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 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 almost 8500 members, 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 more than 30 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 underdiagnoses 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.
Sue Newell – Manager, Education and Special Projects