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Posted

Hello, 

I've been having some trouble with POTS exacerbations, probably due to stomach issues. My gastroenterologist ordered a colonoscopy and the biopsy indicated possible early Celiac disease. I am getting a blood test tomorrow to test for Celiac disease. I am wondering if any other POTS person has had any experience with this?

Thanks!

Posted

@Angelika_23 - I am sorry you have to deal with a possible celiac diagnosis!!! -- Although I do not have it I went through a period with severe GI symptoms caused by dysautonomia. At that time I had a lot of testing done and at some time ( when I had both esophagitis and duodenitis ) they suspected Celiac. My gastroenterologist and PCP both said that celiac disease could potentially worsen POTS, possibly due to the stress it poses on the body constantly fighting it. 

6 hours ago, Angelika_23 said:

I've been having some trouble with POTS exacerbations, probably due to stomach issues.

In my case it turned out that the dysautonomia was what caused my GI issues, not the other way around. In my case - I have hyperadrenergic POTS - the constant overactivity of the sympathetic NS caused an overactive GI system, especially excessive acid production. I hope you will test negative tomorrow - please update us!! Best wishes 😉 !!

  • 2 weeks later...
Posted

I'm someone who got close to full recovery of my POTS back in 2011, 12, 13. I was able to return to work, but it seemed like autonomic glitches continued to hum underneath. I was still pretty grateful to get "better".  Around 2015 I was having some terrible stomach pain and I was annoyed b/c the POTS was better. I was diagnosed with Celiac, went gluten free without much change, then continued to live somewhat half hearted gluten free. I would've called myself gluten sensitive. The stomach pain flares would come and go and didn't seem to have anything to do with gluten. This past November I had a pretty bad pain flare, my pain is always under my left rib cage. I'm 51 so I had my colonoscopy, and endoscopy and a swallowed a pill camera and it was all negative except for celiac damage. Ive been strict gluten free since 12/1/19 without much change. 

A few weeks ago I started getting adrenaline surges, feeling light headed and such.  My previous symptoms were fainting but I don't feel like that. This is sort of a new dysautonomia that is gut driven; or maybe the dysautonomia is driving the gut. It seems like our issues are a little parallel. Let's get through it! I haven't been on the message boards quite as much in the past few years. I try and pop on every once in a while and let people know I did improve and it is possible. I'll check back with this thread and see how you're doing. - Tracy 

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