Posted 19 November 2011 - 02:15 AM
Posted 19 November 2011 - 02:31 AM
Posted 20 November 2011 - 04:08 PM
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.
Posted 21 November 2011 - 05:38 AM
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: http://www.dinet.org...an_overview.htm . 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.
Posted 21 November 2011 - 05:57 AM
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.
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