First-ever Quebec celiac disease forum aims to help those living with the disease

Celiac sufferers often excluded socially Nutritionist Maude Perreault said many celiac disease patients feel themselves excluded from social situations.

Around 85,000 people live with celiac disease in Quebec, and although the gluten-free fad of recent years has improved their quality of life, many issues remain.

That's why Celiac Quebec (Cœliaque Québec) is co-organizing a first citizens' forum that will bring together patients, various health-care professionals, university program leaders as well as people from the food industry.

The forum, which will take place on Saturday at the MIL campus of the Université de Montréal, aims to draw up an action plan to improve the quality of life of people affected by celiac disease.

The organizers also hope that the event will contribute to training for future nutritionists and doctors to equip them to better support celiac patients.

Celiac disease is sometimes called “chameleon disease,” says Celiac Quebec executive director Edith Lalanne, since it can manifest itself in 200 different symptoms.

A good proportion of people will have digestive symptoms (diarrhea, stomach ache, weight loss, etc.). A significant proportion of patients will have non-traditional symptoms, including anaemia, osteoporosis, fertility problems (especially in women) and brain fog.

“It's an autoimmune disease, so there's a defect in the immune system and when the person ingests gluten... The system goes to war and instead of attacking just the gluten, it attacks the intestine, for example,” said Lalanne.

It is this “autoimmune” criterion that distinguishes the disease from gluten intolerance, where people can still experience uncomfortable digestive symptoms.

People living with celiac disease are also prone to self-exclusion from social life, and sometimes this rejection comes from those around them. This is a blind spot in the disease for which Lalanne hopes that avenues of solution will emerge from the forum.

“As there is no pharmacological treatment, the remedy is to change one's diet so as to avoid all sources of gluten. Some people tend to exclude themselves for fear of contamination and of being ill in public,” said Lalanne. “In other cases, the people around them will exclude the person by inviting them less to gatherings or by not taking their illness seriously.”

Long delays in diagnosis

Delays in diagnosing the disease are one of the main difficulties, according to Celiac Quebec executive director.

“As soon as the person has symptoms, there is a kind of medical wandering, the disease is sometimes confused,” she said.

Lalanne pointed out that 10 years ago, diagnosis took around 12 years. Nowadays, it can take two or three years, but six years is not uncommon. The director hopes that the future action plan will look at ideas for reducing these delays.

Since 2012, Health Canada regulations have required manufacturers to declare gluten sources on the labels of the majority of pre-packaged foods sold in the country, which has changed the lives of people with celiac.

In addition to the regulations, a certain food trend towards non-gluten has helped to diversify the offer on the shelves.

“Non-gluten has been fashionable for several years, so it's brought a spotlight on this diet and it's resulted in an explosion of products, which is perfect for people with celiac disease,” said Lalanne. “The trend is continuing so we're very happy about that.”

However, these foods are more expensive than their gluten-free equivalents.

“For the tax measure that currently exists, it's derisory the amounts people receive,” Lalanne said.

“For an adult, the provincial and federal governments offer a tax credit in the medical expenses section of the tax return. You have to keep all your grocery bills, identify the gluten-free products and find the price of a comparable item with gluten, then calculate the weighted difference. It's very complicated and it takes good financial literacy to be able to fill in this tax return at the end of the year. That's why not many people do it. We know that about one in four people do it,” she said.

According to Lalanne, access needs to be improved, particularly for people on low incomes. Remember that this is the only treatment for the disease.

This report by The Canadian Press was first published in French on Nov. 15, 2024.

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