Background: The Autoimmunity Screening for Kids (ASK) study is a mass screening program in the United States for celiac disease (CeD) and type 1 diabetes. A potential concern with screening and early detection is loss to follow-up. This poster presents data from caregiver interviews regarding follow-up after a positive CeD screen.
Setting/Population: This study is conducted at the University of Colorado – Anschutz Medical Campus. Participants include caregivers of children with at least one positive tissue transglutaminase test (tTG) identified through the ASK study. As of August 2026, there were 11 participants.
Methods: Semi-structured interviews were used to elicit information on caregivers’ experiences accessing specialty care following positive screening for CeD. Purposive sampling was used with the goal of achieving a diverse sample of caregivers by language spoken and whether they followed up with GI to confirm the CeD diagnosis. Data collection will continue until thematic saturation is reached.
Results: All caregivers interviewed to date (n = 11) followed up with GI after receiving a positive ASK screening result. Caregivers reported reasons for follow-up with GI included seeking a definitive CeD diagnosis, identifying resources and support, and ascertaining the necessity of adopting a gluten-free diet (GFD). Insurance referrals and medical costs associated with diagnosis were a concern for follow-up. Caregivers reported concerns about the psychosocial and financial impacts of switching to the GFD, as well as the social and emotional impacts for the child with a new CeD diagnosis.
Conclusions: Even though access to diagnosis and care is key to the health of individuals with CeD, little is known about caregiver experiences that may impact their decision-making following a positive tTG test. Preliminary results from this study speak to barriers and facilitators for supporting individuals with a positive CeD screen.