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Writer's pictureKirstin Maltby

Nutrition Review for Hypermobile EDS and Dysautonomia Patients

A review in 2021 by Toan Do, et al investigated the nutritional needs of the two overlapping conditions Dysautonomia and Hypermobility Spectrum Disorders/hypermobile Ehlers-Danlos (HSD/hEDS) to help reduce symptoms. There is increasing recognition that there is a high level of gastrointestinal symptoms among this group of patients.


Studies of patients with HSD/hEDS have shown upwards of 86% of patients reporting some type of gastrointestinal (GI) symptoms. These GI symptoms/problems ranged from

  • constipation/diarrhea

  • abdominal pain/discomfort

  • gastroesophageal reflux

  • dyspepsia

  • dysphasia

  • bloating

  • vomiting

  • small intestinal bacterial overgrowth (SIBO)

Dysautonomia impacts the autonomic system which is our "fight and flight" vs "rest and digest" response. This inability of a body with dysautonomia to "rest and digest" can often lead to and/or exacerbate underlying GI issues. Dysregulation of gut-related function has also been linked to food allergies and inflammation in HSD/hEDS.


There is limited information on nutritional management in patients with HSD/hEDS, but there is more interest in addressing this deficiency in research and nutrition. Individualised modified diets and nutritional supplements have been suggested to help reduce symptoms. These need to be carefully monitored however with specialists who understand HSD/EDS, Dysautonomia and Nutrition,


THIS IS A REVIEW OF A RESEARCH PAPER IT IS NOT A RECOMMENDATION - PLEASE DISCUSS NUTRITION WITH YOUR DOCTOR AND/OR NUTRITIONIST BEFORE MAKING MAJOR CHANGES IN DIET. NUTRITION NEEDS TO BE INDIVIDUALISED.


Some recommendations that have been made so far over the research include

GI Symptoms

Diarrhoea/flatulence/bloating

  • FODMAP diet

  • Gluten-free diet

  • Soluble Fiber

  • Probiotic (lactobacillus GG, Bifidobacterium Lactis)

  • SIBO Treatment

Constipation

  • Fiber Supplement

  • SIBO treatment

  • Probiotic-rich food

  • Probiotics

Optimisation of gut microbiome can help with malabsorption issues with nutrition and gut inflammation, Good bacteria help the absorption of fat-soluble vitamins such as vitamins A, D, E and K. Food and/or supplements with probiotics can help with these good bacteria and supplements with antioxidants and fiber can help support their growth.


Certain foods are also suggested to be avoided (always talk to a doctor before removing an entire food group) disruption of the good bacteria in the microbiome of the gut. Refined carbohydrates, artificial sweeteners and processed food can promote harmful gut organisms and lead to inflammation in the gut and breakdown in the intestinal barrier "leaky gut". These can result in symptoms such as bloating, cramps, gas, headaches and even allergy-like symptoms.


On top of food, fluid intake is important, especially with patients who have Dysautonomia. Increased water/fluid intake to around 2-2.5l/day with salt ingestion >8g has been recommended (PLEASE CHECK WITH YOUR DOCTOR). Adequate water for your body can help reduce blood pressure fluctuations and heart rate. Spreading meals out to 6 smaller meals throughout the day compared to 3 big meals also helped put less stress on the body leading to less dizziness and lightheadedness.


Some supplement suggestions for both HSD/hEDS and/or Dysautonomia patients who have micronutrient deficiencies and reviews of the research have suggested the following supplements for those with deficiencies (check you have a deficiency/suboptimal levels before supplementing).

  • 5000U Vit D3 (wound) healing)

  • 750-1000mg/Day Vitamin C (wound healing)

  • 1500mg/day methylsulfonylmethane (MSM)

  • 3mg/day Silica

  • Vitamin b12 (reduce orthostatic response)

  • Vitamin B1 (energy metabolism)

  • 1500mg/day Glucosamine for Joint Pain as glucosamine is necessary to maintain, support, and repair connective tissue and joints.

  • 150mg/day Carnitine and 100mg/CoQ10 for muscle weakness and fibromyalgia.

Reference:

Do, T et al (2021). Nutritional Implications of Patients with Dysautonomia and Hypermobility Syndromes. Current Nutrition Reports. 10(4) 324-333

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This is not a medical site and all information should not be considered as medical advice. Great care is taken to curate this information but has not been checked by a medical professional. 

Updated July 2024

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