Is There Hope For Neuropathy?

[CarolynA]

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.   

 

 

[ravenwoodglass]

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.

[jerseyangel]

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.

[cyclinglady]

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!

[CarolynA]

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.   

[gatita]

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.

[IrishHeart]

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  .

 

 

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[lovechild]

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.

[CarolynA]

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 

[dilettantesteph]

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.