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

Does Peripheral Neuropathy Get Better


newgfcali

Recommended Posts

newgfcali Rookie

I was diagnosed with peripheral neuropathy 2 years ago, and have had many other seemingly unrelated health problems over the last 5-6 years. 4 months ago I went gluten-free when I found there might be a link between celiac/gluten sensitivity and PN. Two weeks ago I got my positive dx from enterolab that I'm gluten and casein sensitive with a double DQ1.

My question for those of you who have had neuropathy... did it get better after you went gluten free? Did you see improvement in your numbness/tingling/pain? How long did it take? I'd really like to know that someday I'll be able to feel my toes again and stop getting those electric shocks up the legs. I already see a huge improvement in my GI issues with the gluten-free/CF diet.

Thanks.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It took about 6 months and my being super strict for my nerve issues to start to resolve. By then I had lost the 'tingles' and my movement was better. I had the most healing in the first 2 years but it was a gradual process after 6 months. I did have a great deal of damage though as it began when I was in grade school and developed ataxia and lost reflexes in my legs. My leg reflexes came back at about 2 years so it does take time for nerves to repair. Be as strict as you can be. Avoid processed foods and I would also avoid gluten grain vinegars and alcohols as well as gluten in toiletries. You can always add the gluten grain vinegars and alcohols and stuff back after you have healed and see if you have a reaction. Most of us do tolerate them but some of us don't. Since you are still having issues I would drop them if you haven't already and see if it helps.

If you are not taking a sublingual B12 I would think of starting taking some. The B12 will help the nerves to heal faster.

newgfcali Rookie

Thanks, Raven. I'm being strict to the point of paranoia right now so hopefully I'm not getting any gluten (unless it's floating around in the air I breathe!)

Will get some B12 supplements today. There's not much chance of getting any from the limited foods I eat.

You're giving me a lot of hope -- thanks!

jerseyangel Proficient

I was diagnosed with peripheral neuropathy 2 years ago, and have had many other seemingly unrelated health problems over the last 5-6 years. 4 months ago I went gluten-free when I found there might be a link between celiac/gluten sensitivity and PN. Two weeks ago I got my positive dx from enterolab that I'm gluten and casein sensitive with a double DQ1.

My question for those of you who have had neuropathy... did it get better after you went gluten free? Did you see improvement in your numbness/tingling/pain? How long did it take? I'd really like to know that someday I'll be able to feel my toes again and stop getting those electric shocks up the legs. I already see a huge improvement in my GI issues with the gluten-free/CF diet.

Thanks.

Hi and welcome,

I had peripheral neuropathy that started about a year before I was diagnosed. It began with an "altered" feeling in my left arm that never went away. It was somewhere between numb and asleep. It progressed to tingling in my lower legs and feet, numbness in my face, and burning" sensations on the soles of my feet and in my mouth.

It gradually improved after I went gluten-free--the burning sensations stopped, as did the tingling. That probably took 6 months or so. The facial numbness took longer--a year to 18 months for it to completely go away. I would still get the numbness when glutened for a long time.

Ravenwood has good advice--I would also suggest the B12 (I used it) and being as strictly gluten-free as you can. :)

Takala Enthusiast

Congratulations on being willing to try the diet, based on your own observations and research. Yes, it may take a while, but a lot of it does really go away. I have spinal stenosis in my C spine so it took me a bit longer, but the "burners" should go away if you stick with it.

  • 1 year later...
newgfcali Rookie

It's been nearly two years since I posted this question, and I'm here to say "YES"! As everyone predicted, the neuropathy started to get better after about 6 months or so. I still have residual numbness here and there, mostly toes and tips of fingers and strangely the outside of my knees (go figure), but the stabbing pains in my feet have stopped and I can feel most of my feet and legs now. I live a VERY strict gluten-free life now and am so thankful for everyone's help here on the forums figuring this out.

ravenwoodglass Mentor

It's been nearly two years since I posted this question, and I'm here to say "YES"! As everyone predicted, the neuropathy started to get better after about 6 months or so. I still have residual numbness here and there, mostly toes and tips of fingers and strangely the outside of my knees (go figure), but the stabbing pains in my feet have stopped and I can feel most of my feet and legs now. I live a VERY strict gluten-free life now and am so thankful for everyone's help here on the forums figuring this out.

Thanks for the update. It is a slow process and updates like yours do give folks hope. So glad things are so much better for you.


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,014
    • Most Online (within 30 mins)
      7,748

    Scott Ryan
    Newest Member
    Scott Ryan
    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

    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
    • Martha Mitchell
      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • 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.