EDS and Histamine

Many of the greatest medical discoveries were found by clinicians recognising patterns of symptoms linked via a root cause.

They had no RCT with a placebo control to go by and no “published peer-reviewed evidence,” but they saw reality.

That then may trigger a case study or case series and then onto a full research study it to “prove” it, but the results are there for you to see.

But when you are getting proper results, you do not need a questionnaire and a P value to know it is working, it is obvious.

In clinic, I routinely recommend a trial 2 week gluten-free diet to see if patients’ overall health and wellness improve with a view to getting good functional changes in the neuro-mechanical issues that usually bring them to see me.

I noticed that my hypermobile and Ehlers-Danlos syndrome (EDS) patients very frequently have significant digestive issues. Not unreasonable, given the gut is muscle and connective tissue.

But when I got them to remove gluten, they improved massively.

Not just the gut symptoms, but the neuro-mechanical symptoms too.

And not just a little, I mean a lot.

A LOT, a lot.

Way less pain and inflammation, more stable and on and on and on.

And this was consistently the case in 100% of the patients that tried it.

Clinical gems like these are so helpful.

That is one part of being at a live seminar you do not get with online stuff.

Those little chats with other attendees, dropping in patterns you have observed, and technique tips are gold nuggets.

So when it came to writing the very important CCCN module on gluten-

related disorders (of which gluten sensitivity with enteropathy, aka Coeliac disease), I wanted to add this knowledge.

But was it just me, or was there anything in the literature to support this?

Now within the literature, sadly, they are still obsessed with Coeliac disease, which is but one manifestation of gluten sensitivity.

So around 1% of the population-ish are diagnosed as gluten sensitive with enteropathy aka Coeliac.

In the UK around 600,000 are diagnosed.

But, and think about this, for every 1 diagnosed, there are 8 walking around that have no idea = 4.2 million undiagnosed in the UK, walking into your clinic.

It doesn’t mean they are asymptomatic necessarily, but they are unaware of the gluten-induced raging fire within them.

Check out the chart we use in clinic – If you fancy a copy, drop me an email.

Back the bendy folk, they have plenty of wide-ranging other issues.

GI issues are especially widespread

Conversely,

So there is a common theme here and is there a chance gluten is a unifying link?

What do the experts say?

Well, luckily, these authors ignored the “experts” and did a small study with 31 hypermobile/EDS patients (worth noting this was in Italy, where rates of Coeliac are high).

6 of the 31 were positive for full-blown gluten enteropathy/Coeliac disease.

That is 19% compared to 1% in the general population.

Remember that does not include those within the 31 that were gluten sensitive but not yet damaged enough to test positive (remember the blood test for Coeliac is not a blood test for gluten per se.

Thus, a -ve coeliac blood test does not rule out gluten sensitivity – REMEMBER THIS !!)

So I suspect the other 25, if they had run gluten sensitivity blood tests or given them all a gluten-free diet for 2 weeks, would have shown a response.

Those six patients had a diverse spectrum of symptoms at diagnosis:

And the response?

That is pretty much what I see in clinic.

Thus, hypermobile/EDS patients are x10-20 (1000-2000%) more likely to be +ve for gluten sensitivity with enteropathy aka coeliac disease.