Abstract
BackgroundCeliac disease is present in ~1% of the general population in the United States and Europe. Despite the availability of inexpensive serologic screening tests, ~85% of individuals with celiac disease remain undiagnosed and there is an average delay in diagnosis of symptomatic individuals with celiac disease that ranges from ~5.8-11 years. This delay is often attributed to the use of a case-based approach for detection rather than general population screening for celiac disease, and deficiencies at the level of health care professionals. This study aimed to assess if patient-centered barriers have a role in impeding serologic screening for celiac disease in individuals from populations that are clinically at an increased risk for celiac disease.Methods119 adults meeting study inclusion criteria for being at a higher risk for celiac disease were recruited from the general population. Participants completed a survey/questionnaire at the William K. Warren Medical Research Center for Celiac Disease that addressed demographic information, celiac disease related symptoms (gastrointestinal and extraintestinal), family history, co-morbid diseases and conditions associated with celiac disease, and patient-centered barriers to screening for celiac disease. All participants underwent serologic screening for celiac disease using the IgA tissue transglutaminase antibody (IgA tTG) and, if positive, testing for IgA anti-endomysial antibody (IgA EMA) as a confirmatory test.ResultsTwo barriers to serologic testing were significant across the participant pool. These were participants not knowing they were at risk for celiac disease before learning of the study, and participants not knowing where to get tested for celiac disease. Among participants with incomes less than $25,000/year and those less than the median age, not having a doctor to order the test was a significant barrier, and this strongly correlated with not having health insurance. Symptoms and co-morbid conditions were similar among those whose IgA tTG were negative and those who tested positive.ConclusionThere are significant patient-centered barriers that impede serologic screening and contribute to the delayed detection and diagnosis of celiac disease. These barriers may be lessened by greater education of the public and health care professionals about celiac disease symptoms, risk factors, and serologic testing.
Highlights
Celiac disease is present in ~1% of the general population in the United States and Europe
Celiac disease is common in parts of North Africa and areas of the Middle East [2], but it is rare in the Japanese population consistent with a marked underrepresentation of the major human leukocyte antigen (HLA) DQ alleles that are required for disease susceptibility [3,4,5]
We report on patientcentered barriers to antibody based screening for celiac disease among clinically high-risk individuals recruited from the general population
Summary
Celiac disease is present in ~1% of the general population in the United States and Europe. Despite the availability of inexpensive serologic screening tests, ~85% of individuals with celiac disease remain undiagnosed and there is an average delay in diagnosis of symptomatic individuals with celiac disease that ranges from ~5.8-11 years. This delay is often attributed to the use of a case-based approach for detection rather than general population screening for celiac disease, and deficiencies at the level of health care professionals. Celiac disease can present with gastrointestinal tract symptoms, a wide array of extraintestinal manifestations, or both [6]. Gastrointestinal symptoms frequently include increased gas and bloating, abdominal pain, chronic diarrhea or constipation, and weight loss, whereas extraintestinal manifestations frequently include iron deficiency with or without anemia, an unexplained decrease in bone density or premature onset osteoporosis, unexplained increases in liver transaminases, depression, chronic fatigue, peripheral neuropathy, aphthous stomatitis, unexplained infertility, and dental enamel defects
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