Comprehensive Assessment of Nutrition and Dietary Intervention in Hypermobile Ehlers Danlos Syndrome

Comprehensive Assessment of Nutrition & Dietary Intervention in Hypermobile Ehlers Danlos Syndrome (hEDS/HSD): a Personalised Approach: Phase 2 & 3

This study involves a comprehensive nutritional assessment of hEDS participants who have functional gastrointestinal disorders and dietary intervention to broaden their food choices and nutritional intake.

The impact of diet on symptoms in patients with Hypermobile Ehlers Danlos Syndrome (hEDS/HSD) is widely recognised yet poorly understood. The investigators aim is to assess existing dietary patterns and nutritional status in hEDS/HSD as well as pilot a personalised dietary strategy to optimise nutrition. Participants recruited from EDS UK and a tertiary Neurogastroenterology clinic at the Royal London Hospital will undergo comprehensive nutritional assessment and blood tests. The investigators will then undertake a feasibility study of personalised dietary intervention in select cohort of patients.

Inclusion Criteria:

• Have completed Phase I of the CANDI-hEDS study
• Diagnosis of hEDS / HSD according to physical examination and history taking
• Diagnosis of Functional Dyspepsia and / or Irritable Bowel Syndrome according to Rome IV criteria
• Able and willing to give informed consent
• Access to video conferencing and a smart phone device
• Able to travel to the Wingate Institute

Exclusion Criteria:

• Dependent upon artificial feeding (parenteral and enteral)
• Structural gastrointestinal disease
• Any chronic health condition which already requires a restricted diet e.g. diabetes mellitus
• Functional vomiting disorder with associated weight loss
• Multiple Type I hypersensitivity reactions to food groups (i.e. anaphylaxis, urticaria, respiratory symptoms or positive RAST tests).
• Previous or current severe mental health disorder (e.g. severe depression with suicidal ideation)
• Previous or current eating disorder
• Positive screen for avoidant restrictive food intake disorder (ARFID)