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False Negative Tests In Children Under 5
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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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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

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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!

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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.

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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.

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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.

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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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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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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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