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Achy Hands And Joints

gheidie

By gheidie
in Coping with Celiac Disease

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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

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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...

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    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Need advice for some relief!

      By suek54 · Posted

      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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