Celiac disease and the transition from childhood to adulthood: a 28-year follow-up

Am J Gastroenterol. 2004 Dec;99(12):2437-41. doi: 10.1111/j.1572-0241.2004.40182.x.


Objectives: Follow-up of celiac disease diagnosed in childhood is variable or nonexistent after transition to adulthood. Outcome, continuity of care, and adherence to a gluten-free diet are poorly documented. We report a 28-yr follow-up of 50 adults in whom the original childhood diagnosis could be confirmed.

Methods: Original pediatric charts were reviewed, and subjects were invited to undergo dietary evaluation, measurement of bone mineral density, and quality-of-life assessment. The mean duration of celiac was 28.5 yr, median 28.7 yr (range 22-45 yr). The mean and median age of the group was 35 yr.

Results: Only 22% of patients were enrolled in an adult gastroenterology clinic. Fifty percent were fully compliant with a gluten-free diet; 18% were partially compliant; and 32% were not adhering to diet. The main motivating factor for dietary compliance was avoidance of symptoms rather than avoidance of complications. Eighty-six percent of the females and 21% of the males had iron deficiency. Bone mineral density was subnormal in 32%; 28.9% were osteopenic and 2.6% were osteoporotic. Quality-of-life scores were normal.

Conclusions: Most patients diagnosed with celiac in childhood receive no medical or dietary supervision after transition to adulthood. One-third are not compliant with diet; the primary motivating factor for those who do comply is avoidance of symptoms rather than fear of complications. The prevalence of preventable and treatable disorders in these young adults highlights a failure of health services after transition from pediatric to adult health care.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Anemia, Iron-Deficiency / epidemiology
  • Anemia, Iron-Deficiency / etiology
  • Bone Density
  • Bone Diseases, Metabolic / epidemiology
  • Bone Diseases, Metabolic / etiology
  • Celiac Disease / complications
  • Celiac Disease / physiopathology*
  • Child
  • Female
  • Follow-Up Studies
  • Humans
  • Male
  • Middle Aged
  • Outcome Assessment, Health Care
  • Quality of Life