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

Achy Hands And Joints

gheidie

By gheidie
in Coping with Celiac Disease

Recommended Posts

gheidie Newbie
gheidie
Posted

Hi, I have been gluten free since Aug 1st 2006 (took a good 6 months to achieve 100%) and I am feeling so much better. I know when I have gotten a hold of gluten, my symptoms come back quicker, and even just the slightest amount bugs me now.

This last week I have notices that my hands are achey and my joints... not sure what would bring this on, I plan on talking to my Dr about it but I thought I would see if anyone here has this symptom? And maybe what causes it it for them, if they have figured it out?

Thanks

Heidie

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

Celiac.com Sponsor (A8-M):


cmom Contributor
cmom
Posted

I'm not sure. My feet hurt daily, sometimes so much that it's painful to walk and I hurt alot for the first minute or so after getting up after I've been sitting for 20 minutes or so. I mentioned it to the doctor, but once again, got the condescending smile and that was it. I'm only 48 and wonder if I hurt this badly now, what will I feel like after 50. I have also been gluten free for several years. :huh:

frec Contributor
frec
Posted

I have been gluten free for 6 years. In the past year I started having achy hands and feet, especially first thing in the morning and when getting up from sitting. My muscles are so stiff that my pelvis is unstable and I have pulled several ribs out doing PT. I had a lot of tests this spring (for lupus, RA, and spondylitis, among other things) and my rheumatologist decided I have fibromyalgia. I've probably had it for some time but I recently started menopause and the drop in hormones kind of unmasked things.

I've had lots of food testing and done all kinds of eliminations and challenges so I am pretty sure this is not another food allergy. My doctor is Lyme literate and we don't think it is Lyme. Fibromyalgia is a real disease but it is not a very helpful diagnosis. It is not degenerative or particularly scary, but it hurts. There is no consensus on treatment and no particular test for it, just symptoms that are not accounted for by anything else. My rheumatologist actually said there was no point in seeing her further as there was nothing she could do for me. (argh) She recommended I get more sleep and see my regular doctor for pain meds if necessary.

Sorry that this isn't more helpful. I am getting acupuncture, taking nutritional supplements from my naturopath and doing gentle exercises when I get up in the morning. All are helping. I am sorry you are hurting!

mammajamma Rookie
mammajamma
Posted

Sorry you are hurting... I have only been diagnosed officially for a month but have been well aware of celiac for quite a while, it's in the genes! I think sometimes that one of the things that makes this so hard to deal with (and made me put off being tested) is that all the symptoms can be attributed to something else. For myself, I have found that every time I get an ache or a twinge or a feeling ANYWHERE, I start over-analyzing and wondering if it's celiac related. I know exactly the feelings you are talking about because I dealt with that for the last few years and it was much better after I went gluten-free. However, I think I got glutened in the last couple of days because the painful ankles and hands are back, not to mention the stomach issues :( But what I am trying to say is... if you're pretty sure you haven't been consuming gluten, isn't it possible that this isn't even celiac related?? Lots of people start feeling arthritis symptoms at this age, and it isn't related to anything except getting older! In any case, I hope you feel better soon...

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,667
    • Most Online (within 30 mins)
      7,748
    AubreyMBSMartin
    Newest Member
    AubreyMBSMartin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.