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nvsmom

My Kids Tested Negaive :)

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I finally got my kids tests back, although my doctor only ran the ttg IgA even though I requested the the panel (which is IgA and EMA up here) and all three kids were negative. :) I'm accepting that for now. There is a chance they could have it, and a few mild signs, but all of their ttgIgA were very low.

The only test that came back a problem was their vitamin D levels; 2/3 kids were low and 1 was at the low end of normal. I found that odd since they take about 500mcg (?) per day and they are outside a fair bit.

The doc did not run b12 like I asked. :blink: Nor did he run some others I wanted.

Anyways, they are all slowy going gluten-free regardless. They are eating through the last of the bread and cereals. Hopefully I can find food my picky eaters will like before they run out of wheat foods so it's not too hard on them.

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ALL three of my kids and two grands tested negative upon my diagnosis (I went undiagnosed for 43 years - had a moderate positive tTG IgA although I had very severe intestinal damage).

ALL had different celiac symptoms ranging from severe autoimmune diseases to more minor digestive symptoms - one only had GERD and recurring canker sores.

Although celiac tests were negative, each had various low vitamins/minerals.

ALL improved gluten free :)

Because of our experience I encourage anyone with gluten intolerance/celiac to trial removing it from their kids diets if there are any celiac symptoms, preferably after blood work. The range of symptoms with this disease are so varied it leaves many that could be helped with a dietary change out of the loop.

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...

The range of symptoms with this disease are so varied it leaves many that could be helped with a dietary change out of the loop.

True dat!

(hat tip to Patteigh)

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Kids have a really high false negative rate, mine tested negative even though he vomited every day of his entire life until he went gluten free (and the endo showed damage).

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That's what I'm thinking for a couple of my kids... They could be celiac and the tests didn't show it.

Going gluten-free won't hurt them in any way, except they'll miss some flavours and textures for a while. Eating gluten-free, as far as I can tell, is usually healthier so going gluten-free is a win-win situation as far as I can tell... as long as we all survive the withdrawl! LOL

If they want to eat gluten when they are older (and buy their own) I'll support them, and beat into their heads the idea that they'll need to get tested every year for celiac, while watching for symptoms.

Thanks. :)

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It is difficult without a solid diagnosis, my eldest son has been sneaking gluten at school - so we are about to do a gluten challenge with him. If he gets sick and I can see it is from Gluten then I will probably just stop the challenge and not bother with the diag, having said that, because our whole family is gluten free, our food bill is between twice and three times what a normal persons food bill is, I *hate* that!

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Kids have a really high false negative rate, mine tested negative even though he vomited every day of his entire life until he went gluten free (and the endo showed damage).

This is so nice to hear that others have fallen in the false negative category with children. My middle daughter went lactose free at 11 months, and it took me three doctors, countless 'five diarrhea diapers a day' (at 3 1/2 years), and arguing with our current (and very understanding) doctor about diet to get him to order blood panels for Celiacs. Then she tested negative. We have family history of Celiacs, with adult diagnosis on both sides, though only I show any indication of symptoms and have never been tested. My DH and I decided to try the gluten free diet anyways. Within two months, even given some mistakes, Nyobi slept less, was happier, spoke more, moved more, and didn't cry when asked to walk for longer than five minutes.

Oddly enough, there was a pimply rash on the upper part of Nyobi's and my youngest daughter's arms. It went away, slowly, as well. so happy! And yeah, I guess the only definitive result those tests give is a positive.

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