Gluten-free diet followed but child still experiencing joint pain

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I have an 8 year old who was diagnosed with Coeliac disease last May and has been following a gluten-free diet ever since.  Her symptoms previously were pins and needles in hands and feet, mouth ulcers, calcium marks on teeth, bloating, aching joints and bones, and small pink spots on the face. She is also quite small for her age.  Her symptoms have cleared up, However now and then she gets sick if we have problems with cross-contamination.  

My problem is that she is still experiencing a degree of joint and bone pain.  About 2 weeks ago was the last time she got sick because of cross contamination, but last night she couldn't sleep because of the pain.  Is this normal - does anyone else experience this?

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6 Replies

  • Posted

    Hi, some people do experience joint pain as a symptom of coeliac disease, when they've mistakenly eaten gluten.  Having said that because of the age of your daughter, I think it is very important to go back to your doctor and perhaps get referred to a consultant.  It may be a simple case of cross contamination with gluten but it could be something else.  

    Bear in mind, that coeliac disease is an auto-immune disease and there is an increased chance of having another auto-immune disease if you already have one.  (For example, rheumatoid arthritis - but I'm sure there would be other signs if this was the case).  I am not trying to alarm you, but I would always get things checked out by a doctor when it is a child, as their bones are still developing and I'm sure you would rather get it checked out, and find out it is nothing to worry about, than to risk missing something.

  • Posted

    Hi there

    Sorry about your little girl. I can't offer anything positive except to contact the coeliac society who I found very useful in the beginning. I did have the joint pains before diagnosis in 1998 but cleared up after going gf. Occasionally have stiff knees but I'm 72 so maybe to be expected ??

    Good luck


    • Posted

      Thanks - they have advised going back to Go as the joint pain should have gone by now.
    • Posted

      Pleased to say that fortunately she had negative results for all other autoimmune diseases. Consultant said that sometimes if you get glutened it can take a while for the gut to recover and therefore some people experience aching for a number of days / weeks. This has been really reassuring and we don't have to return for 2 years except to visit dietitian! 😀

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