Which foods should a patient with Ehlers‑Danlos syndrome and gastrointestinal motility problems, abdominal pain, bloating, and possible mast‑cell activation/histamine intolerance avoid?

Food Avoidances in Ehlers-Danlos Syndrome with GI Symptoms

Patients with Ehlers-Danlos syndrome experiencing gastrointestinal symptoms should avoid high-histamine foods, gluten, dairy products, high-FODMAP foods, fatty and spicy foods, and foods that trigger mast cell degranulation including alcohol and certain food additives. 1

Evidence-Based Dietary Restrictions

Primary Trigger Foods to Avoid

Low-histamine diet is recommended based on clinical experience for patients with suspected or confirmed mast cell activation syndrome (MCAS), which commonly co-occurs with hEDS. 1 This includes avoiding:

• High-histamine foods: Aged cheeses, fermented foods, cured meats, leftover meat, alcohol (especially red wine), vinegar, and certain fish 1
• Histamine-releasing foods: Citrus fruits, strawberries, tomatoes, chocolate, nuts, and shellfish 1

Gluten and dairy elimination should be considered as these are commonly reported triggers in clinical practice, though formal studies are limited. 1 The 2025 AGA guidelines specifically note that diets low in histamine, gluten, and dairy have been recommended based on clinical experience for patients with hEDS and MCAS. 1

FODMAP Restriction for Bloating and Pain

High-FODMAP foods should be restricted if bloating and abdominal pain are prominent symptoms, as these short-chain fermentable carbohydrates increase intestinal water volume and gas production. 1 Avoid:

• Oligosaccharides: Wheat, rye, onions, garlic, legumes 1
• Disaccharides: Milk, yogurt, soft cheeses 1
• Monosaccharides: Honey, apples, high-fructose corn syrup 1
• Polyols: Stone fruits, mushrooms, artificial sweeteners 1

The low-FODMAP diet should be implemented as a structured three-phase approach (restriction for 4-6 weeks, systematic reintroduction, personalization) rather than indefinite restriction. 1

Foods Problematic for Gastroparesis

If delayed gastric emptying is present, avoid:

• High-fat foods: Fried foods, fatty meats, cream-based sauces 1, 2
• High-fiber foods: Raw vegetables, whole grains, nuts, seeds 1, 2
• Large food particles: Foods requiring extensive chewing 1

Instead, adopt a gastroparesis diet with small, frequent meals (4-6 per day) consisting of low-fat, low-fiber, small-particle foods. 1, 2

Additional Trigger Avoidances

Mast Cell Activation Triggers

Beyond dietary histamine, patients should avoid:

• Alcohol (potent mast cell degranulator) 1
• Strong smells and fragrances 1
• Temperature extremes (very hot or cold foods/beverages) 1
• Specific medications: Opioids, NSAIDs, iodinated contrast 1

General GI Symptom Triggers

• Carbonated beverages (may worsen bloating and gastric distension) 1
• Caffeine (can exacerbate reflux and anxiety) 1
• Spicy foods (may trigger reflux and abdominal pain) 1
• High-sugar foods (can worsen dumping-like symptoms) 1

Critical Implementation Considerations

Nutritional Counseling is Mandatory

All dietary restrictions MUST be accompanied by formal nutritional counseling to prevent restrictive eating patterns and avoidant/restrictive food intake disorder (ARFID). 1, 2 Patients with hEDS have a 4-fold increased risk of requiring nutrition support when ARFID develops. 3 The 2025 AGA guidelines explicitly state that dietary interventions should be delivered with appropriate nutritional guidance to avoid the pitfalls of restrictive eating. 1

Phased Approach to Elimination

Rather than eliminating all potential triggers simultaneously:

1. Start with traditional dietary advice: Regular meals, adequate hydration, limiting caffeine and alcohol, adjusting fiber based on symptoms 1
2. Progress to targeted elimination: If symptoms persist, trial low-FODMAP diet or low-histamine diet based on predominant symptom pattern 1
3. Systematic reintroduction: After 4-6 weeks of restriction, systematically reintroduce foods to identify individual tolerances 1
4. Personalization phase: Use reintroduction data to liberalize the diet as much as possible while maintaining symptom control 1

Common Pitfalls to Avoid

• Over-restriction without guidance: Leads to nutritional deficiencies and ARFID 1, 3
• Indefinite elimination: The restriction phase is diagnostic, not therapeutic long-term 1
• Ignoring psychological factors: Anxiety and fear of eating significantly impact dietary behaviors and require parallel psychological support 3
• Testing-based elimination: IgG food antibody testing lacks specificity and should not guide elimination diets 1

Monitoring and Support

Patients should be monitored for:

• Micronutrient deficiencies: Particularly with prolonged restrictions 1, 3
• Adequate protein intake: Target 1.0-1.2 g/kg/day minimum 1
• Signs of ARFID: Fear of eating, low interest in food, meal skipping 3
• Quality of life impact: Dietary restrictions should improve, not worsen, overall well-being 3, 4

Consider daily multivitamin supplementation during restriction phases. 1