I have your same problem! I hope you received the e-mail message I sent you.
I have suffered from this same thing for 3 years. Just yesterday a neurologist (my 5th) diagnosed my problems as Hashimoto's neuropathy. The pain and "odd sensations" are HORRIBLE and scary.
We are now in the process of determining the best course of treatment. The possible treatments being discussed are IvIg, plasmapherisis, or immunosupressant like prednisone.
Let me know how you are doing!
Hey I have celiac disease and know a lot about gluten issues. Sadly, probably more than a lot of (especially older) doctors. Gluten intolerance can cause a lot of diverse issues. A lot of them are caused by malnutrition, but others have nothing to do with that, but more directly with the autoimmune response. I, myself, had dermatitis herpetiformis, which is the skin manifestation, but it is completely controlled with a gluten free diet. One of the main complications from continuing to consume gluten is lymphoma. I guess Hashimoto's might have a similar relationship. As with other autoimmune disorders, there is a higher rate of also having another autoimmune problem. There are also connections to other things, like an increased proportion of schizophrenics who have gluten problems
Here's my advice to you: Assuming your doc ran the right tests, I wouldn't be too worried if they're all negative. There is one test - for genetic markers - than can rule gluten intolerance out. On the other hand, I wouldn't let the doc brush it off if you have "slightly elevated" results or if he says it's impossible because you don't have gut issues, or you're overweight, or anything like that. As long as you're done getting tested, there is no harm in following a gluten free diet. However, it is a commitment and requires 100% devotion.
I just realized you posted 8 months ago...but if you're still around let us know what happened.
Thank you for taking the time to reply to me.
I pretty much came to the same conclusion actually!
I tried going GF for about 3 months in the end and I have to say I didn't notice any difference at all - I'm guessing I would, right?
I was very strict about it too - cleared out all the kitchen cupboards and started over with everything so I am sure I wasn't contaminating myself.
All my tests were negative so I am happy with that at the moment.
I found out last week I am vitamin D deficient - so I am hoping that might be another part of the puzzle.
I typed the LONGEST post to you yesterday. I do not see it posted on here, so I cannot figure out if I sent you a private message instead of a post. Did you get anything from me?
Yes, I got your message, no worries - I had a really busy day yesterday (tests!) so will be replying to it later on today ;-)