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Letter from Alice: Answers Today; Treatments Tomorrow

While we focused on another successful Celiac Awareness Month in May, our funded scientists were rolling out important findings that help us answer questions about living with the disease on our way toward securing treatments. 

One of our community’s questions is why their symptoms or family members’ reactions change or worsen over time despite adhering to a gluten-free diet.  Through our investment in this area of research, findings have emerged from Oxford University, suggesting that immune “scarring” could explain why symptoms of celiac disease seem to evolve over time for some individuals. In addition to explaining why this may occur, the study emphasizes the importance of understanding the various ways in which individuals experience celiac disease as we seek to unlock effective treatments.

By partnering with all of you over the years, we have learned that people with celiac disease commonly report brain fog, migraines, and other neurological symptoms. A study at the University of Sheffield, also supported by Beyond Celiac, explores the gut-brain connection to enhance our understanding of the neurological effects of celiac disease. Dr. Iain Croall presented initial findings and addressed community questions during our recent town hall meeting, titled “Trust Your Gut,” alongside Beyond Celiac’s Chief Medical Officer, Dr. Jordan Debow. You can watch it on YouTube.

Living with celiac disease comes with a great deal of uncertainty. But studies like these help us establish connections between celiac disease and its various symptoms while also advancing the search for a cure. This dual approach recurs in all eight of our currently funded studies, with topics ranging from understanding the human microbiome and immune response to exploring interventions that support teenagers with celiac disease.

If you’re interested in the research happening at Beyond Celiac or are curious about the celiac questions scientists are attempting to answer worldwide, I encourage you to sign up for our Research News email. We also share updates and practical applications of scientific discoveries on your favorite social media channels (give us a follow on Facebook, Instagram, TikTok or LinkedIn!)

From awareness and education to ground-breaking research, everything Beyond Celiac does begins at the intersection of community needs and scientific discovery. Supporters like you are the engine that enables us to continue pushing for more. 

This month, we send a special thanks to the  Dallas and Virtual Step Beyond Celiac participants, who have raised over $100,000 for a future beyond the gluten-free diet. We also extend a heartfelt thank you to our Evening Beyond Celiac supporters, who responded to a special appeal for research funding by contributing a record-breaking $75,000. If we raise another $25,000, we can support another early investigator award! We invite you to join this community of supporters working together to drive the education and science that will secure a world beyond celiac disease. 

Toward a world where everyone can eat without fear, 
—Alice Bast, CEO


A coupon for $1.00 off your next purchase from O'Doughs, a company selling certified gluten-free breads and baked goods.

Gluten-Free Recipes

Impossibly Easy Cheesecake

Sweeten your next summer meal with this easy gluten-free cheesecake. Add a touch of the season by topping with summer fruits like strawberries, raspberries, blueberries, or even citrusy oranges, candied lemons or limes.


A close-up of coleslaw with an orange vinaigrette.

Coleslaw with Orange Vinaigrette

This wonderful vinaigrette is tasty, tangy, simple and safe for those of you that can’t eat eggs. It is very tangy, so slowly add the dressing to the shredded carrots and cabbage. It’s great for a summer BBQ party!


Voices of Celiac: Lance’s Story

“Now that Lance is on a strict gluten-free diet he is THRIVING. He is doing great in school, able to play three sports, and overall looks so much healthier. He has grown inches in just one year! He has to take those extra steps to make sure everything he touches is safe for him. He is so strong and resilient. We are all so proud of him and all the challenges he has to overcome!”

A photo of Lance smiling.

Read Lance’s Story

Share Your Story


Trivia Question of the Month

Question

True or False: All products that are labeled gluten-free in the United States are safe for people with celiac disease. 

Answer

In the United States, this is technically false. Food manufacturers may use the term gluten-free if the product contains fewer than 20 parts per million (ppm) gluten, but the safety of these products is only verified by the manufacturer themselves. The FDA does not require testing to ensure it is gluten-free. The safest options for people with celiac disease will bear a gluten-free certification, verifying an independent third party tests them. There are a few companies that test products to ensure they’re gluten-free. Read about what the different certifications mean here.

While it’s exceptionally rare that a product labeled gluten-free would sicken someone with celiac disease, it’s important to understand how food safety and labeling works—it’s always a good idea to read the ingredients list, even on products labeled GF!


An ad for Jones Dairy that reads, "We make products everyone in the family can enjoy. Making breakfast better since 1889."

Research News

Breastfeeding and daily gluten consumption may influence whether an at-risk child develops celiac disease

Breastfeeding in early infancy, the amount of gluten a baby consumes daily, as well as nationality, sex and birth order are environmental factors that influence whether at-risk children go on to develop celiac disease, a study presented recently at Digestive Disease Week (DDW) found.

Changes in the gut that lead to an immune “scar” could be the cause of ongoing celiac disease symptoms, a new study funded by Beyond Celiac has found

In celiac disease, changes in the gut that persist even on a gluten-free diet may lead to an immune “scar” that could be the cause of ongoing symptoms, new research funded by Beyond Celiac has found.

Read more research news on our Research News Feed

Research Opportunities

Parent-Child Survey

At Beyond Celiac, our research team aims to examine which types of clinical trials (research studies) parents may be willing to allow their children to participate in. If you’re the caregiver of a child with celiac disease, please fill out our short survey to help us better understand our community’s thoughts and preferences.


Allergic Living Spotlight

ADDE Act for Allergy Menu Labels Gets Boost As NonProfits Clash

The Asthma and Allergy Foundation of America (AAFA) says the legislation “has the potential to prevent ER visits and save lives,” according to Kenneth Mendez, AAFA’s president and CEO. However, not everyone supports the ADDE bill. The large food allergy nonprofit FARE has joined with the California Restaurant Association (CRA) to oppose the bill. The organizations submitted a joint letter outlining their concerns.


News & Updates

Watch our May Town Hall, “Can You Trust Your Gut?”

In our May Town Hall, Dr. Iain Croall, PhD, MRes, BSc and Jordan Dubow, MD discussed how eating gluten can affect neurological health in those with celiac disease and non-celiac gluten sensitivity. They then answered your questions about neurological health and the gut-brain connection.

This event was possible thanks to support from Crunchmaster!

Raise Money for Beyond Celiac on Facebook!

Happy birth-month to all our June-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.

Read more news on our Celiac in the News feed

Think you may have celiac disease?

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