Gluten free 5 months - neuropathy changing
 

I have dx for gluten sensitivity (double dq1, non-celiac variety), plus positive tests for sensitivity to soy, casein & yeast. I also have a dx for peripheral neuropathy, which started about two years ago.

After finding the link between gluten & neuropathy, I've been eating gluten free for 5 months and soy, casein and yeast free for about 2 months. Lately I've noticed my symptoms for peripheral neuropathy have changed. For the past 2 years I've had progressive numbness in my feet, and more recently tips of the fingers. No tingling, more that "altered state" like you're wearing a sock. Occasionally I'd get those electric shocks up the legs, too. But in the last few weeks I've noticed more burning on the bottom of my feet, more shock-like pains in my toes, and my feet are aching much more than they used to.

Has anyone else experienced this after going gluten free? I'm hoping it's a good sign that the nerves are coming back to life. I would like to hear from anyone who has both of these problems to see if there is a possibility of getting my feeling back.

Welcome to NeuroTalk....

Your post is very interesting. Over the years, we've had posters with peripheral neuropathy who turned out gluten intolerant (or other food groups)...myself I am intolerant to fructose and nightshades! I did gluten free for 3 yrs, but it didn't do much for me. Each person IS different.

But I would ask that you also post to our PN forum here:

http://neurotalk.psychcentral.com/fo...aysprune=&f=20

I agree about posting at--
 

--our neuropathy forum as well--there are some gluten intolerant people there with neuropathic symptoms.

My speculation is that you may be experiencing the nerves "waking up"--starting to regenerate and sending out weird signals as they attempt to re-enervate their target areas. This activity is often intepreted by the brain oddly, including as pain or tingling. In fact, many on the neuropathy board who have experienced nerve regeneration have said it's very hard to tell what's going on, as it often feels exactly as if things are getting worse; they only noticed improvement in long term retrospect, by keeping a diary osf symptoms and comparing entries over months to years, as the brain began to adjust to the new signal patterns. (At least, I hope that is what you're experiencing as the autoimmune attack from the antibodes to gluten peptides recedes.)

Or, you need to have your B12 checked. Even if you aren't celiac, the gluten is BIG time damage for us, and double DQ1's are more prone to neuropathy. I have been taking B12 for 5 yrs and it did significantly slow my neuropathy progression. It doesn't work overnight, it takes time...was over 2 yrs before I noticed a big improvement. When you have your B12 tested, ask for the number, don't let them tell you it's in normal ranges without getting the number. Our normal ranges, and the doctor's normal ranges often times are very different.

I too am double DQ1---HLA-DQB1,0602 and HLA-DQB1,0603. We also often times are super sensitive...which with your list of no soy, no casein, and no yeast, means you are super sensitive. Be very careful with "gluten free" labeled foods, they are not actually gluten free, they can be anywhere from 5-20ppm of gluten and labeled gluten free. I can't eat any of them, at this time, I am totally grain free. When glutened, my neuropathy symptoms flare.

Thanks, all.
MrsD - I'll repost my question on the PN forum as well. I just browsed through it looking for gluten-related threads and did find a few.

Glenntaj - I sure hope you're right and it's nerves waking up, not nerves dying off. It really does feel like things are getting worse suddenly, but I'm going to keep a positive thought.

Deb - I should have mentioned I had my B12 checked a few weeks ago and the levels are excellent, so that's not it. Unfortunately. That would be sooooo much easier than eating gluten-free. Since I'm not celiac, I don't have the malabsorbtion problems they do and most of my levels are quite normal except Vitamin D, for which I'm taking a 1x week 50,000 IU to boost it up. Coming off a long, dark, sunless winter, it's not surprising the D is low.

You might want to read this link, that pabb posted recently.

Why the 50,000 IU D2 you doctor gives you doesn't work:

http://www.thevitamindcure.com/blog/?tag=vitamin-d2

I have read posts about d2 vs d3 in the other forum I hang out on, *edit*, and realize d2 is not ideal. But it's only for 4 more weeks, then I back down to 1000/day of the good stuff, d3, and retest in a few months.

My guess is they don't make a 50,000 d3 supplement, or my doc would have ordered it. She's pretty savvy when it comes to these things.

yes, they do. It is over the counter.

The D2 is the only Rx version.

OTC D3 you can get 1,000 IU, 2,000IU, 5,000IU, 10,000 IU and 50,000IU. (BioTech is the one usually recommended).

This one is 2,000 IU per drop:
https://www.bioticsresearch.com/node/1570

Being celiac or not doesn't have all that much to do with malabsorption problems. I have double DQ1 genes and neuropathy, along with malabsorption issues, sleep apnea, CFS, raynauds, gluten ataxia....but not a diagnosis of celiac...well, my PCP says I am celiac, Quest Labs says I am not. Gluten makes me sicker than most celiac's I know. I was B12, Vit D, and ferritin deficient because of gluten.