I am in the midst of undergoing diagnostic tests. I have biopsy diagnosed celiac disease, "motor greater than sensory" peripheral neuropathy diagnosed via EMG, and possible epilepsy. The neuropathy might be secondary to celiac or something else, hence the testing.
I have many questions, but would like to start with this one first: does anyone else have peripheral neuropathy without pain? Mine is largely extreme tingling and tensing of my arms and legs, primarily in the evenings and in bed at night.

--though I am sorry for what brought you to us.

Neuropathy symptoms run the gamut. Many people report painful symptoms, especially if the small unmyelinated fibers that subsume the sensations of pain and temperature are affected, but other do not, especially if the nerves compromised are larger, myelinated nerves that subsume sensations such as vibration, mechanical touch, position sense, and motor functions.

And, yes, celiac/gluten sensitivity can lead to neuropathy, either through nutritional deficiency brought on by malabsoption of nutrients (particularly that of B vitamins and certain minerals) or directly through cross-reactivity of the antibodies with nerve epitopes.

Definitely take a look at our peripheral neuropathy and gluten/celiac forums:

http://neurotalk.psychcentral.com/forum20.html

http://neurotalk.psychcentral.com/fo...sprune=60&f=13

http://neurotalk.psychcentral.com/thread1872.html

Hi, There!

I am also a Celiac...and have experienced neuropathy like your symptoms, mostly at night...and yes, have had seizures, mostly partial seizures. I would like to know if you have been to a neurologist as yet? Even though my EEG did not dispose the seizures, according to my neurologist this is not unusual, especially in our disposition. Also, he/she might want to perform a MRI of the brain, which I would highly suggest.

Since we do have an autoimmune disease it opens up the chances of even more immune disease to develop. Although, I have now experienced a very rare brain tumor which is "idiopathic"...and I will be undergoing more testing this month to discern the additional immunities or other problems. I attend the Mayo Clinic because this is so rare, and am part of a Research Program.

Being gluten free has definitely helped many of my symptoms which were elevated liver enzymes, gall bladder dyskenesia (which has been removed due to pain), weight loss (I was over weight), and cholesterol normalcy. Unfortunately just being gluten free is not the only "answer" since many of us develop other immune systems as well.

The pain in your lower legs indicates a better look and I highly suggest with the seizures seeing a good neurologist soon. Wishing you the best!
Joanie

Hi, and thanks for the replies. I am glad to have found this forum! I will be very interested to read through the celiac and neuropathy posts.

I have had an MRI, and it showed no evidence of tumor or blood vessel malformations, but did show that white matter was infiltrating grey matter where it shouldn't be. I don't know what this means or implies (ie. does it support epilepsy, something else, or nothing). I do see an epileptologist, and another neurologist who specializes in neuromuscular issues did the EMG.

-I was diagnosed with celiac almost 4 years ago, and have been religiously gluten free with no cross-contamination issues (live alone, don't eat out, etc.).
-I was tentatively diagnosed with frontal lobe epilepsy 3 1/2 years ago due to frequent and at times severe nocturnal partial motor seizures but these episodes were never completely controlled. BUT as of 3 weeks ago I have been medication free (with doctor supervision) and episodes are not nearly as bad or as frequent - which leads me to wonder if these "seizures" are not seizures but something else that anti-seizure medication was making worse (any thoughts/ideas on this appreciated!). PNES was ruled out based on psych assessment and symptoms (ie. nocturnal, significant post-seizure effects, seizure type, etc.)
Joanie - you mention you have partial seizures (as well). What are yours like? Does medication help you?

Hi, JM...still trying to get used to this system...plus my memory is still not that "great" which doesn't help either....LOL!

About my seizures, first I would like to post one of the better links, if this system will let me to "partial seizures"...let's try...nope says I am too new yet..need to have more postings...sorry, but note info below.

..the reason I wanted to send this link is there is much in the partial seizure area...specifically it is on one side of the brain typically, mine being on the left temporal lobe and they are short usually in affecting anything. Mine were not always the same:
1. Scary strange feeling, fear was for no reason, very very tired, like when you are driving on a long long drive...at night...and you want to close your eyes and fall asleep...this happened the most...and I would "black out", but I would remember these
2. Would just stare ahead and lose time, and not remember, people actually told me about these
3. Could not say what I wanted to say, the wrong words would come out, this is actually more into another type of seizure called aphasia
4. My legs moving and jerking at night...and painful as well

Yes, my Keppra, actually the generic which I forget the name of...part of my memory issue...I could not possibly afford the "real" deal...it is over $400.00 per month on my insurance...told my neurologist and then he prescribed the generic for me, it does help. I have not had any seizures since my surgery.
I am thinking that removal of the tumor was the best cure on that because even though I was on the drug, I still had seizures until it was resected.

White matter in your MRI is indicative of my current biopsy. Do you have any liver enzyme elevations? Do you still have your gall bladder? Any eye or ear problems? How about your blood pressure??? Heart rate? Sinus problems? Headache?

Here is a report from my neuro surgeon concerning my first MRI that I would like to share, just so you can check compared to yours on this:

"The tumor seems to have a dural-based component, but it is very worrisome the T2
abnormalities surrounding the mass. The plan is to repeat an MRI of the head
with gadolinium with T1 stealth sequence and also GRE. We will make further
recommendations after the MRI. I discussed all this with Mrs. Pfeiffer. She
understood and agreed to proceed with the plan. I am also providing her a
prescription for levetiracetam generic per her request."

My understanding about the T2 abnormalities is they were the white matter; that is why I am sharing this with you, just to check and see if the MRI was done with the same sequences.

Hang in there...you are not alone...there is a lot of new help for us with Celiac Disease.

Joanie (I do have some great recipes to share with you too, if you would like.) I have learned to love Quinoa!