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.
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.
Authors: Jacalyn A See; Katri Kaukinen; Govind K Makharia; Peter R Gibson; Joseph A Murray Journal: Nat Rev Gastroenterol Hepatol Date: 2015-09-22 Impact factor: 46.802
Authors: F Casellas; L Rodrigo; J López Vivancos; S Riestra; C Pantiga; J S Baudet; F Junquera; V Puig Diví; C Abadia; M Papo; J Gelabert; J R Malagelada Journal: World J Gastroenterol Date: 2008-01-07 Impact factor: 5.742
Authors: Jonas F Ludvigsson; Lars Agreus; Carolina Ciacci; Sheila E Crowe; Marilyn G Geller; Peter H R Green; Ivor Hill; A Pali Hungin; Sibylle Koletzko; Tunde Koltai; Knut E A Lundin; M Luisa Mearin; Joseph A Murray; Norelle Reilly; Marjorie M Walker; David S Sanders; Raanan Shamir; Riccardo Troncone; Steffen Husby Journal: Gut Date: 2016-04-18 Impact factor: 23.059