What deficiencies do people with EDS have? An in-depth guide

September 27, 2025 •

5 min read

Many individuals with Ehlers-Danlos Syndrome (EDS) and hypermobility experience nutritional challenges that can lead to various deficiencies. A proper understanding of what deficiencies do people with EDS have is key to managing symptoms and improving overall quality of life.

Quick Summary

People with Ehlers-Danlos syndrome frequently experience deficiencies in key nutrients like Vitamin D, Vitamin B12, iron, magnesium, and protein, often due to gastrointestinal issues and comorbidities like POTS that complicate absorption.

Key Points

Common Deficiencies: Individuals with EDS are prone to deficiencies in Vitamin D, Vitamin B12, iron, and magnesium, which can worsen symptoms like fatigue and pain.
Collagen Support is Key: Vitamin C and adequate protein intake are essential for collagen synthesis, and supplementing these may improve tissue health and wound healing.
GI Issues Impact Absorption: Underlying gastrointestinal problems like delayed gut motility can cause malabsorption, making it difficult to get sufficient nutrients from diet alone.
POTS Complicates Hydration: Comorbid conditions like POTS can lead to dehydration and electrolyte loss, requiring increased intake of fluids and electrolytes like sodium and magnesium.
Personalized Plans are Necessary: Because of individual variations in EDS, working with a healthcare team to create a personalized nutrition and supplementation plan is crucial for effective management.

Understanding Ehlers-Danlos Syndrome and Nutrition

Ehlers-Danlos Syndromes (EDS) are a group of heritable connective tissue disorders that result from defects in collagen and related proteins. This widespread connective tissue dysfunction can affect nearly every system in the body, including the gastrointestinal tract, which can, in turn, lead to significant nutritional problems and deficiencies. While the genetic cause of many EDS subtypes, like hypermobile EDS (hEDS), is still unknown, managing nutritional status is a crucial aspect of care.

Common Nutrient Deficiencies in the EDS Community

Due to factors like gastrointestinal dysfunction, specific dietary restrictions, and increased nutritional demands, several key nutrient deficiencies are frequently observed in individuals with EDS. Monitoring and addressing these can have a notable impact on managing symptoms like fatigue, pain, and poor wound healing.

Vitamin D and K2

Vitamin D is a crucial fat-soluble vitamin essential for bone health, immune function, and muscle regulation. Research indicates a high prevalence of low vitamin D levels in people with EDS. Many EDS patients also experience reduced bone mineral density, making adequate vitamin D and its cofactor Vitamin K2 critical for preventing further bone health deterioration.

Vitamin B12 and Other B Vitamins

Vitamin B12 is vital for red blood cell production and neurological function. Gastrointestinal issues can impair B12 absorption, and a significant percentage of EDS patients with Postural Orthostatic Tachycardia Syndrome (POTS), a common comorbidity, have been shown to have B12 deficiency. This deficiency can contribute to fatigue, brain fog, and low energy levels.

Iron

Iron is necessary for producing hemoglobin, which carries oxygen in the blood. Iron deficiency, leading to anemia, is one of the most frequently observed deficiencies in EDS, especially among women. Anemia can cause severe fatigue, weakness, and other debilitating symptoms that overlap with EDS, making it difficult to diagnose without blood tests.

Magnesium

Magnesium plays a fundamental role in connective tissue maintenance and collagen metabolism. Deficiency can exacerbate many EDS symptoms, including chronic pain, muscle soreness, headaches, and migraines. Certain magnesium supplements may also offer relief for constipation, a common GI complaint in EDS.

Vitamin C

As a crucial cofactor in collagen synthesis, Vitamin C is an absolute must-have for EDS patients. Studies have shown that supplementation can aid wound healing, support connective tissue formation, and reduce skin fragility in EDS patients. This is especially important for the kyphoscoliotic and vascular types of EDS, where bleeding and wound healing problems are more prominent.

Protein and Amino Acids

Since EDS involves flawed collagen, providing the body with the necessary building blocks is essential. Adequate dietary protein ensures a supply of the amino acids—like glycine, proline, and hydroxyproline—needed for the body to produce and attempt to repair connective tissues. Many individuals with EDS may not consume enough protein, impacting muscle repair, energy levels, and tissue healing.

Electrolytes (Sodium, Potassium)

For the large percentage of EDS patients who also have POTS, managing electrolyte and hydration status is critical. Low blood volume and poor circulatory control associated with POTS can lead to chronic dehydration and electrolyte loss, necessitating increased intake of sodium and other electrolytes to alleviate symptoms.

Why Deficiencies Occur: The EDS Connection

Several factors unique to Ehlers-Danlos Syndromes contribute to the high rate of nutritional deficiencies. These challenges go beyond simple dietary intake and are linked directly to the underlying nature of the disorder.

Gastrointestinal Dysfunction

Connective tissue laxity in EDS can affect the entire gastrointestinal tract, leading to a range of issues including delayed gastric emptying, slow gut motility, gastroparesis, and irritable bowel syndrome (IBS). These issues can severely disrupt the absorption of vitamins and minerals, even if the diet is otherwise balanced.

Comorbidities Like POTS and MCAS

Many EDS patients have co-occurring conditions that further complicate nutrition. Postural Orthostatic Tachycardia Syndrome (POTS) is a common comorbidity that causes lightheadedness, palpitations, and dizziness, leading to a reduced appetite and difficulty consuming enough nutrients. Mast Cell Activation Syndrome (MCAS) can cause inflammation and food sensitivities, leading to very restricted diets and increased risk of nutrient shortfalls.

Restricted Diets

Due to gastrointestinal discomfort, some EDS patients may adopt restricted or limited diets, unknowingly eliminating key nutrient sources. While some find relief on specific diets like low FODMAP, navigating these restrictions without professional guidance can increase the risk of deficiencies.

Genetic Variations

A specific genetic polymorphism, such as the MTHFR gene variant, has been associated with elevated folate levels in some hypermobile patients, possibly indicating a metabolism issue rather than a simple deficiency. This highlights the complex interplay between genetics, metabolism, and nutrition in the EDS population.

Managing Deficiencies and Improving Nutritional Status

Addressing nutritional challenges requires a comprehensive, multi-pronged approach tailored to the individual. Consulting with a healthcare team, including a knowledgeable dietitian, is crucial.

Dietary Adjustments

Working with a dietitian can help identify triggers and develop a nutrient-rich diet that is well-tolerated. This may involve incorporating more protein-rich foods, focusing on easily digestible sources of vitamins, and managing fiber intake to address constipation. Focusing on anti-inflammatory foods can also be beneficial.

Supplementation Strategies

For many EDS patients, diet alone is not enough to correct deficiencies, and supplementation becomes necessary. Since GI issues can hinder oral absorption, alternative delivery methods like transdermal patches or intravenous nutrition may be considered. Always work with a doctor to determine the right supplements and dosages.

Comparison of Nutrition Approaches


Feature	Oral Supplementation	Transdermal Patches	Dietary Focus	Intravenous Nutrition
Absorption	Can be problematic due to GI issues	Bypasses the gut; good for malabsorption	Dependent on GI function; best for prevention	100% bioavailability; for severe cases
Effectiveness	Varies widely based on GI motility and absorption	Potentially more effective for those with malabsorption	Supports overall health, but may not correct severe deficiencies	Fast-acting and highly effective
Monitoring	Requires regular blood tests to assess levels	Requires consistent application and monitoring	Needs consistent intake and regular assessment	Closely monitored by a medical professional
Convenience	Easy to find and take, but may cause side effects	Convenient, avoids digestive upset	Can require significant planning and adaptation	Involves medical procedures; not for everyday use

Conclusion

Navigating Ehlers-Danlos Syndrome involves managing a complex set of symptoms, and nutritional deficiencies are a major contributing factor. By understanding what deficiencies do people with EDS have, addressing underlying issues like gastrointestinal dysfunction and comorbidities, and working with a qualified healthcare team, individuals can take proactive steps to improve their health. Personalized strategies involving diet, targeted supplementation, and lifestyle adjustments can help mitigate symptoms and enhance quality of life. For more support and information on managing EDS, consider visiting The Ehlers-Danlos Society and consulting with your doctor and a dietitian for a tailored approach.

Key Takeaways for Managing EDS and Nutritional Deficiencies

Prioritize professional guidance. Work with a dietitian and your doctor to identify and treat specific deficiencies based on blood tests and symptoms.
Target common shortfalls. Pay attention to your intake of Vitamin D, Vitamin B12, iron, and magnesium, as these are frequently low in the EDS population.
Boost collagen support. Ensure adequate Vitamin C and protein intake, as these are the building blocks and cofactors for collagen synthesis.
Consider malabsorption. Recognize that digestive issues common in EDS may impair absorption, making oral supplements less effective for some.
Manage comorbidities. Address related conditions like POTS and MCAS, which can significantly impact hydration, appetite, and nutritional status.

Frequently Asked Questions

Deficiencies in people with EDS can stem from a variety of issues, including malabsorption due to gastrointestinal problems, dietary restrictions to manage symptoms like nausea and bloating, and increased metabolic needs related to co-occurring conditions like POTS.

Yes, for many people, addressing nutrient deficiencies through supplementation can improve symptoms. For example, Vitamin D helps with bone health, and Vitamin C is vital for collagen synthesis. Always consult a doctor before starting any supplement regimen to ensure safety and effectiveness.

Yes, iron deficiency and iron-deficiency anemia are commonly reported in the EDS community, particularly among women. This can contribute to fatigue and weakness, which are also prevalent EDS symptoms.

Magnesium is important for connective tissue and muscle function. Low levels can exacerbate symptoms such as muscle soreness, headaches, and migraines. Supplementing magnesium may offer relief for these and other issues like constipation.

Vitamin C is a vital cofactor for the enzymes that produce and stabilize collagen. Given that EDS involves a defect in collagen, adequate Vitamin C intake is critical for supporting connective tissue health and promoting wound healing.

While collagen is central to EDS, taking a collagen supplement might not be a direct solution. Your body breaks down ingested collagen into amino acids, and your genetics determine how it's rebuilt. Ensuring sufficient protein and Vitamin C is generally more effective for giving your body the raw materials it needs.

There is no single diet for all people with EDS. However, some individuals with co-occurring conditions like MCAS or IBS may benefit from avoiding specific trigger foods or following a low-histamine or low-FODMAP diet under professional guidance to manage symptoms.