Managing Ehlers-Danlos syndrome (EDS) is a multifaceted process, and diet plays a significant role in mitigating symptoms, especially those related to the gastrointestinal (GI) tract and comorbid conditions like Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS). Faulty collagen in EDS affects connective tissues throughout the body, including the digestive system, leading to impaired motility, nerve sensitivity, and increased inflammation. While a registered dietitian is crucial for personalized advice, understanding general food categories to approach with caution is a vital first step.
High-Histamine and Processed Foods
One of the most common dietary approaches for those with EDS, particularly if MCAS is a factor, is a low-histamine diet. Mast cells release inflammatory chemicals, including histamine, which can be triggered by food and result in a wide range of symptoms. Highly processed foods often contain preservatives, additives, and dyes that can act as mast cell triggers. Additionally, processed meats and aged products are naturally high in histamine.
Why Processed Foods Are Problematic
- Additives and Preservatives: Artificial colors, flavors, and preservatives are known mast cell triggers and can disrupt gut health.
- High Histamine Content: Cured meats, aged cheeses, and fermented foods can exacerbate MCAS symptoms.
- Refined Sugars: Diets high in added sugars can worsen gut dysbiosis, which is an imbalance of gut bacteria linked to inflammation and digestive issues in EDS.
Gluten and Dairy
For many with EDS, going gluten-free and/or dairy-free can significantly improve symptoms, particularly gut-related issues like bloating and pain. While gluten is not the enemy for everyone, in those with a fragile digestive system, it can trigger gut inflammation.
Considerations for Gluten and Dairy
- Gut Inflammation: Gluten can cause inflammation and increase gut permeability (leaky gut) in sensitive individuals, creating an inflammatory cascade.
- FODMAP Content: Foods containing gluten, like wheat, are often high in fructans (a type of FODMAP), which can cause gas and discomfort for those with intestinal hypersensitivity.
- Casein Intolerance: Some individuals with EDS struggle to tolerate casein and lactose found in dairy, leading to worsened GI symptoms.
High-FODMAP Foods
FODMAPs are a group of short-chain carbohydrates that are poorly absorbed by the small intestine. They are fermented by gut bacteria, which can cause bloating, gas, and pain, especially for those with EDS who may have gut dysmotility. A low-FODMAP diet is often recommended as a temporary elimination diet under dietitian supervision to identify specific triggers.
Caffeine and Alcohol
Caffeine and alcohol are two substances commonly reported to worsen EDS symptoms, especially in those with comorbid POTS and MCAS. Both are diuretics, contributing to dehydration, which can lower blood volume and exacerbate POTS symptoms like dizziness and lightheadedness.
- Caffeine: A short-term energy boost is often followed by a crash, which can fatigue the adrenal system and worsen underlying fatigue.
- Alcohol: Inhibits the enzyme diamine oxidase (DAO), which is responsible for breaking down histamine, leading to higher histamine levels in the body and potential MCAS flare-ups.
The Role of GI Function in EDS Diet
With a high prevalence of GI issues in EDS, understanding how faulty connective tissue impacts digestion is crucial. The connective tissue lining the digestive tract can be lax, affecting muscle contractions (motility) that move food along. This can result in delayed gastric emptying (gastroparesis), leading to early satiety, nausea, and bloating. Conversely, some may experience rapid motility, leading to diarrhea.
Comparison of Food Categories and EDS Impact
| Food Category | Potential EDS Impact | Associated Comorbidities |
|---|---|---|
| High-Histamine Foods | Triggers mast cell degranulation, causing systemic inflammation and allergy-like symptoms. | MCAS |
| Processed & Additive-Rich | Disrupts gut microbiome, contains inflammatory agents, triggers mast cells. | MCAS, General Inflammation |
| Gluten | Can cause gut inflammation and intestinal permeability (leaky gut) in sensitized individuals. | GI issues, MCAS |
| Dairy | Casein and lactose can be difficult to digest, causing GI distress. | GI issues |
| High-FODMAP Foods | Causes bloating, gas, and abdominal pain in those with intestinal hypersensitivity. | IBS, SIBO |
| Caffeine | Diuretic; contributes to dehydration, exacerbates POTS symptoms like dizziness. | POTS |
| Alcohol | Diuretic; inhibits histamine breakdown, triggers MCAS, worsens POTS symptoms. | MCAS, POTS |
| Large, Heavy Meals | Overloads a potentially sluggish GI system, can trigger POTS symptoms due to blood pooling. | GI issues, POTS |
Finding Individualized Triggers
Because EDS manifests differently in every individual, the best dietary strategy is highly personalized. A food and symptom journal can be an invaluable tool for identifying unique triggers. Working with a dietitian specializing in EDS and related conditions can help you navigate elimination diets and create a balanced plan that ensures proper nutrition while minimizing reactivity. The goal is to maximize nutrient-dense foods that support connective tissue (like protein, Vitamin C, Zinc, and Copper) while avoiding personal irritants.
Conclusion
While there is no single diet for everyone with Ehlers-Danlos syndromes, understanding what foods should you avoid if you have EDS is critical for managing symptoms. The list of common triggers includes processed foods, items high in histamine, and substances like gluten, dairy, alcohol, and caffeine, especially for those with comorbid MCAS and POTS. A personalized approach, guided by careful observation and professional advice, is essential to minimize inflammation and reduce GI distress. Focusing on whole, nutrient-dense foods while identifying and removing individual triggers can significantly improve quality of life. As always, any major dietary change should be discussed with a healthcare provider.
