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21mnth Old With Some Symptoms?


kimber

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kimber Enthusiast

Hi

I'll try and make this as short as possible

My ds was diagnosed with reflux and started meds at 2 weeks old..he was transitioned from b/m to a hypo formula at 6 mnth and since then has been VERY irritable at all times with a very bad temper

He sleeps a lot but never ever seems well rested..he looks pale with dark circles

I always blamed his symptoms on reflux or food allergies but am starting to wonder if we could be missing something

He seems sensitive to dairy/soy and when he was younger tested - for the skin allergy test/wheat etc

He does seem very crabby after he east bagels, pasta, pizza dough etc..I've tried limiting but not excluding these fodds

His weight was an issue at one time but now he is small (short!) but is gaining steady and is in about the 20th percentile (up from the 8th percentile)

He actually has problems with very watery b/m or constipation but I don't know if that has anything to so with his reflux or allergy meds

We've changed/increased his allergy meds and reflux meds but nothing seems to help

We saw a GI a few mnths ago (before I was familiar with celiac) he did send my ds for b/w and all came back fine

Not sure were to go from here..he is VERY picky with his eating and loves to drink his bottles

I might just try a wheat free diet to see how he does but was looking for any feedback...

He just doesn't look healthy or like he feels well 99% of the time

Thanks so much for reading, Kim


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Jnkmnky Collaborator

He's young enough that the testing for celiac disease might be a false negative. If you want to try the diet despite the neg test, remember you have to be 100% gluten free in order to see positive results. There's no cheating and seeing improvement. My son's personality did a 180 four days into the gluten-free diet. Testing in the future will be difficult if you keep him on a gluten free diet because gluten must be in the body for accurate testing. At this point there is no good testing for young kids. I would guess that there will be better testing in the future, though. Personally, I'd make him gluten free and see what happens. A gluten free diet isn't that radical when you think about it and causes no harm that I'm aware of. The only difficulty is being 100% gluten free. But even that gets easier with time.

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KaitiUSA Enthusiast

I would try him on the gluten free diet...not just wheat free.

With kids under 2 testing can be inaccurate. If under 2, I would just try the diet out(100% gluten free) for a while and see how he reacts to it.

However, if you plan on testing him when he reaches that age he needs to stay on gluten because being gluten free will alter test results.

Guest nini

my daughter was dx with reflux as a baby and had major personality/behavioral issues whenever she ate any gluten containing foods. After I was dx with Celiac when she was 3, we found that she did better when she ate what I was eating (it was just easier that way) and when she was at day care or in the evenings after picking her up, she was cranky, irritable, sometimes downright violent... She looked like a starving Ethiopian with her stick arms and legs and bloated tummy... She had explosive diarrhea and projectile vomiting, chronic ear infections, seasonal allergies, yada yada... We had her tested and the b/w came back negative, but I'm convinced they didn't even do the right tests, and even if they had I doubt it would have been accurate because in young children the tests are looking for EXTENSIVE damage, and there just isn't that much damage in most cases yet.

After the test results were negative, with the support of her pediatrician, we decided to try the gluten-free diet and see how she did... 180 degree improvement. Like a totally different child. She has been gluten-free for over 2 years now and she is the healthiest child around!

So my suggestion would be, since you've already done the b/w, get the pediatrician's support on trying the diet, give it a really good try, at least a few months before you decide it's not working. I think you'll be pleasantly surprised. Keep a food diary too, as he may have other food sensitivities as well.

In my opinion, positive dietary response is the most telling indicator as to whether or not your child needs to be gluten free. It's a healthy diet, there are plenty of gluten-free kid friendly foods, and I will gladly help you with any suggestions or support you need!

kimber Enthusiast

Thank you all so much for your response

I am just so sick of stuffing him with more meds..reflux meds, allergy meds and not seeing any improvement

Nisla

When you have the time I would love some snack ideas/meals etc

He is very picky and eats mostly d&s free

oatmeal, cheerios, fruits, chicken, meats and cookies (I can't remember the name but I have boguht hims some maple gluten-free cookies from WF he loves!)

He also likes earth's best cookies

Thanks again for the support!

Kim

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    • trents
      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
      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. 
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      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
      @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
      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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