Health-related quality of life in adult coeliac disease in Germany: results of a national survey

Eur J Gastroenterol Hepatol. 2006 Jul;18(7):747-54. doi: 10.1097/01.meg.0000221855.19201.e8.


Objective: No national survey on the present clinical spectrum and health-related quality of life (HRQOL) in people with coeliac disease has been conducted in Germany until now.

Methods: The German Coeliac Society DZG posted a set of questionnaires (self-developed socio-demographic and medical questionnaire, the Short Form Health Survey, the Hospital Anxiety and Depression Scale and the Giessen Symptom Check List) to 1000/18 355 of their members who were >/=18 years (every 18th member following consecutive postal codes of the membership directory).

Results: Four hundred and forty-six usable questionnaires were returned (diagnosis proven by biopsy; 78% female, median age 45.5 years). The median interval between the first medical examination due to symptoms of coeliac disease and the final diagnosis was 1 year. Ninety-eight percent reported a reduction of initial symptoms, 85% an improvement of HRQOL with a median gain in weight of 8 kg after starting a gluten-free diet (median duration of 6 years). Sixty-seven percent adhered all the time to the dietary regimen and 26% adhered most of the time. The most frequent diseases associated with coeliac disease were osteoporosis (15%), oral aphtae (12%) and dermatitis herpetiformis (9%). Because of the presence of gastrointestinal symptoms 26% of the patients met the modified Rome I criteria for irritable bowel symptom. Compared to representative samples from the German population, coeliac disease patients had higher scores for anxiety , fatigue, dyspeptic and musculoskeletal pain, and a reduced HRQOL in 9/10 scales of the SF-36 (all P<0.001).

Conclusion: Despite being on a gluten-free diet German coeliac disease patients suffer from a high burden of general and extra-intestinal symptoms and a reduced HRQOL.

MeSH terms

  • Adult
  • Age of Onset
  • Aged
  • Aged, 80 and over
  • Anxiety / etiology
  • Attitude to Health
  • Celiac Disease / complications
  • Celiac Disease / diet therapy
  • Celiac Disease / psychology
  • Celiac Disease / rehabilitation*
  • Depression / etiology
  • Educational Status
  • Female
  • Germany / epidemiology
  • Health Status Indicators
  • Health Surveys
  • Humans
  • Irritable Bowel Syndrome / etiology
  • Male
  • Middle Aged
  • Patient Acceptance of Health Care
  • Psychiatric Status Rating Scales
  • Quality of Life*
  • Social Class