Scary celiac neuropathy symptoms

[Lexl]

I was diagnosed last December with celiac disease by my neurologist based on very high antibody titers and severe peripheral neuropathy without another known cause (had normal MRI brain/spine with contrast, normal lumbar puncture, and a hundred other labs normal). It took over 3 years to get the neuropathy diagnosis right since the first neurologist misinterpreted an EMG and told me I had something completely different. In that time I steadily declined. Now my feet are floppy and I've got loss of sensation in my fingers. I'm 33 and in otherwise good health, so I hate to think of years more progression.

My question is, for those with celiac neuropathy, do you ever experience a sudden onset of your neuropathic symptoms? For example, a couple weeks ago the entire left side of my body from face to feet went suddenly tingly and burning and it got a bit better but has not resolved; not sure if I ate something I shouldn't by accident. This sounds more like central than peripheral neuropathy to me, but my neurologist insists it's just a weird presentation (fyi, this is how my neuropathy presents for years but usually it slowly fades over a couple days, and I already had rare forms of stroke ruled out.) Its highly unsettling though and would like to know I'm not alone.

[Ennis-TX]

11 minutes ago, Lexl said:

I was diagnosed last December with celiac disease by my neurologist based on very high antibody titers and severe peripheral neuropathy without another known cause (had normal MRI brain/spine with contrast, normal lumbar puncture, and a hundred other labs normal). It took over 3 years to get the neuropathy diagnosis right since the first neurologist misinterpreted an EMG and told me I had something completely different. In that time I steadily declined. Now my feet are floppy and I've got loss of sensation in my fingers. I'm 33 and in otherwise good health, so I hate to think of years more progression.

My question is, for those with celiac neuropathy, do you ever experience a sudden onset of your neuropathic symptoms? For example, a couple weeks ago the entire left side of my body from face to feet went suddenly tingly and burning and it got a bit better but has not resolved; not sure if I ate something I shouldn't by accident. This sounds more like central than peripheral neuropathy to me, but my neurologist insists it's just a weird presentation (fyi, this is how my neuropathy presents for years but usually it slowly fades over a couple days, and I already had rare forms of stroke ruled out.) Its highly unsettling though and would like to know I'm not alone.

For me the peripheral neuropathy was linked to Gluten Ataxia which will cause to issues your mentioned and then some, and yes, some times cross contamination of certain types of gluten or a certain amount hit a tipping point with me. Like complete motor control loss on the floor....sometimes with vomiting. Normally slight cross contamination with flour dust on something from the store, or one of those rare cases with a shared facility I will get less feeling, like pick up a hot pan out of the oven and not feel it, drink 170-180F coffee and not realized I burned myself, cut my hand and not feel it, etc. Most mine is heat surface nerves and hot/cold issues. Sometimes simple constant dropping stuff as I can not feel pressure right.

It fades over days but has always lingered, it has gotten better the past few years....that annoying sense of pain is back and I can feel hot and cold again to some degree. But a bit of positive side about it, I sometimes get sick from some other food issues....I blame gluten....then realize the ataxia is not present so it must be something else.