Small Fiber Neuropathy??

[LIZARD66]

Hey, everyone.

I was dx'ed with celiac disease 15 years ago and have been devoutly gluten-free since Thanksgiving of '08. I was doing very well when I suddenly developed severe burning in my torso, arms, face, back, and on the tops of my thighs in December of '21 the day after my third Covid booster. The episodes lasted anywhere from a minute to an hour until I started Gabapentin about a month ago. They're less often now, less intense--usually--but I had several tests done, including EMGs on my legs and arms, an EEG, and an MRI, none of which have revealed any cause. I now know it's Small Fiber Neuropathy and am getting a skin punch biopsy to determine any other causes. I also had bloodwork that was negative for Lyme, Sarcoidosis, and Lupus. There is also no evidence of MS. Is this possibly from celiac disease, even though I avoid gluten? Gabapentin is slowly helping, but can anything else be done? TIA! 

[trents]

"Other causes of this condition include a metabolic disorder called Fabry disease, immune disorders such as celiac disease or Sjogren syndrome, an inflammatory condition called sarcoidosis, and human immunodeficiency virus (HIV) infection." https://en.wikipedia.org/wiki/Small_fiber_peripheral_neuropathy

Even when being faithful in our gluten free diet, celiac disease has long fingers. Eating gluten-free removes the trigger to celiac disease itself but does not correct the genetic flaw underlying the disease which ties into other autoimmune disorders.

[LIZARD66]

Thanks for this. I guess I'm just puzzled that the neuropathy would start after all this time if it really is from celiac disease. Could the Covid booster have kicked it into gear?

[trents]

8 hours ago, LIZARD66 said:

Thanks for this. I guess I'm just puzzled that the neuropathy would start after all this time if it really is from celiac disease. Could the Covid booster have kicked it into gear?

Wouldn't surprise me since we know that celiac disease itself must have a stress trigger to turn on the genes associated with it. We know that autoimmune disorders seem to cluster and that the genes for some of them are often located in the same area of the genome where the celaic disease genes are. I guess I see this as an extension of the process that started with celiac disease. I could be totally off target and I'm way out of my league here but those are my thoughts.

[LIZARD66]

I appreciate all the info. Thanks so much!  My neuro is scheduling the skin punch biopsy. As far as I know, that's all that's left to do. Would it possibly indicate if it's from celiac disease?

[trents]

For those celiacs who have the DH rash (Dermatitis Herpetiformis) we do know that they have celiac antibodies in the skin that will show up when a skin biopsy is done. In the absence of DH I would not expect a punch biopsy to reveal any connection to celiac disease. Again, I'm out of my league here so I could be totally wrong.

[LIZARD66]

I did have an episode of what I think was DH several years ago when I was contaminated. I had a seizure and woke up the next day to see a blotchy red rash all over my neck and chest. Curiously, I also get a blotchy rash after the neuropathy stops. It lasts several minutes and gives me a "prickly" itch.

[trents]

The distinguishing characteristic of DH is that the bumps have little blisters or pustules in them. When a biopsy is done for DH they should sample the tissue between the bumps and not on a bump. Many dermatologists don't know to do this correctly.

[knitty kitty]

Hi, @LIZARD66!

I had painful neuropathy which turned out to be caused by nutritional deficiencies.  Unfortunately my doctors were poorly educated about vitamins and minerals, and completely missed the real cause of my neuropathy.  

The Gluten free diet can be low in some vitamins and minerals.  In Celiac Disease, it's common to have nutritional deficiencies across the board in several nutrients, not just one. 

Deficiencies in B12, Thiamine, Niacin, B6 Pyridoxine, and Vitamin D can all result in neuropathy. 

My neuropathy resolved after I started supplementing with the eight essential B vitamins, Vitamin D and magnesium.  

Get checked for nutritional deficiencies BEFORE starting supplementation.  If you take vitamin supplements before testing, tests will reflect the supplements taken.  

Here's some articles I found helpful on my search for answers.

Nutritional Neuropathies

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

And...

Peripheral Neuropathy Due to Vitamin Deficiency, Toxins, and Medications

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/

And...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

The histopathological evaluation of small fiber neuropathy in patients with vitamin B12 deficiency

https://pubmed.ncbi.nlm.nih.gov/29052170/

And...

Current View of Diagnosing Small Fiber Neuropathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8075405/

And...

Association of Diabetic Peripheral Neuropathy with Vitamin D Levels Depends on Vitamin D Status

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8562010/

And...

Postgastrectomy polyneuropathy with thiamine deficiency is identical to beriberi neuropathy

https://pubmed.ncbi.nlm.nih.gov/15561484/

Hope this helps!

[LIZARD66]

Thank you. Everything's been checked. Some were even found to be high. I started taking everything after my celiac disease was dx'ed. My D was severely deficient in '07, before my celiac disease was dx'ed. I worked hard for years to get it to optimal and still take 20K iu daily, due to being on D depleting meds.