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I Hope This Is Just An Odd Coincidence...


rgeelan

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rgeelan Apprentice

Emma, our 2 year old, has had allergies her whole life. As a baby she had severe MSPI (dairy and soy allergy) and I went dairy and soy free for a year because she wouldn't take a bottle. Well her symptoms that clued us in on that was diarrhea with mucus and blood in it. We reintroduced dairy at 13 months and she has had ups and downs but always bounced back fairly quick. At about 21 months she started having lots of diarrhea again. I dont' even know if you could go as far as to call it diarrhea or just pretty much liquid poop when it happens. I know it's not from fruit or juice because I have learned what over abundance of that does in the past and always make sure to balance her out. Well a few days ago I decided to test out Gluten since William (our 4 year old) has celiac disease and his first symptom was diarrhea all the time. So yesterday I went to change Emma's diaper and her poop is firming up now. I figured it had to be either Dairy or Gluten with her. The thing is that she didn't have as much milk the day before as she normally does so I am not 100% sure if it is because she had been totally gluten-free for over 36 hours at the time, or if it was because her milk intake was cut back. So yesterday I loaded her with milk to drink and am waiting to see what happens today. I figure I should give it a few days and see how things react and if the gluten-free seems to cure things I am going to have her doctors run the Celiac tests again (and possibly allergy test at the same time to make sure it isn't just an allergy).

At the same time I have been doing this though we put our baby, Sarah, on Nutramagin because she seemed to be reacting to both Dairy and Wheat when I would eat them. Yesterday she was a different baby, after just 24 hours on Nutramagin we saw a change. We are going to continue to make sure she doesn't have to go a step further to specialized formula with absolutly no dairy, but we can already see the improvement in her. The peds won't allergy test because of her age and how inconclusive it is at this young of an age. But taking out Dairy and Gluten made a difference for her so far also.

What would the odds be of all 3 of our children reacting to Gluten but my DH and I don't!!! I am hoping this doesn't mean that all 3 of them will have Celiac Disease. It is so hard on our son being 'different' but at least he was old enough when he was diagnosed to understand what was making him sick. I dont even know how I would begin to explain it to Emma yet.


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lbsteenwyk Explorer

Have you and your husband been tested yet? One or both of you may have celiac disease and simply be asymptomatic. Children typically have much more obvious symptoms than adults. It is now thought that the majority of adults with celiac disease have an "atypical" presentation with few symptoms, or "silent" celiac disease with no symptoms.

I think it is actually easier on children who are diagnosed earlier. My daughter began the gluten free diet at 26 months. I really didn't explain it to her until she was 2 1/2 and then only in very simple terms; at this age they accept what you tell them as the truth. If you say, you can't eat gluten because it makes you sick, they will believe you and the gluten free diet will just be a way of life for them. At least that's they way it was for my daughter. She never questions why she can't have gluten and just accepts that she can't have it. If she was just being dx now, we'd be having a much harder time!

Guest nini

celiac disease is genetic so the odds are high that all of your kids have it... and that either you or your hubby have it and just don't have any symptoms that are typically associated with celiac.

rgeelan Apprentice

I have quite a few of the 'common misdiagnosis' but when I had myself tested it was negative. My DH has no symptoms so he refuses to be tested. I realize that one of us at least carries the gene but we don't really know who...

I guess it's all denial for me at this point. I should have seen the signs earlier and challenged Emma's diet. But I didn't want to think that 2 of my kids could have Celiac when it is hard enough for the 1 already diagnosed. Part of me is still hoping it comes back as just an allergy but I know how much that Gluten challenge really means and her responding so quickly and positivly to it really makes me suspect she will be diagnosed with Celiac also.

Thanks for listening. I will update when we find out what the tests say...

Guest nini

Do you know what blood tests they ran on you? There is a specific panel that is recommended and if not all of the tests were run then the results could be a false negative (just a thought)

Also, keep in mind that you can have false negative results in children just as easily too. In fact, tests in very young children are extremely inaccurate, and if the Dr. wants to do a biopsy to look for damage (assuming that there is enough damage to find yet) it can only confirm Celiac but can't rule it out.

The gluten-free lifestyle really isn't (or doesn't have to be) that hard on the children or the rest of the family for that matter. And the more people in your family that are gluten free, the easier it is. You don't have to spend a lot of money on specialty gluten-free foods. I'm just full of ideas, so if your interested in some... feel free to e-mail me at nisla@comcast.net

  • 3 weeks later...
Indea88 Newbie

Our pediatric GI Dr. has Celiac himself and he told us that if you have Celiac ,your lactose intolerant? So they go hand in hand...I know others use milk products, but we dont based on his advise.I just use Pacific rice milk,its gluten free

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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.
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      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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