Philadelphia, PA, March 31, 2021 (GLOBE NEWSWIRE) -- Beyond Celiac, the leading catalyst for a celiac disease cure in the United States, announced today eye-opening data from its Go Beyond Celiac Gluten Exposure Survey. The survey of 1,500 celiac disease patients highlights a number of neurological and psychological symptoms reported after exposure to gluten, adding to the call that patients experience more than just gastrointestinal (GI) troubles. Brain fog (86.0%) and fatigue (90.8%) are the two most commonly reported non-GI symptoms.
“The patient voice is begging to be heard in celiac disease,” said Kate Avery, MPH, Director of Research and Patient Engagement of Beyond Celiac. “Despite there being over 300 symptoms of celiac disease, many doctors still only focus on GI manifestations such as abdominal pain, bloating and diarrhea when diagnosing and treating a patient. It’s often the same in research, with GI symptoms getting far more attention. New data is constantly showing that doctors and researchers should be paying attention to what their celiac disease patients are actually experiencing versus what they expect them to experience.”
A research database created by Beyond Celiac, Go Beyond Celiac collects patient-reported data about people’s experiences before, during and after their diagnosis. In the Gluten Exposure Survey, Beyond Celiac aimed to learn what symptoms they actually experience after ingesting gluten. Over 60% of survey participants reported having the top three symptoms in each category.
Top non-gastrointestinal symptoms reported with gluten exposure:
· Tired/having little energy (90.8%)
· Brain fog/difficulty concentrating (86%)
· Headaches or migraines (71.4%)
· Irritability/fussiness (70.5)
· Feeling anxious (66.1%)
· Joint pain (63.7%)
· Sadness (51.9%)
· Lack of interest in eating/food (48.9%)
· Tingling/numbness in hands/feet (47%)
· Problems with muscle coordination (26%)
· Difficulty/pain when swallowing (19.1%)
“Part of what makes celiac disease so difficult to diagnose is that many people do not have any of the ‘classic’ GI symptoms. Instead, they experience indicators such as joint pain, anxiety or debilitating rashes, and many doctors are unaware or even questioning of the non-GI manifestations of this disease,” adds Avery.
Celiac disease is a serious genetic autoimmune disorder that affects an estimated 1 in 133 Americans, more than half of whom are still undiagnosed. The disease causes damage to the small intestine, resulting in debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.
About Beyond Celiac
Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac. www.BeyondCeliac.org.
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