Gluten intolerance and peripheral neuropathy

Posted by jennyw @jennyw, Jan 6 4:15am

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?

Hi @jennyw, I saw your previous post on the Unknown or Idiopathic SFN discussion asking if the member tried changing their diet (https://connect.mayoclinic.org/discussion/unknown-cause-or-idiopathic-sfn/?pg=8#comment-357184), I have no medical background but would think the answer to your question here about a small amount of gluten causing your pain symptoms to come back with a vengeance would be it depends on how sensitive your body is to gluten. I'm hoping other members can share their experience with you but I'm sure it may boil down to each of us are a little different when it comes to food sensitivities.

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I think that @retiredteacher @rwinney @jenniferhunter @helennicola @mlross4508 may also have some thoughts on a connection between a gluten intolerance and peripheral neuropathy.

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@jennyw I am retiredteacher, and I am sorry, but I have never experienced gluten problems. I also am not experienced with peripheral neuropathy. I have problems with my feet, but my endocrinologist says it is not neuropathy. I am seeing a podiatrist as soon as I can for his opinion. I wish I could help you, but I know nothing about gluten and now I am not sure about my painful feet.
I hope someone else can help you.
Carol

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YES! Gluten is my enemy. I use a heating pad a lot. Holidays make a gluten free diet very challenging.

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@constancelee

YES! Gluten is my enemy. I use a heating pad a lot. Holidays make a gluten free diet very challenging.

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Hi @constancelee, can I ask what the heating pad is?

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@jennyw I have been gluten free for 20 years, and I recently made a mistake and ate a bite of left over mac and cheese thinking it was my gluten free mac and cheese, but it was my husband's regular wheat version. I did have an uncomfortable stomach, and expected to have a lot more issues, but that didn't happen. If I made this mistake years ago, the consequences were much greater. It makes me wonder if all those years of careful eating reduced inflammation and that is my norm now, and I didn't have an extreme reaction because my body was not fighting this constantly for years. I also have other food allergies that happened around the same time I figured out the gluten problem that I think happened because of a leaky gut and exposure to improperly digested foods getting into my bloodstream from the inflammation with gluten exposure. When I figured out what all of my bad foods were, I stopped pain in my joints and hands by avoiding them. The only real solution is to avoid the foods that you know will hurt you, but there are digestive enzymes available at pharmacies that will break down gluten in the stomach. That might help in cases of accidental gluten exposure or holiday temptations. I don't give in to tempting holiday goodies and have some safe alternatives.

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@retiredteacher

@jennyw I am retiredteacher, and I am sorry, but I have never experienced gluten problems. I also am not experienced with peripheral neuropathy. I have problems with my feet, but my endocrinologist says it is not neuropathy. I am seeing a podiatrist as soon as I can for his opinion. I wish I could help you, but I know nothing about gluten and now I am not sure about my painful feet.
I hope someone else can help you.
Carol

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My endocrinologist tested me for celiac and said the test was negative and i didn’t have sensitivity to gluten. But I have since learned that not having celiac disease does not mean you are not gluten sensitive and some tests for celiac don’t pick up all gluten sensitivity. Sensitivity to gluten definitely can be the underlying cause of PN. After being off of gluten for a time my PN had begun to be less of a problem, but last evening I slipped and ate a handful of cheese crackers that I later learned also contained wheat flour. My PN came back last night with a vengeance. I think the best test for whether gluten sensitivity is causing my PN is for me to go on and rigorously stay on a gluten free diet.

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@jennyw

Hi @constancelee, can I ask what the heating pad is?

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Hi and excuse me for butting in but, I live with heating pads and highly recommend the soft, pliable heating packs that are filled with buck wheat (or other stuff) and heat in the microwave. I have multiple and use them on my whole body. They even come to bed with me. They are life savers for my pain and best part yet…aren't drugs! Good luck.

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@catro

My endocrinologist tested me for celiac and said the test was negative and i didn’t have sensitivity to gluten. But I have since learned that not having celiac disease does not mean you are not gluten sensitive and some tests for celiac don’t pick up all gluten sensitivity. Sensitivity to gluten definitely can be the underlying cause of PN. After being off of gluten for a time my PN had begun to be less of a problem, but last evening I slipped and ate a handful of cheese crackers that I later learned also contained wheat flour. My PN came back last night with a vengeance. I think the best test for whether gluten sensitivity is causing my PN is for me to go on and rigorously stay on a gluten free diet.

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@catro I think you answered your own question. I have never been tested for celiac because 20 years ago it was very controversial and doctors didn't believe in it, so I had to go with what my gut told me (literally) after eating foods. I figured it out piece by piece with an elimination diet and found I had a gluten problem. I also developed other food allergies presumably because the gluten exposure caused a leaky gut and let the partially digested foods into my blood stream. I had pain in my hands and joints that stopped when I figured out what foods to avoid. You have to read food labels, and it may be one ingredient that is an issue, and you can't tell unless you test one component. I tested wheat by eating some plain flour, and knew that was it. I was also allergic to eggs, but later found out it was egg whites, and not the yolk, so I can hard boil an egg and eat the yolk. Sometimes testing isn't completely accurate, and it may depend on how long or how recently you were eating the gluten, and if your body would have mounted an immune response in that time period.

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@jennyw

Hi @constancelee, can I ask what the heating pad is?

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It is a pad heated by electricity. You can use a a warm towel. Or a water bottle with warm water.

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