Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

False Negative Tests In Children Under 5

karenhockley

Recommended Posts

karenhockley Apprentice
karenhockley
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mygfworld Apprentice
mygfworld
Posted

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
Tatum
Posted

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
karenhockley
Posted
  • Author

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
Christine E
Posted

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
Christine E
Posted

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
OBXMom
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


chasing4 Rookie
chasing4
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,204
    • Most Online (within 30 mins)
      7,748
    DreDre
    Newest Member
    DreDre
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...