Introduction

Patients with Hypermobile Ehlers Danlos Syndrome (hEDS) have a high prevalence of Disorders of Gut-Brain Interaction (DGBI) and pose complex nutritional challenges in gastroenterology clinic. Despite this, little is known about their dietary patterns and whether this is associated with relevant clinical characteristics.

Aims & Methods

Our aim was to identify dietary patterns in hEDS, phenotype patients according to their dietary patterns and determine whether these patterns are associated with gastrointestinal or other factors. We conducted a cross sectional survey of patients with hEDS from two tertiary neurogastroenterology clinics as well as the Ehlers-Danlos Support UK. Patients completed the validated semi-quantitative Scottish Collaboration Group Food Frequency Questionnaire (FFQ) alongside questionnaires characterising: demographics, DGBIs (Rome IV), past history of Postural orthostatic Tachycardia Syndrome (PoTS) or Mast Cell Activation Syndrome (MCAS), somatic and autonomic symptoms, anxiety and depression, gastrointestinal specific anxiety, Restrictive Food Intake Disorder (ARFID) screen, artificial nutrition use, nutritional supplement use and previous dietetic consultation. The 169 food items on the FFQ were consolidated into 49 food groups and principal components analysis (PCA) was used to derive dietary patterns. Cluster analysis was then used to classify patients into dietary groups. Clinical characteristics were compared between clusters using the Chi-square test, analysis of variance (ANOVA) and Kruskal-Wallis test as appropriate.

Results

470 patients were included in the final analysis, of which four clusters were identified: cluster 1 (n=169) - low energy intake; cluster 2 (n=62) - vegetarian / health conscious; cluster 3 (n=133) - prudent / low residue and cluster 4 (n=106) - refined / highly processed food. Patients in the low energy intake group (cluster 1) were most likely to attend the tertiary neurogastroenterology clinic (p=0.002), have a dietetic consultation (p=0.02) and report previous or current use of artificial nutrition (p=0.03) compared to the other clusters. Patients in the vegetarian / health conscious group (cluster 2) had the lowest depression scores (p=0.03), lowest GI specific anxiety (p=0.005) and interestingly, were most likely to take nutritional supplements (p=0.04). Patients in the prudent / low residue group (cluster 3) and the refined / highly processed food group (cluster 4) had the highest body mass index (p=0.003). Patients in the refined / highly processed food group (cluster 4) were youngest (p<0.001), had higher scores for depression (p=0.03), higher scores for GI specific anxiety (p=0.005) and higher scores for ARFID (p=0.007). They were also least likely to take nutritional supplements (p=0.04) and least likely to attend the tertiary neurogastroenterology clinic (p=0.002). Interestingly, there was no significant association between dietary patterns and PoTS, MCAS or DGBIs.

Conclusion

This is the first study to identify dietary patterns in patients with hEDS. The most common dietary cluster was lower energy intake and this was most likely to be seen in those attending tertiary clinics and utilising artificial nutrition. Whereas those who are on a refined / highly processed food diet tend to be younger and have more psychopathology. Further research is needed to establish how these associations could best be utilised in clinical practice.

Disclosure

RT, AF and QA have received a grant from EDS-UK to conduct this study. AF undergoes consulting work for Abbvie.
KW has received research funding from Almond Board of California, Danone, International Nut & Dried Fruit Council, and has a patent for volatile organic compounds in the detection and management of IBS.
QA undergoes consulting work for Takeda Pharmacueticals, and Classado Biosciences Ltd.