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Celiac disease: evaluation of compliance to a gluten-free diet and knowledge of the disease in celiac patients registered at the Brazilian Celiac Association (BCA)

Background — The compliance to a gluten-free diet may prevent the development of both non-malignant and malignant complications. Aim - To evaluate compliance to a gluten-free diet and knowledge of the disease in celiac patients registered at the Brazilian Celiac Association (BCA). Methods - A structured questionnaire was designed to assess compliance to a gluten-free diet as well as knowledge of the celiac disease. It was mailed to 584 members of BCA. Results - Five hundred and twenty nine (90.6%) of a total of 534 (91.4%) answered questionnaires were analyzed; 69.4% were classified as compliant patients whereas 29.5% were classified as noncompliant. The proportion of patients age 21 or older who consume gluten frequently or without any restriction is larger (17.7%) than those who were younger than 21 years (9.9%). Frequency of dietary compliance was higher when the diagnosis had taken less than 5 years to be established; 82% of the patients replied that the small intestine was the part of the body affected by the disease. The most common symptoms of the disease according to the answers were diarrhea (96.6%), weight loss (93.4%), protuberant abdomen (90.4%), anemia (68.1%) and vomiting (59.6%). Only 59.0% agreed with the existence of genetic predisposition; 90.4% answered that the disease is permanent and 96.2% stated that the diet should exclude gluten absolutely; 67.1% answered that the gluten is a protein and according to 92.1% questionnaires this protein is present in wheat, rye, barley and oat. Greater compliance was observed when there was an understanding of the disease and diet. The small intestine biopsy was considered necessary for just 67.5% of the patients, and greater compliance was observed in patients who had undergone at least one small intestine biopsy. Conclusion - Our findings indicate that the more the patients know and understand about the disease, the better able they are to comply with the diet.

Celiac disease; Questionnaires; Knowledge; Patient compliance; Diet therapy


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