6 replies to this topic

[newgfcali]

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.

[ravenwoodglass]

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]

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]

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]

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.

[newgfcali]

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]

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.