Gluten intolerance and peripheral neuropathy
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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My PN finally became better now that I have started a gluten free diet. I am wondering if the nerve damage I have is permanent or whether the numbness and residual tingling will ever go away.
Like Jenny, I am wondering how strict I need to be on this diet. However, one thing that freaks me out a bit, is that there seems to be a link between gluten sensitivity and Parkinson’s Disease. I watched my mother die of PD and it was horrible. She never had PN. Now I suspect, the damage from gluten sensitivity could be happening even if you don’t feel burning and tingling. So I guess I will just commit to a lifetime of dieting. Maybe I should even be thankful for the PN, because it slerted me to this danger.
I have PN secondary to chemotherapy. I have been told by my physician, if the PN does not resolve within 5 years it’s not going too. The situation has been one of slow progression , although a recent bumper shot has made it much worse.
@wwenerowicz, I wouldn't give up hope of the PN going into remission. Here's some information you might find helpful.
"Does CIPN ever go away?
In most cases, CIPN will go away. It will depend on upon the dose, but usually the symptoms will dissipate over time. Sometimes it takes a few months after treatment. In some rare cases, it is permanent."
— Tips for Managing Neuropathy – Dana-Farber Cancer Institute: https://www.dana-farber.org/health-library/articles/tips-for-managing-neuropathy/
Welcome @scootwagon, It's good to hear that the gluten free diet is providing some relief for you PN symptoms. I don't think anyone can say for sure that there's a link between gluten sensitivity and Parkinson's Disease but then it's just my thoughts based on what I've read. Here's some information from 2020:
"Does gluten affect Parkinson's disease?
There's also currently no medical evidence that people with non-celiac gluten sensitivity—a condition in which people react to gluten-containing foods but do not have celiac disease—are more likely than average to develop Parkinson's disease."
— Parkinson's Disease and Gluten-Free Diets – Verywell Health: https://www.verywellhealth.com/parkinsons-disease-and-gluten-free-diets-4148442
Just the fact that the gluten free diet is helping your PN symptoms would be enough for me to do more research on the cause of my PN. Are you able to share a little more about your PN diagnosis and any treatments suggested or started by your doctor or neurologist?
Thanks for the information about PD. I hope there really is no connection to gluten sensitivity.
I have had some intermittent tingling in my feet over the last two years, but in the last month, it suddenly became much worse — burning, tingling, sometimes feeling cold like someone rubbed menthol on my skin — and my calves and hands began to be affected. I went to the doctor, she diagnosed polyneuropathy but could not determine the cause. She ruled out diabetes, kidney disease, throid problems, and peripheral artery disease. She referred me to a neurologist.
I have not yet seen the neurologist (I am waiting for an appointment), but doing my own research I became curious about the possibility that my PN might be caused by gluten sensitivity. I decided to start a restrictive diet. I am following the auto-immune protocol, except that I have not excluded dairy products.
The improvement was almost immediate. The feet, whose burning had kept me awake, calmed down enough for me to sleep through the night after only two days of dieting.
I should probably add that I have had intestinal problems for a long time — chronic diarrhea for the last five years. I could not figure out what was causing that, but I am hoping that this diet is going to fix that.
Just one other thing. Though it was some years ago, I was tested for celiac disease, and I didn’t have it. I then ignored gluten. in my diet. I guess I shouldn’t have, but I didn’t know any better.
@scootwagon, I think it's great that you are doing your own research and learning as much as you can about your conditions. That's what brought me to Connect in 2016 after 20+ years of PN symptoms and deciding to make an appointment with a neurologist for a diagnosis. I was pretty bummed after the appointment. I only have numbness and some minor tingling in the legs and feet and I was diagnosed with idiopathic small fiber PN but there were no treatments that helped so the neurologist said just to followup if/when the symptoms got worse. I posted my story in another discussion here – https://connect.mayoclinic.org/comment/310341/
There are 2 good sites that I use a lot for research on neuropathy and treatments if you haven't aleady seen them.
— Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
Hoping the diet will fix the intestinal problems. I've been looking into the diet/lifestyle changes myself to help with my chronic constipation. Can you give us an update after your neurology appointment and being on the diet for awhile?
I will be happy to post an update. If you haven’t tried dieting, I recommend it. I didn’t expect it to work for me, but it quite distinctly reduced my symptoms in only a short time. Definitely worth a try.
Hi, You asked me to post an update, so here it is. I had an appointment with the neurologist, who confirmed that I have polyneuropathy affecting my hamds and feet. The doctor wants me to do some tests for cancer, so I willl be getting a lung xray and an ultrasound of my abdomen next week. Also more bloodwork, among other things to reconfirm that I don’t have diabetes.
I would rather hope this is related to celiac or gluten sensitivity, which would fit better with all the intestinal symptoms. However, I cannot say my diet has helped me much so far—I still have uncontrollable diarrhea and my neuropathy symptoms have worsened rather than improving as I had expected. Still trying to eliminate foods to find something my stomach can handle.
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.