Nutrition in EDS Awareness Month

Ehlers Danlos Syndromes awareness month is here!

What is EDS?

Ehlers Danlos Syndromes (EDS) are a collection of conditions affecting connective tissue.

There are fourteen EDS subtypes, with thirteen of these being rare yet identifiable through genetic testing, and the most common 'hypermobile' subtype (hEDS) requiring a skilled professional to diagnose using the Ehlers Danlos Society diagnostic checklist.

While EDS is most often recognised for its joint hypermobility component - often seen as being 'too bendy' or 'double-jointed' - other symptoms including gut & digestive issues are a huge part of many EDS patient's journeys.

Other conditions that can co-exist with EDS include Postural Orthostatic Tachycardia Syndrome (racing heartbeat on standing, also a type of 'dysautonomia' causing our body to shift into 'fight-flight-freeze' mode), Mast Cell Activation Syndrome (immune cells releasing too much histamine & other compounds, causing allergic and inflammatory reactions), chronic fatigue, anxiety & irritable bowel syndrome.

Did you know: most people with EDS experience at least one gut symptom

One study suggested that up to 87% of EDS patients have gastrointestinal symptoms!

In clinic, this is very much reflects the experiences of clients I see. Although the types of gut symptoms experienced can vary greatly client to client, along how often they occur and the impact they have on a client's life.

What's the best diet for EDS?

(short answer: there isn't one!)

There are no clinical trials (yet) investigating diet & nutrition in people with EDS.

Even if there were, we would need a fair few good quality trials looking at similar interventions to draw solid conclusions!

We DO know that hypermobile clients are at higher risk of nutrient deficiencies, including Vitamin C, Vitamin D, magnesium, iron & zinc.

At this stage, working with a qualified nutrition professional for individualised symptom management, dietary strategies, meal planning & nutrient deficiency screening is best for creating a sustainable and effective plan.

So, what should I do?

1) Focus on the basics:

• eating regular meals

• having protein, carbohydrates, fats & fibre at most meals

• including a variety of foods

• identifying food triggers

• optimising hydration & salt

• pacing and sleep

2) Seek one-on-one nutrition assistance:

• especially if your symptoms are significantly impacting life

• to ensure you're meeting your body's needs on a restrictive or elimination diet

• to chat through any food anxieties and support a healthy relationship with food & your body

• to make a plan that feels safe and accesible for you

• to stop feeling like you're trialling diet changes but barely getting anywhere

Reach out or book in for a discovery call if you'd like to chat about finding ease and clarity on your nutrition journey with EDS and/or hypermobility!