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The Cretney Family, 11 Members
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. Catharines. 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.
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.
Anna, Age 45
I grew up hiding my skin disorder in front of my friends by wearing long pants and long sleeves shirts.
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