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Letter from Alice: A Call for Community Action
Despite its prevalence and seriousness, celiac disease continues to confound many around the world. It remains misunderstood, misdiagnosed, mistreated, and without a cure.
Last year, Beyond Celiac unveiled the first nationwide benchmark report on celiac disease. Shockingly, it revealed that only half of Americans are knowledgeable about celiac disease and gluten sensitivity. Earlier this year, we once again collaborated with The Harris Poll, a market research company tracking American thoughts and attitudes since 1963, to conduct another nationwide survey. This survey unearthed additional eye-opening statistics that you will find in our new report, including that 28% of Americans assume that people who eat gluten-free are just trying to get attention.
Although celiac disease awareness has made significant strides since the inception of our organization in 2003, there is obviously still work to be done. Our vision is a world where individuals with celiac disease can lead healthy lives, free from social stigma and the fear of gluten exposure.
It is time for change. It is time to find a cure. Beyond Celiac is actively working to drive treatments that will lead to a cure by 2030. You can help by spreading awareness, following and sharing our social posts, joining our patient registry, donating to research, and participating in clinical trials and non-clinical celiac studies.
We understand the frustration those who experience symptoms but lack a diagnosis face. We empathize with the 3.2 million Americans who live with celiac disease. I understand because I, too, have celiac disease. After visiting 22 doctors without answers, it was only when a veterinarian friend suggested celiac disease that I approached the 23rd doctor, requested a blood test, and finally received a diagnosis. I still find it difficult to eat without fear. This personal journey fuels my passion and mission to accelerate the quest for a cure by 2030.
Let us come together as a community and commit ourselves to unraveling the mystery surrounding celiac disease. Take some time today to read through our new report, The Persisting Myths About Celiac Disease: Americans’ Attitudes and Understanding Are Falling Short, and spread some awareness about this serious autoimmune disease.
Let us all commit to solving the mystery and to creating a future beyond celiac disease! The key ingredients are you and your family members. Please make an investment today.
Together for a cure,
Alice Bast
CEO
Try this forest fruit tiramisu recipe to sweeten a warm summer evening. The recipe calls for blackberries, raspberries, strawberries, but you can customize it by adding blueberries, cherries, or even plums!
Are you missing perfect, slightly chewy pasta on the gluten-free diet? Then check out this simple recipe for delicious, gluten-free pasta! You’ll be making fancy, authentic noodles in no time.
This recipe is courtesy of our friends at Gluten-Free Palate.
July Town Hall: Patient Empowerment
Join us on July 26 at 2 PM ET as we chat with Juanita Belton, PA-C, MPH, from Color of Crohn’s & Chronic Illness (COCCI), about how patients can better advocate for themselves in healthcare spaces.
All registrants will receive a link to a recording of the event whether or not they attend.
Sign up for this FREE virtual event
Come on On Down September 30th!
Noticias sobre investigación
Stool tests reveal it’s common for unintended gluten to get into a strict gluten-free diet
Even celiac disease patients who were following a gluten-free diet and felt well were still unintentionally consuming some amount of gluten that was detected in stool tests, according to preliminary results of a study recently presented as a poster at Digestive Disease Week (DDW).
Race and its impact on genetic risk and testing for celiac disease
Two separate studies related to race and potential healthcare disparities in celiac disease were presented recently as posters at Digestive Disease Week (DDW). One investigated celiac disease associated genes and the other the frequency of celiac disease testing in Black people.
Read more research news on our Research News Feed
Voices of Celiac: Emily’s Story
Prior to diagnosis I was a professional dancer with a very active lifestyle. Then I got very sick. The nausea, pain and bloating were too much for me at times. There was a point where I lost 32 pounds in just two months because I couldn’t stomach anything but liquids. I lived off Ensures [meal replacements] and it felt like I would never come out of it. Waiting for a diagnosis and just holding onto that hope was the hardest part.
Get Involved in Research
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.
PROACTIVE Study
Still experiencing celiac disease symptoms despite your gluten-free diet? This phase 2 clinical trial is testing the investigational medication PRV-015 in combination with a gluten-free diet for ongoing celiac disease symptoms.
Allergic Living Spotlight
Food Allergy Experts Weigh In on: Global ‘May Contain’ Labels
International food safety experts are moving ahead on recommendations to define and standardize allergen “may contain” labels on packaged foods across the globe. They are also closing in on a uniform list of top allergens, with some changes likely to raise debate in the food allergy community.
News, Events & Updates
By sharing her DIY interior design creations on TikTok, Emily Shaw became a social media sensation practically overnight. Shaw, who renovates spaces and repurposes budget household items, has nearly six million followers on TikTok alone, and has dedicated her career to this niche craft. Something her fans may not know is that she happens to have celiac disease, an autoimmune disease. Learn more in episode 68 of our podcast!
Exciting developments are underway in the celiac disease space as the Beyond Celiac Coalition proudly announces the addition of three esteemed members to its ranks.
Raise Money for Beyond Celiac on Facebook!
Happy birth month to all our July-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.