October 2022

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Letter from Alice: Our Brains Deserve Better

Celiac disease affects so much of our daily lives. Take Ava, for example, who was just a child when she was diagnosed with this serious autoimmune disease. Even on the gluten-free diet, she still felt sick, and frequently missed school because of it. “All of my symptoms were internal and invisible, so it was difficult for people to understand why I was more absent than I had been before my diagnosis.” When she was at school, she couldn’t “participate in fun events like bake sales and surprise pizza days.”

Why do we keep feeling ill even after diagnosed? Unfortunately, 73% of our community report experiencing gluten exposure every year—36% as often as 1-5 times a month. While 84% reported gastrointestinal symptoms, 56% reported neurological symptoms, and 40% psychological. As our Chief Science and Strategy Officer Salvo Alesci, MD recently said, “neuropsychological impairment in people with celiac disease can be as or more debilitating than their gastrointestinal symptoms, and it has been overlooked for too long.”

We should not have to live our lives feeling sick day in and day out. We should be able to eat without fear. This is why we are funding a study to investigate the long-term effects of celiac disease and gluten sensitivity on brain function, depression and anxiety, and quality of life. With the help of brain scans, a research team in the United Kingdom previously found that gluten adversely affects brain function and mental health in those with celiac disease and gluten sensitivity. Now we want to know how to stop these effects.

Led by the same research team, this project will investigate how effectively the gluten-free diet treats these problems, as well as more precisely scrutinize how gluten affects the brain. We are confident that this life-changing work will raise awareness among physicians of non-GI symptoms of celiac disease and help advance urgently needed therapies for these non-GI issues.

You can help kids like Ava by giving today to fund this important research into the long-term effects of celiac disease and gluten sensitivity on brain function, depression, and quality of life.

Together for a cure,
—Alice Bast

Research News

Norwegian screening finds three-quarters of those with celiac disease undiagnosed
A wide-spread screening study estimates that nearly 1.5 percent of the residents of one Norwegian county have celiac disease, and before the screening, 75 percent didn’t realize it.

73% of celiac disease patients still exposed to gluten every year

A recent survey of the celiac disease community by Beyond Celiac reveals the ongoing challenges those with the disease are facing, including the shocking statistic that nearly 73% still have exposure to gluten each year, resulting in symptoms.