Jump to content
  • 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 Our Content
    eNewsletter
    Donate

Bone Aches And Weird Pains


GlutenGuy36

Recommended Posts

GlutenGuy36 Contributor

Does anyone else in here have any bone pain? It's more of an ache than a sharp pain. I had this in my left leg yesterday along with some weird sensations in my head.

Before going gluten free as of July 14th 2008 I use to eat pizza about three to four times a week. That was seriously for about 18 years. I just turned 37 and I feel like I'm 70.

I was always very active with no weight issues. With the celiac diagnosis on July 14th I started the gluten free diet and I feel marginally better than I did. In some regards I feel worse. I'm having insomnia, tinnitus, weird pains in my head from time to time, fatigue, lower back pain ( i have a herniated disc between l5 and l6 ).

I was in agony for 10 months before the even diagnosed me. I didnt have bad D. If anything I was constipated alot which didn't make sense to the doc's. I just had severe abdominal pains. That't how this all started.

I have had tons of tests in the last two years. cat scans of abdomen, pelvis, chest....Mri of the same , Mri of the spine, I saw a hemotologist, psychologist, endocrinologist etc. The only things they said I had was Celiac Disease, Hypothyroidism and a herniated disc. I had to quit work and I was on state insurance which they are kicking me off of because I got 5,000 dollars in unemployment last year. I guess that will pay for 30,000 worth of emergency room visits and all of my tests.

I just am scared, always thinking I have something else that this can't possibly make me feel this way still after 6 1/2 months of being gluten free with a few slip ups. I use to weigh 223 ans now I'm 203-205.

There are nights when I just wanna sob .......I know that's corny and I'm a guy but I'd rather have the pain of my two broken ribs again then have to deal with this crap everyday. :huh:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



oceangirl Collaborator

GlutenGuy,

I am sorry you are still not feeling well. You've probably heard the song and dance about a million times about checking all products for hidden gluten? I had HORRIBLE bone and abdominal pain before going gluten free 4 years ago and still can get that if I get accidentally you-know-whatted.

It sounds like you have had a pretty thorough medical work-up so it seems like there's a good chance gluten is sneaking in. Hopefully others will post because I don't think I'm much help. Please feel better soon!

lisa

oceangirl Collaborator

Oh, and I know I'm a girl, but I've sobbed myself to sleep over the pain many a night- seems like a pretty appropriate response to me!

lisa

ang1e0251 Contributor

I'm so sorry you have to go through this. The pain isn't the only thing, it really is emotionally draining when you feel your body is working against you.

I feel you are still reacting to some food or product you are being exposed to. How are your vitamin levels? Do you supplement A, B12 and magnesium? Those are pretty important to celiacs. A lot of my lingering muscle pain was helped with the sublingual B12.

What's your diet like? Do you eat dairy, alternate grains, xanthum gum? When I'm having an ongoing problem it helps me to keep the food/symptom journal for at least a few days. Sometimes that helps me see what was staring me in the face all the time.

If you can tell us a little about your diet and food preparation, I'm sure someone will see something that could help you. In the meantime, I hope you feel better this weekend and I'll be watching for updates from you.

Archived

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

  • 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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,859
    • Most Online (within 30 mins)
      7,748

    Santa Don
    Newest Member
    Santa Don
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.