I strongly recommend reading this recently published report--on a survey of Canadians with celiac disease (via PDF)--that appeared in the April 2007 issue of Digestive Diseases and Sciences. Surveyed were members of the Canadian Celiac Association who responded to a questionnaire reviewed by Dr. Peter Green, among others.
The report offers a detailed overview of people with celiac disease in north North America and concludes with remarks that seem applicable to people with celiac disease everywhere:
The results of this study emphasize the need for early diagnosis, treatment and follow-up of celiac disease. Despite the availability of excellent antibody screening tests, delays in diagnosis of celiac disease remain a key issue. This needs to be addressed given the current prevalence estimates of 1 in 133 having celiac disease in North America. Better awareness among family physicians, dietitians and other health professionals about the variety of clinical presentations, especially anemia, osteoporosis, reproductive problems and autoimmune disorders is essential. Utilization of antibody testing for screening at-risk groups, especially first-degree relatives, would be potential strategies to reduce delays in diagnosis.Also highly recommended: Rosie Schwartz's "Gluten Be Gone!"--a related article from Canada's National Post (June 5, 2007).
Having to follow a strict gluten-free diet for life has a major impact on the quality of life of individuals with celiac disease. Given the difficulty in determining the gluten-free nature of foods, there is a need for food manufacturers to ensure complete and accurate labeling of gluten sources and for food service establishments to provide accurate information on the gluten content of food served. Comprehensive education of newly diagnosed patients, by dietitians and physicians with expertise with expertise in celiac disease, will help optimize compliance, improve quality of life and reduce the risk the numerous complications associated with this common disease. [sic]
Thanks to dietitian Shelley Case for spreading the word about the article and this thorough survey, on which she played a leading role.