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The Burden of Celiac Disease — Real Patients, Real Stories

April 10, 2023

Reach Beyond Celiac Ambassador Hayden Bishop recently undertook a project to interview people who have celiac disease: what they struggle with, how they manage the condition, and what they hope the future holds. With this video project, Hayden and Beyond Celiac hope that people can better understand the unique burden of this autoimmune disease.

What is Celiac Disease?

Celiac disease is an autoimmune condition that affects at least 1% of the population. Symptoms can be gastrointestinal, neurological, psychological, or even manifest as a rash. Some people have no symptoms at all. Researchers estimate that half of those with celiac disease are currently undiagnosed or misdiagnosed.

The only existing treatment is a strict, lifelong gluten-free diet. Managing the diet can be isolating and overwhelming, and in about 30% of patients, the diet is not enough—that’s why Beyond Celiac supports research for additional treatments and a cure.

Until the day when we have additional treatments, we’re dedicated to supporting patients not just at diagnosis, but throughout their whole life; a lifelong condition requires lifelong support.

Real Patients, Real Stories

Hayden was diagnosed with refractory celiac disease, a rare form of celiac disease where the body doesn’t respond to the gluten-free diet. With the help of an extremely strict diet of raw foods and immunosuppressants, Hayden entered remission, but remains closely monitored to this day. For people with celiac disease, there’s no such thing as a cheat day—patients must be vigilant about what they consume each and every day.

When asked what it was like to interview others with celiac disease, Hayden said, “empowering and comforting […] I realized I am not alone, and was able to tell them that all the things they thought only they were experiencing, actually many, many people with celiac disease are going through that same struggle.”

You are not alone. If you want to read other stories from people with celiac disease or share your own, check out our Voices of Celiac campaign.

Think you may have celiac disease?

Symptoms Checklist