Nutrition and Ehlers-Danlos Syndrome: What is deficient in Ehlers-Danlos syndrome?

October 12, 2025 •

5 min read

While the Ehlers-Danlos syndromes (EDS) are primarily genetic disorders affecting connective tissue, many individuals experience secondary nutritional deficiencies that can exacerbate their symptoms. Understanding what is deficient in Ehlers-Danlos syndrome is a crucial part of a comprehensive management strategy, focusing on both the genetic and symptomatic aspects of the condition.

Quick Summary

Ehlers-Danlos syndrome is linked to deficiencies in vitamins D, B12, and C, as well as minerals like iron and magnesium. These issues are often complicated by gastrointestinal problems and malabsorption, requiring a personalized dietary approach for optimal management.

Key Points

Genetic vs. Nutritional: Ehlers-Danlos syndrome (EDS) is a genetic disorder affecting connective tissue, not a simple dietary lack of collagen.
Common Deficiencies: Individuals with EDS frequently experience secondary deficiencies in vitamin D, B12, C, iron, and magnesium.
GI Malabsorption: Gastrointestinal issues like gastroparesis, reflux, and constipation often lead to malabsorption and worsen nutritional status.
POTS and MCAS Impact: Co-occurring conditions like POTS (requiring extra salt and fluids) and MCAS (sometimes requiring a low-histamine diet) necessitate specific dietary considerations.
Personalized Approach: There is no one standard 'EDS diet.' A personalized nutritional plan developed with a healthcare professional is the best strategy for managing symptoms.
Supplementation: Targeted supplementation, based on blood test results, is often necessary to correct deficiencies and support overall health.
Nutrient-Dense Foods: A diet rich in whole, unprocessed foods, lean protein, and adequate hydration supports overall wellness in EDS.

The Ehlers-Danlos syndromes (EDS) are a complex group of inherited connective tissue disorders caused by genetic mutations that primarily affect collagen synthesis, structure, or other extracellular matrix proteins. This genetic basis means the core issue is not a dietary lack of collagen, but rather a flaw in the body's ability to produce or process it correctly. However, the systemic nature of EDS often leads to secondary issues, including poor nutrient absorption and significant dietary challenges, which can result in various deficiencies. For these reasons, nutrition is a vital component of managing EDS symptoms alongside standard medical care.

Common Nutritional Deficiencies in EDS

For individuals with EDS, a combination of gastrointestinal dysfunction and dietary limitations can lead to several common nutrient deficiencies. Monitoring these levels through blood work and addressing them with a healthcare professional is key.

Vitamin D

Many EDS patients have significantly lower levels of 25(OH)D, the active form of vitamin D, indicating a high risk of deficiency. This may be due to reduced sunlight exposure related to chronic pain and fatigue. Vitamin D is essential for calcium absorption, bone health, and muscle function, and low levels can increase the risk of osteopenia and fractures, which are already concerns for those with EDS.

Iron

Iron deficiency is one of the most frequently observed nutritional shortfalls in the EDS community, and it is a common cause of anemia. For patients already struggling with fatigue, iron deficiency can exacerbate symptoms significantly. It is particularly prevalent among women and children with hypermobility and EDS. Proper iron levels are crucial for hemoglobin production and oxygen transport throughout the body.

Vitamin B12 and Folate

Vitamin B12 deficiency is also commonly found in EDS patients, often due to issues with malabsorption in the gut. A lack of B12 can contribute to fatigue and cognitive difficulties, sometimes referred to as 'brain fog,' which are common symptoms of EDS. Some studies also suggest a potential link between mutations that impair folate processing and hypermobile EDS (hEDS), highlighting the importance of monitoring folate status as well.

Magnesium

Magnesium plays a critical role in muscle function, nerve function, and sleep quality, all of which can be affected in EDS. A deficiency can exacerbate symptoms like migraines, headaches, muscle cramps, and joint pain. Some forms of magnesium supplementation can also be helpful for managing chronic constipation, a frequent gastrointestinal issue for EDS patients.

Vitamin C

Vitamin C is a vital cofactor in collagen synthesis, a process that is fundamentally disrupted in most forms of EDS. While consuming extra vitamin C won't fix the underlying genetic defect, ensuring adequate intake is important for maximizing the body's limited ability to produce stable collagen. It is also a powerful antioxidant that supports wound healing.

The Role of Gastrointestinal Issues in Malabsorption

Gastrointestinal (GI) problems are extremely common in people with EDS and can directly contribute to nutritional deficiencies through malabsorption and a cycle of poor eating habits.

Dysautonomia: Co-occurring conditions like Postural Orthostatic Tachycardia Syndrome (POTS) can impact digestion through the autonomic nervous system. This can lead to symptoms like nausea, bloating, and delayed gastric emptying (gastroparesis), which in turn affect appetite and nutrient intake.
Mast Cell Activation Syndrome (MCAS): Many EDS patients also have MCAS, which involves an inflammatory response and can lead to various food intolerances and sensitivities. Adopting dietary restrictions to manage MCAS, such as a low-histamine diet, can potentially limit nutrient diversity if not managed carefully.
GI Dysmotility: Abnormal connective tissue can affect the function of the digestive tract, leading to issues like chronic constipation, reflux, and irritable bowel syndrome (IBS)-like symptoms. These issues can cause pain and discomfort, leading to restricted eating and potential nutrient gaps.

Nutritional Strategies and Supplementation for Managing EDS

Since there is no one-size-fits-all 'EDS diet,' a personalized approach is necessary. Working with a healthcare professional or registered dietitian is crucial to identify and address individual needs, focusing on general wellness and mitigating symptoms.

Addressing Deficiencies: Once deficiencies are identified via blood work, targeted supplementation, along with dietary changes, can help restore levels. For example, a doctor may recommend high-dose vitamin D and iron supplements.
Managing Associated Conditions: For POTS, increasing fluid and salt intake is often recommended to help increase blood volume and reduce symptoms. For MCAS, a temporary elimination diet (e.g., low-histamine) guided by a professional can help identify triggers.
Dietary Quality: Focusing on a diverse diet rich in whole foods, lean proteins, and healthy fats is beneficial. Limiting processed foods, added sugars, and inflammatory ingredients can help support gut health and reduce overall inflammation. Some patients find it helpful to explore specific food intolerances like gluten or dairy through guided elimination protocols.
Meal Timing and Size: For those with gastroparesis or other GI motility issues, eating smaller, more frequent meals can be more manageable and improve nutrient absorption.

Comparison of Potential EDS-Related Nutritional Deficiencies and Management


Nutrient	Potential Symptoms of Deficiency	Dietary Sources	Management Considerations
Vitamin D	Fatigue, increased fracture risk, muscle weakness	Fatty fish (salmon, tuna), egg yolks, fortified dairy/cereal	Consider supplementation, especially if sun exposure is limited
Iron	Fatigue, weakness, anemia, headache, shortness of breath	Lean meats, poultry, fish, lentils, spinach, fortified cereals	Monitor levels regularly, especially for women. May require supplementation
Vitamin B12	Fatigue, brain fog, neurological issues, megaloblastic anemia	Meat, dairy products, fortified nutritional yeast	Supplementation may be necessary due to poor absorption
Magnesium	Muscle cramps, joint pain, migraines, constipation	Leafy greens, nuts, seeds, dark chocolate	Different forms can target different symptoms. Monitor bowel function
Vitamin C	Impaired wound healing, fragile skin, easy bruising	Citrus fruits, bell peppers, strawberries, broccoli	Ensure adequate intake to support residual collagen production
Protein	Delayed tissue repair, muscle weakness, fatigue	Lean meats, fish, beans, lentils, nuts, eggs	Consume adequate amounts throughout the day, as protein is not stored like fat

The Need for Professional Guidance

Given the complexity of EDS and its common comorbidities like POTS and MCAS, navigating nutritional needs requires expert guidance. A specialized dietitian or nutritionist can help create a balanced diet plan that addresses malabsorption, potential food sensitivities, and specific deficiencies without causing unnecessary nutritional restriction. Blood tests are a reliable way to diagnose deficiencies and track progress.

Conclusion

While Ehlers-Danlos syndrome is a genetic condition affecting connective tissue structure, it is frequently accompanied by a range of secondary nutritional deficiencies. Common deficiencies in vitamins D, B12, C, and minerals like iron and magnesium can significantly worsen symptoms such as fatigue, pain, and gastrointestinal issues. Addressing these shortfalls through a personalized, whole-food diet, often supported by targeted supplementation, is a crucial part of managing the condition effectively. A collaborative approach with a healthcare team is essential to ensure a safe and effective nutritional strategy that improves a patient's overall quality of life.

For more information on the genetic basis of Ehlers-Danlos syndrome, consult the resources provided by the National Institutes of Health.

Frequently Asked Questions

No, eating more collagen does not fix Ehlers-Danlos syndrome. EDS is caused by a genetic mutation that affects the body's ability to produce or process collagen correctly, not by a lack of dietary collagen.

Deficiencies in vitamin D and iron are common due to multiple factors. Poor appetite, GI issues causing malabsorption, and reduced sun exposure from pain and fatigue can all contribute to low vitamin D levels. Similarly, poor absorption and fatigue are often linked to iron deficiency, which is particularly common in EDS.

Yes, diet can help manage many symptoms associated with EDS, although it is not a cure for the underlying genetic condition. A personalized nutritional plan can address deficiencies, improve gut health, and manage symptoms from related conditions like POTS and MCAS.

Some individuals with EDS who also have conditions like MCAS or gastrointestinal inflammation find a low-histamine or gluten-free diet helpful for managing symptoms. However, these approaches are not universally necessary or effective for all EDS patients and should be explored with a healthcare professional to avoid unnecessary dietary restrictions.

Magnesium deficiency is often seen in EDS patients and can worsen symptoms like muscle pain, cramps, and headaches. Additionally, some magnesium supplements can help manage chronic constipation, a common GI issue.

Improving absorption involves addressing the root cause of malabsorption, often tied to GI issues. Eating smaller, more frequent meals, managing underlying conditions like POTS and MCAS, and focusing on a nutrient-dense, anti-inflammatory diet can help. A dietitian can provide specific guidance.

No, nutritional needs vary greatly among people with EDS, depending on the specific subtype, severity of symptoms, and presence of co-occurring conditions. A customized approach is crucial for effective and safe nutritional management.