Quebec organizes celiac disease forum to find solutions for those living with it

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

That is why Celiac Quebec (Cœliaque Québec) is co-organizing a first citizens’ forum that will bring together patients, various health professionals, university program managers and 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 the “chameleon disease,” says Edith Lalanne, executive director of Cœliaque Québec, since it can manifest itself in 200 different symptoms.

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

“It’s an autoimmune disease, so there is a defect in the immune system and when the person ingests gluten […] the system goes to war and instead of just attacking the gluten, it will attack the intestine, for example,” said Lalanne.

It is this “autoimmune” criterion that distinguishes the disease from gluten intolerance, where people can still have 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 of the disease for which Lalanne hopes that solutions will emerge from the forum.

“Since there is no pharmacological treatment, the remedy is to change your diet to avoid all sources of gluten. Some people will tend to exclude themselves for fear of contaminating themselves and being sick in public,” said Lalanne. “In other cases, those around you will exclude the person by inviting them to less gatherings or by not taking their illness seriously.”

Long diagnostic times

The 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 noted that 10 years ago, diagnostics took around 12 years. Nowadays, it can take two or three years, but it is not uncommon to wait six years. The director hopes that the future action plan will look at ideas to reduce 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 disease.

In addition to the regulations, a certain dietary trend towards gluten-free has helped diversify the offering on the shelves.

“Gluten-free has been fashionable for several years, so it has brought the spotlight to this diet and has led to an explosion of products, which is perfect for people with celiac disease,” said Lalanne. “The trend is continuing, so we are very happy about that.”

However, these foods are more expensive than their gluten-containing counterparts.

“For the tax measure that currently exists, the amounts that people receive are derisory,” added Lalanne.

“For an adult, the provincial and federal governments offer a tax credit in the medical expenses section of the income tax return. The person must keep all their grocery bills, identify 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 out 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 explained.

According to Lalanne, access needs must be improved, particularly for low-income people. This is the only treatment for the disease.

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–This report by La Presse Canadienne was translated by CityNews