Blood Tests In Young Children - Prometheus Labs (not Quest), Equivocal Results, Etc..

[betsy7]

I'm pretty new to the forum and have been reading through a lot of people's posts re: problems with the tests for young children. Just thought that I'd share my experiences with my son's testing.

Personally, I think children't tests should be handled by a lab like Prometheus, which specializes in celiac. And, if an initial test is invalid, equivocal, or even negative -- and parents still think that it could be celiac (family history, symptoms, etc..), you should retest!!

My son wasn't growing as well as our doctor thought that he should grow. At 15 months, he was 29.5 inches, 10%ile and just under 20 pounds. He had been at 10% (or near that) since birth and had constant mushy poop (but was breastfed until 13 mos...so that wasn't a red flag). He didn't have major celiac syptoms -- didn't have explosive diarrhea, almost never threw up or spit up, etc...

At his 15 month checkup, our pediatrician explained that we should wait until he was two -- if he didn't grow to 32 inches by 2 years, we would have to see a specialist to investigate growth hormone deficiencies or growth delays. My niece has celiac... so I requested a celiac test.

That week, he was tested through Quest labs and it came back equivocal (not negative / not positive) because his IgA was too low to make the test valid -- a common issue with young children (she explained). My pediatrican said that normally she would wait a year and retest, but since my niece has celiac (my sister's daughter), she'd retest in a few months. In the interim, we had my husband tested (I've already tested negative) in order to rule out celiac as the cause of our son's problems. We were shocked to get a call from his doctor saying that his test was positive. He's since had a positive biopsy as well.

Because of my husband's diagnosis, we went to the pediatric GI to test further for celiac in our son. About 6 weeks after the first test at Quest, we re-tested through Prometheus Labs (Open Original Shared Link). Our pediatric GI only sends tests to Prometheus. This time, the results were much clearer -- my son's test was positive. My son's symptoms hadn't changed in that six week time frame. So, in my opinion, the Quest test was just not a good test. If my husband hadn't been tested and we hadn't seen a specialist, who was more familiar with celiac and knew the best lab, chances are my son would have been tested again at Quest --- and tested negative. And, he could easily have ended up being put on growth hormones for his entire childhood.

I should say that we are still awaiting my son's biopsy results and he has just started a gluten-free diet... along with my husband. The biopsy may tell us if it's definitely celiac -- or it may be equivocal. In that case, we will have to wait to see if the diet helps him grow over the coming months.

Sorry for the long description of our experiences, but I just wanted to share our story in case you are currently testing your child for celiac. Please request the test through Prometheus. You may have to go to your local hospital's blood testing center/lab to do the test, but it's soooo worth it if it helps your child receive an accurate test. Also, if your child has had an equivocal test (not negative, but not positive either), don't be shy about having them retested through Prometheus lab.

[flagbabyds]

I completely agree with you. My sister had he tests done through Guest, and had positive, then had the biopsy, no damage whatsoever. Then did promethesus, and completely negative.

[mommida]

We didn't have a great experience with Prometheus Labs either. I would like to say that more labs had better step up to the challenge of getting any lab work ACCURATE.

L.