Mississauga, ON April 24, 2007 – Imagine having a dangerous disease and having to go through more than a decade of testing before doctors even diagnose it. This is the cold reality for thousands of individuals with celiac diseasein Canada, according to a study published in the April edition of the medical journal Digestive Diseases and Sciences.

Despite advances in medical practice, long delays in diagnosis of celiac disease remain. This is a key finding of the Canadian Celiac Health Survey. “This survey, prepared by the Professional Advisory Board of the Canadian Celiac Association and conducted on the members of the Association, is the largest celiac health survey of its kind ever conducted in the world,” noted Dr. Ann Cranney, the study’s lead author.

“On average it takes nearly 12 years from the appearance of symptoms to confirmation of diagnosis," added Dr. Connie Switzer, Chair of the Professional Advisory Board and co-author of the study.

“Many respondents reported frustration with the number of doctors consulted before their diagnosis and inaccuracies in their diagnosis. Prolonged complaints of tiredness and anemia were common,” said co-author Dr. Decker Butzner, who went on to add “Delayed diagnoses place an unnecessary burden and cost on the healthcare system.”

“Better awareness among family physicians 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”, said co-author Dr. Mohsin Rashid.
Once the disease is diagnosed, patients have to follow a strict gluten-free diet for life, which is not as easy as it may sound. Gluten is the protein found in the grains wheat, rye and barley. 
“Although individuals with celiac disease may think their diet is gluten-free, they may not be aware of the ‘hidden’ sources of gluten in their diet,” stated dietitian Shelley Case, another study co-author and author of Gluten-Free Diet: A Comprehensive Resource Guide. “Newly diagnosed patients should be referred to a dietitian with expertise in celiac disease for education and follow-up.” The Canadian government could go a long way in helping by mandating more extensive labelling on all food products.

“There is a real need for the government to legislate comprehensive labelling of gluten sources, and for food service establishments to provide accurate information about their menus,” noted co-author Marion Zarkadas, a dietitian and former policy officer with the Canadian Food Inspection Agency. Celiac disease is considered to be one of the most under diagnosed and misdiagnosed diseases. Once thought to be rare, it is now estimated that celiac disease affects up to one per cent of people in Canada, or 325,000 Canadians, and more than 90% are still undiagnosed.

A wide range of symptoms including anemia, irritability, fatigue, chronic diarrhea and/or constipation, cramps, bloating, recurrent canker sores and depression, make the disease difficult to diagnose. Celiac disease is linked with many other diseases including type 1 diabetes, thyroid disease, osteoporosis and certain types of cancer. 
The Canadian Celiac Association is a national organization dedicated to providing services and support to persons with celiac disease and dermatitis herpetiformis through programs of Awareness, Advocacy, Education, and Research.
Contact: Jim McCarthy, Executive Director 1-800-363-7296 ed@celiac.ca