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

Aliment Pharmacol Ther. 2006 Mar 15;23(6):827-31. doi: 10.1111/j.1365-2036.2006.02824.x.


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 < 0.05 vs. all other options).

Conclusions: Respondents to this study showed great variation in follow-up of their coeliac disease -38% were under no active follow-up. Patients would prefer to see a dietitian for long-term follow-up.

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Ambulatory Care / psychology
  • Attitude to Health
  • Celiac Disease / diet therapy
  • Celiac Disease / psychology
  • Celiac Disease / therapy*
  • Diet, Protein-Restricted
  • Female
  • Glutens / administration & dosage
  • Health Personnel
  • Humans
  • Long-Term Care / methods
  • Male
  • Middle Aged
  • Patient Satisfaction


  • Glutens