such as neurological disorders, cancers of the gut, anemia, bone loss, and more. The only current treatment is a strict gluten-free health regime.
To purchase sunflower seeds from now until May 31, click here, or stop by the Davis Family Feed and Seed on Mountainview Road, Caledon East.
Over the past 50 years, Celiac Canada is the only Canadian national charity that leads advocacy, provides health education, and invests in Canadian research to help people get diagnosed and empowered.
Media Contact: Melissa Secord, Email: Melissa.secord@celiac.ca, Phone: 905-507-6208 ext. 226
Celiac Canada and McMaster present at Ontario Pre-budget Hearings
February 13, 2023
As part of CCA’s efforts to bring changes to the blood testing coverage in Ontario, Celiac Canada Executive Director Melissa Secord and McMaster Celiac Clinic Director Dr. Maria Inez Pinto Sanchez made a presentation to the Standing Committee for Finance and Economic Affairs during their pre-budget hearings.
To read the 5-minute speech and review the comments and questions from the Committee Members, click here.
CCA returns to where it all began 50 years ago
February 11, 2023
Waterloo, Ontario. On a dark and stormy winter night 50 years ago in February, two woman hosted the first-ever celiac patient group meeting in North America at the Kitchener-Waterloo hospital. To mark the occasion, CCA hosted a reception with invited guests including government leaders, past and present board leaders and volunteers.
The Start of a New Era: Celiac Canada
February 7, 2023
We are pleased to kick off our 50th Anniversary year with the announcement of the change in name to Celiac Canada/Coeliaque Canada from the Canadian Celiac Association.
Five years ago, the National Board of Directors, after a thorough review, realized that change was needed away from individual memberships. Memberships were in decline but the audience for information about celiac disease and gluten free, such as our Facebook Group, was skyrocketing. In addition, there was a growing tension in deciding what information was to be saved for members only versus meeting our charitable mandate for supporting the public. A vote was tabled and passed at the 2019 Annual General Meeting to ensure all people at risk and with celiac disease in Canada had access to the resources and information they need to empower their health. Other similar organizations such as Diabetes Canada have also made this successful transition.
Now that CCA was to be a 100% charitable organization by the end of 2020, there was no longer a need for the word ‘Association’ in our name so Celiac Canada (or Coeliaque Canada) was formally adopted. Given the size of the CCA (we’ll still be known as CCA), our brand transition will take time. We’ve seen incredible support for us as a charity. We continue to grow, developing new resources, programs and research all thanks to individuals like you!
You will also see a transformation with our Gluten Free Certification Program (GFCP) trademark to match the new name on your favourite certified products. This transformation will take place over time in your local grocery stores as companies change over their labels.
While we have changed our name, we haven’t strayed from our founder’s vision. Throughout 2023, we’ll be looking back through time to our two founding women, Kaye Ernst and Nora Reich from Kitchener-Waterloo. They are the inspiration for our Volunteer Recognition Program launching this year. We are going to celebrate individuals who dedicate hundreds of hours each year to give back to the community and make a real difference. In addition, we’ll be celebrating the food manufacturing partners who have been with us for a long time, and who have helped bring safe food options to our community since the GFCP began.
We are truly excited about the year ahead and hope we continue to have your support as we venture into the next 50 years and achieving our vision to have every person with celiac disease diagnosed and empowered. Come along for the ride!
Yours truly,
Melissa Secord, CAE
National Executive Director
How to determine if you could have celiac disease.
Posted January 18 2023.
85 percent of Canadians with celiac disease are unaware that they have the condition. Global News Morning Kingston speaks with the our Executive Director, Melissa Secord, on what to watch out for.
Feeling awful after a big holiday feast? It could be celiac disease.
December 23, 2022
Mississauga, ON – Many of us can feel a little draggy after indulging in everything from enticing finger foods at holiday cocktail parties to full-course meals with the family gathered around the dinner table. But if you feel especially bloated, nauseous, fatigued – or worse – you could be experiencing symptoms of celiac disease.
“It’s estimated that 85 per cent of Canadians with celiac disease are unaware that they have the condition,” said Melissa Secord, Executive Director of the Canadian Celiac Association (CCA). “So, it’s important at this time of year for people to know that the discomforts they might feel after a big holiday meal could be signs of celiac disease.”
What should people watch out for?
- Uncomfortable fullness
- Bloating
- Gas
- Bowel urgency/diarrhea
- Headaches or Migraines
- Extreme tiredness
- Clumsiness or “Brain fog”
“As many as 400,000 Canadians could be living with undiagnosed celiac disease. If holiday eating makes you feel especially queasy afterward, or if you’re exhausted the next day, or if you feel like you can’t quite think straight, these can all be indicators of the condition,” Secord says.
Celiac disease is a genetic autoimmune condition where your body sees gluten as an invader, causing your immune system to fight back to destroy the gluten protein found in foods containing wheat, barley, or rye. Over time, this immune reaction damages the lining of the small intestine, preventing nutrients from being properly absorbed into your body. This can lead to a wide variety of complications and symptoms, and even serious long-term illness.
“If you feel any of these symptoms after holiday season indulgence, take a few minutes and do the Celiac Disease Symptom Checklist on our website at the link below. You might also talk to your family doctor, as they can order a simple blood test that can confirm whether you might have celiac disease,” said Secord.
Canadian Celiac Association Launches Newly Diagnosed Pathway
September 28, 2022
The Canadian Celiac Association is proud to announce the launch of a first-of-its-kind program for people in Canada newly diagnosed with celiac disease or a gluten-related disorder.
“This program is the first-of-its kind to be launched within Canada to specifically target the needs and priorities of those newly diagnosed with celiac disease. The CCA is making an effort to provide better outcomes from the onset of diagnosis, and connect sooner with those that are facing a life-changing diagnosis. The goal is to empower everyone new to our community to build a better life with celiac disease from day one.” – Melissa Secord, Executive Director.
Research shows patients are leaving their doctor’s office following a diagnosis without information or knowing what the future holds. The disease can be overwhelming, isolating and it can be challenging to understand what is safe to eat. The CCA aims to connect with this group earlier and more frequently to provide ongoing support to the newly diagnosed person throughout their journey.
The newly diagnosed program spans one year and includes: educational programs, a newly diagnosed kit available for order or download, digital resources, an online community, access to peer supporters and more.
Canadian Celiac Association Launches Major Health Research Survey
September 25, 2022
This fall, the Canadian Celiac Association is launching a major online research survey to understand if diagnosis rates and the quality of life for people living with celiac disease and gluten-related disorders across Canada has improved over the past 20 years.
“This survey data will be used to advance key issues facing celiac disease patients across Canada and advance our vision to have every person in Canada with celiac disease diagnosed and empowered.” – Melissa Secord, Executive Director.
In 2002, the CCA partnered with Health Canada, the University of Ottawa and Foundation Quebecois Maladie de Coeliaque (FQMC now Coeliaque Quebec) to launch a substantial quality of life survey of the CCA membership. It consisted of 76 questions in a 16-page booklet that was mailed to all 5,200 members in 2002. 3,400 surveys were tabulated in this first round of which 2,600 were confirmed biopsied individuals that were used in the analysis. A copy of the peer reviewed article on the study can be found here.
In 2008 the CCA ran a second, similar survey with improvements to questions and received approximately 7,800 responses from members of which approximately 5,900 were biopsy confirmed celiac disease or dermatitis herpetiformis. It took over 1.5 years to input and assess the data which was hand collected from the paper responses. A peer reviewed paper on the results can be viewed here.
Both studies were widely acclaimed and referenced internationally due to the sample size of the data and depth of questionnaire.
The 2022 survey is an online survey and consists of 75 questions. It takes approximately 35 minutes to complete.
James A. Campbell Young Investigator Research Award Winner
We are thrilled to announce the winner of our James A. Campbell Young Investigator Award. Sara Rahmani is a chemical engineer with a MASc degree in Chemical Engineering from the University of Waterloo. Currently, she is a PhD candidate at the School of Biomedical Engineering at McMaster University, supervised by Dr. Elena Verdu (Medicine) and Dr. Tohid Didar (Mechanical Engineering). Sara’s research focuses on developing an in vitro epithelium model in the form of organoid monolayers from mice that transgenically express the human HLA-DQ2 or HLA-DQ8 molecules encoded by the necessary genes in celiac disease (CeD). She investigates mechanisms underlying the interaction between gluten and the intestinal epithelium. Specifically, she will unravel the inflammatory triggers that switch on the expression of DQ2, necessary for antigen presentation, on organoid monolayers and whether the expression of these molecules promotes the activation of CD4+ T cells. She will also explore how other environmental triggers and drivers of celiac disease, such as opportunistic bacterial pathogens, influence these pathways. Her long-term goal is to engineer a high throughput preclinical screening tool for novel drugs in CeD.
Gluten-free Prices Soaring For Individuals with Celiac Disease
CCA’s Health Promotion Manager and Dietitian, Nicole Byrom talks about rising food prices on CTV news. (July 2022)
Online Food Labelling Consultation
Canadian Celiac Association advocates for safer online food labelling. (July, 2022)
July 12, 2022. Mississauga, ON. During the COVID-19 pandemic, many Canadians increased their online grocery food purchases. For people with celiac disease, knowing what is safe for them to order is critical. Foods sold in-store have a standard labelling format that manufacturers are required to follow. All the necessary information is available at point of purchase. Given the immense importance of knowing what ingredients are in food, online websites for food sales need to provide the same information as in-store. The CCA brought forward this issue of online sales during the pandemic to Health Canada. In May 2022, we shared a survey with the gluten-free community in Canada to gather comments and responses on this issue.
We are pleased announce our participation in Health Canada and the Canadian Food Inspection Agency’s public consultation to inform the development of voluntary guidance on the information that should be provided to consumers when they purchase foods through e-commerce.
We have submitted a formal response document to highlight our community’s key issues. Please find the link below. We thank Shelley Case, Nicole Byron, Caleigh McAulay and all survey participants for helping us move this important issue forward.
Priority Allergen and Gluten Labelling on Natural Health Products are Changing
Canadian Celiac Association applauds NEW federal regulations on Natural Health Products (July, 2022)
New regulations for natural health products require products to have clear, plain and standardized labelling of gluten, allergens and sulphites.
July 7, 2022. Mississauga, ON. Over the past four years, the Canadian Celiac Association (CCA) has been one of several major stakeholders working with Health Canada to help advance clear and plain language changes related to priority allergens and gluten for natural health products sold in Canada. 70% of Canadians consume or use natural health products.1 We are pleased to share that these regulations have been approved by the federal government. Implementation will take up to six years for compliance, so we encourage our community to be diligent during this time.
“This is a major milestone for people with celiac disease and gluten disorders,” says Melissa Secord, National Executive Director of the CCA, “Health Canada has shown its commitment to protect Canadian consumers who suffer from severe food reactions and made it a priority to protect their health, safety and increase accessibility. We also applaud their efforts to assist citizens who have visual impairments by standardizing text size and colour contrast on labels.”
“We also want to thank the gluten-free community and local chapters who supported us by participating in the public consultations by sending letters which helped these regulations come into force for the protection of our health.”
We look forward to working with Health Canada, the Canadian Inspection Agency (CFIA) and gluten-free NHP product partners during the transition and ongoing monitoring to keep our community safe.
CCA will be participating in post-launch regulation meetings and stay tuned for updates and more useful tools to help you navigate your stores.
If you need are a member of the public and struggling with assessing labels for gluten, please check our labelling resources here.
To read more about these changes, please visit Canada Gazette, Part 2, Volume 156, Number 14: Regulations Amending the Natural Health Products Regulations.
400,000 Canadians Could Have Celiac Disease Without Knowing It
May is Celiac Disease Awareness Month in Canada – May 16th is International Celiac Awareness Day
Mississauga, May 16, 2022 – On Celiac Disease Awareness Day, the Canadian Celiac Association (CCA) says as many as 400,000 Canadians could be living with the auto-immune condition, undiagnosed.
“I’ve got this brain fog …”
“Why am I so tired all the time?”
“My whole body aches – but my doctor can’t say why. I’m so frustrated!”
These are the kinds of situations being endured by possibly thousands of Canadians. The question that should be asked more often: “Could it be celiac?”
Celiac disease is a genetic autoimmune condition where your body sees gluten as an invader, causing your immune system to fight back to destroy the gluten protein found in foods containing wheat, barley or rye. Over time, this immune reaction damages the lining of the small intestine, preventing nutrients from being properly absorbed into your body. This can lead to a wide variety of complications and symptoms, and even serious long-term illness.
“We call celiac the ‘chameleon disease,’ because it can manifest itself in so many different ways, causing symptoms which might seem completely unconnected to the digestive system,” said Melissa Secord, National Executive Director of the Canadian Celiac Association (CCA).
Because of its wide range of symptoms, people with celiac disease might not even consider it as the cause of their ailments, and it’s often not top-of-mind for physicians trying to diagnose the problem. It’s estimated that 85 per cent of Canadians who have celiac disease have not been diagnosed – representing more than 400,0001 people – even though a simple blood test could identify it.
“Too many people are suffering and frustrated, but it doesn’t have to be that way,” Secord says. “More people need to ask their doctor, ‘Could it be celiac?’”
REAL LIFE CELIAC STORIES
Canadian speed skater Christine Nesbitt is an eight-time World Champion the winner of two Olympic medals. As a high-performance athlete, she spent her career under the watchful eyes of coaches, doctors and nutrition specialists. Yet she endured pain and discomfort caused by celiac disease for five years before anyone spotted it.
“As an elite athlete, I was always physically and mentally pushing myself. I experienced a lot of digestive, nutritional and skin issues, but they were always thought to be from the fatigue and rigour of training, and the stress of racing,” Nesbitt said.
“I thought, ‘my iron is low because I train so much and I need to eat more iron-rich foods,’ or ‘I’m fatigued and maybe I’m not eating well enough’ or ‘I pushed myself too hard in some of my training sessions.’ Being tested for celiac disease wasn’t on anyone’s radar for years and years.”
For Sonia Pereira, a Vancouver writer and content creator, celiac disease impacted her neurologically.
She had episodes of not being able to speak properly or being unable to read her computer screen. It also affected her balance and coordination. Sonia saw a multitude of specialists, trying to identify what was wrong.
“I was mis-diagnosed as having had a stroke. It almost went from ‘you’ve had a stroke’ to ‘we have no idea’ and ‘maybe it’s something like migraines,’” she says.
It took more than four years and 30 doctors to finally diagnose Pereira with celiac disease. “Even the doctor that figured out my disease, that wasn’t his number one, it was number three on his list of three things … that’s why, for anyone who’s on the ‘what’s wrong with me spectrum,’ get them to run the (blood) test.”
Pereira says within two weeks of removing gluten from her diet, she was “back to being myself.”
COULD IT BE CELIAC?
If you think you might possibly have celiac disease, take the symptom checklist.
The information it provides can help facilitate a more informed discussion with your doctor. The blood test to screen for celiac disease is covered under all public health insurance plans in all provinces except for Ontario where it is temporarily covered under a pilot program until March 31, 2023.
While there is no cure for celiac disease, it can be effectively managed by eliminating gluten from the diet. The Canadian Celiac Association has partnered with Promise Gluten Free to help promote options for people with celiac disease.
“Going gluten-free isn’t the end of the world anymore,” says Mohamed Safieddine, Commercial Director, Canada for Promise Gluten Free. “There are great tasting, fibre-rich breads, tortillas, pitas and more out there to help you eat well and stay healthy.” Promise Gluten Free is the official sponsor for Celiac Awareness Month.
CELIAC AWARENESS DAY – “SHINE A LIGHT” ILLUMINATION LOCATIONS
On Monday, May 16th, iconic buildings all over the world will be lit up in green to raise awareness for International Celiac Disease Awareness Day. Canadian sites that will be bathed in green light are:
City Hall – Dieppe, NB (all of May)
City Hall – Charlottetown, PEI
Ottawa Sign (ByWard Market), Shaw Centre – Ottawa (May 16-20)
Toronto Sign, CN Tower – Toronto
Niagara Falls (10 p.m. May 16)
Cambridge Sign – Cambridge, ON
Winnipeg Sign (Forks), Manitoba Legislature – Winnipeg
High Level Bridge, Hotel McDonald, Epcor Tower – Edmonton
Sherwood Park Community Centre & Festival Place – Sherwood Park, AB
Calgary Tower – Calgary
BC Place, Science World, Burrard Bridge, City Hall – Vancouver
About the Canadian Celiac Association
The Canadian Celiac Association’s vision is to see every Canadian with celiac disease is diagnosed and empowered. Since 1973, the CCA has been increasing awareness of the disease, investing in research and providing programs to support people with gluten disorders with help from local chapters across Canada in most major cities.
About Promise Gluten Free
Promise Gluten Free offers an irresistible range of gluten free breads, crafted using a unique bread-making technique that delivers excellent taste and quality. From Soft White Loaf to its tantalizing Brioche Loaf Promise Gluten Free offers the finest, delicious, nutrient-rich, baked goods that everyone will love.
All produced from the Promise Gluten Free family-run, dedicated gluten free bakery which has over 50 years of craft baking expertise and are available in Canada Nationwide via our online shop, Real Canadian Superstore; Avril; IGA; Saskatoon CO OP; Farm Boy; Food Basics; Thrifty Foods; Sobeys Urban; Safeway; Freshco; Foodland and some Metro’s and Wholefoods.
To find out more details please check out our website www.promiseglutenfree.ca
1. It is conservatively estimated that 1% of the population has celiac disease, or 386,815 Canadians. Of them, only 15% (58,002 people) are diagnosed, leaving 328,793 Canadians who likely have celiac disease but are not yet diagnosed.
Health Canada wants your thoughts on on-line food purchases
During the COVID-19 pandemic, many Canadians increased their online grocery food purchases. For people with celiac disease, knowing what is safe for them to order is critical. People need to be able to clearly know what is in the ingredient list before they purchase. CCA has been a vocal stakeholder on the issues of surrounding online food purchases raising the issue with officials and at Health Canada Food Summit meetings.
Please take a moment to help share your online food shopping experiences with Health Canada by July 9, 2022
Read here to learn more about the public consultation and to read the proposed guidance.
Take the survey here.
-Posted May 11, 2022
Newly funded celiac blood tests will help close the gap to diagnosis, increase access to treatment.
85% of people at risk for celiac disease are likely undiagnosed.
April 4, 2022, Mississauga, ON. The Canadian Celiac Association (CCA) hopes that an Ontario Ministry of Health pilot program which includes providing funding for crucial blood tests for celiac disease will be made permanent, to ensure ongoing screening of the 1 in 117 Ontarians at risk for the autoimmune disorder.
The pilot announced last November has been officially extended until March 31, 2023 and allows Ontario residents to be screened for celiac disease among other tests at an approved community-based laboratory, at no cost to the patient.
“Ontario has the unfortunate distinction of being the only province in Canada that does not cover these vital tests through the provincial health insurance plan,” says Melissa Secord, National Executive Director of the Canadian Celiac Association.
“We are hoping that the Ministry of Health will see the tremendous value in offering the free tests at community labs, not only by shrinking the gap to diagnosis but reducing up to 10 years of health decline which people with celiac disease can endure.”
“That could improve the quality of life for the estimated 100,000 Ontarians at risk for the disease and could generate potential savings for the health care system of as much as $125 million over the same period.[1]”
Celiac disease – a genetic autoimmune disorder where gluten, a protein found in wheat, rye, and barley, causes an inflammatory response damaging the intestinal lining – frequently goes undiagnosed. The cost of the tests span from $65 to $150 depending on what is ordered, which is a deterrent for many Ontarians on low or fixed incomes. Celiac disease is genetic, so the potential cost to a family of four to get screened is over $400. The tTg IgA and IgA blood tests are recognized internationally as the first step to clinical diagnosis.
“If we can get permanent OHIP coverage, the tests will be added to the regular laboratory requisition form used by family doctors. Right now, the tests are not listed because historically they are paid for by the patient. Celiac blood tests are often missed by health practitioners when selecting blood work to screen for health problems,” Secord said.
“Prior to the pilot, the only way to have the tests covered was to be hospitalized. Given the current pressure on the health care system from COVID-19, this is not an appropriate use of hospital services and resources, nor good care for patients. In addition, health care dollars were being wasted on needless trips to multiple practitioners, emergency rooms, and on expensive inappropriate tests such as ultrasounds, x-rays and other blood work.”
Delays in diagnosis of celiac disease can lead to malnutrition, osteoporosis, neurological problems, reproductive issues, arthritis, other autoimmune diseases, and even cancer.
To learn more about the pilot, understand your risk for celiac disease and to take our Symptom Quiz, click on the links below.
The Canadian Celiac Association’s vision is to see every Canadian with celiac disease is diagnosed and empowered. Since 1973, the CCA has been increasing awareness of the disease, investing in research and providing programs to support people with gluten disorders with help from local chapters across Canada in most major cities.
[1] Calculations are based on 100,000 Ontarians estimated to be undiagnosed celiac disease factoring in cost of treatment of average health complications.
McMaster University launches research study to investigate adverse events post- COVID19 vaccine in patients with a diagnosis of celiac disease compared to the general population
Vaccines protecting against coronavirus (COVID-19) have raised many questions from people with celiac disease, who are concerned about the risk of developing severe consequences.
There is no data comparing the frequency of adverse events post-vaccination in people diagnosed with celiac disease compared with the non-celiac population.
In collaboration with other experts from different countries including Canada, the United States, Italy, Spain, Germany, the Netherlands, Mexico, Argentina, Brazil, Uruguay, New Zealand, Australia, and the United Kingdom, we have developed a short survey related to COVID-19 vaccines in celiac and non-celiac populations.
We would like you to share with us your experience with COVID-19 vaccines, symptoms developed post-vaccination if you are vaccinated, or your concerns related to vaccination if you are not vaccinated.
The completion of this survey is voluntary, and you may skip a question that you do not feel comfortable answering. No identifying data will be collected through the survey questions, therefore all data collection will be anonymous.
Consent to participate in this survey-based study is implied by clicking on the link to the survey or completing the survey. You may stop at any time and not submit the survey. However, once the survey is submitted, data may not be withdrawn and it is stored anonymously.
We anticipate it will take 3-5 minutes to complete.
CCA Weighs in on New Standards for Long-Term Care in Canada
Long-term care (LTC) is for people requiring accommodation who can no longer live safely on their own. The facilities provide, high levels of care, 24-hour nursing care, meals, and housekeeping, along with social and recreational activities for their residents.1
In the fall of 2021, the Prime Minister directed the federal Minister of Health to undertake a commitment to improve the national standards for long term care homes in Canada.
The standards review has been assigned to a joint initiative by The Standards Council of Canada (SCC), Health Standards Organization (HSO) and Canadian Standards Association (CSA Group) to design, “two new national standards for LTC that will be shaped by the needs and voices of Canada’s LTC home residents, workforce, local communities, as well as broader members of the public.”2 The public consultation process was open from January to March 27, 2022.
In 2018, the CCA studied 52 long term care facilities of varying sizes to assess the accessibility of the gluten-free diet in these facilities. CCA also led a patient survey alongside to weigh patient or caregiver satisfaction levels of accessing and receiving care. Our study, that has been submitted for poster presentation at the 2022 International Celiac Disease Symposium in Italy, concluded that availability of LTC facilities that provide safe GFD is limited. Food preparation practices are sub-optimal, with potential risk of gluten cross-contamination.
With this study in hand, CCA has submitted its formal feedback as part of the consultation urging that the right to safe, properly resourced gluten-free be part of the revised standards. People with celiac disease deserve safe, accessible care at their most vulnerable point in life. Strategies and training need to be developed to properly educate various food service providers in LTC facilities and CCA has offered its expertise to help with this education.
CCA has offered comments on the following 10 sections of the standard:
- Governing LTC Home’s Strategies, Activities, and Outcomes
- Promoting Resident-Centred Care with a Compassionate, Team-Based Approach
- Providing a Welcoming and Safe Home Environment
- Respecting Residents’ Rights
- Enabling a Meaningful Quality of Life for Residents
- Delivering High-Quality Care Based on the Life Experiences, Needs, and Preferences of Residents
- Enabling the Delivery of High-Quality Care through Safe and Effective Organizational Practices
- Coordinating Care and Integrated Services
- Enabling a Healthy and Competent Workforce
- Promoting Quality Improvement
CCA President issues letter to Minister of Public Safety regarding access to gluten-free food for people with celiac disease in quarantine. – December 7, 2021
CCA Executive Director weighs in on woman with celiac disease who went 40 hours without food in quarantine.
Celiac Blood Test Covered by OHIP for next 5 Months in Ontario
After 10 years of advocacy work by staff and volunteers the Canadian Celiac Association (CCA) National office, we are pleased to share a new pilot program by the Ontario Ministry of Health will cover the cost of initial blood screening to help diagnose celiac disease (CD) in Ontario at any approved community-based laboratory. The dates for the Pilot Program are November 1, 2021 – March 31, 2022.
Ontario has been the ONLY province in the country not to cover the blood screening test for CD. This is despite the tests being part of standard clinical practice around the world. The announcement was made in a November 1 Info Bulletin.
CCA Advocates for Allergen Labelling on Natural Health Products
Over the past four years, CCA has been one of the major stakeholders working with Health Canada to help advance the introduction of priority allergen labelling including gluten on natural health products. This is a major milestone and innovation according to Health Canada representatives in a recent online session for the launch of the new clear and plain language labelling regulations. Up and until now, natural health products were not required to list any allergen, gluten, or aspartame ingredients leaving the celiac community for serious adverse reactions to products they were ingesting to help improve health. Allergen and gluten identification is now seen as high priority for Health Canada as it reviews new regulations thanks to the work of stakeholders.
“CCA was pleased to be an important stakeholder at the table over the past number of years to help offer our community’s perspective on the importance of clear labelling for people with adverse reactions to gluten. We are pleased to support the regulatory changes to have clear allergen and gluten warnings on natural health products – a long overdue change. We hope the government will move forward with the proposed amendments but also review our additional recommendations for better testing and monitoring, improvements to online retail sales and allergen and gluten disclosures on prescription medications.” – Melissa Secord, National Executive Director
After the public consultations are completed, the government will review the feedback and make its recommendations to the Treasury Board for approval and publish in the next year.
CCA addresses celiac disease patient challenges to Ontario medical round table
The Ontario Medical Association (OMA) recently sought recommendations from a wide range of stakeholders from patients, other health care professions, and patient groups like the CCA. They are developing recommendations to table with the Ontario Government to help drive key themes to transform the healthcare system which is broken and strained under the weight of the pandemic. Their theme- It’s time to Recover, Rebuild and Rebuild Smarter.
Click HERE to learn more about the OMA recommendations and key points addressed by the CCA.
CCA Resources Now Available in Punjabi and Arabic
TORONTO, June 16, 2021 (GLOBE NEWSWIRE) — As part of its ongoing effort to help Canadians suffering with celiac disease in the country’s diverse ethnic communities, the Canadian Celiac Association (CCA) today announced the release of Punjabi and Arabic language versions of its “What is Celiac Disease” and “Living Gluten Free” brochures. Both resources provide the Canadian Arabic and Punjabi communities with vital information about the disease, getting tested and dietary tips.
Click to learn more about the Punjabi resources. Click to learn more about the Arabic resources.
Listen to Shelley Case on CBC Regina radio on celiac disease
Lighting Up the Night for Celiac Disease on May 16th
International patient organizations unite to raise awareness of genetic autoimmune disease.
MISSISSAUGA, Ontario, May 13, 2021 (GLOBE NEWSWIRE) — On Sunday, May 16, iconic buildings all over the world, including those in Toronto, Vancouver, Montreal, Boston, Edmonton, Nashville, and New York City, will be lit up in green to raise awareness for International Celiac Disease Awareness Day. Among the Canadian buildings that will be bathed in green light are the CN Tower (Toronto), Olympic Stadium (Montreal), Prairie Wind at Riverplace (Saskatoon), Calgary Tower (Calgary), Epcor Tower (Edmonton) and BC Place (Vancouver).
Click here to learn more.
Shine A Light on Celiac International Site
CCA is setting the record straight – celiac is not pretend
TORONTO, May 03, 2021 (GLOBE NEWSWIRE) — May is Celiac Awareness Month and the Canadian Celiac Association (CCA) is setting the record straight for Canadians suffering with celiac disease.
CCA adds patient voice to Agriculture Canada and Agri-food review of Canadian Grains Act
Access to safe food starts with the safe growing practices for gluten-free grains and ensuring their safe distribution and handling along the food production cycle.
Click to read submission. Click to view Agriculture Canada Consultation
April 30, 2021
Canadian Celiac Association Joins Glutino on Easter ‘Save Me for Gluten-Free’ Food Drive
MISSISSAUGA, Ontario, March 31, 2021 (GLOBE NEWSWIRE) — As the Easter long weekend approaches, the attention of Canadians will soon turn to preparing special ‘bubble-safe’ dinners with loved ones, but for people with celiac disease, who also rely on food banks, this time of year painfully underscores their struggle to source safe food, a problem made worse by the pandemic. Click to learn more.
-March 31, 2021
Canadian Celiac Association Launches Holiday Survival Campaign with Nairn’s
Resources Address Gluten-Free Food Insecurity, Dietary Guidance and Mental Health Challenges During Pandemic – Click to read more.
-December 17, 2020
CCA’s Professional Advisory Council issues statement on celiac disease and COVID-19
The novel Coronavirus has caused some questions among many groups including people with celiac disease. Click to learn more.
-December 15, 2020
Canadian Celiac Association offers up to $30,000 for celiac disease research
Requests for research proposals are now open to February 15, 2021 Click to learn more.
-December 2, 2020
Is gluten a problem?
If gluten is a problem for you, it could be celiac disease. CCA teamed up with the Toronto Star and other digestive health disorder groups to raise awareness. Click to learn more.
-November 28, 2020
CCA celebrates the life of Dr. Oats
Vernon Burrows, an Officer of the Order of Canada, passes at age 82 leaving a legacy of the first gluten-free oats in the world.
-November 19, 2020
A Canadian research team conducts first global study of COVID-19 and Celiac disease
Canadian Celiac Association partners with McMaster University
At the advent of the COVID-19 pandemic, a team of researchers from McMaster University—in partnership with the Canadian Celiac Association (CCA)—sought to determine if people with celiac disease were at an increased risk of contracting COVID-19. This is the first large-scale global study of its kind and was led by Dr. Maria Pinto Sanchez at McMaster University.
Click here for link to release on wire service
Meet the new CCA President
CCA’s new President, Janet Bolton, and Executive Director, Melissa Secord had a chance to share some of the exciting work of the CCA over the past summer and upcoming fall with Sue Jennett on her “A Canadian Celiac Podcast.” Sue is the president of the CCA Kingston Chapter and offers a regular podcast that often features CCA thought leaders and updates.
Click here to listen to Janet Bolton http://bit.ly/Ep138CCAPresidentJanetBolton
Click here to listen to Melissa Secord – http://bit.ly/Ep135CCAUpdate
CCA Professional Advisory Council releases statement on gluten in medications
Gluten in Medications – Published July 2020
July 7, 2020
Health Canada warns Canadians with celiac disease and gluten disorders on products originally destined for the United States
CCA and Coeliaque Quebec alerted Health Canada about issues with its decision in April in response to the COVID-19 outbreak to allow Canadian manufacturers of food service items destined for the United States to be sold in Canada. The concern is specific to products made with barley or rye. In the United States, only the top eight allergens are listed by their plain name and rye and barley are not one of them. The issue is mainly with barley as ingredients such as malt or yeast extract, which are derived from barley, would not necessarily be known by consumers to contain gluten. Health Canada has issued an advisory to manufacturers to ensure their redirected products are labelled correctly but there is a risk that products could be missed. CCA recommends consumers be alert to larger-sized packaged foods and/or with English only labels to help identify these US products. Although they feel the risk is low, Health Canada has issued a consumer advisory.
June 15, 2020
CELIAC ORG TO REPLENISH CANADA’S FOOD BANKS WITH GLUTEN-FREE OPTIONS DURING PANDEMIC
Canadian Celiac Association (CCA) Partners with Promise Gluten Free
TORONTO, May 15th, 2020 – For Canadians with celiac disease who are increasingly relying on food banks during the COVID-19 pandemic, securing gluten-free foods has become more difficult than ever.
-May 15, 2020
CCA surveyed thousands of Canadians with celiac to see what they know about oats.
-May 2020 – Click for summary of results
Food Labelling for Some Barley Based Ingredients
The Canadian Food Inspection Agency (CFIA) has recently issued an advisory to allow some food products to be sold in Canada that were previously destined for the United States market.
While health and safety related labelling requirements such as Canada’s enhanced labelling regulations for gluten sources still apply, CCA has flagged some potential issues with BARLEY. There is a potential risk that food produced in Canada but packaged and labelled for the United States might not identify barley containing ingredients, as required on food sold in Canada. Consumers and purchasers should be alert to malt and yeast extract ingredients listed on US labels. Malt is barley based. Yeast extract can be found in soups, sauces, seasoned chips and other savoury products.”
CCA Notice of Annual General Meeting
The CCA will be holding its Annual General Meeting in accordance with its bylaws on Saturday, June 6, 2020 via online meeting. Only voting chapter members and National Directors are required to attend. Special guests may be included but must be requested in advance to the CCA President. Please contact president@celiac.ca
-May 8, 2020
Gluten-free Campaign Asks, “How Do You Sandwich?”
-May 5, 2020
Celiac Campaign Delivers Relief To Canadians Living With Condition During Pandemic
Canadian Celiac Association (CCA) Launches Resources to Help Canadians Navigate COVID-19.
-April 30, 2020
CCA offers new resources for food banks and list of locations for those in need
CCA National teamed up with its local Chapters to identify food banks and agencies offering gluten-free food along with developing resources for food banks that would like to support our food at risk individuals. Click here.
-May 1, 2020
Ottawa gluten-free verified dining establishment adapting through COVID-19
CTV Ottawa took time to feature Ottawa’s La Dolce Vita on how it’s thriving during COVID-19 and offering delicious and safe gluten-free food. Check video here.
April 22, 2020
CCA included in over 200 charities seeking protection during COVID-19 outbreak
Over 200 major charities form Emergency Coalition to save sector and maintain support to Canada’s most vulnerable. Click for more.
COVID-19 resources
CCA has developed a special page to host our resources for the Canadian gluten-free community. Click here.
Food Insecurity and celiac disease
During this difficult time, people with celiac disease may find themselves losing their jobs, facing financial challenges and need to access a local food bank or service agency. Click here to learn more.
Oats Research Survey
The Canadian Celiac Association’s Professional Advisory Council would like to learn more about the oat consumption of Canadians who must eat gluten-free. The survey will only take 1-2 minutes.
Deadline: March 25, 2020
CCA National Board seeks directors for 2020-2022
The Canadian Celiac Association (CCA) is seeking nominations for positions whose terms will run from appointment to June 30, 2022. Click here for details. – January 12, 2020
Dr. Mohsin Rashid on the key differences between celiac disease and a wheat allergy
Celiac disease, Wheat allergy… what’s the difference? While symptoms can overlap, celiac disease and wheat allergy are two distinct disorders. Click here to read.
NHL draft prospect shines light on success after diagnosis
“He’s got to the stage where it’s under control,” said Marr, whose department lists Kakko as the top European prospect. “He knows what his limits are. He knows what he needs to do to be at 100 per cent. As long as (his diet) is managed and well managed, I don’t think it’s going to influence the decision on draft day.” Click here to read the story.
-June 20., 2019
CCA Pushes For OHIP Coverage of Celiac Blood Test, Amongst Other Awareness Day Initiatives
For International Celiac Awareness Day, the Canadian Celiac Association (CCA) plans to meet at Queen’s Park at 10:30 a.m. to call on MPPs to support OHIP coverage for the IgA TTG serological test for celiac disease. Click for details.
-May 16, 2019
National survey to study confidence in ‘May Contain’ food labelling in Canada
Celiac association asks gluten-free consumers and dietitians to weigh-in
Mississauga, ON – The Canadian Celiac Association (CCA) as part of its May Celiac Awareness Month activities launched a nation-wide survey of gluten-free consumers and dietitians to gauge the confidence and understanding of the use of the ‘May Contains’ labelling on Canadian food products. Click for more.
-May 10, 2019
Daytime CBC Radio – Not even a crumb of gluten, living with celiac disease.
Listen to this great interview with Montreal pediatric gastroenterologist, Dr. Terry Sigman, and her 11 year old patient on the challenges of diagnosing and managing celiac disease.
May 3, 2019
CCA launches national ‘may contain’ labelling survey for gluten-free consumers
The Canadian Celiac Association’s Professional Advisory Council has launched a research survey to better understand consumers who require a gluten-free diet and their attitudes towards ‘May Contain’ labelling on food products sold in Canada.
-May 2, 2019
New Labelling Requirements Coming to Beer
CCA among key stakeholders that called for changes to beer labelling to protect consumers.
Mississauga, ON. May 1, 2019 – The Canadian Celiac Association (CCA) is lauding the announcement today from Health Canada and Canadian Food Inspection Agency that a part of the new compositional standards for beer will be a requirement for allergy labelling including gluten by December 14, 2022.
-May 1, 2019
Delays in celiac disease diagnoses costly for Canadians
Canadian Celiac Association (CCA) Launches Symptom Quiz to Help Undiagnosed Canadians Avoid Years of Unnecessary Suffering
-May 1, 2019
CCA releases guidance for primary care providers on the gluten challenge to improve diagnosis rates
How much gluten must be consumed by a patient after being on a gluten-free diet (GFD) in order to be accurately tested for celiac disease? Learn more.
-April 15, 2019
Canada’s iconic buildings to display green for Celiac Awareness Month this May
May is Celiac Awareness Month in Canada and May 16 is internationally recognized as Celiac Awareness Day. This year five major cities across Canada will display green lights to mark the occasion. Click here for details – April 2019
Young adults and their food choices study
The laboratory of Dr Anne-Sophie Brazeau of School of Human Nutrition at McGill University is currently looking for adults with and without type 1 diabetes who are 18 to 29 years old to participate in a study on food literacy. The main objective of the project is to understand the motivations and barriers of young adults with type 1 diabetes in integrating their knowledge of nutrition into practical skills. This study involves answering a questionnaire lasting about 25 minutes.
CCA responds to proposed amendments to Canada’s vodka standards
CCA’s Response to Proposed Changes to Vodka Standard. -March 14, 2019
CCA is hiring.
We’re looking for a Fund Development Coordinator. Click here to learn more. – March 13, 2019
CCA urges changes to federal taxes before federal budget
CCA President issued a letter during the pre-budget consultations to Finance Minister Morneau. Read the letter here. -March 2019
CCA releases results of Agri-Food Canada funded study for access to gluten-free grains
CCA releases project highlights for enhancing access to Canadian sources of certified gluten-free grains and testing protocols. Read more… – February 4, 2019
New Canada Food Guide: What is the impact if you are gluten free?
Health Canada released its new Food Guide to public. For Canadians who require a gluten-free diet, CCA offers direction on key nutrients and food sources that need to be carefully managed. Read more… – January 23, 2019
CCA wants to know what is your Celiac IQ?
Would you know how to accurately diagnosis celiac disease? This is the question CCA is asking Canadian healthcare professionals at the Family Medicine Forum being held in Toronto this week. Learn more and take our test. -November 14, 2018
CCA National response to proposed amendments to beer composition standards
As the voice for people adversely impacted by gluten, CCA has issued its formal response to the proposed changes to beer composition standards. Click link for CCA Response Click to view proposed amendments -September 7, 2018
Management of Bone Health in Patients with Celiac Disease: A Practical Guide for Clinicians
The Canadian Family Physician Journal has published a review article to be used as a practical guide for clinicians when managing and monitoring bone health in patients with celiac disease. -June 14, 2018
Health Canada Report on Celiac Disease
Health Canada published a report on celiac disease and the gluten connection to increase awareness for Celiac Awareness Month. The report discusses prevalence, risk factors, symptoms, diagnosis and treatment. -June 4, 2018
Minister of Health’s Statement on Celiac Disease Awareness Month
The Minister of Health made a statement in support of celiac awareness month. She discusses the large impact the disease has on an individual’s quality of life and how it affects a large portion of the population. Read it here. -May 29, 2018
Lack of OHIP coverage for celiac test causing costly increases in treatment delays and health risks for Ontario patients
Adult patients in Canada with undiagnosed celiac disease can expect an average delay of 11 years before receiving an accurate diagnosis of their condition,1 while the typical delay for children is 1 year. 2 Celiac disease – an autoimmune disorder triggered by the consumption of foods containing gluten (a protein found in wheat, rye and barley) — affects 1 in every 100 Canadians, but only 10 to 20% of patients with the disease have been diagnosed.3 It’s a situation the Canadian Celiac Association (CCA) is aiming to change, especially in Ontario, which is the only province that currently doesn’t cover the blood test necessary for detecting celiac disease under its provincial health insurance plan. -May 3, 2018
Canadian Celiac Association is asking Canadians to #GoBeyondTheGut
May is Celiac Awareness Month and the Canadian Celiac Association (CCA) is urging people to #GoBeyondTheGut and to be alert to the “atypical” (non-classical) features of celiac disease. -May 1, 2018
Update: Sobeys Inc. Sensations by Compliments brand Pecan-Crusted Cheesecake Collection Reinstated Quickly
On April 4 2018, with the assistance of the Canadian Food Inspection Agency (CFIA), Sobeys initiated a recall for their Sensations by Compliments Brand Pecan-crusted Cheesecake Collection from the marketplace because it contained wheat which was not declared on the label. Click the link for update. -April 4, 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
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 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
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
