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“The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity”

“The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity”

Beyond Celiac began offering the field’s first “Celiac Disease Symptoms Checklist” in 2006 as part of its national awareness campaign designed to drive awareness and diagnosis. Available at www.DoIHaveCeliac.org, the Checklist is an online personal risk-factor tool aimed to start a conversation about celiac disease with physicians.

Because the Beyond Celiac robust web network and tools like this Checklist allow for multiple ways to understand unique information about patients with gluten-related disorders such as behaviors, values and medical history, we teamed up with the Lankenau Institute for Medical Research and the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) in 2011 to evaluate its impact.

The study involved analyzing data from a follow-up survey sent to individuals who completed the Beyond Celiac “Celiac Disease Symptoms Checklist” and offered some striking insights that are still useful today. In individuals with celiac disease and non-celiac gluten sensitivity (‘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 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/gluten sensitivity related symptoms and conditions, like the Checklist, 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 disease or gluten sensitivity with their clinician, as opposed to "clinician-initiated" diagnoses, in which the clinician begins the conversation.

An abstract of this work was accepted as a poster presentation to the International Meeting on Coeliac Disease, Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology, in 2012 in Florence, Italy. Learn more about this study by downloading the poster presentation here.

The study was authored by Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives; Abbe Lefkowitz of Lankenau Institute for Medical Research, Wynnewood, PA; Michael Chernick, PhD, Director of Biostatistical Services, Lankenau Institute for Medical Research,Wynnewood, PA; and Daniel Leffler, MD, MS, Director of Research at the Celiac Center at Beth Israel Deaconess Medical Center and Beyond Celiac Scientific/Medical Advisory Council member.

Note: At the time this research was conducted, Beyond Celiac was known as the National Foundation for Celiac Awareness. Learn more about the name change here

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