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False Negative Tests In Children Under 5


karenhockley

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karenhockley Apprentice

I got my son tested today and my Dr mentioned that there maybe a change the results maybe a false negative because of his age (he just turned 4) has anyone ever heard of this before? He's still on a gluten filled diet right now unless he wants cookies, all baked goods are gluten free because of me :)I"m wondering if I'm just stressing over nothing, which I tend to do when it comes to my 3 little ones.


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mygfworld Apprentice

I got my son tested today and my Dr mentioned that there maybe a change the results maybe a false negative because of his age (he just turned 4) has anyone ever heard of this before? He's still on a gluten filled diet right now unless he wants cookies, all baked goods are gluten free because of me :)I"m wondering if I'm just stressing over nothing, which I tend to do when it comes to my 3 little ones.

i've heard that false negatives are common in young kids. My yougest was tested and biopsied as a 2 year old. The results were "inconclusive"! What in the world does that mean? Dr said shes negative and fine. No more testing to be performed. So i made her gluten-free/cf against drs orders. Within a week she showed signs of improvement. I wish i had a positive biopsy for her. It would eliminate the drs questioning why i made her gluten-free/cf. She reacts to gluten and has improved greatly on the gluten-free/cf diet.

For your child, if the blood test results are negative, you can have gene testing done. if the biopsy was negative, you can also just make the child gluten-free for a few months and look for improvements or reactions. Good luck

Tatum Rookie

Wow, this is interesting! My 16 month old just tested negative & I could have sworn up & down Celiac is what she has. Maybe I'll try a gluten-free diet anyway and see what happens. I guess it can't hurt!

karenhockley Apprentice

Thanks for the info. I was leaning towards just putting him on a gluten free diet but I was wondering if anyone else had heard of this.

  • 2 weeks later...
Christine E Newbie

Thanks for the info. I was leaning towards just putting him on a gluten free diet but I was wondering if anyone else had heard of this.

Christine E Newbie

My son was diagnosed at age 1. His blood screens have always been negative. The doctor diagnosed him based on a positive genetic test and a successful gluten-free diet. He did have an endoscopy that showed slight "changes" but now at the age of almost 6 he has never tested positive on the blood screens.

OBXMom Explorer

Our pediatrician told me he thought my son had celiac disease at 2, put us on a gluten free diet and sent us to a specialist. My son tested negative, maybe because of his age and maybe because he had been on a gluten-free diet, either way, I'm still sad that he wasn't diagnosed until 7. When I think of all the problems he could have avoided. . .Wish I had known about this place then, maybe I would have figured it out.


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chasing4 Rookie

I've heard the same thing, that there are a lot of false negatives with kids under 5. My daughter was diagnosed at 5, who is now 7, and she's made a huge improvement. My son, who just turned 4 in December, is showing almost all the same symptoms she had when she was 4 and I'm positive he has Celiac too. I'm not gonna worry about getting him tested at this time, since it may come through as false anyways. I have just decided to change his diet and he has been doing a lot better.

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      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
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