Why Nutritional Deficiencies Occur in hEDS
Nutritional deficiencies in hypermobile Ehlers-Danlos Syndrome (hEDS) are multifactorial, stemming from gastrointestinal issues, dietary restrictions, and potentially even genetic factors. Many people with hEDS experience comorbid conditions like postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), which can lead to limited food intake, malabsorption, or specific triggers. Additionally, chronic pain and fatigue may reduce appetite and energy for preparing nutritious meals.
Vitamin D: The Sunshine Vitamin
Low vitamin D levels are a commonly reported issue within the hEDS community. Vitamin D is crucial for calcium absorption and bone health, and deficiencies are linked to fatigue and muscle weakness. For individuals with hEDS who already have compromised connective tissue, maintaining optimal bone density is particularly important. A 2016 study found low vitamin D levels in patients with vascular EDS, highlighting the potential impact across different EDS types. Sources of vitamin D include sunlight, fortified dairy products, and fatty fish.
B Vitamins: The Energy and Methylation Powerhouses
Several B vitamins play a role in the context of hEDS. Vitamin B12 deficiency is frequently cited and can contribute to the severe fatigue and brain fog often experienced by patients. Some research suggests a link between B12 deficiency and POTS, a common comorbidity. Furthermore, genetic variations affecting the MTHFR gene, which is involved in folate (Vitamin B9) metabolism, are common in hEDS patients. This can lead to the body having difficulty processing folate, potentially affecting connective tissue strength.
Vitamin C: The Collagen Cofactor
Vitamin C is an essential cofactor for the synthesis of collagen, the very protein that is defective in EDS. While the genetic defect itself cannot be fixed by vitamin C, ensuring adequate levels helps the body produce the best possible collagen it can. Low vitamin C levels are associated with poor wound healing and increased bruising, both common issues in hEDS. While more research is needed, some healthcare providers recommend regular vitamin C supplementation to support connective tissue production.
Minerals: Crucial for Connective Tissue and Function
Alongside vitamins, several minerals are of interest. Magnesium is important for muscle and nerve function, and low levels can exacerbate chronic pain, migraines, and fatigue. Magnesium also plays a role in bone health and managing constipation, a frequent gastrointestinal complaint in hEDS. Iron deficiency is another common finding, especially in women with hEDS, contributing to anemia and severe fatigue. Zinc is a cofactor for many enzymes, including some involved in collagen formation, and can be deficient in those with malabsorption issues.
Table: Comparison of Key Nutrients and Their Role in hEDS
| Nutrient | Primary Role in Health | Potential Impact on hEDS | Common Symptoms of Deficiency |
|---|---|---|---|
| Vitamin D | Bone density, immune function | Supports bone health often compromised by hEDS; deficiency linked to fatigue. | Fatigue, muscle weakness, low bone density. |
| Vitamin B12 | Red blood cell formation, neurological function | Linked to fatigue and brain fog; may be connected to POTS. | Anemia, fatigue, cognitive issues, neurological symptoms. |
| Folate (B9) | Cell growth, methylation | Impaired metabolism in some patients due to MTHFR gene variations; may affect collagen. | Fatigue, anemia, neurological problems. |
| Vitamin C | Collagen synthesis, wound healing | Cofactor for collagen production; helps maximize existing collagen strength. | Bruising, poor wound healing, gum issues. |
| Magnesium | Muscle and nerve function, energy production | Can help with migraines, muscle pain, and constipation often seen in hEDS. | Muscle cramps, fatigue, anxiety, headaches. |
| Iron | Oxygen transport, energy metabolism | Common deficiency, particularly in women, causing anemia and fatigue. | Fatigue, weakness, pale skin, shortness of breath. |
Identifying and Managing Deficiencies
Working with a healthcare team is crucial for identifying and managing nutritional deficiencies in hEDS. This typically involves blood tests to check levels of key vitamins and minerals. Factors such as gastrointestinal comorbidities, other health issues, medications, and supplement usage must be considered when interpreting results. A registered dietitian can provide personalized guidance to address nutritional gaps, either through dietary changes or supplementation.
Nutrient absorption can be tricky in hEDS due to widespread gastrointestinal dysfunction. This is why some patients may not benefit from oral supplementation alone and may require other methods, which should always be discussed with a doctor. In addition to diet, a holistic approach involving physical therapy, stress management, and adequate rest is often recommended for managing the condition and its symptoms.
Conclusion
Understanding what vitamins are deficient in hEDS is a crucial step towards better managing the condition's complex symptoms. Common deficiencies include Vitamin D, B vitamins like B12 and folate, Vitamin C, and minerals such as magnesium and iron. These low nutrient levels can exacerbate fatigue, pain, and other issues related to connective tissue weakness. By working with a multidisciplinary healthcare team to test for deficiencies and develop a targeted nutritional and lifestyle plan, individuals can proactively support their body's needs and improve their quality of life. Always consult with a doctor or dietitian before starting any new supplement regimen.
References
- EDS Nutrition. (2022, May 30). Magnesium supplements and Ehlers-Danlos Syndrome.
- Ehlers-Danlos News. (2023, April 17). Mutations that impair folate processing may be cause of hEDS.
- The Ehlers Danlos Society. (2020, July). Nutritional Approaches to Treating GI Concerns in Persons with Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorders.
- The Fibro Guy. (2023, October 26). Hypermobility and EDS: What is the best diet?.
- Hypermobility Clinic. (2021, June 20). Nutrition and Ehlers-Danlos Syndrome.
- Medical News Today. (2024, June 24). What vitamins are good for hypermobile joints?.
- NIH. (2016, August 03). Vascular type Ehlers-Danlos syndrome is associated with platelet dysfunction and low vitamin D serum concentration.
- Practical Gastro. (2024, June 17). Nutritional Considerations for Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD).
- Vitamin Patches UK. (2025, February 13). Ehlers-Danlos Syndrome: 6 best supplements to try if you have it.
- EDS Nutrition. (2023, October 21). Collagen Supplements for Ehlers-Danlos Syndrome and Hypermobility.
Disclaimer: The information provided here is for informational purposes only and does not constitute medical advice. Please consult a qualified healthcare professional before making any changes to your diet or supplement regimen.
