Characteristics of adult celiac disease in the USA: results of a national survey.
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.
Green PHR
Department of Medicine, Columbia University College of Physicians and Surgeons, and School of Public Health, Columbia University, New York, New York, USA.
Stavropoulos
S N
SN
Panagi
S G
SG
Goldstein
S L
SL
Mcmahon
D J
DJ
Absan
H
H
Neugut
A I
AI
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