“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
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.
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!