Short and long-term follow-up and clinical outcomes in patients with celiac disease in a large private practice setting

BACKGROUND: Celiac disease (CD) is caused by an immune response to gluten and treatment is adherence to a gluten-free diet. Guidelines from studies in large academic settings recommend registered dietitian (RD) referrals at time of diagnosis and periodic testing for micronutrient deficiencies. There is limited data to guide follow-up parameters in a large, community-based practice. The purpose of this study was to evaluate guideline adherence in this setting. METHODS: This retrospective study conducted in 2019 assessed CD care based on follow-up rates, micronutrient testing, symptoms, and serology results in cohorts with and without RD referrals. Patients in this study were followed at Rockford Gastroenterology Associates (RGA): a large, private GI practice. Patients were included if they had a diagnosis of CD from 1/2014 through 12/2018, based on positive serology and/or duodenal biopsy. Patient data was collected by chart review and analyzed through Microsoft Excel. Fisher’s exact and Chi-square tests were used for the statistical analysis and were calculated through the Statistical Product and Service Solutions (SPSS) software. RESULTS: 320 patients were initially reviewed and a cohort of 126 patients met inclusion criteria. 69.8% had a RD referral. 65.9% had at least one lab test order for any of the 6 micronutrients. Of 63 patients tested for iron, 11 were iron deficient (8 with RD referral). Of 64 patients tested for vitamin D, 21 were deficient (17 with referral). 80.2% attended at least one follow-up appointment, but 34.9% had only one follow-up visit over a mean follow up duration of 5.82 months. 79 patients had follow-up data for symptoms or serology and were separated into 4 categories (with vs. without RD referral): (1) asymptomatic and negative serology (32% vs. 26%), (2) symptomatic and negative serology (28% vs. 16%), (3) asymptomatic and positive serology (27% vs. 32%), (4) symptomatic and positive serology (13% vs. 26%). Category 1 yielded a fisher exact test value of 2.62 (p = 0.466). CONCLUSIONS: RD referral, micronutrient testing, and close follow-up are important parameters that affect outcomes in patients with CD. Rates for dietitian referral, some micronutrient testing and follow-up visits were higher than 50%, though results from this study were not statistically significant. Further standardization of follow-up testing and monitoring for CD will help minimize discrepancies between community-based and large, academic GI practices. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12876-023-02643-4.