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Joint Aches And Pains...


*charliesmum*

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*charliesmum* Apprentice

Both me and my son were diagnosed with coeliac disease about 18 months ago now and have been on the diet for as long. I have suffered from achey joints for a while but it has become more noticeable recently. Sometimes my elbows, wrists, knuckles and every joint in my fingers come over with a dull achey feeling which can sometimes be quite painful.

Does anyone else suffer with this problem? Is it a direct result of coeliac disease? I see my dietician in 2 weeks time so will see if she can shed any light on the matter. I am also anaemic, could this be why?

Any comments would be much appreciated :) Thank you!


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nvsmom Community Regular

Yes! There are many of us who have joint problems. Some, like myself, thought we had lupus or RA because of the severity, but celiac disease can cause pretty horrible arthralgias too. The problem is that joint pain is often one of the last symptoms to go. There are some on the boards who took a few years to recover. My arthralgias actually got worse (after starting the gluten-free diet) before it got better after being gluten-free for about 8 months.  My joints now feel the best they have in about two or so years.

 

If you think your pain could be caused by something other than celiac disease, by all means, look into it, but if they find nothing, then you have to just give it time and it will most likely slowly improve over many months.

 

As for the anemia, I've never heard of that causing joint pain, although it too is a common celiac symptoma and can lead to a lot of fatigue. I know it wasn't a factor in my pain anyways, as I'm not anemic.

 

Good luck with the dietitian.  :)

GottaSki Mentor

My daughter and I both have these symptoms.  When I was first dx'd my gastro symptoms improved with the complete removal of gluten -- but the autoimmune symptoms all worsened with time.

 

If you are anemic it is possible you have not yet healed enough to be properly absorbing nutrients.  Have you had other nutrient testing, besides iron?

 

My Celiac Doc runs mine annually now -- for the first two years gluten-free I was still very deficient in most of these:

 

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc

 

Also might want to add the CMP and CBC if they haven't been run lately.

 

Healing can take a long time -- for me I had no improvement to my celiac biopsies (I had annual endos as I wasn't improving gluten-free) -- until my three year mark and even then the improvement was minimal.

 

Have you tried a food/symptom journal?  Some need to remove more than just gluten from the diet until healing happens.

 

Good Luck to you :)

 

Let us know how it goes with the dietician.

*charliesmum* Apprentice

 

 

Thanks to you both for getting back to me :)

 

I have just had bloods done which included U&E's, LFT's, FBC, Folate, Ferritin, Iron, Vitamin B12, Vitamin D, Calcium, Magnesium and t-TGAb. I have been prescribed Iron and Folic acid supplements but all other were ok. Still waiting on the t-TGAb which I should receive at my dietician appointment.

I am from the UK so don't know if tests are the same everywhere?

Also, before I was diagnosed I didn't have any 'normal' symptoms of coeliacs disease. No diarrea, sickness, bloatedness, tummy cramps. Infact I wouldn't have known I had it if it wasn't for my dad and son both having it. The only thing I did get were mouth ulcers, infact I hardly spent time without any! So if I did accidentally eat gluten now I would have no idea :wacko: As far as I know I eat completely gluten free. I would have thought after 18months I would have started to heal but it seems such a slow process :(

*charliesmum* Apprentice

Sorry I don't know why the comment I made above has an empty quote box :blink:

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    • par18
      Thanks for the reply. 
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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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