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.