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?