August 2022

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Letter from Alice: If Not You, Then Who?

Hillel the Elder, a first-century religious leader and scholar, is quoted as saying “If not you, then who? If not now, when?” I was reminded of this when reading the latest research news showing that researchers investigating celiac disease often have a personal connection to the condition. This recent study found that 15% of celiac disease researchers had celiac disease themselves and 34% had a family member with celiac disease. Celiac disease causes serious health effects, including the typical GI challenges, but also brain damage, infertility, brain fog, anemia, and more. This is a serious disease and affects millions of people, yet, year after year we hear that doctors don’t know enough about celiac disease; that it’s terribly underfunded; that research isn’t moving forward fast enough. But those of us personally affected by celiac disease are making a difference.

With your help, Beyond Celiac is funding and completing our own research on celiac disease. In the last few years, Beyond Celiac has awarded almost one million dollars in grants, and we’ve used that money to fund groundbreaking brain damage research, investigations on the role of CD8 T-cells in the disease, evaluations of mass screening, and so much more. We’ve prioritized research that will help our community get the help needed to get diagnosed, accelerate treatment options beyond the burdensome gluten-free diet, and possibly intercept the disease before it begins so that we can live healthier, longer lives.

We know you are with us, and we ask you to get even more involved. We need everyone diagnosed with or touched by this serious autoimmune disorder to join in to solve the puzzle that is celiac disease. Because we have learned time and time again that no one else is going to swoop in and save us.

However, I also understand that many in our community feel the burden and struggle of affording a gluten-free diet. And while donating directly to research is an amazing way to help accelerate progress, please know that it’s just one of many ways to make a difference.

In fact, here are six easy ways to support the cause of finding treatments and a cure for celiac
disease right now that don’t involve opening your wallet:

1. Join Go Beyond Celiac and fill out research surveys. Go Beyond Celiac is an online patient registry and app that collects data to accelerate research for celiac disease. Share your experiences to help change the future for those living with this serious autoimmune disease.
2. Share your story on Voices of Celiac. By collecting diagnosis stories, we can highlight the wide variety of symptoms of celiac disease and the challenges they face in getting diagnosed. The newly diagnosed or those searching for answers may find answers and comfort in the stories, and medical professionals can learn about the many manifestations of celiac disease.
3. Support Beyond Celiac on social media and connect with others in our virtual community. Find us on Facebook, Instagram, Twitter, LinkedIn, and YouTube, and reshare our posts to help spread awareness.
4. Sign up for a clinical trial. Research simply can not move forward without volunteers. You have the power to accelerate research toward breakthroughs by participating.
5. Start a Summer Beyond Celiac fundraiser. Easily create an online fundraising page to share your story with friends and family, even if you can’t gather together.
6. Volunteer your time and talents! Do you have experience in grant writing, scientific or medical translations, lobbying, event planning, or something else you’d like to share with us? Fill out the form at the bottom of our Get Involved page.

Every person in our community has the power to make a difference for those suffering from celiac disease. I leave you with the sage words of Hillel: If not you, then who? If not now, when?

Together for a cure,
—Alice Bast

Research News

Researchers investigating celiac disease often have a personal connection to the condition
Celiac disease researchers’ personal connection to the condition could have benefits for those who participate in celiac disease clinical trials, a study from Digestive Disease week suggests.

Black people with biopsy-confirmed celiac disease often have negative blood test results
In a new registry of celiac disease patients at the University of Alabama at Birmingham, Black people with biopsy confirmed celiac disease were more likely than non-Hispanic whites to had have negative results on the most commonly used diagnostic blood test.