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The Role of Nutrition in the Management of Ehlers Danlos Syndrome

Updated: Jun 26

Nutrition for Ehlers Danlos Syndrome

What nutrition and supplement interventions can help improve the symptoms of Ehlers Danlos Syndrome?







Key points


  • Ehlers Danlos Syndrome (EDS) is a group of inherited connective tissue disorders, currently classified into 13 subtypes that feature abnormalities in the synthesis and metabolism of collagen.

  • EDS is a multi-system disorder that affects various bodily systems with common co-morbidities.

  • Common gastrointestinal challenges can lead to fluid and electrolyte imbalances, food intolerances, malabsorption, nutrient deficiencies, weight loss and disorders of the gut brain connection.  

  • EDS has historically been misunderstood and misdiagnosed, with typical diagnostic delays exceeding 10 years. GI manifestations were not previously included in diagnostic criteria, exacerbating this issue.

  • Management requires a multidisciplinary approach addressing physical dysfunction, gastrointestinal challenges, nutrition, the gut-brain connection, and potentially psychological support.


Ehlers Danlos Syndrome

Overview


The 13 variations of EDS which primarily affect females is caused by abnormal collagen production in the body. This multi systemic condition impacts various body systems, including musculoskeletal, cardiovascular, gastrointestinal, ocular, and the autonomic nervous systems. Patients often experience hypermobility, joint instability, chronic pain, and can have significant gastrointestinal (GI) issues.


Historically, the complex nature of EDS has led to misunderstanding, misdiagnosis, and dismissal within the medical community, with diagnoses often taking over a decade. This has been worsened by the previous exclusion of GI symptoms from diagnostic criteria for hypermobility type EDS (hEDS).


Approximately 90% of hEDS patients suffer from GI challenges like reflux, gastroparesis, and irritable bowel syndrome (IBS). These issues can lead to nutrient malabsorption, deficiencies (e.g., in magnesium, vitamin D, B vitamins), weight loss, and disordered eating patterns, including Avoidant/Restrictive Food Intake Disorder (ARFID). In severe cases, nasal or intravenous feeding may be necessary. These GI symptoms are often linked to connective tissue laxity and autonomic nervous system dysfunction, the latter which impairs "rest and digest" activity.


Effective EDS management requires a multidisciplinary approach focusing on symptom relief, optimal nutrient intake, psychological support for food related anxiety or ARFID, and nervous system regulation to mitigate dysautonomia's impact on GI function. Nutritional interventions include personalised dietary changes, specific supplementation, and ruling out other conditions like celiac disease. Tools like "The Spider" can help assess a patient's multi-systemic symptoms, guiding individualised treatment plans.


The Spider Tool Graph for Ehlers Danlos Syndrome
Two examples of completed Spider Tool graphs


In Depth


EDS is a group of genetic connective tissue disorders, currently classified into 13 subtypes that affect multiple systems in the body and is more predominant in females. The condition features an abnormality in the production and structure of collagen in the body resulting in connective tissue laxity (1-3).


EDS impacts the musculoskeletal, cardiovascular, gastrointestinal, ocular, urogynaecological and autonomic nervous systems (4,5). The condition is associated with hypermobility, joint instability, dislocations, susceptibility to injury/arthritis, skin issues such as easy bruising, bleeding and varicose veins, poor skin and connective tissue healing, vascular problems, cardiac mitral valve prolapse (in classical EDS), myopathy, muscle pain, spinal issues such as osteoporosis, a susceptibility to periodontitis and significant gastrointestinal issues (6). This can lead to poor sleep quality, fatigue, and comorbidities such as Postural Orthostatic Tachycardia Syndrome (POTS), dysautonomia, chronic fatigue syndrome, chronic pain, fibromyalgia, anxiety, mast cell activation syndrome (MCAS) and small intestinal bacterial overgrowth (SIBO) (6,7-9)


Due to the multi-system complexity, historically people with EDS have been misunderstood, misdiagnosed and dismissed within the medical system with diagnosis typically taking >9 years (4,10). This was previously exacerbated by gastro intestinal manifestations not being included in clinical criteria for hypermobility conditions and hypermobility type EDS (hEDS). 

Studies indicate that around 90% of patients with hEDS experience gastrointestinal challenges that can include reflux, slow gastric emptying, low motility, dysphagia (trouble swallowing), gastroparesis, constipation, IBS and functional dyspepsia, which is characterised as pain or discomfort in the upper abdomen, bloating, belching, nausea, and an unusual feeling of fullness after meals (4,6,7,11).


These challenges can impact fluid and electrolyte balance and nutrient intake that over time can result in malabsorption, allergies and intolerances, food avoidance, nutrient deficiencies, weight loss and disordered eating patterns including Avoidant/Restrictive Food Intake Disorder (ARFID) (4,7,11-15). Deficiencies in essential nutrients such as magnesium, vitamin D, and B vitamins, which are crucial for connective tissue health and pain management may play a role in symptom relief (7,14,16,17). In extreme cases severe gastro symptoms may require nasal or IV feeding (18). These symptoms have often been linked to connective tissue laxity and autonomic dysfunction, which affect the structural and functional integrity of the gastrointestinal tract and the autonomic nervous system’s rest and digest activity (6,14).


The general population often do not have an adequate intake of some essential nutrients, because of a reliance on highly processed foods and the reduction in the vitamins and minerals contained in commercially grown fruits and vegetables (2,19). This can be worsened in individuals with EDS due to malabsorption issues, other GI dysfunction, anxiety and stress. In addition, studies have indicated that GI complications can result in reduced protein intake long term within the EDS population which can have lasting effects on bone health, physical function, and disability (12,20).


Interpreting the effectiveness of interventions in the research is challenging due to the fact that some studies only look at some forms of EDS and not others (7,14). hEDS seems to be the most commonly studied (7) however for the purposes of this article we will look at the impact of nutrition in the management of the symptoms and presentations of EDS in general, with a particular focus on GI issues.


Dietary intake can affect quality of life, however quality of life can also affect dietary intake. Studies have shown that EDS symptoms and co-morbidities can significantly affect a patient's quality of life compared to healthy adults (7,12,14,21,22). 


Treatment for EDS is complicated by the range of symptoms and complexity of co-morbidities and treatment options will depend on a patient's presentation. Overall EDS management should focus on a multidisciplinary approach looking at the physical dysfunction and gut brain connection.


Initially it's important for medical professionals to rule out conditions such as celiac disease, lactose intolerance, and Helicobacter Pylori infection, which are known causes of reflux and other GI symptoms (6). 


A range of symptoms can be influenced significantly by changes to dietary habits, ensuring adequate macro and micronutrient intake from food, addressing nutrient deficiencies, specific supplementation for treating symptoms and co-morbidities, providing psychological care for food anxieties (including ARFID), and supporting nervous system regulation to improve GI function disrupted by dysautonomia. (4,6,7,11,12,21,23).


Symptom tracking, diet and medical history and a diet analysis can help determine the most frequent GI symptoms and possible nutrient deficiencies to enable health professionals to determine an individualised approach for diet changes and specific nutritional support (6). 

The Spider - a multisystemic symptom impact tool, can be used to assess a patient’s neuromusculoskeletal, pain, fatigue, cardiac dysautonomia, urogenital, gastrointestinal, anxiety, and depression symptoms (24).


  1. Dietary Habits 


Various dietary habits may help reduce symptoms and help prevent or manage disorders of the gut brain connection such as ARFID, a fear of eating or low interest in meals (7). Interventions include: 


Meal strategies 

Gastrointestinal symptoms such as nausea, reflux, bloating, and belching are frequently reported in individuals with EDS, often due to delayed gastric emptying and reduced gastrointestinal motility (4,7). Incorporating some blended or mashed foods can lower the mechanical demands of digestion and improve tolerance (4). Eating small, frequent meals throughout the day may further support digestion and minimise discomfort (4). Additionally, light movement after meals, where feasible, can help stimulate motility and aid gastric emptying (4,7). 


Assessing fibre intake 

In general adequate fibre is required for a healthy microbiome, to support regular bowel habits and can help prevent inflammatory bowel disease (25,26). The NICE guidelines for IBS, however, suggest limiting insoluble fibres as these can increase IBS symptoms in some people. It's plausible that this may also occur in EDS patients with compromised digestive system function therefore an individualised approach is required to assess fiber intake along with symptom severity. Increasing soluble fibers and fluid intake may be beneficial as these bind with water, can help feed beneficial bacteria and help food move through the gut (4).


Eliminating problematic foods 

Eliminating foods that trigger sensitivities or intolerances may help reduce gastrointestinal symptoms commonly experienced by individuals with EDS (12). Dietary interventions that remove problematic foods, such as gluten, certain dairy products, high fat foods, spicy foods, chocolate, caffeine, alcohol, and carbonated beverages, have shown potential in alleviating symptoms in both IBS and reflux presentations (4,7). In patients with comorbid MCAS, who may be highly reactive to a wide range of foods, a low histamine or elimination diet may offer symptom relief. Due to the restrictive nature and complexity of these diets, however, low histamine and elimination diets should be implemented under the supervision of a qualified nutrition professional (27).


Exploring an anti-inflammatory and gut friendly diet options 

Research indicates that following a low FODMAP, NICE IBS guidelines diet, anti-inflammatory diet (such as the Mediterranean diet) or increasing anti-inflammatory foods and reducing pro-inflammatory foods are associated with reduced fatigue, chronic pain and systemic inflammation in patients with EDS, Fibromyalgia and chronic pain (4,7,28-30). 


It’s feasible that these diets also support gut health by balancing the gut microbiome potentially reducing GI symptoms (18). While the low FODMAP diet targets the reduction of specific short chain carbohydrates, such as monosaccharides (fructose), disaccharides (lactose), oligosaccharides (fructans and galactans), and polyols (sorbitol, mannitol, xylitol, and maltitol), that can trigger gastrointestinal symptoms in sensitive individuals, anti-inflammatory diets take a broader approach. They emphasise the inclusion of whole, unprocessed foods rich in anti-inflammatory compounds, such as fruits, vegetables, and whole grains, while reducing intake of refined and processed foods.


Meal habits for Ehlers Danlos Syndrome

Incorporating prebiotic and probiotic foods 

Incorporating prebiotic foods, probiotic rich foods, or targeted probiotic supplements may support gut health and help manage gastrointestinal symptoms in individuals with EDS (12). The effectiveness of probiotic supplements in treating functional gastrointestinal disorders remains variable and is influenced by several factors, including the specific strains used, their microbiological properties, the quality and formulation of the product and the person’s current microbiome status (7). While current evidence for their efficacy is limited and requires further research, some studies suggest that probiotics and prebiotics may also offer benefits beyond gut health, including potential support for joint health (7). Considering that probiotics can influence microbiome health and this can have an impact on GI symptoms, incorporating probiotic foods, such as fermented foods and natural yoghurt along with a variety of wholefoods in the diet is the safest and most cost effective way of influencing microbiome diversity. 


Ensuring adequate protein and collagen intake

Protein plays a critical role in the health of the musculoskeletal system including long term bone health and muscle mass  and limited evidence suggests that protein intake could be lower in people with EDS due to GI issues (12,20). People with EDS may require higher protein intake than the standard RDA of 0.8 g/kg/day to help maintain lean muscle mass, especially given their risk of muscle loss and potential for low energy intake. Current evidence suggests a daily intake of 1.2–1.7 g/kg of protein, distributed evenly across meals, may be more appropriate for supporting muscle health in this population (20). Collagen is responsible for maintaining the integrity of ligaments, tendons and cartilage, as well as providing the support structure for skin, blood vessels and other tissues and requires adequate protein intake for production in the body (2). 


Hydration and increased salt or electrolyte intake for the management of POTS

As a co-morbidity of EDS, POTS is a form of dysautonomia that affects how the body regulates involuntary functions like heart rate, blood pressure, and circulation (31). In the nutritional management of POTS fluid consumption, 2-3 L/day, an increase in salt 6-10 grams/day or the use of electrolytes can improve this condition (4).


Hydration and salt for EDS

Nervous system support 

The dysfunction of the autonomic nervous system, combined with the structural impacts of connective tissue laxity, may play a key role in both the onset and persistence of GI issues in people with EDS (6,7). It’s therefore feasible that supporting parasympathetic nervous system activation, rest and digest function, particularly around mealtimes, may help improve digestion and reduce GI symptoms in people with EDS, where dysautonomia may be present.


Nervous system support for EDS

  1. Supplementation 


Optimising nutrition begins with a comprehensive nutritional assessment to identify and address specific vitamin and mineral deficiencies (4). In individuals with EDS symptoms can both affect and be affected by nutritional intake and evidence indicates that targeted supplementation may alleviate various symptoms, particularly when deficiencies are present (6).


There is a hypothesis that nutrition deficiencies may play a role in illnesses that have been previously attributed solely to genetic factors. For instance, individuals with EDS experience symptoms like fatigue and joint pain, which in general could be linked to deficiencies in nutrients such as vitamin D, B12, magnesium, iron, and folate. 


Given the complexity of the condition and wide varieties of symptoms a holistic individualised approach with consideration for age, co-morbidities, the efficacy of supplementation, hypersensitivities and ongoing micronutrient monitoring, is important for helping people with EDS manage their symptoms and improve quality of life (4,7).


In this section we are looking at the role, and supplementation, of specific vitamins and minerals discussed in research to have a possible beneficial effect on symptoms. 


Supplements for EDS

Vitamin D 

Vitamin D is an essential nutrient required for bone and muscle health among other important processes in the body. Studies suggest that people with EDS often exhibit lower levels of Vitamin D (12,20). For instance, a study involving 30 women with hypermobile or classical EDS found that 60% had vitamin D deficiency below 30 ng/ml of 25-hydroxyvitamin D (25(OH)D). Another study analysing data from the UK Biobank reported that women with EDS had significantly lower serum 25(OH)D levels than controls, with an increased likelihood of deficiency (32). Low Vitamin D levels have shown to be linked with immune and inflammation markers and some EDS patients have biomarkers for inflammation (33-35). It's possible that a diet with reduced macronutrient intake due to gastro issues may also lead to micronutrient deficiencies such as Vitamin D (20).


These findings underscore the importance of Vitamin D testing, supplementation (where needed) and monitoring along with nutritional interventions to ensure adequate macronutrient intake in individuals with EDS to support their overall health (36).


Folate and other B vitamins 

Some studies indicate a significant number of patients with EDS (hypermobility type in particular) carry common polymorphisms in the methylenetetrahydrofolate reductase (MTHFR) gene which is strongly linked to folate metabolism (37). Clinical observations suggest that this can prevent the proper usage of vitamin B9, or folate. While no clinical trials have been carried out and further research is warranted, testing of blood folate levels and supplementation with 5-MTHF could be beneficial (4). 


B vitamins have been shown to be helpful in managing chronic pain, which is present in a significant number of patients with EDS (7,14,16,17). In particular neurotropic B vitamins (B1 – thiamine, B6 – pyridoxine, and B12 – cyanocobalamin) can act as modulators of inflammation and pain and improve the analgesic effect of diclofenac (38,39).


Vitamin C and Collagen 

Collagen in the body is responsible for providing the structural support to ligaments, tendons, cartilage, skin and blood vessels. Vitamin C plays a vital role in the production of collagen and therefore strengthening of ligaments, tendons, and blood vessels. It also supports wound healing, the integrity of the skin and helps prevent bruising. The synthesis of collagen also requires vitamin C along with amino acids and other cofactors (4). Supplementing with Vitamin C in general has been shown to enhance wound healing and skin health and in people with EDS and can improve the synthesis of collagen while preventing degradation (2,7). Supplementation of 1500 mg up to 3000mg of Vitamin C per day according to tolerance is suggested in some studies (2,7).


While supplementing with collagen may seem an obvious choice for people with EDS there is little data to show a direct benefit for EDS symptoms. However in general collagen has been shown to improve skin density, texture and wrinkles and may help prevent osteoarthritis and therefore may play a role for people with EDS (7,40). One case study showed improvement in functionality and pain scores for a person with EDS using collagen supplementation and proprioceptive rehabilitation, however the interventions were simultaneously administered making it hard to determine which intervention had the greatest impact (41).


Other Vitamins and Minerals 

The following is a list of possible vitamins and minerals that could benefit people with EDS, depending on dietary intake, symptoms and lifestyle factors. Some dietary supplements are suitable for preventing and treating osteoarthritis or joint issues while others may be best for the management of other complaints including pain, fatigue and skin and vascular weakness.


Skin health may be improved by supplementation with Vitamin A, Vitamin E, polyphenols, coenzyme Q10, and essential fatty acids which have been shown to reduce signs of skin ageing (7). Vitamin A acts as an antioxidant that can have a beneficial effect on skin health, however it is also not recommended during pregnancy, breastfeeding, or if you have pre-existing liver or kidney disease and a high intake of Vitamin A can be detrimental to health so caution is advised (7,36).


Table 1: Potential vitamins and minerals that may benefit people with EDS

Vitamin or mineral 

Benefit 

L-Carnitine 

Carnitine is a nutrient that can be made in the body, but may need to be supplemented in certain conditions. It plays a vital role in fat metabolism and energy production and promotes normal heart and skeletal muscle function. Deficiency can occur in situations of malnutrition. Supplementation can improve nerve conduction, neuropathic pain and immune function (2,7,42).

Glucosamine 

Glucosamine plays a role in the maintenance and repair of connective tissue and joints, where damage often results in joint pain and arthritis. Studies have shown Glucosamine to be as effective as non-steroidal anti-inflammatories in reducing joint pain in arthritis subjects (2,43).

Coenzyme Q10 (CoQ10)

CoQ10 plays a crucial role as a cofactor in the production of adenosine triphosphate (ATP), the molecule that supplies cellular energy to the body including the muscles. Studies have shown supplementation with CoQ10 can reduce muscle weakness, cramps, fatigue and pain and it has been used to counter the effects of cardiac mitral valve prolapse and reduce the development of periodontal disease which are implicated in EDS (2,6).

Nicotinamide riboside (NR)


Nicotinamide riboside (NR) is a substance that helps produce NAD+ in the body and may help enhance cellular energy metabolism (44).  NAD+ is a vital molecule in the body responsible for several metabolic reactions and cellular signalling the energy, immune, metabolic and DNA repair pathways. Improving NAD+ levels in the body is thought to contribute to the reduction in age related illness (45).

Methyl sulphonyl methane (MSM) and Silica 

MSM and Skica are required by the body for the formation of bone and collagen in connective tissues, hair, skin and nails. These supplements can help maintain the flexibility of joints and arteries, can help improve the integrity of skin and play a role in the prevention of heart disease and osteoporosis (2,40).

Omega 3 essential fatty acids 

Omega 3 and omega 6 fatty acids are considered essential fatty acids as we must obtain them through our diet. They play a role in immune function, can be anti-inflammatory and have shown to support the prevention of osteoarthritis (2,7). Historically, humans consumed these fats in a balanced ratio of about 1:1 to 2:1, however with the introduction of seed oils and other dietary changes the ratio has shifted dramatically to between 15:1 and 30:1, favoring omega 6s. This imbalance may promote inflammation and increase the risk of chronic diseases such as heart disease, diabetes, and arthritis. Omega 3 fatty acids have anti-inflammatory properties and support heart, brain, and overall health. Unless a diet is complete with enough fatty fish, walnuts, chia and flaxseed, supplementing with Omega 3 is beneficial for people with EDS due to the anti-inflammatory nature of these fatty acids (46,47).

Manganese 

Manganese has been found to be a key element in bone metabolism and integrity and supports the formation of collagen (48). While more research in the area is needed, the impact on encouraging bone building cells to grow and mature, reducing the formation of bone breaking cells, and maintaining overall bone strength, indicates that supplementing with Manganese (individually or with a good multi) may have a positive impact on bone health for people with EDS (7,49).

Magnesium (Mg)

Mg is an essential nutrient that is essential for healthy muscles, nerves, bones, teeth and blood sugar levels while promoting relaxation and reducing anxiety (2). Supplementing with Mg has been shown to be effective for chronic back pain with neuropathy (7). Mg stores in the body can be depleted by stress and US research suggests that almost half the population don’t consume enough Mg due to the ‘standard American diet (7,50) .

Melatonin 

Melatonin supplementation may help improve sleep in individuals with EDS and co-morbidity Chronic Fatigue Syndrome, by helping regulate circadian rhythms and promoting restorative sleep (7).

Palmitoylethanolamide  (PEA)

PEA is an endogenous fatty acid amide that works through modulating mast cells and has been demonstrated to have an anti-inflammatory effect on neuropathic pain conditions, which can be common in EDS (7,51).

Pycnogenol (PYC)

PYC (from pine bark extract) is a compound made from a mixture of a plant flavonoid that has a powerful antioxidant capacity and promotes the availability of vitamin C within the body while inhibiting the degradation of collagen. In vito studies have shown the potential for PYC to support circulation, inflammation, the immune response and skin health in chronic inflammatory conditions (2,52).


Conclusion


In summary, while direct research on nutrition's role in EDS is still evolving, existing studies suggest that tailored dietary strategies can play a crucial role in managing GI symptoms, reducing inflammation, and improving overall well-being in individuals with EDS. Approaches can also be gained from looking at the management of symptoms in other conditions such as GI issues and chronic pain. 


Overall EDS management is multifaceted and includes alleviating physical symptoms, optimising nutrient intake, providing psychological care for food anxieties (including ARFID), and supporting nervous system regulation to improve GI function often disrupted by dysautonomia's effect on stress responses. A multidisciplinary approach with healthcare professionals, including dietitians, gastroenterologists, and psychologists, can lead to personalised care plans that fully address the complex needs of EDS patients. ​


A full dietary assessment and history is important to enable a practitioner to address any nutrient deficiencies and help manage symptoms. Supplementation may be required in the case of deficiencies or for the management of certain symptoms. 


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