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Lessons from the Canadian celiac health survey


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Celiac disease (gluten sensitive enteropathy) is a permanent intolerance to gluten, which causes damage to the small intestinal mucosa by an autoimmune mechanism in genetically susceptible individuals.

By Dr. Mohsin Rashid

Celiac disease (gluten sensitive enteropathy) is a permanent intolerance to gluten, which causes damage to the small intestinal mucosa by an autoimmune mechanism in genetically susceptible individuals. Removal of gluten (a protein present in wheat, rye and barley) from diet leads to resolution of symptoms and restoration of the mucosa to normal.

Celiac disease is a common gastrointestinal disorder. Recent prevalence studies indicate that 1 in ever 100-150 individuals in North America may be suffering from this disorder. An estimated 300,000 Canadians may have celiac disease, the vast majority still undiagnosed. Untreated, the individuals are at risk of nutritional deficiencies, intestinal lymphoma and possibly development of other autoimmune disorders.

Celiac disease is a “clinical chameleon”. Typical symptoms of celiac disease include abdominal pain, diarrhea and weight loss. However, many individuals present with atypical symptoms including anemia, fatigue, constipation, mouth ulcers, short stature, osteoporosis, menstrual irregularities and infertility. Additional symptoms in children include delayed growth and puberty, vomiting, irritability and dental enamel defects. Celiac disease is a hereditary disorder. Both first and second-degree relatives are at risk of developing celiac disease. Other high-risk groups include individuals with other autoimmune disorders (especially type I diabetes and thyroiditis) and Down Syndrome.

Serological screening with IgA tissue-transglutaminase (tTG) antibody is recommended in individuals suspected of having celiac disease. However, the definitive test for celiac disease is a small intestinal biopsy. The treatment of celiac disease is a strict gluten-free diet for life. The gluten-free diet should NOT be started before a biopsy is done, as it will affect the interpretation of the biopsy and make confirmation of the diagnosis difficult.

Awareness of celiac disease amongst the health professionals is poor and delays in diagnosis are common. This finding is further confirmed by the results of the Canadian Celiac Health Survey published earlier this year (See Reference list). In 2002, the Canadian Celiac Association (CCA) conducted this large national survey of its membership to characterize the diagnostic process, frequency of associated disorders, family history, and impact of a gluten-free diet in individuals with celiac disease.

The respondents included 2,681 adults with biopsy-proven celiac disease. Most common presenting symptoms included abdominal pain (83%), diarrhea (76%), and weight loss (69%). The most striking finding of the survey was the mean delay in diagnosis of 11.7 years. Diagnoses made prior to celiac disease included anemia (40%), stress (31%), and irritable bowel syndrome (29%). Associated conditions like osteoporosis were common. Prior to diagnosis, 27% of respondents had consulted three or more doctors about their symptoms.

The data in 168 children (<16 years of age) showed similar results. The presenting symptoms included abdominal pain (90%), weight loss (71%), diarrhea (65%), weakness (64%), nausea/vomiting (53%), anemia (40%) and constipation (30%). Almost one-third of families consulted >2 pediatricians before confirmation of the diagnosis. Before the recognition of celiac disease, other diagnoses received by these children included anemia (15%), irritable bowel syndrome (11%), gastroesophageal reflux (8%), stress (8%), and peptic ulcer disease (4%).

October is National Celiac Awareness month

Improved awareness of celiac disease and greater use of serological screening tests will result in earlier diagnosis and reduced risk of associated conditions.

References
(1). The Canadian Celiac Health Survey Cranney A, Zarkadas M, Graham ID, Butzner JD, Rashid M, Warren R et al. Digestive Diseases & Sciences 2007;52(4):1087-1095
(2). The impact of a gluten-free diet on adults with coeliac disease: Results of a national survey Zarkadas M, Cranney A, Case S, Molloy M, Switzer C, Graham ID et al. Journal of Human Nutrition & Dietetics 2006;19:41-49
(3). Celiac disease: Evaluation of the diagnosis and dietary compliance in Canadian children Rashid M, Cranney A, Zarkadas M, Graham ID, Switzer C, Case S et al. Pediatrics 2005; 116: e754 - e759

Dr. Mohsin Rashid, FRCP(C) is a member of the Faculty of Medicine at Dalhousie University and is a member of the Professional Advisory Board with the Canadian Celiac Association. For more information about the Celiac Association, visit their website at www.celiac.ca

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