Myths Part Five: The EDS Diet and Other Nutrition Myths with Lorna Ryan

[@juniper8875]

What a great conversation! Thank you for doing this one. Understanding the complexity of nutrition is difficult even with the help of a nutritionist/clinician, which many of us don't have access to. Sometimes food and supplementation feel like the only things I *can* control in the midst of being passed around to different clinicians with different opinions.

[@JeannieDiBonHypermobility]

Glad you enjoyed it!

[@skilla1010]

This is such a fantastically helpful talk. Thanks so much. Loved the bit on PoTs dysautonomia. So great to hear someone who's aware of the reality of EDS. I've been told to follow a high salt diet and drink litres of fluid per day but have urge incontinence and dysphagia! It makes getting out and about so tricky. All these other factors have to be taken into account when recommending dietary changes for people with EDS.

[@JeannieDiBonHypermobility]

Glad it was helpful!

[@westieservant]

So helpful!!! Thank you for this, I really needed this information. I've been tempted to succumb to social media nutrition pressures.

[@JeannieDiBonHypermobility]

So glad this was helpful and from a credible expert in nutrition.

[@PsychodelicKitten]

I was told to take magnesium for migraines but don’t really notice a change but also learned there was different types. That was before my heds diagnosis

[@angelamatthews8190]

So good to have it confirmed that there is no one EDS diet. I didn't catch what Lorna said about histamine, though - should we be doing the low histamine diet or reducing histamine foods if we have MCAS? and I'm glad you said that we should be seeing doctors/etc who know about EDS etc, but how do we get to those on the NHS (can't afford private!)

[@JeannieDiBonHypermobility]

Glad this was helpful. There are NHS dieticians - could you get a referral?

[@jodylwallace]

Thank you so much for this

[@JeannieDiBonHypermobility]

Glad it’s useful

[@mariamoore7031]

Excellent topic and explanation about foods

[@JeannieDiBonHypermobility]

Thank you so much 🙂

[@AutumnPizzicato]

Thank you!

[@JeannieDiBonHypermobility]

You're welcome!

[@ahn0x]

What if I can't find nutritionists that don't have awareness of EDS - especially as how it affects absorption?

[@JeannieDiBonHypermobility]

I would check the EDS Society health professional directory.

[@ahn0x]

@@JeannieDiBonHypermobility There's literally like, virtually no coverage in Asia. + even Asian physiology also varies widely - like different reactions to milk, etc.

[@lornaolson-b6k]

Did you cover FODMAP diets? I missed some and really wondered about that one

[@JeannieDiBonHypermobility]

I don’t think Lorna is recommending any specific restrictive diet - always good to speak to a nutrition professional.

[@FoxRogers]

It is so frustrating that nutritionists are not covered by insurance. I live in California and have very good health insurance via my husband being a government employee. It is $350 per visit to go, so I don't.

[@JeannieDiBonHypermobility]

Yes that could be really helpful.