Physicians Caring for Celiac Patients do not Routinely Recommend Screening of First-Degree Family Members

Abhik Roy, Colin Smith, Constantine Daskalakis, Kristin Voorhees, Stephanie Moleski, Anthony J DiMarino, David Kastenberg


Aim: Screening first-degree relatives of celiac disease (CD) patients offers an opportunity to diagnose CD in a high-risk population. This study aims to determine how frequently CD patients receive a physician-issued recommendation for first-degree relative screening.    

Materials and Methods: A 12-question survey assessing whether CD patients receive a physician recommendation to screen first-degree relatives for CD, and the impact of such a recommendation, was validated with outpatients in a university gastroenterology practice (“University”). The 12-question survey was then distributed online to members of a celiac organization - the National Foundation for Celiac Awareness (“NFCA”). Results were collected over 3 months. Univariate analysis was used to compare cohort means and assess the association between demographic and diagnostic factors and first-degree relative screening recommendations.

Results: 87 University patients participated in the validation phase. Test-retest reliability of 4 key survey questions was high (Kappa coefficient >0.80). The main analyses were based on data from 677 NFCA and 82 University respondents. Respondents were predominantly female, with a mean age of 45 years. Significantly more University patients received a recommendation for screening (78% vs. 44%, p < 0.001). Ninety-eight percent receiving a screening recommendation (both groups) discussed this with family members, leading to CD screening (University 71%, NFCA 79%) and, ultimately, a CD diagnosis (University 18%, NFCA 27%).

Conclusions: Physicians of CD patients often do not recommend screening first-degree family members. The high clinical impact of this recommendation suggests that greater physician compliance with screening may increase the diagnosis of CD in high risk individuals.


celiac disease; screening; first degree relatives; family


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