Gluten-free diet

Gluten-free diet in postural orthostatic tachycardia syndrome (POTS), 2022, Zha et al
Abstract

Objectives
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.

Methods
Patients with confirmed POTS and without celiac disease who followed GFD for  4 weeks retrospectively completed pre- and post- GFD COMPASS-31 questionnaires. Paired-samples t-tests were conducted to compare COMPASS-31 scores before and after adopting GFD.

Results
All 20 patients (all females, age 16–62 years (mean age 33)), had POTS symptoms for 1–30 years (mean 10.8, SD  =  10.23 years). Eleven patients had co-morbid mast cell activation syndrome, and 8 had hypermobile Ehlers-Danlos syndrome. Pre-GFD COMPASS-31 scores (mean 57.8) were significantly higher than post-GFD scores (mean 38.2, t(19) = -8.92, p < 0.00001), with the largest improvement noted in the OI (p < 0.00001), vasomotor, (p  =  0.0034), and GI (p  =  0.0004) domains and with a mean reduction in total COMPASS-31 score by 33.9% after implementing GFD. All patients reported improved symptoms on GFD with mean self-assessed improvement of 50.5% (range 10-99%).

Discussion
GFD may be effective in reducing the symptom burden in patients with POTS, particularly in the OI, vasomotor, and GI symptom domains. Large prospective studies are necessary to confirm whether GFD is an effective long-term treatment option for patients.

Paywall, https://journals.sagepub.com/doi/10.1177/17423953221076984

 

I wonder whether it might have been beneficial to also test non-patients? There is an awful lot of cr*p in most bread, and probably other food, nowadays.

I seem to recall that modern gluten is also very different from how it used to be.

 

I agree about the extra bits in a lot if commercial bread. When I eat it for very long it makes me worse, where eating my own homemade bread does not.

One of the primary reasons why, when able, I make and consume my own bread, with flours from Mills rather than the stuff supermarkets sell.

As for the abstract, it seems to list a lot of disputed conditions as being helped by gluten free diets.

Just seems off to me, and I have to wonder if they are measuring what they think they are.

 

My sister has Hashimoto's and feels terrible after she eats too much bread. She doesn't have POTS, but feels much better (no 'brain fog') when she's gluten-free.

 

I have been on a gluten free diet for some fifteen years (non coeliac gluten intolerance possibly linked to my ME), but have seen a significant deterioration in my orthostatic intolerance over the last eight years.

Though there may possibly be an association between gluten in our diet and orthostatic issues/POTS I suspect it is likely to be a complex relationship.

 

I do not understand. I think my brain is shutting down for the day.

I may have Hashimotos. I am hypothyroidal and on levo. But every now and then I test positive for that anti TPO thing associated with Hashimoto's. I shrug it off since treatment is the same, ie, levothyroxine, but maybe a higher dosage or whatever.

But I don't recall elevated TSH being tied back into diet. But I havent researched it much.

As for POTS, I have that, too, but how would diet fix that part of my brain?

 

Hi Duncan

I don’t know about POTs as I’m not really sure I fit the criteria but, from what you say, I do think it would be worth looking into the possibility of Hashimotos. Antibodies plus raised TSH= autoimmune thyroiditis. In my experience of being hypothyroid and having had raised thyroid antibodies in the past, I have found that I feel better on a gluten free diet. That doesn’t mean there is any relation to my TSH level or necessarily any relation to my thyroid but there’s a lot of advice on thyroid forums about cutting out gluten.

As far as I’m aware nobody understands why people with autoimmune thyroid disease feel better gluten free; it’s one of those things where it might just be worth trying cutting it out to see if it helps.

I never really thought my thyroid was necessarily much of an issue. I was only diagnosed 7 years ago, a few years after ME/CFS diagnosis and my GP only trialled Levo as my TSH had been hovering over 5 on and off for years. I recently had a thyroid scan and my thyroid has completely atrophied, more like someone with decades of thyroid disease, so something has been happening to it quite dramatically for a long time, despite my illness not showing as severe in the blood tests.

I’ve been on and off gluten for decades as I know I feel better off it, but it’s so hard to stay off it when it’s in everything and I don’t know for sure it helps/ doesn’t help as it’s not an immediate effect when I eat it and feels more cumulative.

 

I know it; I know I should try it. Whether I can muster the will power...Thanks for the input.

 

Gluten free or wheat free? I have a number of symptoms that go away on a wheat free diet. They are much worse on hard wheat products, which often have more gluten. I still have not made the assumption its gluten that is causing it. Wheat yes, gluten maybe. Substances that can contaminate our wheat products can go right back to the source. Some farms use roundup as a pre-harvest measure for wheat. I wonder if studies can even control for the wide range of potential confounds? I suspect the only sure way to test for gluten intolerance using a dietary measure is to add controlled amounts of isolated gluten. Otherwise draw the conclusions about commercial wheat products, or whatever it is in their diets. Gluten may or may not be the cause, and might be for some and not others.

 

For me my gluten?wheat issues have changed over time. Initially I thought might have had a wheat intolerance rather than a gluten intolerance, as I could eat rye bread, though spelt, which some people with wheat issues can tolerate, behaved for me just like modern wheat varieties.

For a number of years any German friends visiting would bring me traditional German rye breads, but unfortunately I can not longer tolerate rye bread and now my grain related issues involve any gluten regardless of the source.