Undiagnosed Celiac Disease in Canada

Government, healthcare professionals and public health organizations must work together to ensure people get diagnosed in as quickly as possible.

The Situation

Celiac disease, an autoimmune disorder triggered by the ingestion of gluten, affects a significant number of people in Canada. Shockingly, studies indicate that approximately 85% of individuals with celiac disease in Canada remain undiagnosed, posing a major public health concern.

The reasons behind the high rate of undiagnosed cases can be attributed to various factors. Firstly, celiac disease presents a wide range of symptoms that can be easily mistaken for other digestive disorders or overlooked altogether. Symptoms such as abdominal pain, bloating, fatigue, and unexplained weight loss are often attributed to less severe conditions, leading to a delayed or missed diagnosis.

Moreover, lack of awareness and understanding among both the general public and healthcare professionals contributes to the underdiagnosis of celiac disease. Many individuals and even some medical practitioners are unaware of the prevalence and diverse manifestations of the condition, resulting in missed opportunities for early detection and intervention.

Additionally, the symptoms of celiac disease can vary widely in their severity and presentation. Some individuals may have silent or atypical symptoms, further complicating the diagnostic process. Furthermore, the perception that celiac disease primarily affects children and predominantly manifests as gastrointestinal symptoms leads to an underestimation of its prevalence among adults and the existence of non-gastrointestinal symptoms.

Addressing the issue of undiagnosed celiac disease requires concerted efforts from healthcare professionals, public health organizations, and the general population. Raising awareness about the disease, its symptoms, and the importance of timely diagnosis is crucial. Furthermore, healthcare providers should be encouraged to include celiac disease in their differential diagnosis when evaluating patients with compatible symptoms, regardless of age.

By improving education, enhancing diagnostic tools, and promoting early detection, it is possible to reduce the proportion of undiagnosed cases and ensure that individuals with celiac disease in Canada receive the necessary medical support and dietary guidance for improved quality of life.

Our position

Celiac Canada believes that all people living in Canada with celiac disease deserve a timely diagnosis. We call on all governments to work together and invest in our healthcare to ensure that people get diagnosed as quickly as possible.

Our recommendations on making celiac disease diagnosis a priority

Celiac Canada is leading the conversation on how we can shorten the timeline to diagnosis. Since June 2023, we have been working with Sonia Dishu, MP, to establish an all-party Celiac Caucus. The caucus will focus on deepening awareness and understanding of the challenges of celiac disease and advancing solutions to that help Canadians live and thrive with celiac disease.

“For Canadians with celiac disease, the only treatment available is a strict gluten-free diet.  This comes with considerable financial, health and social costs. We hope that through the All-Party Celiac Caucus, we can develop and advance policy solutions that help to enhance the quality of life for all Canadians with celiac disease,” said Melissa Secord, Executive Director, Celiac Canada.

The inaugural Celiac Caucus meeting was held on June 19. The caucus will focus on deepening awareness and understanding of the challenges of celiac disease and advancing solutions to that help Canadians live and thrive with celiac disease.

“Celiac disease is a serious autoimmune disorder that needs greater attention in Canada. I am proud to co-chair this new caucus and work together with my Parliamentary colleagues to increase awareness, promote research and improve the live of those affected,” said Sonia Sidhu, MP and co-chair of the All-Party Celiac Caucus.

At the meeting, MPs engaged Celiac Canada leadership and with two Canadians living with celiac disease – Christine Nesbitt, former Olympian and multiple World Champion Long Track Speed Skater, and Jennifer Palma, Global BC TV anchor. Celiac Canada also facilitated a presentation from Dr. Maria Pinto Sanchez, member of Celiac Canada’s Professional Advisory Council Gastroenterologist and Clinician Nutrition Specialist at McMaster University and Hamilton Health Sciences. Celiac Canada will continue to engage with caucus leaders MPs Sonia Sidhu, Tim Louis, Ziad Aboultaif and Senator Marie-Françoise Mégie as well as the all-party caucus members to address celiac disease awareness, diagnosis, research, and treatment support.

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