Population screening for celiac disease: follow up of patients identified by positive serology

BACKGROUND AND AIM: A previous study that evaluated the prevalence of celiac disease (CD) in a cohort of healthy blood donors, found that 3.8% of subjects had positive serology for CD. The aim of the present study was to examine how the screening results and the diagnosis of CD affected these patients' lifestyle and attitude toward CD. METHODS: All subjects with positive serology for CD (n = 59) found in the previous study of healthy blood donors (n = 1571) were contacted and interviewed. Data collected included current and previous symptoms compatible with CD, medical follow up since being informed of positive serology for CD and adherence to gluten-free diet (GFD). Information was obtained regarding attitude towards the screening for CD, the results of the screening, and the effect of screening on subjects' lifestyle. RESULTS: Of the 59 subjects, 51 were available for telephone interview, including all 10 subjects diagnosed with CD (positive serology and biopsy), 17/20 with positive serology and normal intestinal mucosa, and 24/29 with positive serology who refused to undergo intestinal biopsy. Of the 10 patients diagnosed with CD, four adhere to GFD. Only 1/17 subjects with normal intestinal mucosa repeated serology. Two of the 24 who initially refused a biopsy, underwent an intestinal biopsy, and one of them was currently diagnosed with CD. Only one patient diagnosed with CD had all his family members screened for CD. CONCLUSIONS: The data suggest that many of the patients identified in this screened population do not ultimately benefit from the purpose of the screening, which was early identification and treatment of a common disease with potential serious consequences.