Factors Affecting Gluten-Free Dietary Adherence in Patients with Neurological Gluten-Related Disease

Background/Objectives: The gluten-free diet (GFD) is the primary treatment for patients with neurological gluten-related disease, which may occur with or without coeliac disease (CD). Dietary adherence is arguably most important in such patients, as ongoing gluten exposures have been shown to exacerbate irreversible neurological deterioration. We utilised a cross-sectional postal questionnaire to explore factors affecting dietary adherence in a large sample of such patients, highlighting potential areas of dietetic need. Methods: Patients returned a postal questionnaire (N = 225), which assessed self-reported GFD adherence by the Biagi scale and a visual analogue scale. CD status was ascertained, alongside symptomatology and mood (via the Hospital Anxiety and Depression Scale). Dietary knowledge was tested by a “quiz” where respondents identified which of 10 foodstuffs should be avoided on a GFD. Results: Self-reported adherence was high across the cohort, but was significantly higher in those with CD than those without. Patients with CD more often reported a number of gastrointestinal symptoms as acute reactions if they were to eat gluten. Similarly, the CD subgroup reported greater overall acute discomfort following gluten, while across the cohort greater such discomfort correlated with greater dietary adherence. Overall, 6.2% of the participants both reported strict diets (scoring ≥ 90 on the visual analogue scale) but via the quiz indicated an erroneous belief that they could eat a gluten-containing foodstuff. Lower adherence was correlated with higher depressive scores, with post hoc analyses finding that this was driven by patients without CD. Conclusions: This study highlights a need for increased dietary support in patients with neurological gluten sensitivity, particularly when there is no co-diagnosis of CD. Therapies targeting depression may additionally bolster dietary adherence.