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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
Try your hand at making bread for St. Patrick’s day. It’s delicious served warm with jam or butter, but it’s also great paired with a hearty stew or soup.
You only need five ingredients to make the best ever gluten-free cheese crackers that taste like a name-brand treat! They’re exactly what a cracker should be: crunchy and salty.
This recipe is courtesy of our friends at Gluten-Free Palate.
Research News
Celiac disease moderately increases the risk of heart disease
Despite being less likely to be overweight, have high blood pressure or high cholesterol and other known risk factors, people who have celiac disease may be more likely to develop heart disease than people who don’t, according to a new UK study.
Voices of Celiac: Hunter’s Story
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.
Get Involved in Research
Survey Opportunity from a PhD Student
I am a doctoral student living with celiac disease. I am working on my doctoral research project, and I need your help. The goal of my study is to understand the effects of living in rural or in urban areas, along with other traits, for individuals with celiac disease. If we are better able to understand the effects of geographic location, we can help medical professionals identify those with celiac disease who may need extra support. Would you like to help contribute to the knowledge about those with celiac disease to increase patient care?
Participants must be:
- Over the age of 18
- Have a medical diagnosis of celiac disease
- Have a current address in the United States
If you fit these requirements and are interested in helping, please take the 5-minute survey.
ILLUMINATE-062 Study
Participants are needed for the ILLUMINATE-062 Study, which is looking at the safety and effectiveness of an investigational medication designed to break down gluten in the stomach compared with placebo in those with celiac disease who are on a gluten-free diet. The study will evaluate how well the investigational medication reduces celiac-related symptoms and intestinal damage due to gluten exposure.
Participants who have been diagnosed with celiac, which was confirmed by a biopsy, and have been on a gluten-free diet for at least 12 months are needed. Study-related care is provided at no cost and a travel stipend may be provided.
Allergic Living Spotlight
Food Allergies: Hot Tips For Kissing Safely
According to pediatric allergist Dr. Scott Sicherer, studies show that between 5 and 12 percent of food-allergic individuals will experience a reaction from kissing. Here’s how to romance and move on to kissing, with only the right kind of reaction.
News, Events & Updates
Reach Beyond Celiac Ambassador Alyssa spoke with fellow Ambassadors to compile a list of their top tips for teens who have been diagnosed with celiac disease. Read this article for their best advice on growing up with celiac disease!
Raise Money for Beyond Celiac on Facebook!
Happy birth month to all our March-born community members! When your big day rolls around, consider raising money for Beyond Celiac so that we can help fund new research by scientists in the celiac disease field. And a HUGE thank you to everyone who’s created fundraisers for us throughout the years! These fundraisers help make our important work possible.