Mydoggielovesme2 Posted April 7, 2013 Report Share Posted April 7, 2013 Hi All, A week of rest at a beautiful lake in Az after a wk at Mayo was wonderful. But I am glad to be home. Thought I'd give you an update on finally test results and recommendations. POTS is now labeled, Hpyeradenergic. Low blood volume. Celiac disease. Extremely low sodium levels(which really floored me, I was just positive I was getting enough salt). No mast cell. Dr Goodman says hyper pots and mast cell have several things in common, such as flushing. The celiac was a complete surprise. I have been complaining to local Drs for two or more years about stomach- bowel issues. Dr Goodman picked right up on it the first day! Biopsies confirmed it. I know we talk a lot on the forum about causes of dysautonomia and what part autoimmune disease plays into it. one thing I know, pots symptoms were first, but my body is breaking down now. Fortunately I can help it by diet and exercise. (Any gluten free recipes appreciated) Dr Godman, and Dr Harris would like me to return in 3 months if possible.As for the low sodium, their recommendation is pedialite, GU tabs, or Nuun tabs.If anyone has questions, feel free to ask. Quote Link to comment Share on other sites More sharing options...
issie Posted April 7, 2013 Report Share Posted April 7, 2013 Glad you enjoyed AZ and got some answers. You have a better direction now. It's nice to have some of the big questions answered --isn't it?Issie Quote Link to comment Share on other sites More sharing options...
LMG Posted April 7, 2013 Report Share Posted April 7, 2013 Great that you have answers and a direction! How did they determine low sodium- I am guessing not through a routine blood chem panel? Also, did they suggest florinef for the low blood vol and low sodium? Low blood volume diagnosed by a test? And finally, what amount of exercise did they suggest? Thanks, and again it sounds so promising for you!! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 7, 2013 Report Share Posted April 7, 2013 Celiac can be associated with (cause?) Small Fiber Neuropathy. Did they say anything about that? Quote Link to comment Share on other sites More sharing options...
Joann Posted April 7, 2013 Report Share Posted April 7, 2013 So what are they suggesting you do for the next three months. Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted April 7, 2013 Author Report Share Posted April 7, 2013 Low sodium is tested with 24 hr urine. I am really not sure how they tested for the low blood volume. I will ask my husband if he knows. DrGoodman decided not to put me on any meds at this time. Since they found the celiac, he wants me to do the glutton free diet first and see how that affects the pots, and of course increase the sodium. As for exercise, He said to stop PT, and get a recumbent bike for home. He said it is imparitive to exercise DAILY. No matter how you feel, to try to do some. He said it is the ONLY true help for pots. Not that there won't be relapses, but with perseverance and time I should see improvement. Celiac is an autoimmune disease. I was not tested this time for small fiber neuropathy. I just know that I did not have this problem until a few years ago, after pots. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 7, 2013 Report Share Posted April 7, 2013 It sounds like you have a plan!! Good for you!! I'm curious what labs they did for your celiac and which ones were high. I did not have the "usual" labs high, the tTg and anti-endomysial. I did, however, have 4x high deaminated antigliadin IgA. Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted April 8, 2013 Author Report Share Posted April 8, 2013 Hi Sue, these are the names of the tests: Gliadin IgG, Gliagin IgA, and Tissue Transglut IgA Ab Hope this helps. Quote Link to comment Share on other sites More sharing options...
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