There is so much more to living ‘gluten free’ than simply avoiding bread, pasta and beer! Because celiac disease is a patient-managed disease, experts at the International Celiac Disease Symposium 2015 (ICDS) held in Prague in June highly recommend lifelong membership in a support group.
Not only do experts suggest that the greatest obstacle to celiac diagnosis is one’s own physician (3% diagnosis rate), studies show that physicians vastly overestimate the quality of life compared to the difficulties that celiac patients report.
Patient support groups offer the most practical advice about what is gluten free and what is not, where to find the products that are, lifestyle issues and coping mechanisms for the stresses of living gluten free. Patient support groups are also pivotal in lobbying government regulators and food manufacturers in regard to demanding safe food and full ingredient disclosure.
Patient support groups around the world are encountering a common challenge: online information that is invalid if not pure nonsense that promotes a self-interested industry of ‘treatments’ for the gluten free. Not only do the 97% of (undiagnosed) celiacs forego a proper diagnosis, they undertake to prescribe their own medicine, with pseudo-physicians and purveyors of health food cures offering advice that serve selfish interests. Because this cohort does not self identify as celiac, they forego the support that would inform them how to completely eradicate gluten from their diet. Those who do join a support group typically stay only for a year or two, effectively failing to keep abreast of fast-changing research and innovations.
The Netherlands Dr. Bianca Rootsaert, managing director of the Coeliac Society of the Netherlands, spoke about the importance of patient organizations. The Nederlandse Coeliakie Vereniging (NCV) conducted a survey in 2010 and discovered that NCV was the third-most consulted information source on celiac disease, after specialists and general practitioners. By 2014, NCV ranked second in google searches for celiac disease, after specialists and before dietitians. NCV offers a training program that provides guidance to restaurants endeavoring to provide gluten-free meals.
United Kingdom Coeliac UK found that key barriers for celiac patients include nutritional adequacy, identifying safe products, food cost, food availability, and strict adherence to the diet. Studies determined that certain socioeconomic groups are less likely to be able to easily comply with the gluten-free diet. Coeliac UK identified eight items as “staple” gluten-free products and launched an impressive campaign to have ALL food stores carry these foods.
That said, the availability of gluten-free foods today has grown exponentially in the last 5 years, however costs continues to preclude consumers from embracing growing availability. Breads and flours are 3-4 times more expensive than gluten-containing products despite growing competition. The disparity is likely to persist, given manufacturer costs. Securing pure supplies and establishing strict measures to avoid cross-contamination incurs unavoidable cost. Governments in Europe are providing financial support for people with celiac disease with budgets under significant pressure across the developing world.
Availability of gluten-free food is very high in Europe, Oceania and North America, but much less so in Asia, Africa and South America. Further, despite significant incidence of celiac disease in North Africa, finding gluten-free substitute foods can be very difficult. According to Coeliac UK, gluten-free certification imbues consumer confidence.
Canadian Celiac Association (CCA) Board Member Mark Johnson and Operations Manager Sue Newell represented the CCA at the International Celiac Disease Symposium (ICDS) held in Prague in June 2015. This report represents their learnings on the value of a lifelong membership in a support group. Learn more about the work of the Canadian Celiac Association at www.celiac.ca.
If you live in Victoria, Vancouver Islands or the Gulf Islands visit Classes for Gluten-Free Living.