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POTS: unknown origin

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Does anyone have any insights into the following ?

For years I have felt sick on and off, this winter I had a mental collapse and decided to get bloodwork. Was diagnosed with celiac disease and undifferentiated connective tissue disease.

I got a second opinion from a rheumatologist who said I have an autoimmune condition but I definitely don’t have a rheumatic one. He referred me to a GI for my celiacs and positive SMA. He also diagnosed me with POTS.

But POTS is more of a symptom right ? My symptoms have gotten so much worse ( it’s been 3 months since I stopped eating gluten) . A lot worse during menstruation . Also have developed muscles twitches.

Does anyone have anecdotal info as to what their POTS is accompanied by? 
Does anyone suffer from long covid related POTS?

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  • 3 weeks later...

I'd caution on the Celiac diagnosis.  I had a Dr claim I had Celiac and told me to go gluten-free for two weeks and have a follow-up.  Celiac didn't sound right to me, so I went on an all-out gluten binge.  Pasta and bread at every meal.  My GI symptoms improved!   Of course, the Dr. was furious at the follow-up appointment.   My real issue was small intestinal bacterial overgrowth, but none of the 15 doctors I saw ever figured that out.  That was me borrowing a former professor's microbiology lab and doing my own research and solution.  2.5 years of pure h*** reversed in 10 days, and it's been 15 years since then, no issues. 

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