Jump to content

  • 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

Peripheral Neuropathy

Hungrylady

By Hungrylady
in Coping with Celiac Disease

Recommended Posts

Hungrylady Rookie
Hungrylady
Posted

As part of this disease I have peripheral neuropathy. I wear braces and edema gloves to bed every single night since I got pregnant (5 1/2 years ago). I can't talk on the phone or use the mouse very long, etc....horrible pain and nerve shots, falls asleep, it's a mess. I am showing a tiny bit of improvement already so I am excited. I was looking up things I might be able to do to improve things more and came across using a tens unit. My hubby has one in the basement he used for his back a million years ago. So it is actually something I can try. Before I do I was wondering if anyone else has used it and did it improve your hands and if so how?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Before you try this can you get a consult with a PT? They could advise you on whether it might be something that would help and make sure you know how and how long to use it.

Something else that may help is sublingual B12. I don't know if you have had the levels checked but often blood levels read higher than they really are. B12 is not a vitamin you can 'OD' on so if you are not taking it try some. Don't be scared off by the high amount but do make sure they are gluten free and the sublingual not the swallowed pills.

Glad to hear the diet is helping but it can take awhile when the nervous system is involved. I used to have to brace both legs at night myself and know how uncomfortable that can be. I had to do it because I would dislocate though. Once my edema went away I stopped dislocating as much so hopefully once you heal more things will improve for you also.

Hungrylady Rookie
Hungrylady
Posted
  • Author

wow, ouch. Glad it's better for you! Yes, I take DEVA B12 with folic acid&b6, sublingual, under tounge. I didn't think to ask my PT, havent seen her since she came up with the edema gloves under the braces. I can't wait to burn those braces, lol.

Takala Enthusiast
Takala
Posted

Used one for c spine injury - honestly the most useless, ridiculous thing, one is trying to get rid of the sensation of the nerves being impinged, so this 10s unit thing instead shoots you with the same sensation so it's even more annoying. Stick to the diet, supplements, try to keep busy so you don't think about the constant buzz, and it should eventually go away. Gentle yoga helps (no straining stuff) and meditation.

shadowicewolf Proficient
shadowicewolf
Posted

Have you tried water theraphy? I've heard that helps with nerve issues.

Hungrylady Rookie
Hungrylady
Posted
  • Author

Have you tried water theraphy? I've heard that helps with nerve issues.

No, but i'll look into water therapy, sounds nice. I am planning to swim to help regain strength when my son starts school in two weeks (thank goodness).

I guess the tens until would give me more of the same feelings. It doesn't actually heal the nerves huh? Somehow that's what I got in my head, lol.

Takala Enthusiast
Takala
Posted

No, it doesn't heal anything, it's the electrical equivalent of "white noise" which the theory is that by playing that, one does not hear the more annoying noises and it acts as a jamming/blocking device. If you want to heal, stick to the diet and take vitamins and exercise so your body can metabolize and use the nutrients properly.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.