Celiac Disease and Small Fiber Neuropathy

[CookiesGem]

For over a year I had pain and tingling numbness in both arms and on the outer thighs. After being sent to Duke University Hospital and testing including skin biopsies it was determined to be SMALL FIBER NEUROPATHY.  Genetic testing done on the samples determined that the cause is Celiac disease.  Has anyone else heard of this or experienced it? Now I am so strict about Gluten but the small fiber (large problem) neuropathy has spread and at times pain is unbearable.  I think if people were aware of the many facets of this Celiac disease they would find empathy and better compliance for those who suffer. 

[trents]

Welcome to the forum, CookiesGem!

Genetic testing cannot be used to establish celiac disease. It can be used to establish that you have the potential for celiac disease. About 40% of the population carries one or more of the genes tied to celiac disease but only about 1% of the population actually develops celiac disease. It takes a combination of genetic potential plus some triggering stress event (such as a viral infection) to activate the genes.

Celiac disease is diagnosed with antibody testing and/or biopsy of the small bowel lining. Have you had either or both of these done? In addition to that, a minority of those with celiac disease also develop a distinctive skin rash known as dermatitis herpetiformis (DH), for which celiac disease is the only known cause. Do you have DH?

[NanceK]

Hi CookiesGem,

Yes, my small fiber neuropathy and osteoporosis were caused by silent celiac disease.  Blood tests run by my endocrinologist confirmed celiac disease, and further labs by neurologist also confirmed celiac disease. He did a skin/nerve punch biopsy (ankle and hip areas), which confirmed the small fiber neuropathy. Genetic testing, as far as I know, is not done on skin biopsies for celiac disease only blood tests(?). I was then referred to a GI specialist to have the upper endoscopy with biopsy of small intestine, which sealed the diagnosis. I do still have the SFN, but it is better. Osteoporosis, unfortunately, has not reversed yet nor do I think it will. It’s been several years since diagnosis. And I agree with you that celiac disease should be taken more seriously and can really mess you up if not! Some family members still do not understand my diagnosis and think I’m too dedicated to the diet and can cheat once in a while (frustrating), but my adult son did get tested and is negative for celiac disease. He did not have genetic testing, however. Good luck in your journey. I wish you well!

[Scott Adams]

We have a category on Celiac.com where we've summarized the studies on celiac disease and neuropathy here in case you'd like to find out more:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

[Wheatwacked]

Peripheral nerves are susceptible to damage by a wide array of toxins, medications, and vitamin deficiencies. Particularly vitamin d, Thiamine, B12, B6, and Choline.

Peripheral Neuropathy Due to Vitamin Deficiency, Toxins, and Medications

CDP-choline and its endogenous metabolites, cytidine and choline, promote the nerve regeneration and improve the functional recovery of injured rat sciatic nerves

[knitty kitty]

I had neuropathy from my toes to thighs, and in my hands and arms.  I even managed to scald my hands by hot water while washing dishes.  My hands were so affected I couldn't tell the temperature of the water.  I couldn't knit or embroider because I couldn't feel the needles.  

I took a combination of Thiamine, Pyridoxine, and Cobalamine (Vitamins B 1, B 6, and B12) and my neuropathy began to improve.  I don't have any residual tingling nor pain.  These vitamins together have been shown to alleviate pain, and heal damaged nerves.

Celiac Disease affects the absorption of vitamins and minerals from food.  Doctors seem to ignore these micronutrients deficiencies that occur in Celiac Disease.  Doctors routinely check only for B12 and Vitamin D deficiencies.  These are the only two vitamins that can be stored in the liver for longer periods of time.  Doctors don't routinely test for other vitamin deficiencies because blood levels do not reflect deficiencies.  Deficiency symptoms can occur before blood levels change.  Blood levels may remain within "normal" levels while the vitamin deficiencies occur in organs and tissues like muscles.  

Do talk to your doctor or a nutritionist about supplementing with the eight essential B vitamins, Vitamins C and D, and minerals like magnesium and calcium while healing.  

References:

Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review

https://pubmed.ncbi.nlm.nih.gov/35156556/

The Role of Neurotropic B Vitamins in Nerve Regeneration

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8294980/

Mitochondrial damage and "plugging" of transport selectively in myelinated, small-diameter axons are major early events in peripheral neuroinflammation

https://pubmed.ncbi.nlm.nih.gov/29486771/