It was just a little piece of Dutch licorice. Ellen Bayens popped it in her mouth without a second thought as she wandered through the science fair at her son’s high school. It was a brand she thought was safe, but it wasn’t.
Within the hour, she feared she would become a science experiment rather than spectator, a 48-year-old human balloon floating up along the ceiling, painfully bloated and powered by bursts of gas.
“How could I have done this? How could I not know the licorice contained gluten?” Bayens angrily asked herself. She’d been vigilant since doctors told her the year before that she had celiac disease.
After being miserable for a quarter century, after suffering with gas, bloating and depression, she had found a new life when she was diagnosed with the disease and cut gluten, a protein in wheat, barley, rye and some oat products, from her diet.
And she was vigilant – until this time. She knew she had no more than 20 minutes before her circumference grew by at least six inches, and that driving home would be dangerous because she could not sit upright and the seatbelt, even pulled out to its maximum length, would cut sharply into her distended belly.
Bayens had been “glutened”, a term people with celiac disease use to describe the accidental consumption of the forbidden protein, when they are suddenly and painfully reminded of the symptoms that led to cutting it out in the first place.
Like multiple sclerosis and type 1 diabetes, celiac disease is classified as an “autoimmune” condition because the body’s immune system turns on itself, causing inflammation in the small intestine whenever it detects gluten, and leading to damage to the villi, finger-like projections that are essential for absorbing nutrients.
But unlike other autoimmune diseases, the symptoms for celiac disease are myriad and confusing – anything from diarrhea, nausea, abdominal pain and bloating to depression, fatigue, easy bruising, infertility and osteoporosis. Physicians can easily mistake the symptoms for other conditions.
In fact, it takes an average of 12 years for a celiac diagnosis, according to the preliminary findings from a major national survey, conducted by the Canadian Celiac Association in tandem with Health Canada, on what life is like on a gluten-free diet. For most people, the last thing they want to do is experience their symptoms again.
But that’s easier said than done: when you have celiac disease, every morsel of food that goes into your mouth must be scrutinized, travel and dining out carry risks, social situations can be awkward and an understanding and accommodating support system is essential for success.
Next Page: A Surprising Number Will ‘Cheat’
A Surprising Number Will ‘Cheat’
Dahlia James was diagnosed at age 3, and grew up with celiac disease. But even she often said, “Yes, please” – because that was easier than explaining “why not”. Back then, the Vancouver native preferred to brace herself for the shooting abdominal pains that she would get from the instant Japanese noodle soup or sandwich offered by adults who didn’t know any better.
“When I was around 13, I didn’t understand the severity of the disease,” she says. “I also don’t think anyone knew about gluten-free food. It wasn’t on their radar, and I wasn’t going to put it there.”
Surprisingly, many others feel the same when it comes to the dietary restriction. In fact, only 68 per cent of respondents to the CCA’s survey said they would “never” intentionally eat gluten, while 32 per cent admitted they intentionally eat foods that contain gluten at least once a year.
Marion Zarkadas, one of the lead researchers of the study of more than 5,700 people between the ages of 18 and 93, says she is concerned by findings that show some people continue to suffer symptoms from celiac disease, including joint pain, even after they have eliminated gluten from their diet.
Zarkadas, a registered dietitian and member of the CCA’s professional advisory board, says one of the explanations could be that patients tend to be offered very little support from their doctor after they’ve been diagnosed.
“Maybe the symptoms are due to other conditions they have, or maybe they are unknowingly consuming gluten in something they think is safe,” she speculates. “With celiac disease, after diagnosis, you’re on your own. You’re responsible.”
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Getting Serious About Managing
It was that sense of personal responsibility that led Bayens, now 53, to create The Celiac Scene , a website directory of gluten-free restaurants across Canada, from fast food to fine dining, complete with maps and reviews.
“After diagnosis, it becomes a social problem,” she explains. “Business people can’t sit in meetings and eat what others are having and dating is hard.”
It’s essential to know what’s in your meal when eating out with celiac disease, but it can be tough to get used to overcoming one’s natural reserve and speaking up. “The last thing you want to do is quiz your waiter because you have a digestive disease,” notes Bayens.
For Dahlia James, who is now 19 years old and a University of Toronto student, growing up has meant taking control and being more responsible over what she puts in her mouth.
“I wouldn’t eat gluten now, at least not knowingly,” she says. Living gluten-free in residence last year meant eating lots of salad with oil and vinegar. This year she is sharing an apartment with friends and is counting on their support to regain a much more diversified diet. “I get to shop at Whole Foods and I get to cook. Hurrah!” she exclaims.
Support from family and friends is another essential ingredient for living a happy gluten-free life but at times even those close to you have trouble understanding. After she was diagnosed, Bayens kept things such as a separate toaster and butter dish in the kitchen and urged her family to thoroughly clean all utensils before putting them away.
One day, she saw her husband slice a bagel with a bread knife, then put it back in the drawer.
“What are you doing?” she asked, horrified. “But it looks clean,” he replied.
While there’s a learning curve for others, sometimes even strangers will surprise you. Bayens was touched when the woman who was baking for her Bible study class went out of her way to find a gluten-free recipe and bake cookies specifically for Bayens.
She finds, though, that the best support of all comes from people who share your disease. “Members of support groups are like extended family,” she says.
“Listen,” she concludes, “celiac disease changed my life. The diagnosis has taken me on a journey of self-empowerment. It is cleansing.”