Presentations of Celiac Neuropathy

[Lexl]

I'll try to give a brief history before I ask my question to give some context.

About two and a half years ago I noticed myself feeling "unusual" after eating meals, particularly lunch. I would nearly faint or my vision quickly black out over a second or two after standing in particular that sent me to my primary care, thinking I had developed orthostatic hypotension at only 29 years old. Ran MRI and CT of my brain, and MRA of my carotids, did some labs, and all was well so he pretty much wrote me off. A few months later and the left side of my body from face to toes would feel weak and burn (but without actual weakness) in sudden bouts lasting a couple hours. Naturally I freaked out and went to the ER thinking in having a TIA, again at an unusually young age. Well everything was normal. This got worse and lasted longer, and when my foot began to get "floppy", I sought out a neurologist. He did some basic labs which were normal and an EMG that was borderline and thought I had CIDP. I sought a second opinion with a university neurology department, had a lumbar puncture and MS protocol MRI including down my spine, all normal, told I had idiopathic small fiber naturopathy. Sought a third opinion (now just over two years have elapsed since seeing my PCP due to long follow-up intervals) from a neurologist that's double board certified in this area, did a thorough lab workup, and DGP IgG was very high (otherwise the celiac panel was normal), and everything else under the sun was normal. He said "looks like you got celiac disease. Better clean out your pantry." By this time I thought I was losing my mind, my whole body would feel like hellfire for hours a day and my feet flopped and my hands dropped things randomly. After about a week of a gluten free diet the burning was 75% better. I accidentally ate a chik-fil-a sandwich driving home late 3 weeks into it, not thinking until after I ate it. My gut felt like something was ripping it open and my body burned for 5 straight days. Never forgot again. Also pretty much confirmed the diagnosis since I'm still waiting on my upper endoscopy. 

So the question is this: do those of you with celiac neuropathy tend to have random sudden onset of numb or weak sensation on the whole of one side of your body, that switches sides, even on the same day? Lately my cheek around my left side of the lip and my left side of my tongue got numb too. I ask my neurologist these things whenever I follow-up and his answer is always "small fiber neuropathy causes all kinds of weird symptoms". I know what peripheral neuropathy is supposed to present as, but these autoimmune neuropathies don't seem to follow any rules. By the way, the burning and orthostatic hypotension are pretty much gone now on a gluten free diet for 5 months. The feet ate still floppy though.

[Mater Maker]

My neuropathy is in the extremities, but the burning sensation is through my entire body.  I had negative blood tests for Celiac.  Since going gluten free the burning has disappeared with the exception of being accidentally glutened, UGH.  When that happens my vision collapses along with itchy bumps and hives and the burning comes raging back.  Nearly intolerable.  The tingling and numbness in my hands and feet are still present, but do vary a bit.  My entire life has been a struggle until I discovered my problem when I was 47.  Some of the neuropathy, I am afraid, is permanent in my case. 

[Ennis-TX]

Mine is numbness mostly, lack of heat sensitivities in my hands to the point of picking up pans out of the oven and having to hold them til I feel deep tissue heat. I do not notice cuts, burns, etc. I do randomly drop stuff even with minor CC below 20ppm I get more numbness and randomly drop stuff. I have with full on gluten food exposure twice in the past 5 years lost full motor control below the neck and collapsed. I have and the "floppy feet" thing.....last year it amusingly happened on the stairs and I rode them down on my back side...did not really make much of a link to it.
I also have lack of heat sensitivity in my mouth. I had to get a EMBER temperature control mug and a thermometer for food....I do not feel food is "warm to eat" I have caught myself drinking beverages in excess of 170F and eating food at 180F and not noticing it was "Hot" but just warm.......I often have to remind myself to check temperatures as to not hurt myself.

You might want to do some research into gluten ataxia, that is what I was told it is, I know my immune system attacks my brain and nervous system with gluten exposure. I used to get looping thoughts, forget how to do simple things and be stuck there looking at something knowing I should know how to work it....but cant. I suffered brain damage to the point where I can not calculate numbers, read other languages, and often now have this issue with stuff rearranging on me when reading sometimes, and have to step away. I lost my ability to do computer programing I even took 4 years of college for, I used to be able to speak Japanese and now sometimes even struggle with English.

[Lexl]

Fortunately it hasn't got that bad yet, and seems highly variable from person to person. I joke around though that I'll be going to work even if I have to crawl in after the amount of work I've put in it if it ever comes to that point, lol.

[RMJ]

I’m glad you found something that helps!  If you have been gluten free for 5 months your endoscopy may be normal, but I doubt that you will want to do a gluten challenge.