Last March, the National Foundation for Celiac Awareness (NFCA) presented a poster at the International Meeting on Coeliac Disease, Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology, held in Florence, Italy. Now, we are sharing the poster with you.

Titled “The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity,” the poster highlights findings from a collaborative study conducted by NFCA, the Lankenau Institute for Medical Research and the Celiac Center at Beth Israel Deaconess Medical Center. The study analyzed data from a follow-up survey sent to individuals who completed NFCA’s Celiac Disease Symptoms Checklist.

The study offers some striking insights. In individuals with celiac disease and non-celiac gluten sensitivity, the primary form of diagnosis was self-initiated, rather than prompted by a clinician such as a primary care physician or gastroenterologist. Further, in those diagnosed after completing the Celiac Disease Symptoms Checklist, self-initiated diagnosis was more common than a diagnosis initiated by a clinician. This finding may support the use of an online tool used to survey celiac disease/non-celiac gluten sensitivity related symptoms and conditions in empowering U.S. patients to prompt their healthcare providers to consider a gluten-related disorder diagnosis.

[Note: To clarify, “self-initiated diagnoses” mean that the patient started the conversation about celiac or non-celiac gluten sensitivity with their clinician, as opposed to “clinician-initiated” diagnoses, in which the clinician begins the conversation.]

As suspected, the majority of those with celiac disease and non-celiac gluten sensitivity said they always follow a gluten-free diet. Notably, among those survey participants who were not diagnosed with either celiac disease or non-celiac gluten sensitivity, the results were roughly evenly distributed among always, sometimes or never following the gluten-free diet. This finding may suggest that despite not having an official diagnosis, some individuals may use a gluten-free diet to periodically treat recurring symptoms or for other lifestyle reasons.

To enlarge the poster and view more findings from this study, click on the poster image above.

For questions or comments about this poster, please contact [email protected]