Management of coeliac disease: a changing diagnostic approach but what value in follow up?

OBJECTIVE To assess the management of patients with coeliac disease in relation to a change in diagnostic method from jejunal suction biopsy to endoscopic biopsy. DESIGN 16 item questionnaire survey of consultant members of the British Society of Gastroenterology. SUBJECTS 359 consultant physician and gastroenterologist members of the society. MAIN MEASURES Type of routine biopsy; repeat biopsy after gluten withdrawal; gluten rechallenge; follow up measurements; screening for malignancy; and methods of follow up, including special clinics. RESULTS 270(70%) members replied; 216(80%) diagnosed coeliac disease routinely by endoscopic duodenal biopsy, 30(11%) by jejunal capsule biopsy, and the remainder by either method. Only 156(58%) repeated the biopsy after gluten withdrawal, though more did so for duodenal than jejunal biopsies (134/216, 62% v 13/30, 43%; p < 0.02). Follow up biopsies featured more duodenal than jejunal biopsies (133/156, 82% v 23/156, 15%; p < 0.02). Regular follow up included assessments of weight (259, 96%) and full blood count (238, 88%) but limited assessment of serum B-12 and folate (120, 44%) and calcium (105, 39%) concentrations. Routine screening for malignancy is not performed, and there are few specialist clinics. 171(63%) respondents thought that patients should be followed up by a hospital specialist and 58(21%) by family doctors. CONCLUSIONS The practice of diagnosing coeliac disease varies appreciably from that in many standard texts. Many patients could be effectively cared for by their family doctor. IMPLICATIONS The British Society of Gastroenterology should support such management by family doctors by providing clear guidelines for them.