Clinical features and symptom recovery on a gluten-free diet in Canadian adults with celiac disease.

backgroundCeliac disease can present with mild or nongastrointestinal symptoms, and may escape timely recognition. The treatment of celiac disease involves a gluten-free diet, which is complex and challenging.

objectiveTo evaluate clinical features and symptom recovery on a gluten-free diet in a Canadian adult celiac population.

methodsAll adult members (n=10,693) of the two national celiac support organizations, the Canadian Celiac Association and Fondation québécoise de la maladie coeliaque, were surveyed using a questionnaire.

resultsA total of 5912 individuals (≥18 years of age) with biopsy-confirmed celiac disease and⁄or dermatitis herpetiformis completed the survey. The female to male ratio was 3:1, and mean (± SD) age at diagnosis was 45.2 ± 16.4 years. Mean time to diagnosis after onset of symptoms was 12.0 ± 14.4 years. Abdominal pain and bloating (84.9%), extreme weakness⁄tiredness (74.2%), diarrhea (71.7%) and anemia (67.8%) were the most commonly reported symptoms at the time of diagnosis. Many respondents continued to experience symptoms after being on a gluten-free diet for >5 years. Sex differences were reported in clinical features before diagnosis, recovery after being on gluten-free diet and perceived quality of life, with women experiencing more difficulties than men.

conclusionsDelays in diagnosis of celiac disease in Canada remain unacceptably long despite wider availability of serological screening tests. Many patients report continuing symptoms despite adhering to a gluten-free diet for >5 years, with women experiencing more symptoms and a lower recovery rate than men. Awareness of celiac disease needs improvement, and follow-up with a physician and a dietitian is essential for all patients with celiac disease.