I can't get diagnosed--neuropathy
 

Hi,

About a year ago, I started to feel tingling in my face after eating which moved to my arms, then rested in my legs. Sensations changed from tingling to crawling to burning in my shins and feet. The intensity diminished throughout the year and basically settled to where I feel it almost systemically. I had MRIs of everything, blood tests, EMGs, and even an endoscopy. Everything came out normal, including B12, glucose, etc. The only slight find was an existence of anti-glaidines which caused my neurologist to think I had celiac disease or a wheat allergey (and therefore celiac neuropathy which I understand is rare but possible). I went to a gastroenterologist and had an endoscopy after being gluten free for a month. It turned out negative so no celiac according to them.

Now I'm at a loss, still with the neuropathy that, while not severe, is enough to really bother me. Worst of all is the lack of closure and lingering thoughts that something else is wrong. I have no weakness and the only other symptom (related or unrelated) is pressure behind my eyes. However, that foggy feeling may be due to the neurontin medication I'm taking to take the edge off of the neuropathy.

Anybody have any other ideas? Thanks.

P.S. I'm an otherwise healthy 35 year old male.

oy!...you need to go check out our gluten sensitivity forum....just scroll down you will find it.....and click on "the gluten file".....no doubt you testing wasnt complete....and the diet trial wasnt long enough.....especially for neuro sx...good luck

One: get a copy of your "normal" lab report, and check the actual number for your B12 level. Neurological symptoms can present with levels as high as 400, yet lab lows are typically set around 150. You want to be sure you are in the upper quarter of range or over the top. I had many many B12 deficiency symptoms with a NORMAL level of 294.
http://jccglutenfree.googlepages.com...ciencysymptoms

Also, other nutritional deficiency can cause PN, including vitamin B1, B6 and E. And gluten sensitivity, defined by the presence of antigliadin antibodies, can cause neurological disease even in the absence of biopsy proven celiac disease. This is a point of contention in current medicine, but the research on it is ongoing and seems to be proving its case.

Here are pages from the gluten file that are especially pertinent for you.

http://jccglutenfree.googlepages.com...ationsofgluten

http://jccglutenfree.googlepages.com...eralneuropathy

http://jccglutenfree.googlepages.com/diagnostictesting

http://jccglutenfree.googlepages.com...niggantibodies

http://jccglutenfree.googlepages.com...sceliacdisease

Chances are you may have had a negative biopsy anyway, even with a gluten containing diet, because antigliadin antibodies are not as highly associated with villous atrophy as the anti-tTG (main celiac test), but one should be eating gluten for at least 6-8 weeks prior to endoscopy. Now you don't know for sure whether that biopsy result was accurate... but no matter... I would take your positive antigliadin antibodies as meaningful and continue with a gluten free diet, as well as take supplements that may be useful for PN. People on the Peripheral Neuropathy board can fill you in on what to include, but certainly B vitamins, E, and there are others frequently used.

You are lucky to have a neurologist who at least knew to check for antigliadin antibodies. The problem is that neurologists need to take "ownership" of gluten related neurological disease. Once they turn it over the the GI's... the ball is dropped... because GI's are only concerned with whether one shows villous atrophy on biopsy. This is important to know, too, so the biopsy is warranted, but a negative biopsy should not end the story. You can have gluten related neurological disease without showing celiac disease on biopsy!!! All of the pertinent references can be found in the links I left above.

I happened across this article today and remembered this post... if neurocitizen ever returns~

eMedicine on nutritional neuropathy
http://emedicine.medscape.com/article/1171558-overview

Thank you everyone
 

I really appreciate all of your feedback. This is the most help I've received on the topic even after going to several doctors.

My neurologist is great but when he found the antiglaidines he basically said that he couldn't help me anymore and that I needed to see a GI doctor. Frankly, the GI guy doesn't seem to have a clue, particularly with anything related to neuropathy.

I've been on B12 supplements for a year. I haven't tried E and will go ahead and do so. I stopped taking B6 because my neurologist said too much B6 can actually cause neuropathy. Should I go back to the B complex supplement?

Finally, one think my endoscopy showed was mild "inflamation" and mild blunting. Anyone know what this means?

Thanks again. This is all very frustrating and the nagging thought that something serious could be wrong is always there.