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

Dianosis Help?

sore joints

Recommended Posts

sore joints Apprentice
sore joints
Posted

Hi everyone!

When I read all of your letters, I feel guilty because I'm not suffering in the same way as most of you and can't imagine what all of you are going through.

For 3 years now I have been suffering from bouts of joint and bone pain. It started following pregnancy. I've been through every test known. Now I also have very low ferriton and fatigue. I recently took a Celiac blood test and it came back as mildly abnormal. Did the doctor bother to tell me what this means...NO. She referred me to a gastro doc but I just found out that it will take 11 months just to get an appointment. What the hell. I'm going through another flare-up of pain and do not want to wait any longer. Apparently my naturalpath can do an allergy test to determine if I am sensitive to gluten. What do you think of this. After the test I'm thinking of going of gluten to see if I feel better. Anyone have any opinions on this?

I would really like to hear from others who have similar bone and joint pain. Any advice would be greatly welcomed. Thanks!

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

Celiac.com Sponsor (A8-M):


MNB Newbie
MNB
Posted

Dear Sore Joints:

Although your symptoms could be caused by Gluten Intolerance (joint pain is common from what I can tell on this site), you may want to consider other possibilites.

I am recently NOT a fan of MD's and it was a Homeopathic Doctor that identified my gluten-allergy symptoms, but the joint-one pain you are describing sounds alot like what I was feeling before I was diagnosed w/ Lupus. Have the doctors tested you for any other auto immune disorders? (Fibromilagia, lupus, MS?). It took the doc's several years to diagnose me with lupus and I assumed when I recently got sick this time it was the lupus but come to find out it wasn't - it was the gluten.

I wouldn't rule out anything and don't believe everthing the MD's tell you - 11 months for an appointment is obnoxious! :o Get a new Doc or go with the Naturopath to at least get a definitive answer on the allegy.

Good Luck!

Link to comment
Share on other sites
CarlaB Enthusiast
CarlaB
Posted

You can order a test at www.enterolab.com and you will know within two weeks after sending in the sample. Check out their website. I was happy with their service.

Link to comment
Share on other sites
Lymetoo Contributor
Lymetoo
Posted

Also explore the possibility of lyme disease. The tests are lousy, but if you need information, feel free to contact me!

welcome! :)

Link to comment
Share on other sites
AndreaB Contributor
AndreaB
Posted

I also like enterolab if you want to check for intolerance to gluten. They also include a gene test, ttg and malabsorption in the whole gluten package. I think it still includes dairy at no charge. They also offer testing for soy/egg/yeast.

Link to comment
Share on other sites
sore joints Apprentice
sore joints
  • Author
Posted

Hi! Thanks for the great replies. I've been tested for MS, Lupus, Rheumatoid Arthritis, Bone Cancer, and who knows what else. I will check out enterolab and do my testing through the naturalpath and if all else fails, I guess I try going gluten free to see if I feel better. I have no idea what this type of diet entails. I guess I'll have to spend some time researching products and ingredients. Thanks everyone.

Link to comment
Share on other sites

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
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    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...