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Letter from Alice: Spring Into Action
Spring has sprung, and so has Beyond Celiac! Here are a few of the exciting things that have happened in just the past month alone:
- For the fourth time, Beyond Celiac original research was accepted for presentation at Digestive Disease Week (DDW), the premier conference for healthcare professionals in gastroenterology and related fields. More to come in May, after we’ve presented!
- Our letter to the editor advocating for celiac disease patients was published in the journal Gastroenterology.
- Beyond Celiac research was published in the print version of the February 2024 edition of the American Journal of Gastroenterology.
- After years in the making, Beyond Celiac Investments (BCI) launched. BCI is an investment program using a portion of the funds donated to us to accelerate the development of treatments and a cure for celiac disease by leveraging the speed and scale of venture capital and capital markets. The strategy will identify promising treatments and accelerate their progress through financial investments complemented by BC’s expertise which includes a network of scientific, business, and regulatory experts and our position as the leading patient advocate and clinical trial enroller in celiac disease.
Alongside these successes, we’ve been busy doing research that otherwise wouldn’t be funded, amplifying the voice of our community in academic spaces, finding new ways to support research for treatments, and, as always, supporting our existing community where they are today.
But there’s always more to do! Our virtual 5K is back this spring, and anyone is welcome to join; no matter where you are or who you’re with, you can register, run (or walk, or roll) 3.1 miles anytime in May, and raise your voice for the gluten-free community. Register by April 14th and you’ll be sent an exclusive, spring 2024 Step Beyond Celiac 5K race t-shirt.
If you want to spring into action with us, visit stepbeyondceliac.org to learn more and sign up!
With gratitude,
Alice Bast, CEO
Gluten-Free Recipes
Whether you’re looking to celebrate St. Patrick’s Day or just enjoy a delicious dinner, this gluten-free corned beef and cabbage recipe is the perfect choice. If you share it with others, get ready for compliments! It’s sure to please gluten-free and gluten-eater guests alike.
Hot cross buns are an Easter classic, especially in the United Kingdom and British Commonwealth, but with their blend of dried fruits, zests, and spices, they make an excellent sweet treat any time of year.
This recipe was provided courtesy of our friends at the Gluten-Free Palate.
Trivia Question of the Month
QUESTION: What is the name for the extremely itchy rash associated with celiac disease?
ANSWER: The rash is called “dermatitis herpetiformis.” Sometimes referred to as gluten rash or celiac rash, DH is a chronic condition that is considered to be the skin form of celiac disease. In the past, DH was also known as Duhring disease, Duhring-Brocq disease or Brocq-Duhring disease. It’s got quite a few names!
The rash usually occurs on the elbows, knees, and buttocks and it is typically symmetrical, meaning it appears on both sides of the body. It is often mistaken for eczema, acne, or herpes.
Spring Into Action—Our May 5K is Back!
We have our sights set on a cure for celiac disease! Every step you take helps get us closer to our goal. Proceeds raised from our Step Beyond Celiac 5Ks support our work to accelerate treatments and a cure for celiac disease.
Until we reach the ultimate finish line—a cure for celiac disease—we’ll be putting our energy into helping people with celiac disease live better longer. Lace up your running shoes, set up your personal or team fundraiser, and let’s all get 3.1 miles closer to a cure!
Research News
Our Letter to the Editor Advocating for Patients Published in Gastroenterology
Recently, a group of researchers published their recommendations for standardizing celiac disease clinical trials. While on the whole we agree with the content, we were dismayed to learn that no patients or patient organizations had been consulted to develop these guidelines. We are proud to say that our response, a letter to the editor, was recently published in Gastroenterology.
Read more research news on our Research News Feed
Get Involved in Research
LILY Study
The LILY study is a celiac disease study that will measure the safety of the study medication, DONQ52, at targeting an immune complex known to cause celiac disease symptoms. There is no gluten challenge in this study. You may be compensated for time and travel.
Go Beyond Celiac
Take our Go Beyond Celiac annual survey!
This brief, annual survey will help both Beyond Celiac and researchers better understand how our community members’ celiac disease symptoms, challenges, attitudes, and behaviors evolve year to year.
If you’re signed up for Go Beyond Celiac, we invite you to log in and complete this year’s Annual Celiac Disease Survey. If you haven’t already joined, please become a member of Go Beyond Celiac and start sharing your story today.
This survey closes on April 30, so don’t miss out! Every story shared brings us one step closer to a cure.
Voices of Celiac: Mia’s Story
“The most challenging part was knowing that something wasn’t right, but it took her getting very sick for a provider to dive deeper.
After several doctors visits to our pediatrician, he eventually ordered a set of labs covering a wide range of diagnoses. Last minute, he added on the celiac disease panel. When the labs came back, her TTGA was 1000x normal and her IgA was double the high end of the normal range.”
Allergic Living Spotlight
7 Tips to Help You Let Go of Food Allergy Fears & Anxiety
On a medical diet, it’s easy to rely on “avoidance coping;” rather than working through ways to make situations safe, patients simply avoid them altogether. Think situations like traveling, dining out, or sleepovers. This limiting behavior can initially provide a feeling of safety, but in the long-term it can affect quality of life and perpetuate anxiety.
Read this article for tips on assessing the situation and pushing past boundaries when unwarranted anxiousness is the only thing holding you or your child back.
News, Events & Updates
March Town Hall, Research From Down Under: Exploring Controversies in Celiac Disease
Join us March 27th at 5 PM ET, 9 AM AEST for a free, virtual event, in which our guest Dr. Jason Tye-Din will talk about whether oats are safe, a potential blood test that doesn’t require the gluten challenge, and monitoring adherence to the gluten-free diet with urine tests.
Beyond Celiac Launches First Investment Program for Celiac Disease Therapeutics
Beyond Celiac announces the creation of Beyond Celiac Investments (BCI), an investment program to accelerate the development of treatments and a cure for celiac disease by leveraging the speed and scale of venture capital and capital markets. BCI launches with an initial funding of $2 million and additional capital will be raised through donations.
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.
