The EDS Diet by Lorna Ryan

Estimated reading time: 3 minutes We all consume food and exist in a world where opinion and advice on diet is freely shared. The public is pleased to share tips. Family wishes to impart wisdom. Professional patients keen to share their n=1. Healthcare professionals sometimes slide out of scope to offer recommendations. And no more so than in the niche arena of Hypermobility & Ehlers-Danlos syndromes.

This may not be a blog you’re expecting, no lists of foods to eat or avoid here. Instead, a discussion centred on the nuances of nutrition & diet when living with EDS. Understandably it’s hard to know what to do when there’s one goal – just feel better. So exploring nuances and applying critical thinking around diet can be empowering, preferable to authoritative instruction, and safer.

The Notion of The EDS Diet

Plunging straight in; the notion of ‘The EDS Diet’ – An erroneous concept. There is no one blanket EDS individual, therefore how can there be a blanket EDS diet? Hypermobility may refer to a non-symptomatic presentation, without requiring targeted dietary considerations. Dietary support for hEDS and vEDS looks quite different & support for cEDS compared to kEDS is different again. So how can we broadstroke a diet for EDS? The blunt answer, we can’t – and we shouldn’t.

Presenting ‘The EDS diet’ concept suggests one is essential, and that one exists; neither being true. When faced with poor health & fighting for answers it’s understandable that one-page handouts, glossy ‘EDS Diet’ blogs & online ‘EDS Nutrition’ programmes tussle for your attention and money. It is unsurprising that diet protocols sound full of promise. Afterall, following the yellow brick road, skipping along to meet the wizard offers hope. We’ve all been there.

Except for dietary care in EDS, there is no wizard. Hope? Yes, certainly. Magic no.

So, if the notion of ‘The EDS Diet’ is misleading, where do we sit in dietary care for EDS? With a lack of peer-reviewed primary data for HSD/EDS & a lack of efficacy of targeted dietary interventions the official position is;

• There are no dietary & nutrition best practice guidelines for care in hypermobility Spectrum disorders or The Ehlers-Danlos syndromes.

If there is no “EDS diet” – what can we do?

Without formalised guidelines, does that leave clinicians without direction or patients without adequate EDS dietary support? No, absolutely not. We draw on understanding factors such as

• Guiding appropriate diet and nutrition care for adults living with symptomatic Hypermobility or one of the EDS subtypes is not conceptual.
• Observational primary research, narrative reviews, and expert opinions inform parameters to manage chronic coexistence health conditions such as pain, fatigue, headache, gastrointestinal disorders, dysautonomia, and mast cell disorders.
• Despite a lack of robust evidence in this arena, we have a growing body of studies, clinical observations, and hypothetical supplement protocols by which to offer safe & measurable clinical support.

How do we support coexisting health conditions & offer safe, measurable nutrition care for individuals living with EDS? Firstly, it’s a misconception that HSD or EDS needs special dietary attention. Eating for general health is key. All depends on the presenting symptoms. And, when a cluster of overlapping complexities may be present, we should start with simple foundations. These include:

• Moving away from strict regimes, food restrictions & the hyperfocus on one food group
• Avoiding high-volume supplementation
• Meeting daily nutritional needs for general health
• Consuming a diverse diet

Consuming a diverse diet, understandably, feels outside the reach of many living with HSD / EDS, especially those with gastrointestinal concerns. Think plentiful fibre types, all the colours of the rainbow. However, given the wider range of health benefits it offers, we must concede the importance in EDS. Yes, meeting this is a challenge for sure. But, not impossible with appropriate food modification;

• Manipulating meal composition and consistancy
• Adapting intake frequency
• Altering portion servings

Beyond simple foundations, especially when the principle causation of symptoms is unidentified or comorbidities are complex, safe support must include mitigating the risk of;

• Over-elimination
• Un-managed dysphagia (difficulty swallowing)
• Nutritional deficiencies & malnutrition
• Un-identified food allergy
• Disordered eating and/or reinforcing pre-existing eating disorders
• Colonic perforation in vEDS
• Rectal bleeding & obstruction in rectal prolapse

 We should consider co-occurring conditions

And what for interlinking safe & measurable dietary care with common co-morbid conditions in EDS? Gold standard recommendations advise on clinical interventions to help manage diagnosed conditions, for example, GERD, gastroparesis & PoTS. Yet, the reality of dietary management in EDS is highly nuanced when we consider co-occurring diagnosis & main areas to be carefully considered in EDS;

• Connective tissue integrity
• Enzyme deficiencies
• Gut- Motility abnormalities
• Gut-brain interactions
• Structural abnormalities
• Immune-mediated / rheumatologic
• Sympathetic, Parasympathetic, Enteric nervous system

Advice should be tailored to individual symptoms presentations in full respect of diagnosis & medical history. Here we have the bones of why there is no ‘EDS Diet’. Because both subtle & extreme details make dietary needs in this population complex & interesting. We are building consensus & forming guidelines. It’s an exciting time. There will be celebrations with cake.

Patients should seek support from clinically trained nutrition professionals (Registered Clinical Nutritionist / Dietitians) who have specific EDS training, knowledge & experience to fully care for complex health need in EDS.

For more on the intricacies of diet and hypermobility/EDS check you this conversation between Lorna and Jeannie debunking common EDS diet myths:

Written by Lorna Ryan. Lorna is a registered Nutritionist/Nutritional Therapy & Lifestyle Medicine Practitioner specialising in HSD & EDS. She has extensive knowledge and expertise in working with HSD/EDS and facilitates the EDS ECHO Nutrition course, is a member of the London Hypermobility Network of Excellence. She is also the chair of the Diet and Nutrition Working Group a part of the International Consortium of EDS & HSD.