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Patient shares experience with celiac disease: It’s a serious autoimmune condition, but “not the end of the world”

In a video, Stanford Children's Health's Healthier, Happier Lives Blog introduces a patient with celiac disease and discusses the symptoms, diagnosis and treatment of the autoimmune disorder.

Though an increasing number of people have heard about celiac disease, an inherited autoimmune disorder, a lot of confusion still surrounds how the disease is defined, diagnosed and treated. To help clear up some of the misinformation, Lucile Packard Children's Hospital Stanford's Healthier, Happier Lives Blog offered a recent overview and produced a video featuring a teen who lives with the condition.

For people with celiac disease, eating gluten protein found in wheat, rye, barley and triticale (a wheat/rye hybrid) causes the immune system to attack the small intestine. This immune response damages the tiny fingerlike villi that project into the small intestine to help the body absorb nutrients.

That's why poor nutrition, weak bones and issues with digestion are often the first hints of celiac disease for many people, including 18-year-old Isabella Gravano, as the blog post and video explain.

In Gravano's case, a puzzling leg fracture paired with stomach pain pointed to the disease, which is often diagnosed by a combination of blood tests to check for high antibody levels, genetic testing and/or a biopsy of the patient's small intestine.

“Learning you have celiac disease requires a huge mindset change, not just for the patient but also for everyone around him or her, including parents, teachers and friends,” Nasha Khavari, MD, says in the blog post.

The Celiac Disease Program at Packard Children's helps patients like Gravano navigate this shift in diet and thinking by treating the person as a whole with a team of physicians, nurse practitioners, social workers and nutritionists.

“While celiac disease is a serious autoimmune disease, it’s also not the end of the world," Gravano says in the video. "It’s important to communicate, listen to your body and live a normal life. By addressing this disease head on, you’ll be a healthier person in so many ways.”

Video courtesy of Lucile Packard Children's Hospital Stanford
Photo by suraj

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