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How Many Kids Tested Positive At Around 2yrs Old?

Electra

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Electra Enthusiast
Electra
Posted

I'm just wondering because my daughters pediatric GI swears up and down that the endoscopy is just as reliable in a 2 yr. old then in any other age? All the literature says otherwise!! How many of you have children who tested negative with a biopsy or blood tests at the age of 3 or younger and then later found out your child did indeed have Celiac? Thanks so much everyone!!

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gfp Enthusiast
gfp
Posted
I'm just wondering because my daughters pediatric GI swears up and down that the endoscopy is just as reliable in a 2 yr. old then in any other age? All the literature says otherwise!! How many of you have children who tested negative with a biopsy or blood tests at the age of 3 or younger and then later found out your child did indeed have Celiac? Thanks so much everyone!!

very good idea :D

ptkds Community Regular
ptkds
Posted

My dd tested positive through bloodwork only (we didnt do the biopsy) when she was only 15 months old. I think she had it from birth because I had it when I was pg with her. She is now 20 months old and is doing great on the gluten-free diet!

ptkds

dahams04 Apprentice
dahams04
Posted

My son had the biopsy first just before his 3rd B-day. It turned out positive, showing a lot of blunting, but all the bloodwork following was normal. ...That is why I don't trust bloodwork at all. Hope this helps.

Electra Enthusiast
Electra
Posted
  • Author
My son had the biopsy first just before his 3rd B-day. It turned out positive, showing a lot of blunting, but all the bloodwork following was normal. ...That is why I don't trust bloodwork at all. Hope this helps.

Wow that does help. My daughters bloodwork came back normal, but I'm positive she has Celiac. She has all the classic signs and then some. I'm just hoping (if she indeed has it) that it's confirmed on the day of the biopsy!!

jayhawkmom Enthusiast
jayhawkmom
Posted

Our pediatrician, allergist, and GI all agree that the testing in ANY form on a child under two is very unreliable.

That being said, my oldest child tested negative at 2 & 4 - and just had positive blood tests (tTg, IgA, & IgG) at 8.5.

They obviously didn't detect it two previous times. He did not have a scope or biopsies either time previous, since the tests results were *so* negative that they had no basis to further explore.

My 5 year old had questionable blood (her tTg and IgAAB's were as high as they could be in the reference range, her IgG ab's were more than 7 times the reference range high). And her biospy showed no visible villi damage. However, she had duodenal ulcers, inflammation, and patchiness. Once put on the gluten-free diet... she grew 3 inches and gained 5 lbs within 5 months, after not having gained weight or grown in height in almost 3 years.

Juliet Newbie
Juliet
Posted

My son was two years and 1 1/2 months when the bloodwork came back as possibly having Celiac and the biopsy then confirmed it.

I do not argue that the testing is normally unreliable, but our son was so sick at the time that we honestly thought he wasn't going to make it. He went from having minimal symptoms that could easily be written off to other things (which our pediatrician did do, even when he was getting extremely sick) to being hospitallized for having fluid around his heart and in his abdomen, as well as liver damage, in about a month and a half. So the blood test and biopsy actually worked because, I believe, his symptoms were so severe.

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rez Apprentice
rez
Posted

Wow. This is a great link and a very powerful story. I hope everyone reads these stories when they are debating to have the blood test. It just shows that complications, major ones, can arise. I feel it is so important to TRY, and notice I said try, to get an accurate diagnosis. My son's blood was positive and now we're going for a biopsy.

gfp Enthusiast
gfp
Posted
Wow. This is a great link and a very powerful story. I hope everyone reads these stories when they are debating to have the blood test. It just shows that complications, major ones, can arise. I feel it is so important to TRY, and notice I said try, to get an accurate diagnosis. My son's blood was positive and now we're going for a biopsy.

Much as it makes a lot of sense to get the diagnosis I think its worth considering the other side too.

The problem is it all depends on circumstance.

Poor Juliet was in one set but that might not be the same for everyone....

For me the main thing to consider is if your child's specialist actually beleives the tests are not reliable in infants.

If they refuse to consider the test may be a false negative then you are risking being stuck with a "diagnosis" of anything BUT celiac disease. If they continue to be ill regardless or respond to a gluten-free diet then you are potentially stuck with a "certificate" saying that is the one thing they don't have. This is going to make getting them to do testing (and insurance to pay) at a later age when the tests are more reliable more difficult. Of course you can also argue that by dismissing celiac they might find and treat something else so its really something IMHO that has to be considered case by case.

Electra's purpose of this thread is as I understand to gather as much info as possible.... hopefully she will be able to make that decision then herself.

As such it would help I think if we all tried to just give facts without saying testing should/should not be done..(although noone has done this yet).. I'm sure this is an emotive subject and I'm sure there are good and bad stories in both directions but perhaps we can help Electra (and probably lots of mothers as well) by just compiling the facts?

I'm thinking if this is kept reasonably civilised without any "attacks" on MD's etc. she can print it out as is :D much as I realise lots of members have probably got terrible horror stories.

wendyw Newbie
wendyw
Posted

My son tested negative for celiac at 9 months. He's now 12 months old and we've been wheat/gluten free for nearly 8 months or longer. However, he also reacts badly to dairy, soy, corn, egg, citrus, tomato, tree nuts, peanuts, strawberry, chocolate... He's exclusively breastfed, so it's through my diet that I measure the changes in his behavior, spitup, excema and stool/rashes. I feel pretty certain the test is worthless at this age as are allergy tests judging from our homework here. ;)

Granny Garbonzo Apprentice
Granny Garbonzo
Posted

The doctor my daughter used for both my grand kids doesn't take any chances. He tells her to keep them away from gluten and then when they are at least one year old you can try it if you want, but he says it doesn't hurt anything to just keep them off it anyway. Now my oldest grandaughter is 5 and youngest is 2. No tests have ever had to be run because we just didn't give them gluten then tried it and they got sick. We SEE the results of their eating gluten. I don't really understand why people feel they have to have some test that proves they have celiac disease. If the gluten might be making you or your child sick, then just stay away from it for a long time and you will know if you feel better. Simple.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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