title: Characteristics of adult celiac disease in the USA: results of a national survey.
abstract: OBJECTIVE
  The clinical spectrum of adults with celiac disease in the United States, where the disease is considered rare, is not known. We sought this information by distributing a survey.
  
  
  METHODS
  A questionnaire was distributed by way of a celiac newsletter, directly to celiac support groups, and through the Internet.
  
  
  RESULTS
  Respondents (1,612) were from all United States except one. Seventy-five percent (1,138) were biopsy proven. Women predominated (2.9:1). The majority of respondents were diagnosed in their fourth to sixth decades. Symptoms were present a mean of 11 yr before diagnosis. Diarrhea was present in 85%. Diagnosis was considered prompt by only 52% and 31% had consulted two or more gastroenterologists. Improved quality of life after diagnosis was reported by 77%. Those diagnosed at age > or = 60 yr also reported improved quality of life. Five respondents had small intestinal malignancies (carcinoma 2, lymphoma 3) accounting for a relative risk of 300 (60-876) for the development of lymphoma and 67 (7-240) for adenocarcinoma.
  
  
  CONCLUSIONS
  Patients with celiac disease in the United States have a long duration of symptoms and consider their diagnosis delayed. Improved quality of life after diagnosis is common. An increased risk of developing small intestine malignancies is present.
authors.affiliation: Department of Medicine, Columbia University College of Physicians and Surgeons, and School of Public Health, Columbia University, New York, New York, USA.
authors.lastname: Green PHR
authors.forename: S N
authors.initials: SN
authors.lastname: Stavropoulos
authors.forename: S G
authors.initials: SG
authors.lastname: Panagi
authors.forename: S L
authors.initials: SL
authors.lastname: Goldstein
authors.forename: D J
authors.initials: DJ
authors.lastname: Mcmahon
authors.forename: H
authors.initials: H
authors.lastname: Absan
authors.forename: A I
authors.initials: AI
authors.lastname: Neugut
mesh_terms: D000293:Adolescent; D000328:Adult; D017668:Age of Onset; D000368:Aged; D000369:Aged, 80 and over; D001707:Biopsy, Needle; D002446:Celiac Disease / Q000175:diagnosis* / Q000178:diet therapy / Q000453:epidemiology*; D002908:Chronic Disease; D005260:Female; D005500:Follow-Up Studies; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D011788:Quality of Life; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014481:United States / Q000453:epidemiology