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Parents, Friends and Loved Ones of Celiacs

Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.


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  • Posts

    • Lockgirl
      I have been using their toothpaste and some of their other products that are labeled gluten free. Sorry about that. It is so frustratingly hard to get clear answers from companies on gluten content.   
    • Beverage
      I've been using eos lip balms. I usually get it at costco. Eos has little round balms, but also stick ones like chap stick. Costco has both. They are labeled gluten free when you buy individual balms, but the combo package from costco isn't always labeled gluten-free. The company web site says they are gluten-free. I'm pretty sensitive, I use the balms all day every day, and haven't had any reactions. 
    • Beverage
      Last time i checked, Burts Bees does not label anything gluten free. They had 1 lip balm that contained gluten, and their site said their products can be made on shared equipment. 
    • cristiana
      I had rib pain, but also hip and leg pain - google sacroiliac pain, it's common in coeliacs. SI joint pain affects the hip, buttock and thigh area.  When I had it at its worst it was incredibly painful, a sort of burning sensation. If this is what your child is experiencing, she may find it helpful not to wear tight jeans or waistbands.  Any pressure around the area exacerbated the pain greatly.  Also, I am sure the lower quadrant bloating I was experiencing at the time made things a whole lot worse, that internal pressure seemed to add to the pain.   One other thing is that it is important that your daughter wears the right shoes, avoiding very flat unsupportive soles or heels, and doesn't overdo exercise that jarrs the joints.  The good news is that for me it did get much better as my gastric symptoms improved, particularly the bloating - but it did take a few months.  You may find these links helpful: https://www.spine-health.com/blog/common-triggers-si-joint-pain-and-how-prevent-flare-up#:~:text=The SI joint can become,the joint to flare-up. https://pubmed.ncbi.nlm.nih.gov/19504097/ If your daughter is experiencing rib pain, that could be costochondritis.  I had that too, and a similar sort of burning.  Again, when my GI symptoms improved so did the pain.  Bloating will still kick it off from time to time. But I am glad you are having D levels checked, as low levels can contribute to joint pain.
    • Russ H
      Approximately 1 in 3 adults have neurological symptoms on diagnosis. The mechanism and pathogenesis is unknown. These normally go into remission on a strict gluten-free diet. Common symptoms are anxiety, slow thinking, 'brain fog', memory problems and headaches. Although I think I have had coeliac disease in a mild form since childhood, my symptoms suddenly became much worse in later life. Along with the gastrointestinal symptoms and fatigue, I developed a tremendous sense of doom, anxiety and paranoia. The diet can be awkward at first but becomes easier with time.
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