Empathy. Integrity. Adaptability.
CCA: Inclusion is a priority.
We’ve been purposely quiet on our main social channels since #BlackOutTuesday to make room for black voices to be heard.
It has been a time of reflection; a time to listen and to take stock of who we are and who we serve as an organization. As we come away from Celiac Disease Awareness Month, 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.
Recent 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
Let us count some of the ways we’ve made an impact in 2019
- One registered dietitian hired to help individuals seeking dietary assistance with their disease
- One beer regulation changed thanks to successful lobbying
- Two Canadian research projects worth $30,000 sponsored through the JA Campbell Research Fund
- Six new Better Living Gluten Free electronic newsletters delivered more education and news to more individuals
- Nine Professional Advisory Council members continued to develop scientifically- based guidelines and fact-based insights into today’s leading issues
- Ten educational webinars and Facebook Live sessions offered with experts on timely topics
- 16 experts presented at CCA’s State of Celiac Disease and Gluten Free in Canada Leadership Forum which brought together North American researchers, government, food manufacturers, community leaders and dietitians to tackle the issues still facing our community
- 17 local chapters continued to offer local programming and assistance
- 20+ “CCA Office Hours” sessions delivered through CCA’s Facebook Group offering online nutrition and diet-related advice by a registered dietitian
- 23 food establishments now certified by our partners, the Gluten Free Food Program, offering more reliable dining choices for people across Canada
- 1,000 Growing Up Celiac workbooks and four videos shared with families of newly-diagnosed children through hospitals and clinics across Canada
- 2,000+ calls made and e-mails sent to CCA’s Client Support Desk
- 2,700 individuals answered CCA’s May Contain Market Survey to be used for lobbying for better labelling regulations
- 3,000+ petition signatures delivered to the Ontario Legislative Assembly to protest the lack of OHIP-insured coverage for celiac blood screening
- 3,000 products carried the CCA seal through the Gluten-Free Certification Program one of the leading food safety programs in the world
- 12,000 individuals and counting joined CCA’s volunteer moderated Facebook Group seeking compassionate support
- 400,000+ pages viewed on the CCA’s now bilingual website helping people access fact-based information, news and tips.
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 11,000 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 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 2020