Ehlers-Danlos syndrome (EDS) is a group of genetic connective-tissue disorders that often present as symptoms of joint hypermobility (joints that bend in unusual ways), joint instability, stretchy fragile skin, with accompanying gastrointestinal symptoms.
There are approximately 13 sub-types of Ehlers–Danlos Syndrome, with the most common type being Hypermobile Ehlers–Danlos Syndrome (hEDS), and there is a 50% chance that hEDS will be inherited by the children of a parent with the condition [1].
It is not uncommon for people with Hypermobile Ehlers–Danlos Syndrome to also have symptoms of Mast Cell Activation Disorder (MCAD) which is a reactivity to histamine and other bioactive amines [2], previously written about here.
While many of the symptoms of Ehlers-Danlos Syndrome (EDS) are gastrointestinal (GI) and food-reactive in nature, there is no single EDS Diet, but rather general dietary principles on which specific individual recommendations can be layered related to associated nutrient deficiencies, as well as dietary interventions to help minimize GI symptoms.
Gastrointestinal (GI) Concerns in EDS
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- Abnormal connective tissue structure, growth, maintenance, or function in EDS may make the GI tract structurally abnormal, sluggish, painful, inflamed, and/or “leaky”.
(i) Functional Gastrointestinal Disorders (e.g., Irritable Bowel Syndrome, chronic constipation)
Dietary approaches to functional GI symptoms are similar to those utilized in Irritable Bowel Syndrome (IBS) and these can be addressed using the following approaches:
(a) use of a Time Food Time Symptom Journal to determine which foods or food components trigger adverse symptoms
(b) trialing a low FODMAP diet introduced in three progressive stages
(ii) Dysmotility (e.g., esophageal dysmotility, gastroparesis, slow colonic transit)
This requires medical diagnosis and treatment first, with dietary support.
2. Autonomic nervous system abnormalities (dysautonomia) common in EDS may cause additional GI symptoms or complications (i.e. fight or flight versus rest and digest).
Functional Dyspepsia affects the upper gastrointestinal tract (stomach), and symptoms include nausea, feeling bloated and stomach pain. It is sometimes referred to as having a “nervous stomach.”
Some people think that Functional Dyspepsia is caused by food sitting too long in the stomach, or food not moving properly through the upper gastrointestinal tract – both of which may be related to the function of the vagus nerve.
Understanding the role of the Vagus Nerve in Functional Dyspepsia and learning some simple techniques to calm the vagus nerve can be helpful to those with GI symptoms related to dysautonomia.
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- Dysbiosis and dysregulation of gut-related immune function common in EDS may cause further inflammation, food intolerances, true food allergies (IgE mediated), local or systemic autoimmune conditions, as well as GI or systemic issues.
Dietary support may include
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- IgE-mediated food allergy including avoiding cross-reactants (e.g., latex cross-reactivity manifesting as intolerance to avocado, banana…)
- other types of antigen-induced immune reactions (e.g. Food Protein-Induced Enterocolitis Syndrome, FPIES) – a delayed, non-IgE mediated food sensitivity to cow’s milk, soy, rice, oats
- auto-immune targeting of the body’s own tissue (celiac disease, Hashimoto’s)
- dietary support for cell-mediated reactions (e.g. Mast Cell Activation Disorder, MCAD)
- determining whether there is food intolerance using a Time Food Time Symptom Journal so that foods that trigger symptoms can be avoided or reduced (e.g. nightshade intolerance)
Eating a less inflammatory diet, avoiding gluten-based foods, artificial sugar substitutes, processed foods, and foods high in simple carbohydrates, and non-cultured dairy can be helpful – while learning to eat a nutritionally adequate diet without these foods. In some people, avoiding corn and eggs can also be helpful.
If Mast Cell Activation Disorder (MCAD) is also diagnosed, then along with over-the-counter H1 and H2 antihistamines, and mast cell stabilizing prescription medication, learning how to reduce the amount of histamine and other bioactive amines in the diet can be very helpful in managing symptoms.
How to Encourage Normal Gut Biosis
A diet rich in prebiotics such as Jerusalem artichoke, dandelion greens, garlic, leeks, onion, and asparagus, as well as probiotics such as fermented dairy and vegetables including kefir, yogurt, kimchi, sauerkraut, and salt-cured pickles, can support encouraging a normal gut microbiome.
Eating a diet rich in leafy greens and other non-starchy vegetables, as well as specific types of fruit can provide ample amounts of antioxidants and soluble fiber to support a healthy microbiome.
Vitamin and Mineral Deficiency Common in Ehlers-Danlos Syndrome
There are several micronutrient deficiencies (i.e. vitamins and minerals) that are often present in people with Ehlers-Danlos Syndrome, including vitamin B6 and B12, magnesium, vitamin D, and vitamin C.
Sometimes, nutrient deficiency is present for some other reason other than Ehlers-Danlos Syndrome, such as due to one of the MTHFR polymorphisms, in which case supplementation with the bioavailable form of folate or vitamin B12, is required.
Since deficiencies in these nutrients can make the symptoms of EDS worse, it is important to have lab tests to assess levels of these nutrients in the body, so that appropriate supplementation can occur – and to understand that in some nutrients such as magnesium, routine lab tests may be inadequate to be able to assess low nutrient status.
Whenever possible, it is best to get these vitamins and minerals from food, rather than supplements but that said, some supplements are used in specific situations, such as quercetin in Mast Cell Activation Disorder, or methylated B-vitamins when someone has one of the MTHFR polymorphisms.
Having a Meal Plan designed to support your specific diagnoses (i.e. Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Disorder (MCAD), and POTS) is important.
Specific Dietary Recommendations
While there is no specific diet for Ehlers-Danlos Syndrome, following the general recommendations below can be a helpful place to start:
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- Avoid refined carbohydrates
- Limit daily intake of fructose to less than 25g/day, and limit natural sugar substitutes (e.g. stevia, agave)
- Eliminate sugar substitutes: sugar alcohols (e.g., xylitol, sorbitol), natural sugar substitutes (e.g. stevia, agave), artificial sweeteners (e.g., aspartame)
- Eliminate artificial colors/flavors, preservatives, stabilizers, and emulsifiers (gums)
- Eliminate or minimize casein (especially A-1 beta-casein), gluten, and corn (which contains the storage protein zein)
- Limit cured meat
- Limit alcohol consumption
More Info?
If you have been diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS) and/or Mast Cell Activation Disorder (MCAD), I can help by providing you with nutrition education and dietary support to help minimize symptoms.
Please visit the landing page to learn about the therapeutic dietary services that I offer.
To your good health!
Joy
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References
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- Hakim A. Hypermobile Ehlers-Danlos Syndrome. 2004 Oct 22 [Updated 2024 Feb 22]. In: Adam MP, Feldman J, Mirzaa GM, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2025.
- Hakim AJ, Tinkle BT, Francomano CA. Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated co-morbidities: Reports from EDS ECHO. Am J Med Genet C Semin Med Genet. 2021;187:413-5.
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Dr. Heidi Collins MD, Nutritional Approaches to Treating GI Concerns in Persons with Ehlers-Danlos Syndrome, The Ehlers-Danlos Syndrome Society, 2020 Virtual Summer Conference
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