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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Is There Hope For Neuropathy?


CarolynA

Recommended Posts

CarolynA Newbie

Last year, I posted to this forum because I thought I had celiac, but after my tests turned out negative, I went back to my regular diet and forgot about gluten.  However, the neuropathy in my feet has been getting worse, and my doctor increased my levothyroxine dosage last summer.  I have turned to acupuncture in an attempt to get some help.  For a few weeks, the neuropathy was getting better, but the in the last 2 weeks, the pain has gotten much stronger than ever before.

 

I just started reading a book, The Immune System Recovery Plan, by Susan Blum.  She says that thyroid disease, neuropathy, and celiac disease are strongly associated.  "The thyroid, joints, and nervous system are damaged first, and this can be the initial sign that something is amiss, before any symptoms of celiac disease are evident."  This is really astounding information to me! 

 

She suggests going off gluten, corn, dairy, and soy for 3 weeks, then adding them back in one at a time.  Have any of you had success doing this and finding the cause of the problem?  Have you seen neuropathy get better through an elimination diet?  I am really worried about the nerve damage that may already have been done.   Any comments or help would be appreciated.   

 

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

You have nothing to lose by going gluten free. Nerves can heal but they do it slowly so you may not notice much of a difference for a while. I would advise adding gluten back in last. Have you had your B12 levels tested? If your levels are below 500 a good gluten-free sublingual B12 may help with the healing. I noticed the biggest differences within the first 6 months gluten free but my nervous system continued healing for quite a while after that. In some, like myself, some degree of damage can be permanent but hopefully you will heal fully or at least enough to not be in constant pain.

Link to comment
Share on other sites
jerseyangel Proficient

I second all that Ravenwood said. I had neuropathy before diagnosis, tingling with numbness in my lower legs, left arm and face.

It began to resolve the first few months gluten-free, but took time to go away completely. It used to come back in my face especially if I accidentally got glutened, but not anymore after 8 years.

Link to comment
Share on other sites
cyclinglady Grand Master

I agree!  Go ahead and try the diet, it certainly won't hurt and I would avoid adding the gluten back for a long time as Raven suggested.    The B-12 supplements are a good idea too.

 

I've been diagnosed with Celiac Disease during the past few months (no symptoms other than anemia and thyroid) but my husband has never been diagnosed.  We suspect  he has a gluten intolerance and he's been gluten-free for over 12 years.  He feels so much better and refuses to do a challenge and I can't blame him.  We already know that gluten is not for him!  It took about a year for him to mess with his diet (I can see how an official diagnosis really keeps you on the "wagon" and it's a shame that Science hasn't made identifying gluten intolerances easier).  

 

So, get off the gluten and test those other common food allergies.  Eat a balanced diet of whole foods and you'll probably see improvement!  

 

Good Luck!

Link to comment
Share on other sites
CarolynA Newbie

I agree!  Go ahead and try the diet, it certainly won't hurt and I would avoid adding the gluten back for a long time as Raven suggested.    The B-12 supplements are a good idea too.

 

I've been diagnosed with Celiac Disease during the past few months (no symptoms other than anemia and thyroid) but my husband has never been diagnosed.  We suspect  he has a gluten intolerance and he's been gluten-free for over 12 years.  He feels so much better and refuses to do a challenge and I can't blame him.  We already know that gluten is not for him!  It took about a year for him to mess with his diet (I can see how an official diagnosis really keeps you on the "wagon" and it's a shame that Science hasn't made identifying gluten intolerances easier).  

 

So, get off the gluten and test those other common food allergies.  Eat a balanced diet of whole foods and you'll probably see improvement!  

 

Good Luck!

 

Thanks everyone for the replies.  I have been most worried about the neuropathy pain.  It is good to hear that healing happens, even if it is slow.  I had my B12 tested in 2010, and it was 951 (high).  

 

Do you think I should go off soy and corn as well, or is just going off gluten enough for now?  I don't eat dairy anyway, except for occasional pizza.   

Link to comment
Share on other sites
gatita Enthusiast

This was the symptom I worried about the most -- numbness and tingling in my feet and hands. It went away after around five months gluten-free.  So I am a believer! You lose nothing by trying...

 

I never went off corn or soy, but if you think they might be a problem, try it. I found, however, that it takes me more than just a couple of months to really understand what bothers me and what doesn't. I couldn't eat dairy at first but now I can.

Link to comment
Share on other sites
IrishHeart Veteran

I agree with Raven & Patti

I had many neurological symptoms and was I warned by a neurologist and spine specialist they might never resolve entirely (and I would be on meds for the rest of my life) because of how long it took for me to be Dxed, but I can happily report to you that they are nearly all resolved after 2.5  years. I do experience some residual burning sensations in my legs and arms, but it is not the unbearable pain level that it was and I hold hope that it will eventually stop. ,,,and I take no medications now :) .

 

 

.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



lovechild Rookie

I also have had tingling almost over my entire body for the past two years. Since I also had other symptoms of gluten intolerance I decided to go gluten free 7 weeks ago. Three weeks after going gluten free I felt like a new woman and many of my symptoms had resolved except the tingling. For the past three weeks I have become sensitive to almost every food that I eat so now I think I may also need to go off dairy, corn, soy etc. I am in the same boat as you! It is reassuring to know that the tingling may eventually subside. 

 

Good luck with the new diet. I still have no idea what I am going to eat with my own diet.

Link to comment
Share on other sites
CarolynA Newbie

I also have had tingling almost over my entire body for the past two years. Since I also had other symptoms of gluten intolerance I decided to go gluten free 7 weeks ago. Three weeks after going gluten free I felt like a new woman and many of my symptoms had resolved except the tingling. For the past three weeks I have become sensitive to almost every food that I eat so now I think I may also need to go off dairy, corn, soy etc. I am in the same boat as you! It is reassuring to know that the tingling may eventually subside. 

 

Good luck with the new diet. I still have no idea what I am going to eat with my own diet.

I want to thank all of you so much!!  I have been very worried about this, and now I feel much more positive.   I may just try going off the gluten for a couple of months to see if it makes a difference before stopping soy and corn as well.   

 

Carolyn 

Link to comment
Share on other sites
dilettantesteph Collaborator

I also had neuropathy symptoms that resolved on the gluten-free diet.  However, I am super sensitive and had to do mainly produce and unprocessed meats.  If gluten, then soy and corn elimination don't work for you, it may be worth giving that a try next.  I hope you feel better soon.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to djmu's topic in Related Issues & Disorders
      9

      Peripheral Neuropathy

    2. - Tlbaked13 replied to djmu's topic in Related Issues & Disorders
      9

      Peripheral Neuropathy

    3. - trents replied to JustGemi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      SCARED: What Do These Test Results Mean?

    4. - Scott Adams replied to Kaylee G's topic in Gluten-Free Recipes & Cooking Tips
      1

      Learning to cook for myself


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,480
    • Most Online (within 30 mins)
      7,748

    EJenkins
    Newest Member
    EJenkins
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Do you believe your swallowing is a manifestation of your neuropathy? I'm thinking if you are having trouble getting food down you need to focus on consuming things that have a high nutritional density so that whatever you are able to get down counts for something. Have you looked at Boost and other high protein/high calorie shake products?  They are fortified with vitamins and minerals as well. Do you have any trouble with aspiration of liquids? For celiac testing purposes, the guidelines are calling for daily consumption of about 10gm of gluten - the amount in about 4-6 slices of bread - in order to ensure valid testing. That sounds like it would be a challenger for you.
    • Tlbaked13
      Thank you and I am aware that I should be eating a "normal" diet until tested it's kind of been trial and error for my diet or more like just ERROR! I about 1-3 bites a meal I'm to a point that 99 percent of the time I'm having trouble swallowing just about everything occasionally I find either something or a very small window of time that allows me to get very little of something! I am basically getting zero nutrition what so ever because I take one bite of the meal that I usually just slaved over just to end up tossing it when it's all said and done...did anyone else ever experience anything like this?  I am more then open to suggestions! It is taking a very extreme toll on me and my body forsure 
    • JustGemi
    • trents
      No! Do not start the gluten free diet until you know whether or not you will be having an endoscopy/biopsy to verify the blood antibody test results. Starting gluten free eating ahead of either form of diagnostic testing can invalidate the results. You don't want to allow the villous lining of the small bowel to experience healing ahead of testing by removing gluten.
    • Scott Adams
      We offer a ton of recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/ and have done some articles on fast food places, but keep in mind that eating out is a common source of gluten contamination: https://www.celiac.com/search/?q=fast food&quick=1&type=cms_records2 Many colleges now offer allergen-friendly, and sometimes gluten-free options in their student cafeterias: https://www.celiac.com/search/?&q=colleges&type=cms_records2&quick=1&search_and_or=and&sortby=relevancy PS - Look into GliadinX, which is a sponsor here, but many studies have been done on it which show that it may break down small amounts of gluten in the stomach, before it reaches the intestines.
×
×
  • Create New...