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Severe Symptoms In Muscles And Nerves After Coming Off Gluten?
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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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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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How is your thyroid? Might do to have it tested, if you haven't.

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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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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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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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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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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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