Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Neuropathy


JanaC

Recommended Posts

JanaC Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



adab8ca Enthusiast

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 Newbie

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 Collaborator

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 Newbie

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 Collaborator

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 Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,101
    • Most Online (within 30 mins)
      7,748

    Stuartpope
    Newest Member
    Stuartpope
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.4k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      ome value? Is that a typo? I don't see that on any of the test results you post and I've never heard of that one.
    • Scott Adams
      Thanks for the update! It’s great that your GI is being thorough with the follow-up testing—hopefully the endoscopy will give you clearer answers. The EPI diagnosis is interesting; I’ve read that celiac can sometimes lead to pancreatic issues like EPI due to long-term malabsorption or autoimmune overlap. Have they mentioned if your EPI might improve with a gluten-free diet if celiac is confirmed? Wishing you smooth sailing with the endoscopy tomorrow—let us know how it goes.
    • Brown42186
      Hi again! I just wanted to update here that the GI redid my bloodwork and the ome value is still high so I'm having an endoscopy tomorrow. I also got diagnosed with EPI which seems to possibly be linked to celiac according to Google.
    • Liquid lunch
      Reishi and cordyceps are immune modulators, they stop you reacting so much/producing antibodies to lectins. Uptake is better when taken as a tincture, you can buy it pre made as a tincture, usually vodka based, or make your own which is much cheaper. You can find instructions online, basically powdered mushrooms soaked in strong alcohol for a month, shaking regularly. Then the strained mushrooms are heated gently in water for 8 hours, strained again and the water then combined with the first alcohol extract. Some of the properties are water soluble, others require alcohol for extraction. It’s also prescribed for fatigue which is a side effect I’m happy to put up with.
    • Bebygirl01
      corn: It is the second most commonly genetically modified food on the planet (soy is #1) Genetic modification of foods continues to kill animals in scientific studies. It is an incomplete protein. It is difficult for humans to digest (ever see corn in your stool?) It is high in calories and low in nutrient value It is a new food to the human genome. It is being used as a staple food for our cattle, fish, chicken, and cars. Cows and fish are not designed to eat grain. (Have you ever seen a fish jump out of a lake into a corn field for supper?) When animals eat corn as a staple they have shorter life spans. Corn fed beef is linked to heart disease, diabetes, cancer, and obesity. Grass fed beef is not. Fructose derived from corn is toxic to the liver and contributes to severe health issues. Corn syrup has mercury in it. The list can go on and on and on… Many consumers bow to the alter of “Gluten Free” packaged foods as if the label is a safety net. “Gluten Free” on the package does not mean that the food is healthy. Do not deny yourself the God given right to be healthy.
×
×
  • Create New...