Comprehensive Assessment of Nutrition and Dietary Influences in Hypermobile Ehlers Danlos Syndrome (CANDI-hEDS) - a cross sectional study.

INTRODUCTION: Disorders of Gut-Brain Interaction (DGBI) are common in patients with hypermobile Ehlers Danlos Syndrome/Hypermobility Spectrum Disorder (hEDS/HSD). Food is a known trigger for DGBI symptoms which often leads to dietary alterations and increasingly, nutrition support. We aimed to explore dietary behaviours and influencing factors in hEDS/HSD patients.

METHODS: In a cross-sectional study, patients with hEDS/HSD were recruited from Ehlers-Danlos Support UK (non-tertiary) and tertiary neurogastroenterology clinics to complete questionnaires characterising: dietary behaviours, nutrition support, DGBI (Rome IV), GI symptoms, anxiety, depression, Avoidant Restrictive Food Intake Disorder (ARFID), Mast Cell Activation Syndrome (MCAS), Postural tachycardia Syndrome (PoTS) and quality of life. We used stepwise logistic regression to ascertain which factors were associated with dietary behaviours and nutrition support.

RESULTS: Of 680 participants (95% female, median 39 years), 62.1% altered their diet in the last year and 62.3% regularly skipped meals. Altered diet was associated with: reflux symptoms (p<0.001), functional dyspepsia (p=0.008), reported MCAS (p<0.001) and a positive screen for ARFID, specifically fear of eating and low interest (p<0.001). 31.7% of those who altered their diet required nutrition support. The strongest predictor of requiring nutrition support was a positive screen for ARFID, specifically fear of eating (OR: 4.97, 95% CI: 2.09-11.8, p<0.001).

CONCLUSION: Altered diet is very common in the hEDS/HSD patients we studied and influenced by functional dyspepsia, reflux symptoms and ARFID. Those with ARFID have a four-fold increased risk of requiring nutrition support and therefore, it is paramount that psychological support is offered in parallel with dietary support in the management of DGBI in hEDS/HSD.