Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Peripheral Neuropathy
0

12 posts in this topic

I have just been diagnosed with a peripheral neuropathy related to celiac disease.

My symptoms started about 1 week after being accidentally "glutened" earlier this month. I began to get numb and tingling sensations in my hands and feet.

My neurologist told me that celiac disease is now the 3rd most common cause of neuropathy (behind alcoholism and diabetes) and the most common cause of ataxia. He told me that the pins and needles sensation in my extremities should resolve within 6 to 8 weeks, but to expect getting it whenever I am exposed to gluten from here on out.

I am wondering if any of you have been diagnosed with a peripheral neuropathy (and if so, what your experiences have been).

Thanks a bunch!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Wow a neurologist who is knowledgeable about celiac!!!!

I found that sublingual B12 helped resolve the neuropathy. If you are not already taking it you may want to see if it will help.

0

Share this post


Link to post
Share on other sites

Wow, amazing to have any doc actually tell you this. I have had issues with neuropathy for 2 years now, had all kinds of tests done, have done lots of reading. Make sure you are taking a very good B complex as the B vits feed the nerves. B12 is very hard to get into the body so we have to take it in greater quantities but a complex has it in the proper purportions. Keep taking your vitamin C as well, as good for the nerves. Are you having actual pins and needles pain? I have had them in my feet. I used L-carnitine, 1000 mg daily for the first year and then was able to reduce it to 500 mg daily.

Just over 2 weeks ago I was able to go off the L-carntine. After repeated visits to various docs and lots of blood tests and you name it, a doc finally figured it was my back that was causing me issues. I ahve been doing yoga now almost daily for 2 weeks (this is after some treatments on my back) and now the left foot is good and only an occasional twing in the right foot.

I would hate to see you go down the road I went. I would make sure this is not coming from your back before you decide for sure it is gluten related. I have 2 bulging discs in my back. 2 different docs said my back was fine but I finally had an MRI and it showed the problem.

0

Share this post


Link to post
Share on other sites

I am having pins and needles pains in my hands and feet, right more than left. I am on Vit B12 1000 mcg/day and just had my level checked and it is >1000, which I believe is good.

It's funny that you mention yoga, because I am signed up for my first class tomorrow (I last did yoga in college about 15 years ago). I am hoping to do it regularly.

My neurologist is great, he is planning on going to the huge celiac conference in Chicago in September 2013 and seems truly interested in the neuro effects of gluten. This is after meeting another neurologist first who did not know what celiac disease is!

0

Share this post


Link to post
Share on other sites




I am having pins and needles pains in my hands and feet, right more than left. I am on Vit B12 1000 mc, g/day and just had my level checked and it is >1000, which I believe is good.

It's funny that you mention yoga, because I am signed up for my first class tomorrow (I last did yoga in college about 15 years ago). I am hoping to do it regularly.

My neurologist is great, he is planning on going to the huge celiac conference in Chicago in September 2013 and seems truly interested in the neuro effects of gluten. This is after meeting another neurologist first who did not know what celiac disease is!

That test for B12 wouldn't be accurate, assuming you were taking the supplement right up to the day the level was draw. Need to stop for several days before the blood is drawn. good luck

0

Share this post


Link to post
Share on other sites

I haven't been diagnosed with PN, but the pins and needles numbness in my feet early this year scared the bejeebers out of me (many months before my doc told to try gluten-free). I was sure I had MS.

All I know is that symptom has completely disappeared since going gluten-free. It took about two months to go away. Also, my severe joint pain is mostly gone too.

I still wake up sometimes with that tingly feeling in my hands, but it seems to be connected to sleeping with my arms all twisted up in contorted postions lol.

0

Share this post


Link to post
Share on other sites

It took me longer than 6 to 8 weeks to get rid of it, it was a long, hard slog, but I had had this damage for decades and it was getting blamed on something else.

0

Share this post


Link to post
Share on other sites

I have PN secondary to gluten sensitivity, or so says one of the leading celiac researchers. My symptoms arise shortly after being glutened, and start with pain in random parts of either foot, progressing to uncontrolled leg movements (leg "jumping"). Unsually the symptoms stop after a few weeks. I went to see the research doctor after the symptoms did not stop. He told me that I must have hidden gluten in my diet. That gluten was stripping myelin off the nerves, and allowing signals to short circuit. He also said that if I found and removed it the hidden gluten, in 6-8 months the myelin should build back up to the point where the symptoms should resolve. I found the hiddel gluten (a package of Hershey's miniatures, of which I was eating 2-3 a day over several weeks), and in 8 months they symptoms disappeared.

But they reappear with each glutening. At least I know why. Interestingly, the symptoms are worse when I fly.

0

Share this post


Link to post
Share on other sites

hi jebby i have the exact same issues with pins and needles i have had it for 3 weeks now. it started when i went out and drank carlberg and got them the monring after dont go out that much but then after i ate mcdonalds and alot of foods kept doing it pins and needles were kinda going but then the weekend ate a lot of taytos sausages etc and came back at me... are u free from this pins and needles now its def after i eat it i get them in my hands like freaked me out at start taught my heart all my bloods came back clear but waiting for celiac desiese like if u can let me know would be greatfull thanks alot 

0

Share this post


Link to post
Share on other sites

Hi Kerrylad, My pins and needles/numbness has totally resolved since taking all gluten out of my home (no more accidental cross contamination). The last time I had it happen was in January after getting gluten cross contamination at a restaurant. Do you have celiac disease or non celiac gluten sensitivity? Have you seen a doctor?

If you are linking the pins and needles sensation to drinking beer and eating at McDonalds, then there's a good possibility that it may be related to gluten. But, you need to make sure that you do to have multiple sclerosis, diabetes, lupus, or Lyme Disease, as these can all cause peripheral neuropathy to begin.

0

Share this post


Link to post
Share on other sites

Hi Kerrylad, My pins and needles/numbness has totally resolved since taking all gluten out of my home (no more accidental cross contamination). The last time I had it happen was in January after getting gluten cross contamination at a restaurant. Do you have celiac disease or non celiac gluten sensitivity? Have you seen a doctor?

If you are linking the pins and needles sensation to drinking beer and eating at McDonalds, then there's a good possibility that it may be related to gluten. But, you need to make sure that you do to have multiple sclerosis, diabetes, lupus, or Lyme Disease, as these can all cause peripheral neuropathy to begin.

thanks very much for reply.. had my full bloods done and they are all clear dibities tyroid etc like celiac came back clear in bloods like i know whats im eating this has being going on for months as in stinging in intestines used come and go away id take no notice but recently the last 3 weeks hit with a bang like,, i had salmon yesteday with pastry on it potatoes and veg and cause on top i took the pastry off it and wipped the sause away and after eating it 15 mins later i felt sick and needed to get sick its just the bloods came back negitive cracks me up and these pins and needles are head wrecken and all the doctorrs from my place never heard of pins and needles from it like how long did it take for u to get rid of them and did u feel good on the new diet?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,144
    • Total Posts
      919,569
  • Topics

  • Posts

    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,176
    • Most Online
      1,763

    Newest Member
    Red Butt in hemet
    Joined