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Family POTS


cattale
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HI everyone, i'm Cattale. I have many questions, but i'll start with a reader's digest version of our story. My 3 daughters and myself were all diagnosed with Ehlers-Danlos type III by a geneticist, but other things were happening to us that still was unclear. I am the sickest out of the bunch, but my middle daughter is a strong second. I'm going through testing now for POTS, but I would feel much better having this done by someone who is familiar with it. I already see University doctors, but they move like molassess here in Florida! In the last 7 years, the only way we have been surviving from our symptoms is a dairy, wheat, gluten free diet and lots of rest. My question to anyone out there is: Are your hypersensitivities so bad your allergic to almost everything? It's to the point, I cannot eat anything, smell anything, or be outside for a long duration. Please tell me the can lessen the hypersensitivities? I've been reading alot here, and it seems that I finally may have found people like us, if this is true? I couldn't be more relieved or happy. Thanks for your ears, everyone else thinks i'm nuts! :):angry:

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Hello and welcome! I continue to be amazed at the number of people who find this board who have multiple food/chemical sensitivities, and it seems as though dairy and wheat/gluten are the two most common.

I have suffered from food sensitivities for 10 years, but it took the doctors 6 years fo find out what was causing my gut problems. I try to stay away from dairy, wheat/gluten, and eggs. Which pretty much leaves nothing...or so it seems. I have really gotten into specialty cooking and learning what I can and cannot eat. Sticking to the diet is a whole different story :)

I also live in Florida (whereabouts are you?) and having just moved here, I am going to be seeing a new cardiologist in Clearwater next month. He was recommended to me by the Florida Dysautonomia Support Group. I am curious to see what he has to say, as I had been with the same doctor where I moved from for 3 years and did not feel as though I got 100% correct treatment for POTS.

Here at DINET we will never think you are nuts :( Most of us have been through similar situations and can relate, that's what makes it so wonderful to be here! I am sorry that you and your daughters have to cope with these chronic illnesses, but I am glad you found this site and hope to see you often :angry:

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ditto what jess said...

welcome...

i am glad that you found this site....and we won't ever think you're nuts!

i was broken-hearted though hearing that all 4 of you are sick with EDS and POTS...i cannot even imagine. how do you do it!?

as for food sensitivities...yes, definitely lots of us have them. i am still working on finding all of mine...but i know for absolute certain that i am sensitive to dairy and gluten/wheat and avoid them completely...my dr. believes that some folks even need to avoid them in the medications they take.

i still don't know how i do with eggs, soy, corn and some other things, but am working on it. and forget most any processed food. which really doesn't help when you have 4 mouths to feed, and all of you feel too miserable to be cooking and going to the grocery! eek!

anyway, just wanted to let you know we're here to support you and please keep posting your questions. sometimes there are so many posts at one time it is hard to keep up...if thathappens just "bump" it up if you feel that it didn't get enough attention!

i hope you will find support here as well as clues to how to help you feel better...how old are your daughters? the EDS and POTS connection is really interesting...

well, goodnight for now!

emily

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