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Different Symtoms


jmcbride4291

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jmcbride4291 Contributor

I have read that many of us get crampy and vomit. I also have researched and found a variety of symtoms. My children never vomit. However had hair loss, weight prob's, attention,low energy, moody, social, learning and comprehension. Ones immune system is extremely out of wack, and tonsils affected with running a fever each week since 12/07. Also vision, dicorlered bowel, and emotional problems. Does this sound familiar. Is this common to have without vomitting or distension prob's. They even get skin prob's. Just looking for more validaion as if this is wxactly what to expect.


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gfgypsyqueen Enthusiast

Unfortunately this disease has many symptoms. My child and I had very different symptoms. Even our reactions are different. I thnk in the end, do a gluten challenge to test the diet is the only way to really "see" what it does for your child.

Ridgewalker Contributor

Yeah, we (my family) all have various symptoms.

My oldest son, my mom, and myself all get diarrhea and stomach pains, but my youngest doesn't. So far, he doesn't get GI symptoms much at all- his are neuro symptoms.

My mother and I vomit, but my kids don't.

I'm the only one that gets bad heartburn as a symptom... unless you count my brother, who refuses to try a gluten-free diet. <_<

Pretty much the only symptom that we all share is that we've all had horrible problems with our teeth. At my oldest son's first dentist appt, he had TWELVE cavities. And I am a tooth brushing Nazi.

It also affected my kids' immune systems, and my own as well. My oldest son was the first to go gluten-free. In the last month or so before we put him on the diet, he ran an unexplained low-grade fever every single morning. By mid-day, it would fade away.

For the past few years, for all three of us, it's been one infection or virus after another, from fall to spring. This winter has been really good for my oldest son, though-- again he's been gluten-free the longest.

2kids4me Contributor

The range of symptoms is vast - our pediatric GI doc said the symptoms of celiac in children can be much different than adults. We witnessed this first hand.

Both my children are diagnosed celiac - blood work and biopsy positive.

Daughter - migraines, neckache, backache, stomach aches, fatigue, NO diarrhea or vomiting, but had bloated belly, overweight ( Not skinny like the books say a celiac should be!). Gluten free diet : no migraines, WAY more energy, lost the bloated belly, lost weight, lost the dark circles under her eyes.

Son - stomach aches, leg pain, wetting the bed, unexplained blood glucose variations. Stabalized blood glucose readings after gluten free, stopped wetting the bed, no more stomach aches.

As you can see one child had mostly neurologic symptoms and the other had vague symptoms. Interesting finding was that our son had tremendous intestinal damage as compared to his sister - even though his symptoms were "less severe". Also , that his bed wetting stopped after being gluten free about 6 weeks.

The fatigue in our daughter was significant - it affected her behavior (when you are tired = cranky), lots of tears, slamming doors..... she smiles most of the time now! ( I say most of the time cause she IS a teen!!)

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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. 
    • trents
      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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