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Neuropathy And Celiac

mela14

By mela14
in Coping with Celiac Disease

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mela14 Enthusiast
mela14
Posted

I went to a new PCP yesterday because of burning that I have been having in my legs. It has been getting really bad lately and in addition it has been happening more and more in other parts of my body. At first I thought it was just muscle reactions to accidentally eating gluten.

As most of you now I have been having a lot of challenges getting my diet sorted out with all the other food intolerances and have not been able to put on any more weight. I put on about 3 lbs but that's it!

I've been working really hard with the nutritionist at Columbia Presbyterian but have not been taking any vitamins because so many of them casue me problems with the additives, etc.

I explained all this and more to this new dr. At least he was on board with the celiac problem and feels that although my biopsy was neg he is pretty sure that i have it. when I told him the reason for me being there was the burning, sizzling, tingling that I have been getting in my legs .....which has now gotten really bad in my arms too. I also have a sizzling going down my right neck that becomes unbearable at times. He said that what i have is a neuropathy....so let's add that to the list too! He said the neuropathy cold be coming for vitamin deficiencies so he sent me for blood tests this morning. has anyone else had this and what's helped? He said that if I look ok nutritionally then we have to look at taking some type of antidepressant to calm down the "fired up nerves!"...which I really don't want to do. I don't do well with drugs! He suggested elavil but i remember not doing well with it a few years ago. I also tried nortryptaline....but that just made me loose my hair and I had to go off of it.(something I won't sacrifice for the meds!)

I had my hubby give me a shot of b-12 tonight just for a boost but am not sure it will even help at this point. The burning is really bad..........and it is scaring me! I have to wait for the results...and am afraid that they results won't show any deficiencies. I had vit levels run about 5 months ago and they were all fine.

I was referred by columbia Presbyterian to a compounding pharmacist who I spoke with today on the phone. He is sending me Calcium (powder to mix with water)...for the osteoporosis that i have, a multi, and a b complex. all are gluten-free and also free of other allergens. I am excited to be getting them and hope that I will be able to tolerate them. I know I NEED to take vitamins as my diet is pretty limited and I am sure that I am not getting enough nutrition....even though previous blood work looked ok!

Even if the test results come back ok......I have to say that I just don't feel right..........between the sizzling, fatigue, muscle burning and pain...something is wrong. has anyone had this happen to them? and what did you do? I know that vit def are common among celiacs.........I'm just upset that if this is what it is....that it got to this point! I'm stressed over being my own dr....It just takes me too long to figure things out with the limited amount of medical knowledge that I have. :angry:

Any thoughts? <_<

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