title: Follow-up of children with celiac disease - lost in translation?
abstract: BACKGROUND
  Celiac disease (CD) is a prevalent condition with a broad spectrum of presentations requiring a lifelong gluten-free diet (GFD). Our aims were to examine the presentation and adherence to a GFD as well as the adequacy of follow-up of children diagnosed with CD at a tertiary referral center.
  
  
  METHODS
  A retrospective electronic chart review of pediatric patients suspected of CD (n = 581) who were seen at our institute between January 1999 and December 2008 was performed.
  
  
  RESULTS
  387 children were diagnosed with CD (F/M ratio of 1.54, median age: 6.25 years). Presenting symptoms were iron deficiency anemia (n = 82, 34%), short stature (n = 59, 24.5%) and abdominal pain (n = 59, 24.5%). In 63 patients (16.3%) an associated autoimmune disease was recorded. Only 42.7% of the patients (165/387) had regular out-patient gastroenterologist visits; 22% (86/387) were followed by their primary care physician. Over 35% (136/387) were completely lost to follow-up. Negative serology on follow-up was present in 91% of the CD patients(150/165) followed at our center in comparison to 70% (60/86) in those followed up by their primary physician (p = 0.0002).
  
  
  CONCLUSIONS
  At least in our referral center, follow-up of children diagnosed with CD is far from satisfactory. Initiatives aimed at improving adherence to regular follow-up are needed as this intervention is associated with a significant increase in patient compliance with a long-term GFD.
authors.affiliation: Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach Tikva, Israel. yaelm3@clalit.org.il
authors.forename: Yael
authors.initials: Y
authors.lastname: Mozer-Glassberg
authors.forename: Noam
authors.initials: N
authors.lastname: Zevit
authors.forename: Yoram
authors.initials: Y
authors.lastname: Rosenbach
authors.forename: Corina
authors.initials: C
authors.lastname: Hartman
authors.forename: Sara
authors.initials: S
authors.lastname: Morgenstern
authors.forename: Raanan
authors.initials: R
authors.lastname: Shamir
mesh_terms: D000293:Adolescent; D002446:Celiac Disease / Q000097:blood / Q000178:diet therapy*; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D055050:Diet, Gluten-Free; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D059012:Lost to Follow-Up; D008297:Male; D010349:Patient Compliance; D012189:Retrospective Studies