Discussion in 'Other Health News and Research' started by Kyla, Sep 13, 2016.
Dysautonomia International put out this statement / summary of the study:
I wonder how accurate self reported gluten sensitivity is ?
4% versus 1% seems low to link celiac to POTS ?
Before concluding a causal relationship between the two, I would instead point to the main issue being gut dysbiosis, which is associated with both gluten sensitivity and POTS/dysautonomia.
I think the 4% figure came from physical tresting. as the abstract says "RESULTS:
Overall, 4/100 (4%) patients with PoTS had serology and biopsy-proven coeliac disease."
The self report of non-coeliac sensitivity was 42% - "PoTS patients also had a higher prevalence of self-reported gluten sensitivity (42 vs. 19%, respectively;"
Sady the full text is behind a paywall.
4 x the normal population rate (which is usually slightly less than 1%) is pretty significant!
Perhaps I am finding this more significant than most because I have both POTS and Celiac disease (properly diagnosed well before ME diagnosis),
but i would say it is an interesting finding (assuming it is reproducible) because Celiac disease is an autoimmune disease, and has well-established high co-morbidity with other autoimmune diseases. So while this current study is not sufficient to elucidate what the relationship is between POTS and Celiac disease, it does add some additional circumstantial evidence for POTS being autoimmune in a subset of patients.
This bit in itself just makes me laugh and shows everything that is wrong with the medical professions warped sense of self importance...
WHAT, YOU MEAN SOME PEOPLE DONT EAT GLUTEN AND THEY HAVENT EVEN ASKED THEIR DOCTORS PERMISSION TO STOP?
So what? Can someone please explain why we need gluten in our diets regardless of the fact that someone may or may not be gluten intolerant. What would we be deficient in if we just cut out gluten from our diets?
Do we know of people who suffer from gluten deficiency?
"A MAN STOPPED EATING BANANAS" ahhhhhhhhhhh!!!!!!!!!!!!!"
I guess it just their way of wording things but it really made me laugh.
Or is it that antibodies that have been associated with POTS can also make you gluten sensitive too due to the autoimmune response?
I haven't gone looking to see if it's the case but adrenergic and muscarinic acetylcholine antibodies are thought to possibly cause autoimmune POTS and unpublished data out of Mayo suggests that 25% of those with POTS has antibody to alpha3 nicotonic acetylcholine receptors. All these antibodies affect motility of the GI tract too.
[In a recent review (Thieben, 2007) of 152 cases of POTS seen consecutively by Sandroni and Low, 6 of 42 patients (who had ganglionic antibody measured) had increased levels of antibody. These were consistently of low titer. In our ongoing prospective study, the percent of positive cases we have found a positivity of 25% (unpublished data).]
But I had a different interpretation, I think they were just pointing out that maybe patients found out that they felt better on a gluten free diet and decided to avoid gluten independently of any medical advice.
If you thought the above statement was odd, remember a lot of people go on a gluten free diet without even knowing what gluten is. It's becoming or became a fad type diet which is utter nonsense. But maybe the POTS patients are on to something, who knows.
POTS patients probably have a bunch of antibodies floating around based on what we've seen in various small, unreplicated studies and what patients report on forums. I am worried that this study might promote fad diets like paleo and gluten-free if it's misinterpreted as wheat causing both coeliac and POTS.
"While non-celiac gluten sensitivity was often dismissed in the past, new research suggests that it is often associated with inflammatory markers in the gut, and it's just as "real" as celiac disease. We look forward to seeing more research on this topic."
I have POTS and have improved my ME symptoms by going gluten-free and lactose free since May this year. I feel so much better and my gut though not perfect is also greatly improved. I was tested for allergy to gluten but this came back negative so its more a sensitivity.
My energy has been great since cutting out gluten except for a month and a half when I was having coconut milk instead of lactose free dairy milk. My energy went back to how it used to be prior to gluten free. Once I stopped the coconut milk within a few days back came all this lovely energy.
Personally I feel everyone with ME/CFS should try gluten free for at least a month to see if they are helped. Its very easy to do and only takes a few adjustments to one's diet. I have also heard that well over 50% of people who have problems with gluten are also likely to have some problems with dairy. I know I have to limit how much lactose free milk I can tolerate otherwise my bowels are likely to explode!
I have autoimmune thyroid disease so its perfectly possible that I could have other autoimmune diseases that I don't know about.
My difficulties with gluten came on many years before I developed POTS, something like 25 years.
As I said above, I haven't been looking to see if there is a connection with antibodies and gluten intolerance in POTS but as 1 in 4 cases of POTS were seen to have the alpha3 nicotonic acetylcholine receptor antibodies in a Mayo study, that is a statistically significant occurrence which warrants being tested for. If the antibody is high enough, it can cause symptoms similar to Pure Autonomic Failure which would normally be seen as an acute onset but it can be a slowly evolving chronic condition too, much like Sjogren's Syndrome in onset and symptom-wise.
4 times normal though 4% is a low figure, 4 times normal is fairly high.
This may be more startling looking study if they took a group of actual celiac patients and tested them to see how many of those have POTS.
This is very relevant to me as I have severe POTS and have believed for ages I have gluten sensitivity, I have noticed it does seem to make my POTS worst. I also do have the genotype for the celiac disease (I think my uncle has POTS too, he has celiac disease).
I think I actually told one of my doctors once that carb things such as normals breads and that seem to make my POTS worst (and I dont think I was believed, I got to copy this study to keep).
I also have several SNPs putting me at risk for celiac as per 23andme and Livewello.
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