1. < Neuropathy

Gluten intolerance and peripheral neuropathy

Posted by jennyw @jennyw, Jan 6, 2020

I was diagnosed with Idiopathic Small Fibre Neuropathy 6 months ago and have not found any relief from any of the regular medications. Not content to accept the 'idiopathic' diagnosis I have been trialling diet changes and have finally had success removing gluten. I was diagnosed with Non Celiac Gluten Intoletance years ago and whilst I am generally gluten free I have not be 100% strict for quite some time until October of last year and instantly felt my pain reduce and could almost feel the affected area retreat down my legs leaving me with just occasional burning in the tops of my feet. So all good for a couple of months until I stupidly relaxed my diet over Christmas and over a week had two small pieces of Christmas cake and a handful of chips coated in beer batter. Since then my pain has returned with a vengeance and has failed to reduce over a week since eating gluten. Has anyone else experienced going off a known irritant and then having a major reaction from just a small amount when reintroduced?

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 26, 2022
In reply to @scootwagon "I thought I would post a further update. I have continued on a gluten free diet,..." + (show)
@scootwagon

I thought I would post a further update. I have continued on a gluten free diet, now for 18 days, and my PN symptoms are massively reduced. I still have a little bit of residual tingling and numbness, but it is nothing in comparison to what I had just a couple of weeks ago. I am hoping for a further recovery, but I suspect some damage might be permanent.

My intestinal problems have also abated, but the progress is less dramatic. I had daily diarrhea for more than five years along with bloating, gas, and discomfort, particularly at night. Now I have less bloating and gas, and my bowel movements are sometimes semi-formed rather than just runny. I am guessing that it will take more time for my intestines to heal.

Things might have progressed faster if I had not made the mistake of taking a vitamin supplement that contained wheat starch. I did that for five days. I guess it can be tricky to avoid gluten.

I should add that I have not been diagnosed with celiac disease. I went on a gluten free diet because I suspected that celiac or gluten sensitivity might be the cause of my neuropathy. My doctors ruled out out most other causes, and this week they investigated me for cancer but did not find anything. My doctor finally ordered an exam of my small intestine and colon to look for evidence of celuac, but I am in Germany, and my wait for this produre is several months. I think if I waited for an official confirmation of celiac disease before beginning my diet, I would end up with a lot of nerve damage.

Anyway, I am doing well for an old guy who never cooked for himself. I really followed a very benign diet these last weeks, consisting almost exclusively of chicken, fish, cooked veggies, and bone broth. Note that I avoided dairy, grains, legumes, nuts, and nightshade vegetables, so I was pretty close to the auto-immune protocol diet. As my intestines return to normal — like maybe when I have a normal bowel movement — I will add other foods to my diet. I think I probably overdid it with this diet. Probably just about any gluten free diet would have worked.

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@scootwagon That is great news! It does put a lot of creedence into eating to live instead of living to eat. I started changing my lifestyle when it comes to eating after reading Dr. Terry Wahls story - https://terrywahls.com/about/about-terry-wahls/

There's also another discussion you might find helpful -- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

REPLY
helennicola | @helennicola | Mar 27, 2022
In reply to @scootwagon "I thought I would post a further update. I have continued on a gluten free diet,..." + (show)
@scootwagon

I thought I would post a further update. I have continued on a gluten free diet, now for 18 days, and my PN symptoms are massively reduced. I still have a little bit of residual tingling and numbness, but it is nothing in comparison to what I had just a couple of weeks ago. I am hoping for a further recovery, but I suspect some damage might be permanent.

My intestinal problems have also abated, but the progress is less dramatic. I had daily diarrhea for more than five years along with bloating, gas, and discomfort, particularly at night. Now I have less bloating and gas, and my bowel movements are sometimes semi-formed rather than just runny. I am guessing that it will take more time for my intestines to heal.

Things might have progressed faster if I had not made the mistake of taking a vitamin supplement that contained wheat starch. I did that for five days. I guess it can be tricky to avoid gluten.

I should add that I have not been diagnosed with celiac disease. I went on a gluten free diet because I suspected that celiac or gluten sensitivity might be the cause of my neuropathy. My doctors ruled out out most other causes, and this week they investigated me for cancer but did not find anything. My doctor finally ordered an exam of my small intestine and colon to look for evidence of celuac, but I am in Germany, and my wait for this produre is several months. I think if I waited for an official confirmation of celiac disease before beginning my diet, I would end up with a lot of nerve damage.

Anyway, I am doing well for an old guy who never cooked for himself. I really followed a very benign diet these last weeks, consisting almost exclusively of chicken, fish, cooked veggies, and bone broth. Note that I avoided dairy, grains, legumes, nuts, and nightshade vegetables, so I was pretty close to the auto-immune protocol diet. As my intestines return to normal — like maybe when I have a normal bowel movement — I will add other foods to my diet. I think I probably overdid it with this diet. Probably just about any gluten free diet would have worked.

Jump to this post

that is great that you are experiencing improvement after omitting gluten from your diet. I was diagnosed 4 months ago with extreme gluten sensitivity and have since stopped eating it. I have read that testing for Celiac or non-celiac gluten sensitivity requires you to be currently eating gluten and if you had stopped you must resume for a period of time in order for the test to be correct. There are many forums on Facebook which deal with this topic. Many people suffer unknowingly from gluten sensitivity which can cause many different symptoms. I ended up seeing an integrative doctor because of unexplained weight loss. I also think it caused my neuropathy. Treating celiac disease or NCGS is the same: you have to omit it from your diet and wait for your body to heal or symptoms to improve. Helen

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