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My 4 Year Old Has Been Gluten-Free For 2 Years But Still Seems To Be Very Small And Complains Of Muscle Pain


katifer

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katifer Apprentice

We found that my four year old has Celiac when he was 2 years old because he was not growing, hardly eating, hardly slept etc. He has been gluten-free for the last 2 years. I only cook gluten-free meals, and there is almost no gluten in our house. We are very careful and his school is careful.But he is very,very little still and he hates being small:( He has just started complaining that his legs hurt all the time.I give him a multi-vit., calcium, vit-D drops, and fish oil...what am i missing?? we live on an island out of the U.S that has very little blood testing options...if we are back in the States in the summer are there tests that you regularly have your child have. Any thoughts? What would you do? thanks for your time!!


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dilettantesteph Collaborator

Some of us are more sensitive to trace gluten levels than others. My son and I had to go to all naturally gluten free non processed foods to be symptom free. We also have to wash everything like crazy. Maybe try cutting down on some of the processed foods would help your son too.

Skylark Collaborator

If you're feeding him oats, take those out. I wonder about growing pains with the legs, because he's right at the age for them. Is that a possibility? A pediatrician should be able to tell since they see it all the time.

Beth03456 Newbie

My 4 yo has been gluten-free for a year and is also very small (3%) for weight. He's gotten a bit taller since going gluten-free, but he's still very short. It really bothers him and he gets frustrated about it. Our doctor encouraged us to give him Ensure or Pediasure to make sure he is getting enough calories. He's 4 1/2 now, and does seem to have gained a bit more weight, but I think its still on the same curve. He is doing well on the diet and hasn't had any cross-contamination based on blood tests. The doctors think its just his normal size for now. I have no advice but I thought I'd let you know you aren't alone with a small child.

ravenwoodglass Mentor

Are you and the school avoiding gluten in stuff like playdoh and glues for crafting stuff? That can be a gluten source that gets skipped.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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