Neuropathy

[JanaC]

Hi, new to the forum. Does anyone out there have any experience with Celiac caused Neuropathy. The pain in my feet is almost unbearable. Any information would be appreciated.

[adab8ca]

HI and Welcome, although I am sorry you had to join us...

Re: neuropathy, YES That was my worst symptom. It was SO bad that I was sure I was going to end up in a wheelchair. It hurt so much that I would prop my legs on pillows so that my feet wouldn't have to touch the bed. It felt like ice picks were being jabbed into my heels. Along with excruciating pain, they were BURNING all the way up my shins, like I had shaved my legs every day for a month with a dull razor and no water or soap and then were beaten with a baseball bat.

Note that I say "was". Although I still have quite a bit of pain every day, I can manage with it. it actully comes and goes and I find now that if I am tired or stressed, it's like my nerves flare up and the pain is back...But I no longer think I will end up in a wheel chair and have resumed many of my regular activities. There are finally some good days again.

There are a few reasons that this happens. Common are vitamin deficiencies, B12 is a major one for nerves. In many other cases, they don't know what causes the neuropathy, it is an autoimmune response that the body attacks the nerves. I expect that this is me but going gluten-free has certainly helped it and hopefully slowed it's progression.

SOme supplements that I have tried (and honestly, I don't know if they helped or not)

R-ALA (alpha lipoic acid, the R-isomer).

Benfotiamine

B12, methylcobalamin, sublingual

If you have any questions at all, please holler. I really feel for you. Irishheart that is on this board will hopefully chime in as well, she has had the worst of it that I have ever heard of.

Ada

I also take massive doses of omega 3's (like 12 a day)

I know nerves are VERY slow to heal, so I take it one day at a time. I have been gluten-free for about 15 month, but my neuropathy seemed to come on quite suddenly (ie Feb 2010, slight timgling, August 2010-so much pain)

[JanaC]

Thanks so much for your response. My neuropathy also came on extremely quick. Right foot sore in July 11, to both feet and unable to walk in September. Having to take pain pills just to maintain. Also take amiltryptaline and Lyrica that seem to help somewhat. If anybody has experience with this please post. Thanks again.

[AVR1962]

Yes, I have had TERRIBLE burning in my feet, had these pins and needles poking feeling in between in my toes and fingers and even in my eyes which were very painful. I tried B12 that you can buy at the grocery store, no help. Tried a stronger B complex with no results, kept reading. Found out that B12 is hard to absorb into the system without mythl (which is short for a long name). I kept searching and found a product that has very good reviews for people suffering form nerve damage, and not just people who are deficient....people with MS and diabetes as well. So I gave it a try and it has helped me more than than anything else I have tried.

I use WSN Nerve Support Formula (4 daily) each contain thiamine- 103mg, Methyl B12- 1000 mg, B2- 2 mg, B6- 2 mg, folic acid- 100 mcg, B3- 250 IU for tingling in hands or feet, hot feet, anemia, nerve damage, neuropathy issues. This formula is not real cheap but I guarantee you it will work. Take it as they indicate. I am set up with a monthly plan and I get a discount for going that route.

For the pins and needles feeling I take L-carntitine, twice daily, which stops all the poking feelings.

By chance, are you having any problems with the sciatic nerve?

[JanaC]

No sciatic problems. Just the burning, stabbing pain in the feet. Also right hand that feels like arthritis in the knuckles. I am currently taking B supplements that my dietician suggested. How long before the pain subsided? Thanks so much for your response and information. Hope and pray this gets better soon.

[AVR1962]

  On 12/4/2011 at 3:20 PM, JanaC said:

No sciatic problems. Just the burning, stabbing pain in the feet. Also right hand that feels like arthritis in the knuckles. I am currently taking B supplements that my dietician suggested. How long before the pain subsided? Thanks so much for your response and information. Hope and pray this gets better soon.

When I finally got enough in my system, and I think that's why the others were not working for me, it took about 10 days before it went away. For me, I have tried twice now to cut back to half of the amounts and within 7-10 days the symptoms are back.

The arthritic pain in the knuckles? Is it a sharp quick pain or a swollen, inflammed pain? I have found BioSil drops have helped my old fractured knuckle on my hand. I would get really sharp pains thru it.

[JanaC]

Thanks so much for your help. I am going to try the WSN Nerve Formula. I assume it can be purchased online?

[AVR1962]

  On 12/5/2011 at 3:01 PM, JanaC said:

Thanks so much for your help. I am going to try the WSN Nerve Formula. I assume it can be purchased online?

Yes, I bought it thru Amazon. The company will send you a letter then offering any online advise, later they will send a letter with a reordering special. Plese let me know how this works for you.