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What foods should you avoid if you have Ehlers-Danlos syndrome? A Comprehensive Nutritional Guide

4 min read

Functional gastrointestinal disorders, like IBS and gastroparesis, are significantly more common in those with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) compared to the general population. To address these issues and systemic inflammation, it is vital to understand what foods should you avoid if you have Ehlers-Danlos syndrome to minimize discomfort and support overall well-being.

Quick Summary

Managing Ehlers-Danlos syndrome symptoms often involves avoiding inflammatory foods, refined sugars, and processed items. Many individuals also benefit from limiting or eliminating gluten, dairy, and high-histamine foods, especially with co-occurring conditions like MCAS and POTS.

Key Points

  • Avoid Inflammatory Foods: Minimize processed foods, refined sugars, and unhealthy fats, which can exacerbate pain and inflammation in EDS.

  • Consider Gluten and Dairy Elimination: Many individuals with EDS have sensitivities to gluten and dairy that can worsen gut inflammation and systemic symptoms.

  • Monitor High-Histamine Foods with MCAS: If you have Mast Cell Activation Syndrome (MCAS), be mindful of aged cheeses, cured meats, and fermented items that are high in histamine.

  • Limit Alcohol and Caffeine for POTS: For those with POTS, reducing alcohol and caffeine intake can prevent dehydration and help stabilize blood volume.

  • Personalize Your Approach: Since every EDS case is unique, keeping a food journal and working with a dietitian is key to identifying specific dietary triggers.

  • Stay Hydrated: Proper hydration is critical, especially for individuals with POTS, to manage fluid balance and prevent low blood volume symptoms.

  • Support Gut Health: Incorporate prebiotic and probiotic-rich foods to promote a healthier gut microbiome, which can reduce inflammation and digestive distress.

In This Article

Understanding the Link Between Diet and Ehlers-Danlos Syndrome

There is no single "EDS diet," as dietary needs are highly individual and depend on a person's specific comorbidities and symptom profile. However, nutrition plays a vital role in managing the chronic inflammation, pain, and gastrointestinal issues frequently associated with Ehlers-Danlos syndrome (EDS). Poor nutrition, characterized by processed foods and sugars, can exacerbate these symptoms, creating a cycle of pain, fatigue, and flare-ups. The goal of an EDS-friendly diet is to reduce inflammation, support gut health, and manage any co-occurring conditions like Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), or Irritable Bowel Syndrome (IBS).

Inflammatory Foods: A Key Area to Target

Systemic inflammation can increase joint pain, fatigue, and other EDS-related symptoms. Eliminating or limiting known inflammatory foods is a common and effective strategy for many individuals. These typically include:

  • Processed Foods and Refined Carbohydrates: This includes most packaged snacks, white bread, pastries, and sugary breakfast cereals. These foods can contribute to blood sugar spikes, inflammation, and an imbalanced gut microbiome.
  • Refined Sugars and Artificial Sweeteners: Candy, soda, and high-fructose corn syrup are major culprits for triggering inflammation. Artificial sweeteners like aspartame and sugar alcohols such as sorbitol can also cause inflammation and digestive distress.
  • Unhealthy Fats: Trans fats found in processed snacks and fried foods, along with excessive omega-6 fatty acids from vegetable oils, can increase inflammation.
  • Processed and Red Meats: Cured meats, deli slices, and large quantities of red meat can contain compounds that promote inflammation.

Common Triggers for Co-occurring Conditions

Many individuals with EDS have other conditions that necessitate more specific dietary restrictions. Addressing these can lead to significant symptom relief.

Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance

For those with MCAS, an overactive immune system can lead to food intolerances triggered by histamine, a chemical that mast cells release. A low-histamine diet can be beneficial, requiring you to avoid:

  • Aged and Fermented Products: Aged cheeses, cured meats like salami, and fermented foods such as sauerkraut contain high levels of histamine.
  • Alcoholic Beverages: Beer, wine, and other spirits can trigger histamine release.
  • Certain Fruits and Vegetables: Citrus fruits, tomatoes, avocados, and eggplant are known histamine triggers for some.

Postural Orthostatic Tachycardia Syndrome (POTS)

Individuals with POTS, a form of dysautonomia common in EDS, must manage hydration and blood pressure. Certain foods and drinks can worsen symptoms like dizziness and fatigue:

  • Caffeine and Alcohol: These act as diuretics, promoting fluid loss and dehydration, which can lower blood volume and exacerbate POTS symptoms.
  • Large, High-Carb Meals: These can pull blood flow to the digestive system, potentially worsening dizziness and blood pressure fluctuations.

Irritable Bowel Syndrome (IBS) and Digestive Issues

GI issues are a major concern for many with EDS. A low-FODMAP diet, which involves temporarily eliminating high-FODMAP (Fermentable Oligosaccharides, Disaccharides, Monosaccharides, and Polyols) foods, has been shown to reduce symptoms like bloating and abdominal pain for some. High-FODMAP foods to potentially avoid include:

  • Certain Dairy Products: Some milks, cheeses, and yogurts high in lactose.
  • High-Fiber Foods (Temporarily): In the elimination phase, some high-fiber foods that cause fermentation may be restricted.
  • Specific Fruits and Vegetables: Including onions, garlic, apples, and beans.

Potential Allergens and Sensitivities: Gluten and Dairy

Many people with EDS report significant symptom improvement after eliminating gluten and/or dairy from their diets. This is not always due to a formal diagnosis like Celiac disease, but rather a sensitivity that triggers inflammation.

  • Gluten: Found in wheat, barley, and rye, gluten can inflame the gut and worsen gastrointestinal symptoms.
  • Dairy: Casein, a protein in cow's milk, can also provoke an inflammatory response in sensitive individuals.

Working with a dietitian is crucial before undertaking such a restrictive diet to ensure you still receive adequate nutrients.

Comparison Table: Avoid vs. Embrace

To help summarize dietary changes, here is a comparison of typical foods to limit versus anti-inflammatory and supportive alternatives.

Foods to Limit or Avoid Healthy Alternatives to Embrace
Processed & Fried Foods Fresh, whole foods: vegetables, fruits, lean proteins, and whole grains
Refined Sugars & HFCS Natural sweeteners like a small amount of honey or maple syrup, or stevia, if tolerated
Excessive Omega-6 Fats Omega-3 rich sources: fatty fish (salmon, sardines), flaxseeds, and chia seeds
Gluten-Containing Grains Gluten-free grains: quinoa, brown rice, millet, and buckwheat
Dairy (if sensitive) Dairy alternatives: coconut milk, almond milk, or lactose-free products
High-Histamine Foods Low-histamine alternatives: fresh meat, fresh fish, and non-citrus fruits
Caffeine and Alcohol Water, herbal teas, and broths for hydration and blood volume support

Creating Your Personalized Dietary Plan

Since dietary triggers are unique to each individual with EDS, a systematic approach is recommended. This often begins with keeping a food and symptom diary. Track what you eat, when you eat, and any physical or emotional symptoms that arise. This detailed record can help you and a healthcare professional identify patterns and potential culprits. An elimination diet, such as a low-FODMAP plan, can be used under medical supervision to help identify trigger foods. The ultimate goal is not a long-term, highly restrictive diet, but a personalized, nutrient-rich, anti-inflammatory eating pattern that optimizes your health and minimizes flares.

Conclusion: Fueling Your Body Wisely

For those with Ehlers-Danlos syndrome, the connection between diet and symptom severity is significant, especially concerning inflammation and gastrointestinal health. By avoiding processed foods, refined sugars, and other inflammatory triggers, individuals can support their bodies and potentially reduce pain and fatigue. For those with specific comorbidities like MCAS or POTS, avoiding high-histamine foods, alcohol, and caffeine is also beneficial. A personalized approach, often guided by a registered dietitian, is the most effective way to navigate the nutritional landscape of EDS. By focusing on fresh, whole foods and listening to your body's unique signals, you can proactively manage your health and improve your quality of life.

For more detailed information on dietary approaches, you can consult resources like those from The Ehlers-Danlos Society. [https://www.ehlers-danlos.com/wp-content/uploads/2020/07/2020vsc_heidi_collins.pdf]

Frequently Asked Questions

No, there is no single, evidence-based diet for all EDS patients. Dietary needs are highly individualized and depend on specific symptoms and co-occurring conditions, such as MCAS, POTS, and IBS.

While not all people with EDS need to avoid gluten, many find that it triggers inflammatory responses and worsens gastrointestinal issues like slow gastric emptying and pain. A trial elimination, under professional guidance, can help determine if it's a trigger for you.

Histamine intolerance, often linked to Mast Cell Activation Syndrome (MCAS), can cause symptoms like rashes, GI issues, and fatigue after consuming high-histamine foods. Observing your symptoms after eating aged cheeses, cured meats, or fermented products can provide clues, and working with a dietitian experienced in MCAS can help.

The low-FODMAP diet involves temporarily restricting foods with hard-to-digest carbohydrates, and research suggests it can significantly improve IBS-related symptoms like bloating and abdominal pain in those with hypermobility. It should be done under the supervision of a healthcare professional.

Processed foods and refined sugars promote inflammation throughout the body, which can exacerbate joint pain, fatigue, and other symptoms common in EDS. They also contribute to blood sugar spikes and can disrupt gut health.

For those with POTS, increasing salt and fluid intake helps raise blood volume, which can reduce symptoms like dizziness and lightheadedness. Avoiding diuretics like caffeine and alcohol is also recommended.

While ensuring adequate protein intake is important for collagen production, the body breaks down collagen supplements into amino acids, and there is no conclusive evidence that supplementation will alleviate EDS symptoms. Meeting your protein needs through a balanced diet is key.

References

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Medical Disclaimer

This content is for informational purposes only and should not replace professional medical advice.