Living with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) presents unique challenges, and diet is a critical aspect of managing these conditions. This article provides a detailed exploration of the role of nutrition in EDS and hypermobility management, addressing common nutritional deficiencies, offering practical diet recommendations, and helping you avoid potentially harmful dietary practices.
Understanding the Roadblocks to a Hypermobile Diet
Individuals with EDS and hypermobility often face gastrointestinal symptoms like acid reflux and nausea, making it difficult to consume certain foods. Maintaining adequate nutrition can be a struggle due to poor appetite, fatigue, and gastro pain. Restrictive diets, often self-imposed in an attempt to manage symptoms, can lead to nutritional deficiencies and exacerbate issues like fatigue and weakness. Misinformation about beneficial diets and supplements for EDS can also lead to unhelpful or harmful dietary practices.
Common Gastrointestinal Issues
IBS: Irritable Bowel Syndrome (IBS) affects a significant percentage of individuals with hypermobile EDS (hEDS), with current evidence suggesting that up to 62% of patients may suffer from it.
GI Symptoms: Ehlers-Danlos Syndrome can significantly impact bowel and gastrointestinal function due to the laxity of connective tissue, leading to slower gut motility.
Dyspepsia: Also known as indigestion, dyspepsia refers to discomfort or pain in the upper abdomen, often after eating or drinking.
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POTS: Postural Orthostatic Tachycardia Syndrome (POTS) can cause lightheadedness, palpitations, and dizziness, leading to a drop in appetite and affecting diet.
MCAS: Mast Cell Activation Syndrome (MCAS) involves mast cells releasing inflammatory mediators, which can cause symptoms like rashes and diarrhoea.
Dispelling the Myth of a Universal EDS Diet
It's important to dispel the myth of a specific EDS diet, as there is no universally prescribed diet for EDS or HSD. There is no medical justification for individuals with these conditions to categorically avoid certain foods based on their diagnosis alone. Instead, nutrition should be approached on a person-by-person basis, considering individual needs and how EDS may impact them.
The decision to exclude specific foods from your diet should be a personal one, grounded in your experiences and guided by professional advice. If certain foods consistently trigger discomfort, it’s worth discussing this with a healthcare professional. Similarly, if you have a diagnosed food allergy, it’s essential to avoid allergenic foods to prevent adverse reactions.
When is a Specific Diet Necessary for EDS?
While there is no magic "EDS diet," there are instances where specific dietary adjustments become necessary. These include:
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Food Intolerances and Allergies
Food intolerances and allergies can pose challenges for individuals with EDS or HSD. Lactose intolerance, for example, can cause bloating, gas, and diarrhoea. Celiac disease, an autoimmune disorder triggered by gluten, can damage the lining of the small intestine. Mast Cell Activation Disorder (MCAD) can lead to a range of symptoms, and a low histamine diet may be helpful for some individuals.
Nutritional Deficiencies
Blood tests can reveal nutritional deficiencies, which may necessitate dietary changes. Iron deficiency is a frequently observed deficiency in the EDS community, leading to symptoms like fatigue and shortness of breath.
Disorders of Gut-Brain Interaction (DGBI)
DGBI are common in patients with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorder (hEDS/HSD). Food is a known trigger for DGBI symptoms, which often leads to dietary alterations and, increasingly, nutrition support.
Key Nutritional Considerations for EDS and Hypermobility
Several nutritional deficiencies are commonly observed in individuals with EDS and hypermobility. Addressing these deficiencies is crucial for managing symptoms and improving overall well-being.
Vitamin D: The Sunshine Vitamin
Vitamin D is essential for bone health and a strong immune system.
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Vitamin B12: Essential for Cognitive Function
Vitamin B12 is necessary for cognitive function and for reducing symptoms of fatigue and depression.
Iron: Vital for Oxygen Transport
Iron is vital for carrying oxygen in the blood and maintaining immune function.
Protein Intake
Adequate protein intake is essential for tissue repair and overall health.
Supplements for EDS and Hypermobility
While a balanced diet should be the primary focus, certain supplements may be beneficial for individuals with EDS and hypermobility.
The Magnesium and EDS Relationship
Magnesium plays a role in muscle function and bone health.
Collagen’s Role
Collagen is a key component of connective tissue.
Vitamin C and Hypermobility
Vitamin C is important for collagen synthesis.
Psyllium Husk Fibre
Psyllium husk fibre can aid in digestive health.
Practical Diet Recommendations for Managing EDS/HSD Manifestations
Patients with hEDS/HSD benefit from the support of a multidisciplinary healthcare team. This review discusses nutritional implications and provides practical recommendations to address the manifestations of hEDS/HSD.
Irritable Bowel Syndrome
Start with the National Institutes for Health and Care Excellence (NICE) guidelines. If the NICE guidelines are not successful in alleviating symptoms, consider the low FODMAP diet with the elimination, reintroduction, and personalization phases
Functional Dyspepsia
Consider a trial limiting fatty or spicy foods, wheat, caffeine, and alcohol. Consider a Mediterranean Diet pattern to reduce intake of animal protein and increase intake of fruits and vegetables. Consider a trial of the low FODMAP diet. Have small meals throughout the day. Eat slowly and chew well.
Gastroparesis
Incorporate a small particle size diet with a focus on blending, mashing, or mincing foods. Adjust fiber intake if necessary. Increase movement after meals if possible. Have small meals throughout the day. Consume foods with fat as tolerated. Fat is sometimes tolerated best in liquid form.
Constipation
Eat two kiwifruit a day. Increase intake of soluble fiber which binds water (e.g., oats, flax) with increased fluid intake. Add foods with natural sorbitol content (e.g., prunes, dried apricots). For IBS-C, consider a short-term trial of the NICE guidelines or the low FODMAP diet
Celiac Disease
Adopt a lifelong gluten-free diet. Monitor for nutrient deficiencies
Temporomandibular Disorders
Switch to pureed foods or soft textures if needed. Cut food into smaller pieces to ease chewing
Postural Orthostatic Tachycardia Syndrome
Increase fluid consumption to 2-3 liters daily and increase salt up to 6-10 grams unless contraindicated. Consider a lower glycemic diet if appropriate. Monitor symptoms and tailor specific recommendations based on the patient’s needs.
Mast Cell Activation Disorders
An experienced RDN should evaluate a diet journal for potential MC triggers. Consider a low histamine diet elimination and reintroduction if indicated.
Avoiding Fad Diets and Unproven Treatments
It's crucial to be wary of fad diets and unproven treatments, as they can lead to nutritional imbalances, potential health hazards, and financial strain.
Dangers of Fad Diets
- Nutritional Imbalances: Fad diets can lead to deficiencies in essential nutrients.
- The Illusion of Short-Term Gains: Rapid weight loss may be unsustainable and can have negative health consequences.
- Potential Health Hazards: Some fad diets may be harmful to your health.
- The Mental and Emotional Toll: Restrictive diets can lead to disordered eating patterns and negative body image.
- Promises, Promises: Fad diets often make unrealistic promises.
- The Financial Strain: Specialised foods and supplements can be expensive.
Lifestyle Factors and EDS Management
In addition to diet, lifestyle factors play a significant role in managing EDS.
Seeking Professional Guidance
Navigating the complexities of diet and EDS requires professional guidance. Consulting with a registered dietitian or nutritionist specializing in hypermobility and EDS nutrition can provide personalized recommendations and support.