Why Nutrient Absorption Is a Problem in EDS
Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that can affect nearly every system in the body, including the digestive tract. The connective tissue abnormalities that define EDS can cause functional and structural issues within the gut, leading to a cascade of problems that hinder proper nutrient absorption. For example, gastrointestinal (GI) dysmotility, or sluggish movement of the gut, is a common problem in EDS and can lead to bloating, reflux, and constipation. These issues can cause food to pass through the system too quickly or too slowly, reducing the time available for essential vitamins and minerals to be absorbed.
Additionally, many EDS patients experience overlapping conditions that further complicate nutritional status. Mast Cell Activation Syndrome (MCAS), for instance, is frequently seen in those with hypermobile EDS (hEDS) and can cause systemic inflammation. This inflammation can damage the gut lining and impair absorption. Likewise, Postural Orthostatic Tachycardia Syndrome (POTS), another common comorbidity, can affect gut function through autonomic nervous system dysfunction. The resulting combination of GI dysmotility, inflammation, and associated conditions puts many people with EDS at a high risk for developing nutritional deficiencies, even with an otherwise adequate diet.
Specific Common Deficiencies in the EDS Community
While any nutrient deficiency can occur, several appear to be especially common and impactful in the EDS population:
Vitamin D Deficiency
Studies have repeatedly shown that low vitamin D levels are prevalent among individuals with EDS. This deficiency can be particularly problematic for people with EDS due to vitamin D's vital role in bone health and muscle function. Given that many with EDS already have compromised connective tissue and may experience joint instability, muscle weakness, or bone density issues like osteopenia, adequate vitamin D is crucial.
Vitamin B12 Deficiency
Fatigue and cognitive issues, such as "brain fog," are common complaints among those with EDS and can be exacerbated by a vitamin B12 deficiency. Malabsorption issues can prevent the body from properly absorbing B12 from food. There is also a strong association between B12 deficiency and POTS, a condition that frequently overlaps with EDS. Correcting a B12 deficiency can help improve energy levels and cognitive function.
Iron Deficiency
Iron deficiency is a frequently observed issue in the EDS community, contributing to pervasive fatigue and weakness. This can result from poor absorption caused by GI dysfunction or chronic blood loss due to easy bruising and fragile blood vessels. Iron deficiency can lead to anemia, further compounding symptoms and impacting quality of life.
Vitamin C Levels and Connective Tissue
Vitamin C is a key cofactor in the synthesis of collagen, the protein that is defective in EDS. While supplementation is not a cure, some clinical experiences suggest that it may support wound healing and potentially improve bleeding symptoms in some EDS patients. Recent studies have investigated lower vitamin C levels in patients with bleeding disorders, which can frequently occur alongside EDS.
Magnesium and Other Minerals
Magnesium deficiency is another issue that can exacerbate certain EDS symptoms, particularly fatigue, muscle cramps, headaches, and constipation. Magnesium plays a critical role in muscle function and can be lost through sweating, which is common in those with POTS. Other minerals and trace elements, including calcium, zinc, and copper, may also be deficient due to malabsorption.
Addressing Deficiencies in EDS: A Comparative Approach
Managing nutrient deficiencies in EDS requires a careful, individualized approach. The following table compares standard dietary and supplementation strategies with considerations specific to EDS patients.
| Strategy | Standard Approach | EDS-Specific Considerations |
|---|---|---|
| Diet | Focus on a balanced diet rich in whole foods, fruits, and vegetables to meet nutritional needs. | May need to consider dietary triggers related to comorbidities like MCAS or IBS. Low FODMAP or low histamine diets may be used under professional guidance. |
| Oral Supplements | OTC vitamins and minerals to fill nutritional gaps, taken as needed. | Malabsorption is common, meaning standard oral supplements may be ineffective. Higher dosages or specific formulations (e.g., chelated minerals) may be necessary and require medical supervision. |
| Intravenous (IV) Therapy | Generally reserved for severe deficiencies or medical emergencies where oral intake is impossible. | May be required for EDS patients with chronic, refractory malabsorption who cannot maintain adequate nutrient levels orally, especially with conditions like gastroparesis. |
| Monitoring | Routine blood work during annual physicals. | Regular, targeted testing for specific nutrients like vitamin D, B12, and iron is critical. Ferritin levels must be interpreted carefully in the presence of chronic inflammation. |
| Underlying Issues | Address the deficiency itself (e.g., take iron for anemia). | Focus on treating the root causes of malabsorption, such as GI dysmotility, MCAS, or SIBO, in addition to supplementing. |
A Holistic Approach to Nutrition
Addressing these complex nutritional issues in EDS is not about a one-size-fits-all solution. It demands a holistic approach, often involving collaboration between multiple specialists. A dietitian or nutritionist with experience in EDS can help navigate complicated GI symptoms and create a manageable plan. Managing overlapping conditions like MCAS and POTS is also key, as their symptoms can directly impair nutrient absorption or impact appetite and energy levels.
In addition to addressing specific deficiencies, focusing on gut health is paramount. Promoting a healthy gut microbiome through prebiotics and probiotics can aid in the absorption of fat-soluble vitamins and other nutrients. Ensuring sufficient protein intake is also critical for supporting tissue repair and muscle stability. Finally, managing hydration and salt intake can be beneficial, particularly for those with POTS.
Conclusion
For individuals with Ehlers-Danlos Syndrome, nutritional deficiencies are a significant and often overlooked aspect of symptom management. Poor absorption due to GI dysfunction, compounded by comorbidities like MCAS and POTS, frequently leads to low levels of key nutrients such as vitamin D, vitamin B12, iron, and vitamin C. Proactive management, including regular lab work, targeted supplementation under medical supervision, and addressing underlying issues, can significantly improve quality of life. An individualized strategy that accounts for the multifaceted nature of EDS and its overlapping conditions is essential for optimizing nutritional health.
For more detailed information on specific dietary considerations and strategies for managing GI issues in EDS, consult resources from organizations like The Ehlers Danlos Society. Their educational materials provide excellent guidance on optimizing nutritional status alongside healthcare providers.
