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POTS

kate12345

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kate12345 Apprentice
kate12345
Posted

I am wondering since my daughter is in the process of testing, if any of you have been diagnosed with Postural Orothostatic Tachycardia Syndrome? If so, did it get better with a gluten free diet? Thanks, Jennifer

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Di2011 Enthusiast
Di2011
Posted

I don't personally but just did a google on "Postural Orothostatic Tachycardia Syndrome celiac" and maybe this will help get you started.

Lindsy Newbie
Lindsy
Posted

I don't personally but just did a google on "Postural Orothostatic Tachycardia Syndrome celiac" and maybe this will help get you started.

I don't have POTS. But, I know that POTS can be from having faulty connective tissue. You might try looking up the Brighton Criteria to see if your daughter might have that.* If so, you might try asking others with POTS and bad collagen for advice. I'd try www.hypermobiity.org. There's a very helpful messageboard there!

*Keep in mind that several things may influence the testing results. For example, young children are generally flexible and therefore often aren't diagnosed until age . . .6 or 8 or so? Plus some variations in flexibility are from race, rather than defect, with Asians and then African Americans being most flexible of those studied. Women are more flexible than men, children more than adults. Still, this testing is more useful than not. And a good, informed rheumatologist should have a good idea of what's normal for one's age, race, and sex, though many aren't so informed on some connective tissue diagnoses and treaments.

Simona19 Collaborator
Simona19
Posted

Hi!

I have been just 2 months ago diagnosed with POTS. There are many reason for it. I didn't heard one about the hyper elasticity.

My cardiologist gave me a few pages from this site: Open Original Shared Link . I checked everything online (symptoms, causes, etc.)

In my case I have also problem with autonomic dysfunction. I don't have just POTS. I have also postprandial hypotension - low blood pressure after food or water. It looks like problem with parasympathetic nervous system.

I have appointment with a new neurologist- specialist in New York Presbyterian Hospital in January because in my case, nobody knows what is causing my POTS. All common things had been ruled out. Doctors are puzzled. Pills that I tried had no effect, or I had very bad reaction to them. I hope that somebody will find the cause for my POTS, or some pill that will work. I hope.

How severe is yours daughter's POTS? Did she had a Tilt table test? Doctors can prescribe beta-blockers, if it's milder. She needs to drink a lot of water(or Gatorade with plenty of sodium) and eat salty foods (if I feel very bad, I will eat salty potato chips). Also colder weather can help. Our body will raise blood pressure in colder environment. How old is your daughter? I had just Tachycardia when I was 19 and then Beta-blockers helped me.

I'm on gluten and casein free diet for year and half, but my POTS got worse.

kate12345 Apprentice
kate12345
Posted
  • Author

I should have been clearer. I am the one that has it, not my daughter. I am wondering since they are testing her for celiac, if it may be my problem too. I also have Hashimotos. Cause of POTS was never determined. Lyme was ruled out multiple times. In fact I think everything was ruled out except celiac. I never saw testing for that. I do take a beta blocker, and it helps. But it is a band aid. We are all going gluten free and believe it or not my daughter is already doing much better. It has only been 3 days, is that possible? Every now and then she complains about her stomach but it is nothing like before. She is actually playing by herself again and not as clingy. This would just be a miracle if it would help us all. I read somewhere that if the biopsy turns up neg, and the IgG is positive that it is gluten intolerance.

Funny thing is is that no one is complaining about this gluten free diet or what they can/can't have. Maybe it is too early, but I guess when you get to a certain point health wise, you embrace it.

Thanks, Jennifer

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