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Old 09-15-2019, 07:23 AM #31
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Quote:
Originally Posted by gert View Post
it says in that report
alpha lipoic acid, offers little benefit

This what the article actually says about ALA:

"However, they have shown a moderate benefit in terms of pain reduction[132]. In a randomized double-blinded trial, ALA-treated patients reported a greater reduction in neuropathic pain when compared to placebo-treated subjects[122]."
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Old 09-26-2019, 11:25 PM #32
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anyone has any experience with gluten sensitivity and PN? I did a celiac profile test recently and found was high in gluten antibodies (deameditated gliadin), suggeting some kind of gluten intolerance..

I will go on a gluten free diet to see if it helps my PN symptoms
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Old 09-27-2019, 12:09 AM #33
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Abnormally high levels of antibodies specific for gliadin can indicate coeliac disease, which is an autoimmune disease of the gut.

This can be associated with PN.

See, for example Serology of celiac disease in gluten sensitive ataxia or neuropathy; Role of deamidated gliadin Antibody .
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Old 09-30-2019, 10:19 AM #34
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Quote:
Originally Posted by kiwi33 View Post
Abnormally high levels of antibodies specific for gliadin can indicate coeliac disease, which is an autoimmune disease of the gut.

This can be associated with PN.

See, for example Serology of celiac disease in gluten sensitive ataxia or neuropathy; Role of deamidated gliadin Antibody .
It took me a while to figure out that what you call coleliac disease in the British commonwealth is called Celiac disease here in North America
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Old 12-04-2019, 09:32 AM #35
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Default What do you eat?

That's one thing you should really really consider. My wellness doctor says Nothing white, Nothing out of a box, bag or carton, no dairy, no sugar, no night shade vegetables, as they all contribute to inflammation. Not a good thing. It might be worth considering, as thus far, my diet plus my organic vegetable deprived supplements have helped my neuropathy symptoms.
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Old 12-13-2019, 09:38 PM #36
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Two supplements I've used and posted about here are:

Inosine and Sphingolin and I've been off them for a while but have them on order to go on for a while again. You can do a search on them and give one or both a 3 month trial at least.

If it burns and tingles, it's neuropathy, don't need a doc for this dx. I've never talked to a doc about it as I've read enough here and now what I am dealing with. Gluten is a good thing to get rid of period.
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Old 01-19-2020, 12:35 AM #37
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Frankly I find this forum more helpful than the doctors. Both my Primary Care Physician and neurologist are clueless after a battery of blood tests, EMGs and MRI. The only positive result was the Celiac IGG Deamidated Gliadin antibody test which was 5 times the normal (it was 77.5 and normal should be below 15). And my PCP says it could be a false positive!
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Old 01-30-2020, 02:41 PM #38
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Ok , other than gluten sensitivity and allopurinol for my gout, I have found no other cause for my neuropathy. Here are the tests I have done so far:

1) B- Vitamins and thyroid - normal
2) Celaic antibodies - high demidated gliadin
3) autoimmune - Lupus and rheumatiod arthritis antibodies - normal
4) cervical MRI- normal
5) EMG - normal

Any other tests you guys suggest?
- Skin biopsy?
- Brain MRI for MS ?

Thanks
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Old 08-16-2020, 08:00 AM #39
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Ok Folks.. Update on my suspected SFN so far..

Some days are good (hardly any symptoms), some days are not so good(The burning,tingling, pins and needles). Have done a battery of blood tests (including celiac panel, rheumatoid A), MRI and Nerve Conduction tests. Nothing conclusive, except one of the gluten antibodies (dimedidated gliadin IGG) being high. So, on a gluten free diet for the last 10 months and diary free for about a month or so. So far, as you can see mixed results . My supplement regime is as follows : 600mg R - Alpha Lipoic Acid, 1000mg Acetyl- l- carnitine, 1000mg Omega 3 fish oil, 300mg Benfotiamine B1 , 2000mcg B12 methylcobalamine

Has anyone tried the Protocol 525?

Next steps : don't really know
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Old 08-16-2020, 01:25 PM #40
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I believe what you are going thru is a part of the neuropathy issue, some days better, some days harder...why, who knows, foods, and what we've done during the day etc but with the nerve damage and many with dead nerves, which I have, it's one day at a time.

And I've gotten into using a lot of various type topicals and this helps for me. Along with all my supplements and big sugar reduction, carbs too.... c
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