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.
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