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Severe Symptoms In Muscles And Nerves After Coming Off Gluten?

nerves muscles prickling stinging joints gluten sensitivity

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#1 in the middle

 
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Posted 17 January 2013 - 03:10 PM

Hi everyone! I'm new here and I'm trying to figure out this whole gluten sensitivity thing. I was diagnosed with IBS by my GI doctor. I was negative on the celiac and wheat allergy, however, I had put myself on a gluten free diet 2 weeks before tests were done which I hear will cause the tests to be negative. I just couldn't bring myself to eat any gluten for the tests because I had been so sick! The reason for the gluten free diet is because I have 3 sisters and one aunt with confirmed celiac and I thought maybe that was the problem....you know, grasping for straws. I have suffered since I was a child with stomach issues. I was adopted so my family history was a puzzle to me until recently. I now have been gluten free for 7 months and my stomach is so much better! Before my gluten-free diet had begun, my joints had been painful and my right pinky finger (weird place for this to happen) was getting very inflamed and twisted looking. Two weeks after going gluten-free the pinky finger stopped hurting and the inflamation started to get less and less. So at that point my stomach was doing great, my joint pain was going away....wow, I'm well! NOT!!! Now for the past 4 months I have been having stinging, shooting, creepy crawly feeling pain in my muscles mostly in my upper body and some even in my scalp. Some of the pain feels like I'm being stabbed with pins. I've even been to the hospital with it and I think the doctors have written me off as a lunatic. I really don't have the time or energy to be a lunatic!.... This is real pain. I just think this is strange to have pain like this after I've gone gluten-free. Someone said maybe I was detoxing. Is this common? If so, how long does it last? Or is it something else? I just want to get well. I'm so tired of the pain and not knowing what this is. I also have to worry about my grandson. He has the same problems as I do and he put himself on the diet. Very mature, I think, for an 11 year old to make that kind of decision! I just want to know as much as possible so we both can benefit. Help? Advice? Thanks!
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#2 1desperateladysaved

 
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Posted 17 January 2013 - 07:38 PM

I hope you will feel better soon.

Have you had your nutrient levels checked? Do you take supplements for any nutrient needs? Might you be taking in something with wheat in it? I have dealt with many of these in my own life. I don't have the pinprick feeling, but am numb. A doctor suggested that vitamin B12 might be short. I had blood tests and it showed I was short in B12. You might also see if you have any food intolerances causing issues for you.

Check the forum, because I have heard of odd stinging symptoms before.
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#3 saaa-wheat<3

 
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Posted 17 January 2013 - 09:29 PM

How is your thyroid? Might do to have it tested, if you haven't.
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Gluten-free after trying unsuccessfully and falling off wagon and becoming so sick--this is when the docs found the Hashimoto's, 2003. I have not eaten gluten willingly since then, until January, 2013. Past GI symptoms, delayed DH rash, biopsies on both have been negative, as well as IgE (all tests performed while not willingly consuming gluten). GERD dx in 2007, citric acid is worst offender. Mushrooms (the regular kind, that is) cause GI symptoms along with occasional rash (different than DH, the red dot kind) and I now wonder how many times I got sick from mushrooms and thought it was gluten contamination.

#4 in the middle

 
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Posted 18 January 2013 - 07:46 AM

I do have my levels checked at least once a year and sometimes twice a year. I have had my vitamin D level low before and I take extra D. I also take vitamins that are supposed to be gluten free according to the label. How much to trust labels? My thyroid was borderline low at one point but it came back up. I go next week to my family doctor. I'll make sure all my levels for everything are checked. Thanks saaa-wheat<3 and 1desperateladysaved for replying! Maybe I'll find something out in my blood work. I'll let you both know what turns up. If my info could help someone else, all this wouldn't be in vain!
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#5 in the middle

 
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Posted 18 January 2013 - 08:05 AM

1desperateladysaved

I hope you will feel better soon.

Have you had your nutrient levels checked? Do you take supplements for any nutrient needs? Might you be taking in something with wheat in it? I have dealt with many of these in my own life. I don't have the pinprick feeling, but am numb. A doctor suggested that vitamin B12 might be short. I had blood tests and it showed I was short in B12. You might also see if you have any food intolerances causing issues for you.

Check the forum, because I have heard of odd stinging symptoms before.

I really hate the pinpricking/stinging and numbness! It drives me crazy. I'm an artist and my hands and arms are my living. If I can't use them I'm in trouble. I was thinking of having food allergy tests done but I'm not sure I want to know if there are other allergies. It's hard having to watch everything that you eat, I'm sure you know what I mean. It would mean having to add more things to the "can't have" list. I guess if I can't get this under control the way things are at present, I will have no choice but to get the testing done. But I promise it will be with much dread! I just keep telling myself "one day at a time". It gets hard though and my determination wears down when I'm tired from the pain. I will be looking at the forum for posts about the stinging. Thanks!
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#6 ynot

 
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Posted 20 January 2013 - 07:34 AM

Hi in the middle,

It's been a while since I've posted here, but I wanted to second the suggestion to consider vitamin b12. It sounds like you have a decent amount of nerve damage, which in many cases is a result of vitamin deficiencies.

I went gluten free nearly three years ago and saw about a 50% improvement in my symptoms. Over the last 6 months I've been taking B12 ( and a bunch of other vitamins ) and now I'm really beginning to feel normal. Hands no longer go numb and my overall energy is way up.

Nerves can heal. If I were you, I would order some Enzymatic Therapy B12 Infusion and take it for a month and see what happens. I named a particular brand, not because I have a monetary interest, but because when it comes to b12, brands matter and this one happens to work extremely well. I would also recommend you visit the Phoenix Rising Forums and take a look at the "Active B12 Protocol" thread.

Hope this helps.
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Gluten-free since March 2010.

#7 1desperateladysaved

 
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Posted 20 January 2013 - 07:54 AM

I had food allergy/intolerance tests done. I ended up doing what I so dreaded, namely going on a rotational diet. But it took about 4 days and my fogginess/fatigue left, I exchanged it for a calm after the storm feeling. When you focus on what you might miss, it is sad, and to be honest you will miss it. But all and all it can be such a cheerful exchange in the end! One step at a time and keep moving.

I am still numb, though. It might be improving.

Feel better soon,

Diana
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