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I Hope This Is Just An Odd Coincidence...

rgeelan

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rgeelan Apprentice
rgeelan
Posted

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
lbsteenwyk
Posted

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
Guest nini
Posted

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
rgeelan
Posted
  • Author

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
Guest nini
Posted

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
Indea88
Posted

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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      Hidden Gluten in distilled vinegar

      Take it easy! I was just prompting you for some clarification. In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution...
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      Hidden Gluten in distilled vinegar

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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