Why nutritional deficiencies occur in EDS
Ehlers-Danlos Syndromes (EDS) are a group of hereditary connective tissue disorders that can affect the body in a multitude of ways, including the gastrointestinal system. The intricate link between EDS and nutrition is an important area for symptom management. Deficiencies don't always stem from a poor diet alone but are often linked to complex co-morbidities and physiological issues common in the EDS population.
Gastrointestinal dysfunction and malabsorption
One of the primary reasons for nutritional deficiencies in EDS is compromised gut health. Many with EDS experience gastrointestinal (GI) dysmotility, affecting digestion and nutrient absorption. This can mean that even when eating a nutrient-dense diet, the body struggles to absorb and utilize essential vitamins and minerals effectively. Co-occurring conditions like Small Intestinal Bacterial Overgrowth (SIBO) and Gastroparesis further compound malabsorption issues.
Associated co-morbidities
EDS is frequently associated with other conditions that impact nutritional needs and absorption. These include Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). POTS can lead to significant fluid and electrolyte imbalances, while MCAS involves the release of inflammatory mediators that can affect the gastrointestinal tract.
Key vitamins and minerals often deficient in EDS
While not everyone with EDS will experience the same deficiencies, certain nutrients are frequently flagged in the community. Monitoring levels of these key vitamins and minerals can be an important part of a personalized management plan.
Vitamin D
- Role: Critical for calcium absorption, bone health, muscle function, and immune system regulation.
- Why it's often low: Studies have shown a higher prevalence of low Vitamin D levels in people with EDS. This may be due to factors such as reduced sun exposure because of pain or limited mobility, as well as potential malabsorption issues. Some rare EDS types also experience frequent fractures and low bone mineral density.
- Impact on EDS symptoms: Deficiency can exacerbate fatigue, muscle weakness, and bone density problems.
Vitamin B12 and B-complex vitamins
- Role: Essential for nerve function, energy production, red blood cell formation, and cognitive function.
- Why it's often low: Like other nutrients, B12 can be poorly absorbed due to GI issues common in EDS. B12 deficiency has also been linked to Postural Orthostatic Tachycardia Syndrome (POTS), a common EDS co-morbidity.
- Impact on EDS symptoms: Low B12 levels can contribute to significant fatigue, "brain fog," and neurological symptoms, which are already prominent issues for many with EDS. Some research also links functional B12 deficiency to weaker collagen synthesis in some cases.
Magnesium
- Role: Involved in over 300 biochemical reactions, including muscle and nerve function, blood pressure regulation, and energy creation.
- Why it's often low: Many with EDS have symptoms that are exacerbated by low magnesium levels, including muscle soreness and chronic pain. Poor gut motility and malabsorption can hinder adequate intake.
- Impact on EDS symptoms: Magnesium deficiency is linked to muscle pain, cramps, anxiety, headaches, and migraines—all common complaints in the EDS community. Certain forms of magnesium can also help with chronic constipation, another frequent issue.
Vitamin C
- Role: Crucial for collagen synthesis and is an important antioxidant.
- Why it's often low: As a cofactor in the enzymatic process of collagen cross-linking, vitamin C is vital for connective tissue health. While severe deficiency (scurvy) is rare, suboptimal levels can impact the body's already compromised collagen production. Some studies have also noted lower vitamin C levels in EDS patients with bleeding issues.
- Impact on EDS symptoms: Low vitamin C can worsen easy bruising, slow wound healing, and affect the quality of collagen.
Comparison of common deficiencies in EDS
| Nutrient | Common Symptoms of Deficiency | Why It's Relevant for EDS | Potential Dietary Sources |
|---|---|---|---|
| Vitamin D | Fatigue, muscle weakness, bone pain, increased fracture risk | Poor absorption, limited sun exposure; essential for bone and immune health | Fatty fish, fortified dairy, eggs, sunlight |
| Vitamin B12 | Fatigue, neurological issues, "brain fog", anemia | GI dysfunction impairs absorption; linked with POTS and energy production | Meat, dairy, eggs, fortified foods |
| Magnesium | Muscle cramps, pain, anxiety, headaches, constipation | Crucial for muscle and nerve function; deficiency exacerbates many EDS symptoms | Dark leafy greens, nuts, seeds, beans, whole grains |
| Vitamin C | Easy bruising, poor wound healing, weak collagen synthesis | A vital cofactor for producing functional collagen, which is already defective | Citrus fruits, berries, bell peppers, broccoli |
| Iron | Fatigue, weakness, pale skin, dizziness (anemia) | GI issues affect absorption, and bleeding abnormalities can lead to blood loss | Red meat, lentils, spinach, fortified cereals |
Dietary and supplementation strategies
Given the complexities of EDS, managing nutrition often requires a multifaceted approach. Simply taking a supplement may not be enough if underlying absorption issues are not addressed. Always consult with a healthcare provider and a dietitian before beginning any new supplementation regimen to ensure safety and effectiveness.
Focus on whole foods
Prioritizing a diet rich in fresh greens, vegetables, fruits, and lean proteins can help ensure a good baseline nutrient intake. Minimizing processed foods, refined sugars, and inflammatory triggers is often recommended. For those with co-morbid MCAS or GI issues, identifying specific food triggers is crucial.
Addressing gastrointestinal health
Working on gut health is fundamental for improving nutrient absorption. This might involve exploring dietary changes like a low FODMAP diet, increasing prebiotic and probiotic foods, or addressing potential SIBO with a healthcare team. Proper hydration and fiber intake are also vital for regulating GI function.
Targeted supplementation
Under a doctor's guidance, targeted supplements can help correct identified deficiencies. For example, individuals with low Vitamin D might benefit from daily supplementation, while those with POTS may be advised to increase salt intake alongside adequate fluids. Intravenous iron therapy may be necessary for severe deficiencies that don't respond to oral iron due to GI intolerance.
Conclusion
While a definitive list of vitamins that all people with EDS are deficient in doesn't exist, certain patterns emerge due to the nature of the condition and its common co-morbidities. Key areas of concern include Vitamin D, Vitamin B12, magnesium, Vitamin C, and iron, all of which play critical roles in bodily functions often affected by EDS. By addressing nutritional deficiencies with a holistic strategy that includes dietary adjustments and targeted supplementation under professional guidance, many individuals can experience improvements in their overall health and symptom management. Education and proactive management are crucial for living better with EDS.
Visit The Ehlers Danlos Society for more resources on living with EDS
