title: Celiac Disease is Misdiagnosed Based on Serology Only in a Substantial Proportion of Patients.
abstract: BACKGROUND
  Although the diagnostic process in celiac disease (CeD) has been addressed in several international guidelines, little is known about the actual proceeding in current clinical practice. This study investigated the initial presentation, the diagnostic process, follow-up evaluations, and adherence to a gluten-free diet in CeD patients in a real-life setting in Switzerland from a patient's perspective.
  
  
  METHODS
  We performed a large patient survey among unselected CeD patients in Switzerland.
  
  
  RESULTS
  A total of 1689 patients were analyzed. The vast majority complained of both gastrointestinal and nonspecific symptoms (71.5%), whereas 1.8% reported an asymptomatic disease course. A total of 35.8% CeD patients were diagnosed by a nongastroenterologist. The diagnostic process differed between nongastroenterologists and gastroenterologists, with the latter more often using duodenal biopsy alone or in combination with serology (94.7% vs. 63.0%) and nongastroenterologists more frequently establishing the diagnosis without endoscopy (37.0% vs. 5.3%, P<0.001). Follow-up serology after 6 months was performed only in half of all patients (49.4%), whereas 69.9% had at least 1 follow-up serology within the first year after diet initiation. About 39.7% had a follow-up endoscopy with duodenal biopsies (after a median of 12 mo; range, 1 to 600 mo). The likelihood of receiving any follow-up examination was higher in patients initially diagnosed by a gastroenterologist.
  
  
  CONCLUSIONS
  A significant proportion of CeD patients are diagnosed by nongastroenterologists. Under the diagnostic lead of the latter, more than a third of the patients receive their diagnosis on the basis of a positive serology and/or genetics only, in evident violation of current diagnostic guidelines, which may lead to an overdiagnosis of this entity.
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Zurich.|Division of Gastroenterology and Hepatology, Triemli Hospital Zurich, Zurich.
authors.forename: Stephan R
authors.initials: SR
authors.lastname: Vavricka
authors.affiliation: Division of Gastroenterology and Hepatology, Triemli Hospital Zurich, Zurich.
authors.forename: Teresa
authors.initials: T
authors.lastname: Stelzer
authors.affiliation: Division of Gastroenterology and Hepatology, Triemli Hospital Zurich, Zurich.
authors.forename: Jaqueline
authors.initials: J
authors.lastname: Lattmann
authors.affiliation: Division of Gastroenterology and Hepatology, Triemli Hospital Zurich, Zurich.
authors.forename: Matthias
authors.initials: M
authors.lastname: Stotz
authors.affiliation: Division of Gastroenterology and Hepatology, Triemli Hospital Zurich, Zurich.
authors.forename: Romina
authors.initials: R
authors.lastname: Lehmann
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Zurich.
authors.forename: Jonas
authors.initials: J
authors.lastname: Zeitz
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Zurich.
authors.forename: Michael
authors.initials: M
authors.lastname: Scharl
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Zurich.
authors.forename: Benjamin
authors.initials: B
authors.lastname: Misselwitz
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Zurich.
authors.forename: Daniel
authors.initials: D
authors.lastname: Pohl
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Zurich.
authors.forename: Michael
authors.initials: M
authors.lastname: Fried
authors.affiliation: Division of Gastroenterology and Hepatology, Spital Tiefenau, Bern.
authors.forename: Radu
authors.initials: R
authors.lastname: Tutuian
authors.affiliation: Pediatric Gastroenterology and Nutrition, MassGeneral Hospital for Children, Boston, MA.
authors.forename: Alessio
authors.initials: A
authors.lastname: Fasano
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Lausanne-CHUV, Lausanne, Switzerland.
authors.forename: Alain M
authors.initials: AM
authors.lastname: Schoepfer
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Zurich.
authors.forename: Gerhard
authors.initials: G
authors.lastname: Rogler
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Zurich.
authors.forename: Luc
authors.initials: L
authors.lastname: Biedermann
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital Zurich.
authors.forename: Thomas
authors.initials: T
authors.lastname: Greuter
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002446:Celiac Disease / Q000097:blood / Q000175:diagnosis* / Q000178:diet therapy; D002648:Child; D002675:Child, Preschool; D003951:Diagnostic Errors; D003938:Diagnostic Techniques, Digestive System; D055050:Diet, Gluten-Free; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires; D013557:Switzerland; D055815:Young Adult