Long‐term follow‐up of coeliac disease – what do coeliac patients want?

Summary Background Coeliac disease affects up to 1% of the population and the British Society of Gastroenterology recommends long‐term follow‐up of these patients, although the absolute risk of complications is small. Aim To determine what proportion of patients with coeliac disease remain under specialist follow‐up and to examine patients’ perspectives on the long‐term management of coeliac disease. Methods A questionnaire was sent to 183 patients who had a duodenal biopsy between July 1994 and July 2004 which was consistent with coeliac disease. Results A total of 126 (69%) patients returned their questionnaire. Patients had on average been diagnosed with coeliac disease 5.4 years earlier. Eighty‐eight percentage were trying to follow a strict gluten‐free diet. Sixty‐two percentage of patients were under regular follow‐up although this varied between hospital clinic (doctor/dietitian, 92%) and General Practitioner (8%). Most patients found at least one aspect of the hospital out‐patient clinic very useful. The preferred method of coeliac disease follow‐up was to see a dietitian with a doctor being available (P