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State of Celiac Disease in Canada

Twenty-year follow-up-survey

Why the Survey?

Twenty years after the first internationally acclaimed celiac disease (CD) and gluten disorders quality of life survey in Canada, we wanted to know if life was improving.

While there’s increasing awareness of celiac disease and more gluten-free (GF) food choices, chronic challenges remain to be solved.

Spotlight

Mental Health and Celiac Disease

20 years after the first survey, results show how mental health is a challenge for our community. For the full story read the survey.

Brain Fog and Cognitive Impairment: Many individuals (57.4%) with untreated or undiagnosed celiac disease report experiencing “brain fog,” which includes difficulties with memory, concentration, and focus. Once a gluten-free diet is followed, these cognitive symptoms often improve, but they can persist for some.

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Thank you to Promise Gluten-Free for partnering with us on this survey.

Key Takeaways

FIND

Diagnosis still takes 10 years on average for over a third of respondents because:

  • The lack of clinical practice guidelines creates inconsistency in diagnosis and care, especially for those with lower incomes.
  • People present differently, increasingly with neurological and mental health symptoms.
  • Delays in biopsies to confirm CD.

TREAT

The gluten-free diet is expensive, and many can’t afford it.

The gluten-free diet is not enough – people still experience symptoms and complications.

People in hospital, assisted care or visiting food banks do not have regular access to safe food.

Unresolved precautionary labelling and unregulated food service menus confuse people and reduce options for safe food.

Safe food when traveling and eating out are major concerns.

CURE

Celiac Canada advocates these solutions:

Clinical Practice Guidelines to improve screening, diagnosis and management.

Improve affordability of the GF diet with a flat tax credit to replace the current tax regime.

Regulatory changes to improve access to safe food in institutional care and food service industry, especially to protect those who cannot self-advocate.

More funding for research to investigate the impact of CD & treatment options beyond the GF diet.

We’re on a mission.

State of Celiac Survey

Learn more about the rising challenges of living with Celiac Disease in Canada

Read full report

Thanks to Promise Gluten Free for sponsoring the State of Celiac Disease in Canada survey.

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