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

Recommended Posts

gheidie Newbie

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

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

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

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.

  • 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. - Scott Adams replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Malt vinegar

    2. - Scott Adams replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      55

      Supplements for those Diagnosed with Celiac Disease

    3. - Scott Adams replied to MoniqueCham's topic in Related Issues & Disorders
      2

      Celiac Disease, Lymphocytic colitis and Bowel rupture

    4. - KelleyJo replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Malt vinegar

    5. - HelenH posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Malt vinegar

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

    • Total Members
      133,547
    • Most Online (within 30 mins)
      7,748

    Lynette76
    Newest Member
    Lynette76
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used.
    • Scott Adams
      A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination with hematology because of the immune cell changes involved. Focusing on nutrition is absolutely important — many people benefit from working with a registered dietitian who specializes in celiac disease to help address malabsorption, weight loss, and vitamin or mineral deficiencies. You’re doing the right thing by seeking information and support. Make sure you feel comfortable asking your care team direct questions about your biopsy results, treatment plan, and monitoring strategy — you deserve clarity and a coordinated approach.
    • Scott Adams
      I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 mg weekly is extremely uncommon. In people with celiac disease — especially refractory celiac — there can already be underlying intestinal inflammation or altered mucosal integrity, which might theoretically increase vulnerability, but there isn’t strong published evidence clearly linking stable celiac disease to a markedly higher risk of methotrexate-related bowel perforation. Other factors such as concurrent inflammation, vascular compromise, infection, steroid use, or microscopic colitis may also contribute. It would be reasonable to review the case with a gastroenterologist familiar with refractory celiac and possibly a rheumatologist, and to report the event as a potential adverse drug reaction. I’d also be very interested to hear if others in the community have had similar experiences.
    • KelleyJo
      Yes,  I've reacted to malt anything . . . it does come from barley.  I'm super careful to avoid anything containing malt or even maltodextrin unless it's labeled from corn.
    • HelenH
      Having avoided gluten well for many years I think I may have had a salad with Malt Vinegar and it was one of the worst 'attacks' I have experienced. I just want to know if anyone else has been so badly affected by malt vinegar.  
×
×
  • 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.