Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Severe Symptoms In Muscles And Nerves After Coming Off Gluten?

in the middle

By in the middle
in Related Issues & Disorders

Recommended Posts

in the middle Newbie
in the middle
Posted

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!

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

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.

Link to comment
Share on other sites
saaa-wheat<3 Apprentice
saaa-wheat<3
Posted

How is your thyroid? Might do to have it tested, if you haven't.

Link to comment
Share on other sites
in the middle Newbie
in the middle
  • Author
Posted

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!

Link to comment
Share on other sites
in the middle Newbie
in the middle
  • Author
Posted

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!

Link to comment
Share on other sites
ynot Newbie
ynot
Posted

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.

Link to comment
Share on other sites
1desperateladysaved Proficient
1desperateladysaved
Posted

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

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,225
    • Most Online (within 30 mins)
      7,748
    jhand
    Newest Member
    jhand
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...