When Marcia Bruce and her husband were diagnosed with celiac disease within months of one another, the couple faced a cascade of lifestyle changes.
The disease triggers an immune response in the small intestine after eating gluten, a protein found in wheat. The only treatment is a strict, lifelong gluten-free diet, with cross-contamination of food presenting a serious risk. For Bruce, that led to stresses around buying and preparing new foods, and navigating social situations centred around meals.
“It’s a pretty big learning curve,” said Bruce, the Calgary chapter president of the Canadian Celiac Association.
“The hardest part for me in terms of the diagnosis was trying to convince my family and friends that it was a real disease and that we couldn’t have a little bit of gluten once in a while, and how important it was that our food is safe, because a very little amount of gluten can really make you sick.”
It’s estimated about one per cent of the population has celiac disease, but a large swath of those people haven’t been diagnosed, according to Dr. Dominica Gidrewicz. The disease has a hereditary component, meaning many diagnoses come from screenings after the disease is identified in family members.
“We know there’s one per cent of the population that has celiac, but far fewer are diagnosed,” said Gidrewicz, a Calgary pediatrician who specializes in celiac disease. “There are a lot of people who have very mild symptoms that they might live with.”
Gidrewicz said a lot of education comes into play when patients learn they have celiac disease, with adjustments necessary in the grocery store and the kitchen to ensure an alternative diet can meet nutritional needs.
The local chapter of the Canadian Celiac Association aims to build community and provide resources for people with the disease. Outside of the COVID-19 pandemic, the group hosts in-person events, including a gluten-free Oktoberfest with a buffet filled with celiac-safe eats. Bruce said she hopes gatherings like these help people with the disease know they’re not alone.
“It’s such an amazing feeling to be in a room full of people who had the same struggle as we did, and to just be able to eat off the buffet — because once you’re celiac, buffets are pretty much a thing of the past,” Bruce said.
Those events also extend to children, who are especially prone to feeling socially isolated due to celiac disease, Gidrewicz said. The holidays also can be difficult to navigate due to the risk inherent in large-family potlucks.
“A lot of people with celiac really worry about that time. It can be quite stressful, sharing food and having family dinners,” Gidrewicz said. “Some patients bring their own food and that way they don’t worry about having any cross-contamination. Other times we might suggest they be the first one to eat, before everything is cross-contaminated.”
Restaurants are another challenge, one that Bruce said many people with celiac disease avoid entirely. A handful of gluten-free restaurants in Calgary cater to those who must follow the diet, but eating elsewhere carries risk of getting sick. Gidrewicz encouraged celiac patients to advocate for themselves when eating out, ensuring staff are aware of the seriousness of their dietary restriction.
Bruce said she hopes more Albertans can learn what it means to live with celiac disease.
“A gluten-free diet is our prescription for our chronic illness. You need to take it as seriously as you take medication. If you’re diabetic, it’s your insulin,” she said.
“The more people can understand that, the easier it makes it for people with celiac disease, because we don’t feel as much like a burden. We’re not doing this because we’re trying to be special or different or difficult. We’re doing it because it’s our prescription.”