The complex nature of Ehlers-Danlos syndrome (EDS), a genetic disorder affecting connective tissue, means that many people with the condition experience a range of co-occurring health issues. These often include gastrointestinal problems like bloating, pain, and dysmotility, as well as systemic conditions such as Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS). While no single diet is right for everyone with EDS, identifying and avoiding foods that trigger or worsen symptoms is a powerful way to improve daily quality of life. The following provides a detailed look at common food triggers and why they can be problematic.
Highly Processed and Inflammatory Foods
Processed and packaged foods are frequently loaded with ingredients that can promote inflammation and worsen symptoms in those with EDS. These items should be minimized or avoided as much as possible.
- Added Sugars and Refined Carbohydrates: Sugary drinks, pastries, white bread, and other refined carbs cause blood sugar spikes that can lead to systemic inflammation and fatigue. Choosing ancient whole grains like quinoa, millet, and buckwheat may be a better alternative.
- Artificial Additives: Preservatives, food dyes, and artificial sweeteners can disrupt the delicate balance of the gut microbiome and cause reactions, especially in those with MCAS. Examples include aspartame and sucralose.
- Saturated and Trans Fats: Found in fried foods, processed snacks, and fatty meats, these fats are pro-inflammatory. Opting for lean proteins like skinless poultry, fish, and plant-based options can reduce intake.
Gluten and Dairy: Common Culprits
For many with EDS, gluten and dairy act as significant triggers, even in the absence of a celiac disease or true lactose intolerance diagnosis. Weakened connective tissue in the gut can lead to increased permeability (leaky gut), where food sensitivities can develop and create a cycle of inflammation.
Gluten and EDS
Some individuals find that eliminating or reducing gluten—a protein found in wheat, barley, and rye—dramatically improves gastrointestinal issues, brain fog, and joint pain. It is suspected that for people with EDS and POTS, gluten can cause gut inflammation that exacerbates symptoms. Alternatively, the issue might be fructans (a type of FODMAP) in wheat rather than gluten itself, causing bloating and discomfort. An elimination trial, guided by a dietitian, can help pinpoint the exact trigger.
Dairy and EDS
Like gluten, dairy can be an inflammatory food for many people with EDS, particularly for those with MCAS or lactose intolerance. Casein, a protein in dairy, is a common allergen that can cause issues. Fermented dairy products like aged cheeses and yogurt are also high in histamine, making them a dual concern for those with MCAS.
Navigating High-Histamine and High-FODMAP Foods
Conditions like MCAS and IBS often coexist with EDS and can be intensely affected by diet. A low-histamine or low-FODMAP approach is often used, typically with professional supervision.
Mast Cell Activation Syndrome (MCAS)
For those with MCAS, which involves an overactive release of inflammatory chemicals by mast cells, a low-histamine diet can reduce symptoms like flushing, rashes, and digestive distress. It’s vital to focus on fresh foods, as histamine levels increase with age, fermentation, and processing.
Foods to avoid on a low-histamine diet include:
- Aged and Fermented Foods: Aged cheeses (parmesan, cheddar), cured meats (salami, sausages), sauerkraut, pickles, and kombucha.
- Certain Vegetables and Fruits: Tomatoes, spinach, eggplant, avocados, and citrus fruits are common histamine releasers.
- Alcohol: Acts as both a histamine releaser and a DAO (histamine-degrading enzyme) blocker.
- Processed Foods and Additives: MSG, artificial dyes, and preservatives are known triggers.
Low-FODMAP Diet for GI Issues
The low-FODMAP diet is effective for many individuals experiencing Irritable Bowel Syndrome (IBS) symptoms, such as bloating, gas, and abdominal pain, frequently reported by people with hypermobile EDS. It temporarily eliminates high-FODMAP foods before reintroducing them to identify triggers.
Common high-FODMAP foods to consider avoiding include:
- Certain Vegetables: Garlic, onions, asparagus, and cauliflower.
- Specific Fruits: Apples, pears, and mangoes, especially in large quantities.
- Dairy: Lactose-containing milk, yogurt, and ice cream.
- Legumes and Pulses: Beans, lentils, and chickpeas.
Comparison of Dietary Approaches
| Dietary Approach | Primary Goal | Common Foods to Eliminate | Who It May Help |
|---|---|---|---|
| Anti-Inflammatory | Reduce systemic inflammation | Processed foods, refined sugar, unhealthy fats | Most people with EDS, for general health and pain management |
| Gluten/Dairy-Free | Address common sensitivities, reduce gut inflammation | Wheat, barley, rye, milk, aged cheeses, yogurt | Individuals with gut inflammation, POTS, or noticeable sensitivity |
| Low-Histamine | Manage Mast Cell Activation Syndrome (MCAS) | Aged/fermented foods, alcohol, certain fruits/vegetables | Those with MCAS symptoms like flushing, hives, and digestive issues |
| Low-FODMAP | Manage Irritable Bowel Syndrome (IBS) symptoms | Specific carbohydrates (e.g., fructans, lactose) found in various foods | Individuals with IBS-like symptoms such as bloating and gas |
Conclusion: Personalization is Key
There is no one-size-fits-all diet for Ehlers-Danlos syndrome. Instead, dietary management is about personalized troubleshooting. Starting with a general anti-inflammatory approach is a good first step, followed by more specific elimination diets (like low-histamine or low-FODMAP) under the guidance of a qualified healthcare professional, such as a registered dietitian. Listening to your body and tracking symptoms related to food intake is crucial. By identifying and strategically avoiding your specific trigger foods, you can significantly reduce daily symptoms and improve your overall well-being. Remember to consult a doctor before making major changes to your diet to ensure you are meeting all your nutritional needs.
What foods should you avoid with Ehlers-Danlos syndrome?
- Trigger foods vary for each individual: What causes a reaction in one person with EDS might be fine for another. It is important to experiment and track your personal triggers.
- Processed foods and sugar: These are common culprits for increasing inflammation and should be minimized or eliminated.
- Alcohol and caffeine: These substances can exacerbate symptoms of POTS and MCAS, which often co-occur with EDS.
- Gluten and dairy: For many, cutting these out can lead to significant improvements in gastrointestinal symptoms and inflammation.
- High-histamine foods: Those with MCAS should consider a low-histamine diet to manage symptoms.
- High-FODMAP foods: A low-FODMAP diet can be beneficial for managing IBS-like symptoms common in hEDS.
- Large meals: Eating smaller, more frequent meals can be easier on a sensitive digestive system.
A note on food sensitives and diagnosis
It is important to differentiate between a sensitivity and a diagnosed allergy. While a food sensitivity can cause discomfort and exacerbate symptoms in EDS, a food allergy can be life-threatening and requires strict avoidance. If you suspect you have an allergy, it is important to speak with your doctor and get tested.
It is also important to note that many of these dietary strategies are not meant for long-term elimination of entire food groups without supervision. A dietitian can help ensure that you are still getting all the necessary nutrients, particularly important for collagen synthesis, bone health, and overall function.
Further research on dietary approaches
Research is still ongoing into the specific dietary needs and triggers for people with EDS. A large body of evidence exists on nutrition's role in managing symptoms of comorbid conditions like chronic pain and GI issues. Working with knowledgeable healthcare professionals who understand EDS and its related complexities is always recommended.
Important considerations when making dietary changes
- Nutrient Deficiencies: When eliminating entire food groups, it is important to ensure you're getting adequate protein, vitamins, and minerals. A dietitian can help prevent nutrient gaps.
- Individual Threshold: Everyone's tolerance is different, especially regarding histamine. Keeping a food journal can help identify your specific thresholds.
- Gut Healing: Addressing leaky gut and repairing the intestinal barrier is a key part of long-term improvement for many with EDS.
- Hydration: Staying well-hydrated is critical, especially for those with POTS, as it helps manage blood volume.
By carefully considering which foods to avoid and focusing on a nutrient-dense, whole-foods diet, individuals with Ehlers-Danlos syndrome can take an active role in managing their symptoms and improving their overall health and well-being. This requires patience, self-awareness, and often, professional guidance, but the benefits can be significant.
