Celiac disease and the transition from childhood to adulthood: a 28-year follow-up.
OBJECTIVE
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.
O'Leary
Clare
C
Alimentary Pharmabiotic Centre and Department of Medicine, National University of Ireland, Cork and Affiliated Teaching Hospitals, Cork, Ireland.
Wieneke
Peter
P
Healy
Mary
M
Cronin
Cornelius
C
O'Regan
Paud
P
Shanahan
Fergus
F
D000328:Adult; D018798:Anemia, Iron-Deficiency / Q000453:epidemiology / Q000209:etiology; D015519:Bone Density; D001851:Bone Diseases, Metabolic / Q000453:epidemiology / Q000209:etiology; D002446:Celiac Disease / Q000150:complications / Q000503:physiopathology*; D002648:Child; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D011788:Quality of Life