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Peripheal Neuropathy (sp?)

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Hello!!

I want to first say that I did another gluten challenge this weekend by having some Red Lobster biscuits (so hard to resist). I also had a cacon egg and cheese biscuit from McD's as well as a Jiffy bllueberry muffin - all on separate days this weekend. Crazy - yes, but I wanted to klnow for sure gluten is my issue seeing that the doctors in my small town do not seem to validate it as a diagnosis or even know much about it ;( Its hard to alter your life and change your diet if you are not 100% sure it is the issue.

Anyhow...my main question today (now that I have been gluten-free again for two days, still waiting for the belly bloat and tiredness to fade away)...

What is this Peripheal Neuropathy that I hear people on the board talk about? When I ingest gluten I seem to get the major constipation, severe pregnancy looking belly for days/week, extreme fatigue and brain fogginess. I have the more long term effects such as dental enamel defects and stilbirth child, but was wondering particularly about this "neuropathy".

I haven't felt this in a few months or so, but today the back of my right arm is feeling almost like it is bruised. It is the upper arm area where women typically have that arm flab (lol - sorry but best explanation I could think of). There is no visible bruise, and I haven't done anything at all physical. It is fine when I do not touch it at all - but even clothing rubbing against it feels as though I have that "just touched a bruise" pain. It covers that whole surface - not just a small bruise sized spot. Again it doesnt hurt at all if untouched. I used to get tyhis a while back but it would always be on the backs of my thighs. I accounted it to maybe some sort of siatica or something and it would go away within a week or two (I really can't remember the duration as it has been months since it happened). Well, this time it is my right arm and its the upper back portion. i would say it's a burning/bruised sort of pain - not really pins and needles.

Just wondered if this may be a symptom of the gluten I ingested. Would have never thought of tieing the two together until I saw this board!

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PN is usually similar to the way it feels when a hand or foot falls asleep. It usually hits the hands or feet first but can then progress up or down the limb in some people. It can also cause a burning pain in the affected hand or foot. I believe it is caused by a misfiring in the nerve signals.

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Oh - definitely not what I have then. I do not remember my feet or hands tingling. Just the wierd sensitive to touch/pain. Maybe I did something without realizing it.

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Oh - definitely not what I have then. I do not remember my feet or hands tingling. Just the wierd sensitive to touch/pain. Maybe I did something without realizing it.

It could also be part of your gluten reaction. Gluten seems to flare my arthritis and fibro. My muscles and joints get very painful when I get glutened and it does take a few days to resolve.

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Here is a good definition and discussion on what Peripheral Neuropathy is all about:

Wikipedia - Peripheral Neuropathy

Fortunately, not everyone experiences PN with connection to celiac disease - when it does occur, it is usually with long standing, untreated and undiagnosed celiac disease. Personally, as far as PN is concerned, I have had Carpel Tunnel surgery on both hands, plus nerve entrapment surgery on one thumb. There have also been times when I have had tingling and pain sensations in my feet.

Hope this helps.

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This is my first post, so hello everyone! :-)

I have experience with PN. I used to get a tingling numbness, that is the best way to describe it, in the tips of my fingers. It would happen every so often, sometimes every few weeks, sometimes not for months at a time. It was usually both hands at the same time, all of my fingers. It didn't quite hurt, but didn't feel good either. It would last for hours each time that it happened. I also would have times, most of the time in fact, where I was sensitive to textures. Simply touching paper towels would hurt, they were the worst, and would give me a feeling of the "willies", my whole body would tense up and there would be small shivers up my spine. I also had times where I just could not stand to have socks on. I have not experienced any of this since I've been gluten free. (Though I still don't like socks, never have and never will.) :-)

I did talk to a doctor more than once about the tingling, numb feeling in my hands and they just blew me off, said it was nothing and not to worry about it. When I was looking for answers to my supposed IBS (I was diagnosed with Fibromyalgia 11 years ago) and came accross a "could you have Celiac" checklist, tingling/numbness in the tips of the fingers was one of several (at that time unexplained) symptoms that stood out in my mind and I knew I had found the answer. I took my suspicion to my (new) doctor and he confirmed it. That was about a year ago. I struggle still to be completely gluten-free, I've always loved eating at restaurants and never learned to cook, but all the weird symptoms that I knew were something wrong but the doctors told me were nothing have stopped. It's my Life Lesson #3 - you know your own body better than anyone else, no matter how many years they spent in school.

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Definitely gluten can contribute to these weird nerve pain symptoms. I have also discovered that taking co-enzyme B vitamin complex on an empty stomach helps resolve a lot of this. Has helped me recover my nervous system (the myelin sheath was down to 50% in 2005). Going off all trace glutens has also been essential. Now am on scd diet plus avoid other allergens including fruit sugars and nuts and take slippery elm caps daily all of which has helped me enormously.

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There is no visible bruise, and I haven't done anything at all physical. It is fine when I do not touch it at all - but even clothing rubbing against it feels as though I have that "just touched a bruise" pain. It covers that whole surface - not just a small bruise sized spot. Again it doesnt hurt at all if untouched. I used to get tyhis a while back but it would always be on the backs of my thighs. I accounted it to maybe some sort of siatica or something and it would go away within a week or two (I really can't remember the duration as it has been months since it happened). Well, this time it is my right arm and its the upper back portion. i would say it's a burning/bruised sort of pain - not really pins and needles.

People experience neuropathy differently, and there are many different types of neuropathy. Sensory neuropathy does not have to be pins and needles, although at times it is. I call my neuropathy "the princess and the pea" syndrome. Sensory neuropathy at times does make you feel like you can't stand your clothing touching you. I can't stand the feeling of a necklace touching me, even though I love them. A watch will drive me nuts. My feet hate shoes, and I have to wear them too big, because I can't have them touching me too much. My clothing has to be lightweight, I can't tolerate heavy clothing. You may feel diverted pain, meaning the nerve is reacting in one area, and causing another to ache.

This is just an example. One of my piriformis muscles is a big problem for me. In layman's terms, it's a butt muscle! :P Fifteen percent of the population has their sciatic nerve coursing through the piriformis muscle. I get to be one of the 15%, and this muscle will flare, pressing on a nerve, which shoots pains down to my ankle. This problem is either because the sciatic nerve is coursing through the muscle, or from an injury from falling...which I did, very hard, down steps on my bottom, 27 yrs ago. I think this problem isn't going away. Anyways, it does effect the nerves.

My neuropathy is ever changing. It can be pins and needles, or the feeling of bugs crawling on you, cold spots, cellphone vibration feelings, etc. Last week, my little toe felt like it had a hair twisted tightly around it, there was nothing there, and it lasted for 3 days.

Along with going gluten free, you should have your B12 level tested, anything below 500 is not good. You may need to be taking B12.

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Thank you all for your suggestions and comments! I know any of the odd things that have been happening this week may or may not be related to the gluten challenge I did this weekend. I don't want to make something out of nothing, but am more "aware" of things now. Things I brushed off as a child and teen - I now feel like I have more answers for. I really feel like I could have been the poster child for Celiac disease as a child - and wish someone would have caught it earlier. Maybe I wouldn't be 5 feet nothing. Ha.

I agree I need to have my Vitamin levels checked as it has been 2/3 months gluten free now. I am not the best eater (do not eat fruit or drink fruit juice and do not eat salads). My iron was always extremely low while pregnant and they were threatening IV iron. I haven't had those levels checked since my little guy was born though. Could explain constant tiredness though. The difficult part is that I have a physician who doesn't believe in Celiac or Allergies. I do not know that he would order any further testing. They want me to go with an IBS diagnosis and "live my life". They do not want me to search out any other explanations for my pain and symptoms. Being in a small town it is difficult to just switch doctors when there are only a handful here, most in the same practices.

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You know, I hadn't thaught about this for a long time, but I used to get that tingly arm fell asleep feeling in my left forearm frequently. I've been gluten free for 8 months now and just realized it doesn't happen anymore. And I thaught I had no PN problems. I remember having to shake my arm to wake it up, and it would happen for no obvious reason ie leaning on it. Go figure. I learn new things everyday.

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Thank you all for your suggestions and comments! I know any of the odd things that have been happening this week may or may not be related to the gluten challenge I did this weekend. I don't want to make something out of nothing, but am more "aware" of things now. Things I brushed off as a child and teen - I now feel like I have more answers for. I really feel like I could have been the poster child for Celiac disease as a child - and wish someone would have caught it earlier. Maybe I wouldn't be 5 feet nothing. Ha.

I agree I need to have my Vitamin levels checked as it has been 2/3 months gluten free now. I am not the best eater (do not eat fruit or drink fruit juice and do not eat salads). My iron was always extremely low while pregnant and they were threatening IV iron. I haven't had those levels checked since my little guy was born though. Could explain constant tiredness though. The difficult part is that I have a physician who doesn't believe in Celiac or Allergies. I do not know that he would order any further testing. They want me to go with an IBS diagnosis and "live my life". They do not want me to search out any other explanations for my pain and symptoms. Being in a small town it is difficult to just switch doctors when there are only a handful here, most in the same practices.

I believe you can order some kinds of testing through Enterolab online--at least you can for celiac, maybe vitamins too? anyone here who can help with this??

Bea

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