Characteristics of adult celiac disease in the USA: results of a national survey

Am J Gastroenterol. 2001 Jan;96(1):126-31. doi: 10.1111/j.1572-0241.2001.03462.x.


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.

MeSH terms

  • Adolescent
  • Adult
  • Age of Onset*
  • Aged
  • Aged, 80 and over
  • Biopsy, Needle
  • Celiac Disease / diagnosis*
  • Celiac Disease / diet therapy
  • Celiac Disease / epidemiology*
  • Chronic Disease
  • Female
  • Follow-Up Studies
  • Health Surveys
  • Humans
  • Male
  • Middle Aged
  • Patient Satisfaction
  • Quality of Life*
  • Surveys and Questionnaires
  • Treatment Outcome
  • United States / epidemiology