CCA's research initiative aims to identify progress, challenges in the lives of people with celiac disease

Twenty years after the first baseline survey of Canadians living with celiac disease was conducted, the Canadian Celiac Association (CCA) is mounting a major research initiative to identify progress made and continuing challenges surrounding life with the condition.

Has life gotten any easier for the almost 400,000 Canadians living with celiac disease? Twenty years ago, it took on average 11.7 years to get diagnosed. Are we closing the gap? Do patients have the information and tools they need to manage their condition? Are there new challenges which have emerged over the last two decades – and if so, what can we be doing to try and help? These are the questions we’re looking to answer, with the goal of ensuring that everyone who may have celiac disease is diagnosed and empowered,”

Melissa Secord, National Executive Director, CCA

Celiac disease is a genetic autoimmune condition, affecting one percent of the population, where your body sees gluten as an invader, causing your immune system to fight back to destroy the gluten protein found in foods containing wheat, barley or rye. Over time, this immune reaction damages the lining of the small intestine, preventing nutrients from being properly absorbed into your body. This can lead to a wide variety of complications and symptoms, and even serious long-term illness such as neurological conditions and cancer.

“The State of Celiac Disease in Canada” survey is open to anyone with celiac disease or gluten disorder and can be accessed through the CCA website at: www.celiac.ca. The online survey is comprised of 75 questions, spanning a wide range of aspects of life with celiac disease, including:

• Challenges to timely diagnosis
• Availability of and access to gluten-free foods – including cost-related issues
• Obstacles to maintaining a gluten-free diet
• Social/emotional impacts of living with celiac disease
• How the COVID-19 pandemic affected people living with celiac disease
• Navigating the health care system with celiac disease
• Eating in restaurants on a gluten-free diet

While awareness of celiac disease and the availability of gluten-free food options have increased over a generation, there remain many ongoing challenges – and a host of new ones, especially with respect to the cost of essential foods. We want to get a clear, up to date picture of how and where we can better help Canadians living with celiac disease,”

Dr. Don Duerksen, Researcher, University of Manitoba and Chair of the CCA’s Professional Advisory Council.

The CCA hopes to have 7,000 people take part in the survey. The data, which will be released next year, will help inform initiatives and support programs going forward in conjunction with the medical community on barriers to diagnosis, accessing safe gluten-free food with food and ingredient manufacturers, in addition to government and other stakeholders.