Majority of Torontonians with celiac disease don't know they have it, study shows
If you’ve got constant fatigue, sore muscles or unexplained gastrointestinal problems, there’s a chance you’re part of the 1 per cent of Torontonians with celiac disease — and new research shows you probably don’t know it.
Researchers at the University of Toronto found that 87 per cent of people living with celiac disease in Toronto aren’t aware they have it.
Ahmed El-Sohemy, a professor of nutritional science at the University of Toronto and senior author of the paper, said researchers compared blood tests of about 3,000 Canadians with their responses to a health questionnaire.
“We found that among those that tested positive for the blood test, 90 per cent of them indicated ‘no’ to having been diagnosed with (celiac disease),” El-Sohemy said.
Celiac disease is an autoimmune disorder triggered by eating gluten. There are essentially two types of the disease: a severe, early-onset form that is often identified in childhood by a pediatric gastroenterologist, and a less severe type that often isn’t diagnosed until adulthood.
With the latter, people “just never really felt right,” El-Sohemy said. They might experience fatigue or gastrointestinal problems, or mistake symptoms for inflammatory bowel syndrome or other autoimmune disorders.
“The symptoms are not as clear-cut as other types of disorders, where it’s perhaps more localized just to the digestive system,” El-Sohemy said.
Celiac disease causes damage to the small intestines, leading to malabsorption of nutrients and vitamin deficiencies.
That can manifest in ways seemingly unrelated to celiac disease — bleeding gums, brittle bones or weak muscles.
Celiac disease is the best-understood type of gluten intolerance, El-Sohemy said.
“This concept of non-celiac gluten sensitivity is still not very clear,” he said. “There have been a number of studies but the findings have been inconclusive, as to whether it actually exists.”
El-Sohemy suspects that the vast majority of people eating gluten-free by choice don’t actually have celiac disease.
Andrey Malkov of Hibiscus Cafe, a vegetarian and gluten-free restaurant in Kensington Market, said the majority of his customers are trying out or prefer eating gluten free.
“It’s a preference to try eating without gluten,” Malkov said. “And we do have quite a number of people coming in who do have celiac disease. I would say the majority would be people who prefer the lifestyle.”
El-Sohemy said the reason many people without celiac disease opt to eat gluten-free — including a number of prominent athletes — is that it cuts or reduces carb intake.
“They’re no longer eating heaping plates of pasta, and lots of refined white bread,” El-Sohemy said. “So they’re losing weight, they’re not getting that glucose crash after a big pasta meal, and they feel more energized and great.”
Still, El-Sohemy said it’s important to know whether the benefits of eating gluten free are because of intolerance or simply a better diet.
“There are a lot of gluten-containing whole grains that are very nutritious, have a lot of central minerals and fiber and they’re good sources of a variety of nutrients,” he said, adding they should still be consumed in moderation.
“And also, you don’t throw the baby out with the bathwater. You don’t just cut out all sources of gluten when it’s only the carbohydrates that may have been the culprit.”