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Peripheral Neuropathy....

EBsMom

By EBsMom
in Related Issues & Disorders

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EBsMom Apprentice
EBsMom
Posted

I've been having numbness in some odd places - my right mid-forearm down through the hand, my left hand, my left shin and ankle, and the left side of my back. It's always there, though usually worse in the evening, better in the morning. I've had a little numbness and tingling in my hands for a year or so, but it's never been very bad, so I ignored it. Now that I'm gluten-free/cf, it seems to be worse - ? I have a Dr's appointment scheduled for the week after next, and I'll be sure to tell him about it. Does this sound like peripheral neuropathy? Are there any specific blood tests (nutritional panel, ect.) that I should request my Dr. to run? Are there any supplements I might look at taking (I'm taking a gluten-free multivite...plannning to start probiotics this week.) Any thoughts are welcome!

Rho

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dadoffiveboys Rookie
dadoffiveboys
Posted
I've been having numbness in some odd places - my right mid-forearm down through the hand, my left hand, my left shin and ankle, and the left side of my back. It's always there, though usually worse in the evening, better in the morning. I've had a little numbness and tingling in my hands for a year or so, but it's never been very bad, so I ignored it. Now that I'm gluten-free/cf, it seems to be worse - ? I have a Dr's appointment scheduled for the week after next, and I'll be sure to tell him about it. Does this sound like peripheral neuropathy? Are there any specific blood tests (nutritional panel, ect.) that I should request my Dr. to run? Are there any supplements I might look at taking (I'm taking a gluten-free multivite...plannning to start probiotics this week.) Any thoughts are welcome!

Rho

I would recommend checking for Folic Acid deficiency. My father had a bad case of peripheral neuropathy (diagnosed by a neurologist) and a deficiency in folic acid. This affects the amino acids that make up the nerve cells or something like that. It takes MONTHS to recover the damage as nerve cells heal very slowly. Also I noticed if oyu go gluten-free/CF and make a mistake.. then you get it MUCH WORSE (it seems) although I'm not really sure it is.. you will probably have to stick with the diet for at least 6 months to really see improvements :(.. I wish it would go faster but my experience is no. My dad has been free 6 months now and he no longer has what you would call neuropathy - he also had sleep problems with it which are better as well.

DrMom Apprentice
DrMom
Posted

Please explain to your physician what has been happening. He will probably do quite a few blood tests, hopefully including vit B levels, especially B6 and B12. Do not change your medications meanwhile. Good luck

DrMom

GeoffCJ Enthusiast
GeoffCJ
Posted

Neuropathy was one of my big symptoms before diagnosis. Since going gluten-free, it has seemed at times to get better, then worse than I remembered, then better, then worse.... Frustrating. I've been taking B12, but perhaps I should look at Folic Acid too.

Geoff

lorka150 Collaborator
lorka150
Posted

I was diagnosed with Peripheral Neuropathy due to celiac disease from my neurologist. The longer you are gluten free, the better you will feel.

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      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
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      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
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      Shingles - Could It Be Related to Gluten/ Celiac

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      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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