Vitamin Deficiencies in Ehlers-Danlos Syndrome and hypermobility syndromes

Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) are connective tissue disorders characterized by joint hypermobility, chronic pain, and a range of systemic symptoms. Individuals with hEDS and HSD often face additional complications like fatigue, gastrointestinal dysfunction, and nutritional deficiencies, primarily due to malabsorption and increased physiological needs related to connective tissue repair. Addressing these vitamin and mineral deficiencies can play a critical role in managing symptoms and improving the overall quality of life for those affected.

Common Vitamin Deficiencies in hEDS and HSD

Vitamin D

Vitamin D is essential for bone health, immune function, and muscle strength, all areas that are often compromised in people with hEDS and HSD. Low levels of vitamin D can lead to fatigue, an increased risk of fractures, and joint pain. Despite efforts to maintain adequate vitamin D levels through sun exposure and diet, malabsorption in hEDS can hinder the body's ability to maintain optimal levels. Proper vitamin D supplementation is crucial for preserving bone density, muscle function, and immune health​​.

• Testing: A serum 25-hydroxyvitamin D test is recommended to assess vitamin D levels.

Vitamin B12

Vitamin B12 is vital for nerve function, red blood cell production, and cognitive health. A deficiency in B12 can cause symptoms like fatigue, neurological issues, and cognitive impairments—common concerns for people with hEDS. Gastrointestinal problems such as gastroparesis, frequently seen in hEDS, can hinder B12 absorption, increasing the likelihood of deficiency​.

• Testing: Serum vitamin B12 and methylmalonic acid (MMA) tests can help diagnose B12 deficiency.

Magnesium

Magnesium is essential for muscle relaxation, nerve function, and collagen production, playing a key role in the health of connective tissues. Low magnesium levels can lead to symptoms like fatigue, muscle cramps, and exacerbated joint instability—symptoms already present in individuals with hypermobility. Magnesium deficiency is common in hEDS due to increased magnesium excretion and poor absorption​​.

• Testing: A serum magnesium test can identify deficiencies and guide supplementation.

Iron

Iron is necessary for oxygen transport in the blood and for maintaining energy levels. Deficiency in iron, even without anemia, is prevalent in individuals with hEDS and HSD due to malabsorption or chronic blood loss from gastrointestinal disorders. Symptoms of iron deficiency, including extreme fatigue, dizziness, and shortness of breath, can worsen the chronic fatigue already associated with these conditions​.

• Testing: Ferritin and complete blood count (CBC) tests are commonly used to assess iron levels.

Folate (Vitamin B9)

Folate is important for DNA synthesis and repair and plays a role in collagen production, making it essential for people with connective tissue disorders. Individuals with hEDS may have genetic mutations, such as MTHFR polymorphisms, that impair folate metabolism, leading to elevated homocysteine levels, increased oxidative stress, and impaired collagen synthesis. Folate supplementation is particularly important for these individuals​​.

• Testing: Serum folate levels should be monitored, especially in those with suspected MTHFR mutations.

Testing for Vitamin Deficiencies

Due to the prevalence of malabsorption and gastrointestinal dysfunction in people with hEDS and HSD, regular testing for vitamin and mineral deficiencies is critical. Testing helps identify deficiencies early and allows for targeted treatment. Healthcare providers typically recommend the following tests:

• Vitamin D 25-OH test: To evaluate vitamin D levels.
• Serum B12 and folate tests: To check for deficiencies, particularly in individuals with neurological symptoms.
• Serum magnesium test: To identify magnesium deficiencies contributing to fatigue and muscle pain.
• Iron panel: Including serum ferritin, to assess iron stores and detect anemia​.

Addressing Deficiencies

Once deficiencies are identified, treatment generally involves a combination of dietary changes and supplementation to restore normal vitamin and mineral levels:

• Vitamin D: For those with low levels, supplementing with vitamin D3 is recommended. Regular sun exposure and consuming vitamin D-rich foods, such as fatty fish, fortified dairy, and eggs, can also help​.
• Vitamin B12: Individuals with malabsorption issues may require B12 injections or high-dose sublingual supplements. B12 can also be obtained through fortified cereals and animal products like meat and dairy​.
• Magnesium: Increasing magnesium intake through foods such as leafy greens, nuts, seeds, and whole grains is beneficial. Magnesium supplements are often necessary for those with significant deficiencies​​.
• Iron: Iron supplements may be needed to address deficiencies. Iron-rich foods such as red meat, spinach, beans, and fortified cereals should be combined with vitamin C-rich foods to enhance absorption​.
• Folate: Individuals with MTHFR polymorphisms may benefit from supplementing with 5-methyltetrahydrofolate (5-MTHF), the bioactive form of folate, to support connective tissue integrity​​.

The Role of a Multidisciplinary Approach

Given the complexity of hEDS and HSD, individuals benefit from the care of a multidisciplinary team that includes nutritionists, dietitians, gastroenterologists, and primary care physicians. This team approach ensures that nutritional deficiencies are regularly monitored, malabsorption is managed, and nutrient intake is optimized. Personalized nutrition strategies, tailored to the unique needs of each individual, are crucial for improving symptom management and enhancing the quality of life​​.

Conclusion

Vitamin and mineral deficiencies are common in individuals with hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders due to malabsorption, gastrointestinal issues, and increased physiological demands. Testing for and addressing deficiencies in vitamin D, B12, magnesium, iron, and folate can alleviate many symptoms, including fatigue, pain, and gastrointestinal distress. A multidisciplinary approach, including the support of healthcare professionals familiar with the nutritional challenges of hEDS and HSD, is essential for managing these complex conditions and improving the overall well-being of patients.

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FAQ

What vitamin deficiencies do people with Ehlers-Danlos Syndrome have?
People with EDS frequently experience deficiencies in vitamin D, vitamin B12, magnesium, iron, and folate. These deficiencies can exacerbate symptoms such as fatigue, cognitive difficulties, and pain.

Why do people with EDS experience vitamin deficiencies?
Vitamin deficiencies in EDS are often due to malabsorption caused by gastrointestinal disorders like gastroparesis, IBS, and dysautonomia, which interfere with nutrient absorption.

What vitamins help with hypermobile EDS?
Vitamins D, B12, and folate are particularly important for individuals with hypermobile EDS due to their roles in bone health, nerve function, and connective tissue integrity.

Can addressing vitamin deficiencies improve EDS symptoms?
Yes, correcting vitamin deficiencies can significantly improve symptoms like fatigue, cognitive issues, muscle weakness, and joint pain, helping patients manage their condition more effectively.

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References

1. Harris, David. Diet and Nutrition for Hypermobility and EDS. Ehlers-Danlos Syndrome (EDS), Dec. 2023. https://www.eds.clinic/articles/diet-nutrition-for-hypermobility-eds.
2. Collins, H. “Nutritional Approaches to Treating GI Concerns in Persons with Ehlers-Danlos Syndrome.” 2020. Ehlers-Danlos Society.
3. Harris, Cheryl Iny, et al. "Nutritional Considerations for Hypermobile Ehlers-Danlos Syndrome." Nutrition Reviews in Gastroenterology, Series #13, Practical Gastroenterology, May 2024. https://practicalgastro.com/wp-content/uploads/2024/06/Nutrition-May-2024.pdf.
4. Bilyeu, Laurie. Nutrition and EDS - 2022 Global Learning Conference. The Ehlers-Danlos Society, 22 Jan. 2024. https://www.youtube.com/watch?v=OWepuknhfwM.
5. Courseault, J., et al. “Folate-Dependent Hypermobility Syndrome.” Heliyon, vol. 9, 2023. https://doi.org/10.1016/j.heliyon.2023.e15387.