Nutrient intake, dietary patterns and relationship to symptoms and comorbidities in hypermobile Ehlers-Danlos syndrome.

BACKGROUND AND AIMS: Hypermobile Ehlers Danlos Syndrome (hEDS) patients have a high prevalence of Disorders of Gut-Brain Interaction (DGBI) and can pose complex nutritional challenges, yet little is known about their dietary intake, adequacy or dietary patterns and how this relates to clinical presentation. We aimed to assess this.

METHODS

In a cross-sectional study, patients with hEDS completed a food frequency questionnaire and questionnaires characterizing: DGBI, gastrointestinal (GI) symptoms, Avoidant Restrictive Food Intake Disorder (ARFID), and use of nutrition support. Principal component analysis and cluster analysis classified patients into dietary patterns.

RESULTS

425 participants were included (mean: 41 years, 96 % female); 46.4 % were overweight/obese. Patients consumed high protein (77.2 g ± 37.8), high fat (79.1 g ± 36.9) diets that were low in calories, Vitamin B and D; only 24.7 % achieved fibre requirements. Four dietary patterns existed: (1) 'low food intake' (n = 149), with highest nutrient inadequacy, highest ARFID scores (p < 0.001), most likely to use nutrition support (24 %, p = 0.02); (2) 'vegetarian/health conscious' (n = 120), with highest fibre intake (p < 0.001); (3) 'low residue' (n = 35), mostly seen in tertiary clinics (46 %, p < 0.001) and (4) 'refined/highly processed', with highest BMI (27.3 kg/m2 p < 0.001) and presence of dyspepsia (p = 0.007) and least likely to have a dietetic consultation (p = 0.02).

CONCLUSION

This is the first study to measure nutrition intake, adequacy and dietary patterns in hEDS. Patients with either restrictive or highly processed food intake have more GI symptoms. Further research is needed to establish how these dietary patterns can best be managed in clinical practice, to optimize intake and minimize the use of artificial nutrition support.