To determine the frequency and severity of neurological symptoms following inadvertent exposure to gluten in patients with celiac disease (CeD).

CeD is a T cell–mediated autoimmune enteropathy that affects approximately 1.5% of the population. Although gastrointestinal signs and symptoms (nausea, bloating, abdominal pain, diarrhea) are prominent, neurological manifestations do occur and are likely under-recognized. 

An online survey was taken by adult participants (≥18) registered in the Go Beyond Celiac patient registry. Questions were related to presence of symptoms and their severity after gluten exposure. Responses from participants who completed the survey were tabulated and descriptive analyses were performed. For each symptom reported after gluten exposure, participants were asked the severity of their symptoms in terms of mild, moderate, severe or very severe. The proportion that were considered of high impact were those rated as “severe” or “very severe.”

A total of 3,080 participants completed the survey, of which 90.7% (2,794) experienced symptoms following gluten exposure. The most prevalent symptoms were abdominal pain/discomfort (85.0%; high impact = 54.5%), tiredness/little energy (83.4%; high impact = 63.2%) and abdominal bloating (81.4%; high impact = 46.4%). Neurological manifestations were frequent. Brain fog/difficulty concentrating was reported by 75.5% (high impact = 40.2%), headache/migraine by 61.7% (high impact = 40.5%), tingling/numbness in hands or feet by (39.8% high impact = 28.8%), and ataxia by 22.2% (high impact = 25.5%). 

Neurological symptoms are frequent and can be severe following gluten exposure in CeD. Patients with CeD may seek care for neurological symptoms and it is important to recognize the needs of this population and gain further understanding of how the disease may present with or exacerbate other neurological conditions. Additional studies are needed to determine the duration of neurological symptoms following gluten exposure as well as any potential long-term neurological sequalae of inadvertent gluten exposure.