Originally Posted by fingertingler

Hi,
I've been dealing with peripheral neuropathy symptoms for nearly 3 years. It started as loss of sensation in the top of my right foot. This would come and go for periods of days to several weeks. I've had similar feelings in my left foot but much more intermittent. Recently my fingers have been experiencing numbness, burning, and extreme pain. The right side of my face and my tongue are also sometimes numb. My toes and feet have now also been giving me the same numb, burning and painful feelings.

This has been misdiagnosed as back issues. As the feelings got worse in my hands and face however I've had a spine specialist and neurologist now recently rule out my spine as the source.

I am a suspected celiac and have been on a gluten free diet for more than ten years. I have also been mostly dairy free for the past two years. My celiac disease was not properly diagnosed with a biopsy. I get too sick eating gluten to attempt a "gluten challenge" and get a true diagnosis.

My doctors have basically given up and are calling it an idiopathic neuropathy. I have not pushed the celiac connection with them to this point. They seem reluctant to believe that I am a celiac without a positive blood test.

Is there any reason to pursue a more refined diagnosis? I thought I read somewhere that immune system related neuropathy could be treated with immune suppression drugs. Is that correct and would it apply to celiac related neuropathy? I also experience extremely tight muscles in my feet, legs, hips, and back. Could that by connected to my PN?

Any help or thoughts would be appreciated.