Sequence of acquisition of self-management skills to follow a gluten-free diet by adults with celiac disease

Background: Celiac disease (CD) treatment is lifelong adherence to a gluten-free diet (GFD), requiring mastery of numerous skills to maintain health.

Aims: To assess the rate of self-management skill acquisition following diagnosis, and the influence of demographic factors on this rate.

Methods: Patients attending a celiac center were invited to complete an anonymous survey which reported demographic information and time for mastery of self-management skills relevant to CD.

Results: Completed surveys were returned by 137 patients (79% female). Most participants reported mastering skills that involved identifying gluten-containing versus gluten-free foods within 6 months. Explaining CD and GFD to others required 1-2 years. Identifying gluten in medications and supplements required 3-5 years. Traveling internationally with GFD adherence required more than five years to learn. Demographic factors were not associated with the rate of acquisition.

Conclusions: This is the first description of a timeline for relevant skill acquisition following diagnosis for CD. A sequence emerges, with most patients learning skills relevant to home, then social settings, then the workplace, and, finally, unfamiliar settings. Awareness of this progression of mastery, and particular recognition of difficult skills will allow physicians and dietitians to provide CD patients with targeted education and resources to facilitate adherence.