Every Canadian with celiac disease diagnosed and empowered.
Empathy. Integrity. Adaptability.
CCA: Inclusion is a priority.
We continue to take stock of who we are and who we serve as an organization. We know that celiac disease and gluten disorders do not discriminate. Celiac disease, in particular, is often inaccurately labelled as only a “white” disease. However, one percent of the world’s population is at risk for celiac disease and another 2-5% for gluten disorders. Yet as we look at our current community, it does not reflect this diverse reality.
We need to do better to serve our mission. As we reviewed our strategic plan last fall, we knew our shortfalls in terms of our outreach and even on our own board. In 2020, we started to take the steps to be more reflective and inclusive of the communities we serve and with whom we have yet to connect.
Over the past year, events call upon us all to do more than talk or post statements. This means reaching out to new communities and channels. It means supporting new research into examining non-traditional celiac communities including indigenous populations and addressing the barriers to diagnosis and treatment. It means advocating for the elimination of systemic barriers in healthcare. It means having more peer supporters with greater diversity and helping them self-advocate. It means taking this message beyond Canada and to international meetings.
It’s going to take time, and we have a lot to learn as an organization, but we are determined to do it. We hope you join us on our journey as we transform.
We stand in solidarity against any forms of racism and discrimination.
Janet Bolton, CCA President
Melissa Secord, National Executive Director
What steps have we started
- The CCA National Board received a report May 12, 2021 on ways to improve diversity on its board. The report was part of a Rotman OnBoard Masters program. The review was begun in September. The report contained concrete steps on how CCA’s nomination process and board culture can become more responsive to more Canadians. The report has also be presented and shared with our local Chapters.
- CCA will be launching and promoting new Punjabi and Arabic resources in June 2021 to help more Canadians become aware of their risk of celiac disease or gluten disorders and receive information in these languages to better support their families.
- The CCA’s Professional Advisory Council began developing a Indigenous Celiac Health Survey in the Fall of 2021. The plan is to activate the survey as soon as the stress on the healthcare system subsides.
From its beginning as the Canadian Celiac Sprue Association of Waterloo region, the CCA has had a major impact on improving the lives of people with celiac disease and gluten sensitivities in every possible way. As an organization, the CCA has been able to interact with individuals, medical professionals, medical researchers, food manufacturers and suppliers and various government agencies in ways that no single individual could attain.
Education & Research
From an initial notice in Chatelaine Magazine in 1973 announcing the formation of a support group to a Facebook Forum supporting more than 15,000 followers, the CCA has used print, radio, television, video, telephone, email and social media to provide information to and answer questions from Canadians about gluten-related conditions and the gluten-free diet.
With the assistance of an active Professional Advisory Council, the CCA has provided education and support to family doctors who need to “think celiac.” These efforts have ranged from a printed reminder to family doctors that celiac disease is not a disease that patients outgrow (1976) to guidance on the best way to monitor the health of people with celiac disease throughout their lifetime.
The CCA has supported nearly 40 researchers financially with J.A. Campbell Research grants expanding our understanding of the disease, diet and psychosocial challenges in dealing with celiac disease at all stages of life.
Three large patient surveys, the first in 1989, focused on the problems of diagnosis and the challenges of managing celiac disease in everyday life. Some issues have remained common across the years, especially the many factors leading to the under-diagnoses of celiac disease.
At the governmental level, the CCA has worked extensively with Health Canada, the Canadian Food Inspection Agency, and Agriculture and Agri-Food Canada to make sure government policy supports the safest possible food for people with a medical need for gluten-free food. While the biggest impact may have come in gluten product labelling, the CCA also supported the first efforts to create pure, uncontaminated oats with the assistance of oat expert Dr. Vern Burroughs (AAFC).
The CCA hosted the first cross-sector conference on producing gluten-free food in Canada, bringing together growers, food manufacturers, food vendors, regulators, and consumers to discuss the problems and potential solutions in making safe gluten-free food. This process has been repeated twice reflecting the overall growth of gluten-free food in Canada.
The CCA continues its food safety work with funding from AAFC and research assistance from the Allergen Control Group and the Canadian Grains Council. Current projects goals are to determine the actual level of contamination of non-gluten cereals, pulses, and seeds, to find ways to reduce that contamination and to complete the first comprehensive reference on sampling protocol and testing methodology for gluten in ingredients.
The CCA began the first gluten-free certification program in Canada in 1990. In 2009, however, it recognized that a food safety standard was essential to meeting goals. Through initial work with QMI and then with the Allergen Control Group, a robust safety standard has been produced and recognized by international standards associations. Since 2012, more than 200 manufacturers on 6 continents have produced more than 3000 products carrying the GFCP symbol signifying that they were produced in a certified facility with new products joining the program weekly.
With the assistance of the GF-Verified program of the Gluten-Free Food Program, the CCA has begun to educate food service staff on the challenges of producing gluten-free food. The first restaurants, bakeries and student cafeterias to qualify for the designation enrolled in 2017.
Updated June 2021