Trends in non-coeliac gluten/wheat sensitivity: a self-managed problem?

Introduction: Self-reported non-coeliac gluten/wheat sensitivity (NCGWS) is triggered by gluten/ wheat ingestion in patients without coeliac disease (CD) or wheat allergy. Following the COVID-19 pandemic, diagnoses of NCGWS appear to have declined. A gluten/wheat-free diet (GFD) remains the only management approach, though long-term adherence and outcomes are unclear. This study aimed to evaluate market trends and the long-term GFD adherence in NCGWS. Secondary objectives included evaluating perceived GFD efficacy and the need for further healthcare advice. Methods:: We analyzed UK market data on gluten-free (GF) product sales through September 2024 and shopper insights through July 2021. Additionally, patients with self-reported NCGWS diagnosed between 2006 and 2018 at a tertiary center completed a follow-up questionnaire about their dietary habits and further need of medical advice. GFD adherence was assessed using the Biagi score and compared with a matched cohort of CD patients. Results: Market analysis showed a continued rise in GF product sales, from £214 m in 2014 to £607 m in 2024. NCGWS patients represented 9.7% of buyers. Of 186 patients, 111 completed the questionnaire. Compared to CD patients, those with NCGWS had significantly lower GFD adherence (Biagi score 0–1: NCGWS 73.9% vs. CD 8.1%; score 3–4: NCGWS 24.3% vs. CD 90.1%; p < 0.05). After discharge, 36% (n = 40) sought further medical advice, with no significant link between GFD adherence and need for intervention. Conclusions: Although previous data suggests a drop in referrals to secondary care, up to 9.7% of our people are eating GF to treat self-reported NCGWS. The long-term GFD adherence is poor.