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Letter from Alice: Presenting Our Research at DDW
At Beyond Celiac, our mission is to drive diagnosis, treatments, and a cure for celiac disease. As we continue our efforts to make this a reality, I wanted to share some exciting news with you about our research initiatives and the impact of our Go Beyond Celiac patient registry.
One of the ways we are accomplishing our mission is by partnering with you and other organizations and investing in original research. We are proud to have recently been accepted to present two abstracts at the upcoming Digestive Disease Week (DDW). One was created using data from our Go Beyond Celiac registry while the other was from our Celiac Index, created in conjunction with the National Minority Quality Forum. This is a significant accomplishment, as DDW is the largest international gathering of physicians, researchers, and industry leaders in the fields of gastroenterology, hepatology, endoscopy, and gastrointestinal surgery and it is an important way for us the be heard and understood.
The abstracts, titled “Correlations between relative prevalence of celiac disease and sociodemographic variables in the United States” and “Frustration, fear, and luck — Factors facilitating celiac disease diagnosis and support seeking behaviors: A Go Beyond Celiac analysis,” highlight the importance of demographic research along with patient-reported outcomes in the understanding and management of celiac disease. We’ll be able to share more once they’ve been presented, but for now, I’d like you to know that the over 8,000 members of our registry are making a difference! This is just one example of the impact your participation in Go Beyond Celiac is having on the celiac disease community.
If you haven’t already, I encourage you to join the Go Beyond Celiac registry and help us continue to drive meaningful change. Your participation provides us with valuable data that enables our organization along with researchers and clinicians to better understand the experiences of those living with celiac disease, which in turn informs our research and advocacy efforts.
Together, we can drive progress and make a real difference for those living with celiac disease. Thank you for your support, and I look forward to continuing our work together.
Together for a cure,
—Alice Bast
I still tried to play recreational football and basketball as often as I could to stay active. I would get winded fast, have no energy and constantly feel lethargic. My physique disappeared as my muscles shrunk and I gained a lot of fat. Whenever I ate, I always felt like I was malnourished and not digesting my food. I spent every day battling ridiculous amounts of brain fog that never seemed to leave.
