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It was as if our family was living a nightmare.
It began when Mom’s health declined to the point that she needed to go into a retirement home with medical assistance and later into a long- term care facility. This is where her health and her celiac journey took a turn for the worst.
Mom was diagnosed with celiac disease at age 70. While we initially cried and struggled at first, thanks to her positive attitude, razor sharp focus on dietary management and help from support networks, we seemed to manage.
She was already used to living with Type-1 diabetes from a young age. She often said, “Linda, hold your head up high and prove people wrong when they say you cannot do things because of your health issues. Make changes. Make a better life for yourself and others.”
However, what we weren’t prepared for was the dietary discrimination, marginalization and downright fear when trying to find her assisted living. Our family checked out many retirement homes only to find out that most were not equipped, could not afford or were not willing to go the extra step to feed a person with celiac disease. There would always be cross contamination.
The features of comfort, location, programs and staff that one normally seeks in a care facility suddenly took a back seat once we found out how difficult keeping her food safe would be in these facilities. It wasn’t easy and it was becoming increasingly expensive. We were shocked to learn that we would have to pay the full fee, even though Mom would not be able to eat most of the food that was offered! The emotional trauma was now becoming financial as well.
We finally found a home that we were sure would work out. Mom was happy but apprehensive. Change is hard and luck was not on our side.
We soon became very concerned because what we saw and what we were told was very different.
Mom was becoming increasingly ill and very weak. She became isolated and showed signs of being constantly cross contaminated. The home itself was a lovely place, but in the end the manager agreed that it was not as gluten free as we were led to believe.
Mom was admitted to hospital and then moved to a temporary location where her health started to fail even more as the cross contact continued. She was now too sick to advocate for herself. Mom was hospitalized one last time and she never recovered.
After less than one year in care homes and hospitals, the damage to her digestive system was too extensive, her body too sick to heal. She died with her family by her side.
Celiac disease does not discriminate. People of all ages — your mom, dad, sibling or grandparent — because of age or circumstance might find themselves in a hospital or assisted living where they cannot self-advocate or control the food they consume.
Change needs to be made now and you can be the difference. Together with Celiac Canada’s help; we can ensure no one else has to suffer like my mother did.
Jennifer Palma, BC Global News Anchor
l was an adult in my early 30s when I was officially diagnosed with celiac disease (CD) but had not felt well since I was a child. As a child I naturally avoided certain foods like pasta and pizza, as they never agreed with me. By the time I was diagnosed I was extremely sick. Just prior to my diagnosis I was unable to walk, I looked gaunt and frail, I was always bloated and feeling unwell. In fact, my producers called to check in on me asking if I was OK because I looked so sick. One day at work I could not stop vomiting and assumed I had a bad case of the flu. That day I came home, and my husband had to carry me up the stairs. I could not keep anything down including water. Thinking this was the flu I nursed myself with tea and toast, which only made it worse. Two days later, I ended up going to the doctor and was sent immediately for an emergency endoscopy. When the results came back, I was shocked to hear it was celiac disease.
I was diagnosed with celiac in 2010. Presumably I had gone undiagnosed since birth (21 years). Leading up to the diagnosis, for years I had suffered from stomach discomfort, fatigue, bloating, nausea, stomach pain, and diarrhea (TMI I know – sorry). Current state I suffer from below average bone density levels. These levels are so low that I’m teetering on the edge of an osteoporosis diagnosis at the moment. The doctor believes this is a result of years of malnourishment from before I was diagnosed and moved to a gluten free diet.
During the 21 years I went undiagnosed, a lot of the symptoms I was suffering from I thought were normal – I didn’t know any better. Looking back, that was the most eye opening realization.
Since there is a certain level of heredity to celiac, many have the disease from birth which makes it nearly impossible to discern whether something is not right with your body. As I went into my last year of university, I became determined to find out why I felt the way I did. I worked with a gastroenterologist. At the time, celiac awareness was mediocre at best. I myself hadn’t heard of it until I learned about it through my research. The doctor and I went through a few tests to rule out different ailments and I suggested that I should be tested for celiac, however, he didn’t think it was necessary. He believed that celiac was only prevalent in Caucasian and Asian Canadians individuals. I pressed the topic and despite the fact that diagnostic blood test was not OHIP covered (he mentioned this to me as a detractor to avoid getting tested) I went forward. To his surprise the test came back positive.
Maintaining a gluten free diet is hard. My symptoms have approved and overall health is in a better place but some effects are irreversible. I don’t have a ton of clarity on how long it can take to reverse the damage done to your body but I’m hoping I’ve passed that marker a long time ago. I know my bone condition is unchangeable. It’s also the reason why I’ve always been unable to put on any weight (I’m quite thin).
All of that said, I’m thankful for the work that CCA is doing. Having the diagnostic blood test now covered by OHIP I believe is a milestone achievement and one that should help alleviate the barriers to many trying to find their way.
The blue emblem (GFCP Logo) on food has also become an immediate touch point for my eyes as soon as I pick up anything at the grocery store. I have become an expert label reader but with the dreaded “may contain” statements and what can be sometimes convoluted descriptions, the blue emblem gives me assurance and makes shopping a smoother experience.
Eight-time world champion, and Olympic gold and silver medalist, Christine Nesbitt
As an eight-time world champion, and Olympic gold and silver medalist, my athletic journey was supported by some of Canada’s best medical and nutrition experts. Despite this expertise, a diagnosis for celiac disease was not easy. I went undiagnosed for years, suffering unexplained symptoms just like many undiagnosed Canadians.
Since I was young, I suffered from digestive problems. These symptoms continued into my teens. When I was well into my speed skating career my symptoms continued but the team doctor chalked my issues up to stress and anxiety. It simply became ‘my normal’.
But when I was about 27 years old, my symptoms had become progressively worse. I realized this was no longer ‘normal’. As an athlete, I had always struggled with low iron, extreme fatigue, but my other teammates on the same regime were not experiencing it. The tipping point for me was my daily, extreme bloating. In the morning, I would wake up feeling and looking like myself, but by the day’s end, I was extremely uncomfortable in my own skin, with my stomach engorged from terrible bloating.
After a number of tests, including an allergy test, my coach pushed for me to get a blood test for celiac disease. The team doctor did tests and reassured me that, ‘No it won’t be celiac disease. It’s okay.’ But soon after I got a panicked phone call from him saying, ‘Stop eating gluten!’ A follow-up biopsy confirmed it was indeed celiac disease.
To reach my Olympic goal for the Sochi games in Russia, I wanted to heal as quickly as possible. I ate many meals on my own, away from my teammates and friends, to avoid anything that would cross-contaminate my food. I often felt isolated from my team, but my coach was always there for me. It helped immensely to have her by my side. I am grateful that she supported my overall health as a person, and not just as an athlete. I have to say it was a bit of relief to know what was wrong with my health. I could now focus on my goals.
For people with celiac disease, CCA is our coach every step of the way. Leading research and keeping abreast of the latest knowledge. Advocating with government to protect our food. Teaching us how to navigate our long-term health. Raising awareness to help others get a timely diagnosis. Our patient community is our team, supporting each other to reach our best selves and I am proud to be part of it.
Still years after diagnosis, continue to experience some issues related to celiac disease. I have been grateful that CCA has dietetic expertise on staff who can help me navigate these challenges. Their labelling guides, webinars, tips sheets and newsletters have all helped me manage my daily life and the assurance that I am not alone.
Not only health advice, education and resources, for nearly 50 years CCA and its volunteers have been working to build a better future for all of us. But they can’t do it alone.
Will you join me in supporting the CCA? – Christine Nesbitt
Nick Pelletier, Ultra Endurance Athlete and Extreme Adventurer
My journey to diagnosis started at the age of 5. Over the time frame of a few months, my family and I started to notice changes in my health, but were unaware of the cause. I suffered excruciating stomach pains most days, a large and bloated abdomen area, a substantial loss in weight, a paleing of my skin, and many days involving vomiting. After a number of attempts at different diets, x-rays, examinations, and ultimately a biopsy, I was diagnosed with Celiac Disease. I got put on a strict Gluten free diet, and things began to get better. Slowly but surely, I regained weight & energy and became a normal kid once again.
Being a Celiac from such a young age has taught me the importance of discipline in life. Without discipline to stick to my diet, I suffer physically. The same goes for life, with no discipline towards your goals, your success, mental health, and impact on the World suffers. Convenience of travel and the ability to not have to think about what I put in my body is the hardest part about being Celiac for me. But, with being so diligent about what I consume, I am able to be conscious of the nutritional value of the foods I eat, and thus live a healthier and better planned out life.
Celiac shouldn’t be the end of anything in your life, it should be an adjustment and a constant reminder that life isn’t fair, but it is what you make of it. Drawing the Celiac card isn’t ideal for anyone, regardless of that, it’s the reality for me, and many others out there. Live your life in a way where you’re constantly asking yourself “what can I do?” instead of claiming “I can’t do that”. Don’t let celiac hold you back, pursue your goals and work through any roadblocks that Celiac may present. There’s almost always more than one way to do something.
– Nick Pelletier, Ultra Endurance Athlete and Extreme Adventurer
The Cretney Family, 11 Members with Celiac Disease
In most respects we’re just like any other big, loving family. But there’s one important way that we’re different: eleven members of our family have been diagnosed with an incurable, chronic disease.
Celiac disease has been woven into the fabric of our family’s everyday lives for decades. After years of suffering so much that she finally thought she must be dying, our mom, Cathie Cretney, was diagnosed with celiac disease in 1980. She was the first one in our family to get the diagnosis, and she paved the way for the rest of us—her children and grandchildren.
“As a kid I was irritable, I couldn’t gain weight, I didn’t want to eat, and I had a terrible time concentrating in school—and the struggle continued into adulthood. After the birth of my third child, I truly thought I was going to die. I was just so sick with vomiting and diarrhea.”
When Mom’s family doctor couldn’t figure out what was wrong with her, he finally sent her to a gastroenterologist who diagnosed Mom with celiac disease and told her to eat a gluten-free diet—still the only known treatment for celiac disease. That’s when her life changed.
Mom went to the very first Canadian Celiac Association (CCA) conference in Waterloo in 1981, and eventually became the president of her local chapter in St. Catharine’s. Without the CCA, we don’t know where our family would be today. The CCA is a lifeline for our family and for thousands of families across Canada who live with the reality of celiac disease and gluten disorders.
Being diagnosed with celiac disease—being told that you have a chronic, lifelong condition—means changing your lifestyle, your habits, and your entire mindset as far as your relationship to food goes. It’s a constant battle, and it’s a lot to absorb. Food is our medicine. What and how we eat really is that critical.
In fact, the CCA exists to help us regain power over our disease, our bodies, and our lives. Thanks to the CCA Professional Advisory Council, the CCA is able to offer a singular, reliable source of information for Canadians living gluten free—and for their families and health care providers too.
-The Cretney Family
Lily, Age 4
“I still remember the fear and helplessness I felt when no one was able to figure out what was wrong with my daughter. Lily was just a year old. Healthy children that age are filled with boundless energy and light. But my sweet girl was simply fading away. We’d noticed a gradual decline in her mood, mobility and weight in the six weeks leading up to her first birthday. She was constipated, vomiting, wouldn’t walk, and heartbreakingly, wouldn’t smile. She wasn’t the same child at all. And no one knew what was wrong.
We’d taken her to our family doctor twice, and to the children’s hospital three times where she endured a battery of tests. As you can imagine, we were absolutely desperate to make our sweet little girl feel better—but nothing was working. Each time we were sent home with laxatives and a diagnosis of severe constipation. I told anyone that would listen that my own father is living with Celiac disease, and that I wondered if that’s what was causing Lily’s issues—and every time we were reassured that her symptoms were not consistent with Celiac disease. But they were wrong. On our fourth visit to the hospital we demanded the blood test for celiac disease. Lily’s numbers came back sky high.
Just two days after being put on a strict gluten-free diet and a multivitamin she will take for the rest of her life, we had our baby back—she was dancing, giggling and all smiles. A year later, she is now healthy and thriving. I have my sweet girl back. Please help me make sure that no one ever has to suffer the way that she did.”
– Lily’s mom, Jennifer.
Charlotte, Age 5
“Charlotte was 2 years old when she first started to complain about her belly hurting. It would happen randomly and often but we couldn’t figure out why. She seemed increasingly tired and moody. We brought her to our family doctor and she was referred to a pediatric GI specialist. She had blood work, x-rays and an ultrasound. Everyone seemed to agree it must be because she was constipated. But the treatments for constipation weren’t working and I knew something else was wrong. She was just too tired, it wasn’t normal for a little kid to be too tired to jump in a bouncy castle at a party.
Finally we went back to our GP and she sent Charlotte for blood work to check her iron again and this time to check her TTG levels. At last we had the information we needed her TTG levels were above 130 (normal 7 or under) — she was scheduled for a scope and within weeks, we had a confirmed diagnosis of Celiac Disease. She was then 4 years old. We were shocked by the diagnosis as, at the time, there was no family history of the condition.
Within a couple of weeks on a gluten free diet she stopped complaining about her belly and she had so much more energy. We were getting back to the old Charlotte! She has been such a trooper about the changes we’ve had to make. A lot of her favorite foods and snacks were now off limits but she will say often that ‘I’m glad we are gluten free because it doesn’t hurt anymore’. And though we have had a few tough moments when friends and classmates have had things she couldn’t share in, she’s now happy and healthy and funny and silly and everything else a 5 year old should be!”
– Charlotte’s Mom, Tina.
Sadie, Age 8
“Sadie was demonstrating pica behavior at age 2 & 3 – i.e. she was eating chalk and crayons at daycare. That led us to a diagnosis of iron deficiency, which also coincided with Sadie losing a patch of hair. The doctors assumed her iron deficiency was from “too much milk”, but we knew there was no way that was the case, so we requested a full battery of tests for other potential causes of iron deficiency. Luckily, the pediatrician thought to include Celiac bloodwork (it was the furthest thing from our minds, as we ate tons of pasta and bread and never saw her have digestive issues. And she seemed to be growing just fine). Once the positive celiac tests came back, a lot more made sense. i.e. She had been very slow to grow as a newborn infant. She had also experienced leg cramps on and off for over a year, which was also a result of the Celiac disease.
Nowadays, she finds she can’t always do everything she would like to be able to do. At birthday parties, we always bring our own pizza and cupcakes. It works for us, but when she sees a wonderfully decorated theme cake at the party, I’m sure she wishes she could have a piece of that. She often has to politely decline snack offers from others, which is sometimes crushing when she sees it’s a delicious-looking treat, or something that her friends are all enjoying. Occasionally, she will receive a gift that is not GF, and we don’t have the heart to tell the gift-giver that she can’t enjoy it. She’ll never eat from a family potluck – she has to bring her own little lunch box to most family gatherings.
When Sadie has had the rare exposure to gluten, she gets a migraine headache that causes lethargy and vomiting, and she’ll go to bed without dinner and sleep right through until the next day. It is heartbreaking for all of us when this happens to her. At school, she sits at the end of the lunchroom table, where she has fewer kids sitting around her, as she found when she was surrounded by friends, there were stray crumbs all around her.
Sadie often laments that the thing she hates most about Celiac Disease is that she can’t just eat something without having to check it first. She knows we are pretty adept at getting a gluten-free version of almost anything these days. But she has said she wishes she could “just eat” sometimes…. without having to worry.”
– Sadie’s mom, Mary.
Sophia, Age 14
My name is Sophia and I am a teenager living with Celiac Disease. To me, self-care and self-love are important for a healthy mind and body, especially since being diagnosed with celiac disease. My condition sometimes makes me feel isolated and school closures prompted by COVID-19 exacerbated those emotions. I was excited to have new experiences in my first year of high school. What followed was quite the opposite; I could not see my friends or even sing at school in my music theatre class. I felt tired and unmotivated. This made my cravings for gluten and sugary sweets worse. But self-care techniques helped me to cope. I began walking regularly with my sister for my physical well-being. The fresh air and intimate conversations helped to clear my head. I also created a 2021 vision board filled with my dreams and goals that gave me a positive mindset. Reading fiction relaxes both my mind and body. It takes me to a safe place where I don’t have to worry about what I can and cannot eat. Watching a TV show that makes me laugh takes my mind off worries and is also a wonderful way to de-stress. One of my teachers taught me that yoga and meditation are a way to liberate the mind and think of personal growth. When I do a five-minute meditation, I feel awareness and wholeness in my body. It is something I look forward to each morning. Stepping into this new part of my life with self-care techniques is comforting. I feel more in control of my thoughts and emotions. I enjoy spending time at home now taking care of my mental and physical health.
Tina, Age 43
How could I have Celiac Disease? I had no symptoms! I have no family history! It was a complete shock in 2020 when my then 4 year old was diagnosed with the condition after almost 2 years of complaining of abdominal symptoms. But when our family doctor ordered blood work for myself, husband and other daughter, I assumed all would be negative because none of us had any GI symptoms. I was devastated when I got the news that my blood work was abnormal and would need a scope for a final diagnosis. And just a couple of months later I was given the official diagnosis of Celiac Disease.
It didn’t hurt when I ate gluten so I didn’t want to stop eating all the foods I loved. It didn’t hurt to eat gluten so it just felt like a punishment to have to go gluten free. I was angry and sad. Around 4 or 5 months into the new diet I realized that the anxiety, depression and insomnia I had battled for around 3 decades were going or gone. I hadn’t known that psychological symptoms also accompanied Celiac Disease. And because I’d never complained about abdominal bloating, discomfort or diarrhea, the doctors had never tested me for Celiac.
I do feel better now, I’m sleeping better, I don’t have panic attacks. But I do struggle with the limitations of the disease. The social repercussions of not being able to eat what I used to, not being able to eat the birthday cake for a coworkers birthday or pizza and beer with a friend are hard for me. I miss the foods I loved and the convenience of being able to eat whatever was available. But if my now 5 year old can do it with such a positive attitude, I know I can do it.
Mark, Age 40
I grew up in an Italian-Canadian household where food and meals were at the center of daily life. I always ate well but as a young child my parents used to joked that my swollen belly made me look malnourished and they were stumped by my random crying and mood swings.
As life went on, I realized that something was amiss and over the years the situation worsened considerably. As a teenager, I was a competitive skier and I could never figure out why I would feel exhausted after carb loading before a race just like the dietitian recommended. And after the first time I tried drinking beer, I developed a horrifying boil on my face that no one could explain – imagine that as a teenager!
In my 20s and 30s I developed many other symptoms besides fatigue, from anxiety to achy joints to skin rashes and blemishes. I always looked mildly ill, was incredibly bloated, and lived with a constant malaise that my doctor was stumped by.
In my 40s I finally took my own steps, figured out that I have dietary issues, and was eventually confirmed as having celiac disease. I still remember how surprising it was to feel so good and energetic all the time. It felt like a heavy brain fog had lifted and I was reborn into a newer, healthier, faster me. I remember how shocked my friends and family were that I looked much younger than I did in the years before and today I still look young for my age.
Despite being in my 50s, I feel better physically and mentally today than I did at any time in my life before living gluten-free and I am grateful to be part of a community that understands the struggle and relief of the journey to living with celiac disease.
Chris, Age 42
Prior to my celiac diagnosis 3 years ago, the gluten-free lifestyle was already a large part of my life . My daughter Julie was diagnosed with celiac disease when she was 5 years old through a biopsy. In addition, my mother-in-law also has celiac disease. Because of the genetic connection to my wife’s side of the family, I ruled out myself as a genetic contributor. Because of this, I did not conduct the recommend 1st degree family screen for celiac disease when Julie was diagnosed. For 2 years before my diagnosis, I was battling occasional dizzy spells and brain fog, however never linked this to a possible celiac diagnosis. Despite my understanding of celiac disease and the possible neurological complications, I didn’t think this was the source of my problems. I continued with work and battled through my discomfort. My symptoms progressed to the point where I needed to see my family doctor to discuss investigations. Despite my lack of typical celiac symptoms, my wife suggested that I have a TTG screen to rule out a celiac diagnosis. To my surprise, on my birthday 3 years ago my wife looked at the blood test results. My TTG was high.
From here, we were put on a waitlist to see a gastroenterologist and received an endoscopy which resulted in a positive celiac diagnosis. My daughter gave me a great big hug and a high five when I came home and said, “welcome to the club dad”. She has been my teacher and my lead for all things gluten-free ever since. I am so lucky.
Since going gluten-free, my symptoms have improved tremendously. I no longer feel dizzy, and my brain fog has thankfully dissipated. In fact, I have experienced improvements for symptoms that I didn’t even realize were symptoms! The CCA has been such a valuable resource. I don’t know how we would have gotten through without their education and support. Thank you CCA for welcoming my family into your community. It wasn’t a ‘club’ I thought I would be a part of, but now that I’m here I couldn’t be more grateful.
Anna, Age 45
Carole, Age 54
I was diagnosed 8 years ago at age 46. My daughter was diagnosed at age 17 at the same time. When I look back I had low iron at age 20 and probably had more physical symptoms for 12 years before diagnosis. My daughter was a thinner child and always had dark circles under her eyes. I had bloating symptoms for at least a year before diagnosis.
Nancy, Age 90
Nancy’s journey began about 25 years ago when she got so sick for months that her daughter insisted she see her family doctor immediately as she had lost a lot of weight and went down to 90 lbs. At that Dr. visit, she was initially handed a prescription for Ensure to help put weight on. Her daughter was furious when the doctor didn’t try to diagnose the issue of sickness, diarrhea and weight loss so she and Nancy both went to the hospital and insisted that she be admitted for testing. Within hours it was diagnosed that she was celiac and highly sensitive.
“The emergency room doctor stated that she wouldn’t have lasted a few more days if she hadn’t been diagnosed.” – Daughter Kim
Fast forward 25 years and Nancy at age 90 agrees its time to move into a nursing care home. Nancy was happy to move in and begin the next stage of her life. During the first three years, Nancy never complained about the food or illness. Then one day while strolling outside in the garden, Nancy accidentally fell, and the fall fractured her pelvis. While Nancy was bedridden, she ate in her room for lunch and dinner daily. Her attendant often went down to get her meals. It was around this time that Nancy began to have severe diarrhea daily before bed and during the night. The caregiver had to keep buying diapers and change pads etc.
The family started looking at the menu more closely and found that the menu had changed and no longer listed gluten free/celiac options. On speaking to the Director, she advised a new chef was on board as the previous one was just covering while they hired a new one. Once Nancy was able to go down for her meals in a wheelchair (mid July) she had to ask at every meal what she could have and always got the salmon, vegetables, and applesauce for dessert.
“The whole food issue caused Nancy much stress as she accepts diarrhea as a daily thing now and is very embarrassed. The stress has caused her to have high blood pressure and is now on a low dose of blood pressure medication.” “Early November and for the past month, they seem to have made some adjustments, however; we still have no response from the Director on a follow up meeting request nor the head nurse reached out to us. After complaints, the gluten-free notations are finally back on the menu. The new chef is thankfully aware of celiac disease. The origin of the original gluten contamination was never investigated or found.” – Submitted by Kim and Chris – Daughters of Nancy