Last year we talked about hypermobility spectrum disorder (HSD) and Ehlers Danlos syndrome (EDS) in two newsletters.
Firstly, about how common gluten sensitivity is in these patients. 👇
https://www.academyofchiropracticnutrition.com/eds-and-histamine/
And, into histamine and collagen 👇
And if you didn’t know, POTS (postural orthostatic tachycardia syndrome) and HSD/EDS are highly linked.
From POTS UK
Hypermobility Spectrum Disorder (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) are commonly associated with PoTS.
In fact, a worldwide survey undertaken in 2020 which recruited people with PoTS identified that 31% of participants were classified as having hEDS, and that 55% of participants met the criteria for being hypermobile.
POTS cliff notes:
When a healthy person stands up, blood vessels narrow, and heart rate increases slightly to maintain blood supply to heart and brain.
In PoTS, this automatic adjustment to upright posture is not working correctly, resulting in an excessive rise in heart rate, increased norepinephrine in the blood and altered blood flow to the brain.
Essentially, it is autonomic dysfunction (dysautonomia) with your sympathetic system kicking in hard when you stand.
Usually with a sustained increase in heart rate of greater than 30 beats per minute (bpm) within 10 minutes of standing.
The thing to remember here is, we are trying when possible to get at the roots of the issues, dare I say it’s CORE?
A sustained inflammatory response is what the course is all about.
You win the game of inflammation, and you win in clinic.
Common things are common, did you know half the population carry the gene for gluten sensitivity with enteropathy AKA Coeliac disease?
And in the HSD/EDS group (many of whom have PoTS), the rates of full-blown Coeliac are huge compared to general population.
6 of the 31 were positive for full-blown gluten enteropathy/Coeliac disease.
That is 19% compared to 1% in the general population.
Remember those 25 who were not full gluten enteropathy/Coelaic, could have gluten sensitivity 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 !
I wonder how many of those would benefit from a gluten free 2 week diet trial?
And often underpinning it is a dysfunctional immune system and auto immunity.
Luckily for you, I am here to give you some low hanging fruit to pick.
Once again, it is our old nemesis, gluten directly being tested in PoTS. .
Here is the set up:
“Postural orthostatic tachycardia syndrome (POTS) is a chronic disorder of the autonomic nervous system that is associated with orthostatic intolerance (OI) and gastrointestinal (GI) symptoms.
We aimed to determine if a gluten-free diet (GFD) may be an effective treatment in patients with POTS.”
20 patients with PoTS, and who DO NOT HAVE COELIAC disease (would have been told by NHS they can eat gluten), go gluten free for 4 weeks and get a PoTS questionnaire before and after.
Note all were female aged between 16-62 years old, with a diagnosis between one and thirty years ago.
Eight have EDS and eleven have been diagnosed with mast cell activation disorder (MCAS) which means way too much histamine.
They all do a COMPASS 31 PoTS questionnaire before & after.
And as you can see, the results are astonishing.
Note some symptoms improve far more than others, GI symptoms & orthostatic intolerance (41%) for example.
But overall, in total scores there was 33% reduction
If there was a drug that did that, it would be front page news.
I always recommend a 2 weeks gluten, and ideally a dairy free trial (cows milk protein is an issue about 50% with gluten) at the same time.
2 weeks is enough to see a difference and give a green light to carry on, and most see something within 1-5 days.
Sometimes, 4 weeks just seems too long and it puts people off.
It is important to remind them it is not forever (it often is but they don’t know that).
And if needed for some encouragement try.
