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Babies With Celiac

daphniela

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daphniela Explorer
daphniela
Posted

I don't understand how some babies are already diagnosed. My son's pediatrition said he hasn't had enough exposure to wheat, barley, and rye for antibodies to be built up. If he were tested now, he would get a false negative.

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HiDee Rookie
HiDee
Posted

My kids have never been tested so I'm not an expert but I do know that celiac testing is very unreliable on children, especially blood testing. It's even pretty unreliable on adults. I've heard of doctors sometimes diagnosing kids based on symptoms and response to the diet. Other methods might be through the endoscopy or biopsy.

I don't understand how some babies are already diagnosed. My son's pediatrition said he hasn't had enough exposure to wheat, barley, and rye for antibodies to be built up. If he were tested now, he would get a false negative.
swalker Newbie
swalker
Posted

At four months my Grandson developed intense colic. Turns out it was gluten and casein his Mom was eating that he got through her breastmilk.

heathen Apprentice
heathen
Posted

depending on how old your son is, his immune system may or may not be mature enough to mount an antibody response. If he is less than 6 months old, he is still using antibodies that he got from you (pretty cool, huh) while his immune system is warming up. If you are really concerned that gluten may be causing your child some problems, you can use other grains instead--just remember that you will have to load him with gluten before a blood test in order to get a response. hope this helps.

inskababy Rookie
inskababy
Posted
I don't understand how some babies are already diagnosed. My son's pediatrition said he hasn't had enough exposure to wheat, barley, and rye for antibodies to be built up. If he were tested now, he would get a false negative.

My son was just under six months old when he experienced a celiac crisis from an exposure to a barley teething biscuit. He had an intussesception (the bowel telescopes on itself) as a result and was hospitalized with dehydration and acute abdominal distension. Luckily, the intussesception resolved just as they were about to go into surgery.

We did blood testing -- it was negative. The pediatrician I saw said babies have a horribly low reactivity to the serological tests (no specifics), and he had been gluten free for two weeks by that point anyway after only two exposures.

At that point we did genetic testing. Normally genetic testing would be nothing more than informative, but because he was far too young to get positive results on a serological panel and an endoscopy wouldn't work without exposing him to gluten, our doctor felt comfortable with the positive gene test and positive dietary response that he could be diagnosed as celiac. It doesn't hurt that my older son has since has a positive blood panel and gene test as well, and my husband has had total remission of his stomach/headache issues since going gluten free. I doubt that my son would have gotten diagnosed this young or even at all if he was more like my husband and older son -- they are just cranky, tired and diarrhea prone. My youngest needs hospitalization for a crumb.

Many doctors are going away from endoscopies for real young ones especially when there's a demonstrated improvement on the gluten-free diet. As my doctor says, if the diet makes them feel better, then that ought to be enough for everyone involved.

Lisa Mentor
Lisa
Posted
depending on how old your son is, his immune system may or may not be mature enough to mount an antibody response. If he is less than 6 months old, he is still using antibodies that he got from you (pretty cool, huh) while his immune system is warming up. If you are really concerned that gluten may be causing your child some problems, you can use other grains instead--just remember that you will have to load him with gluten before a blood test in order to get a response. hope this helps.

Yup, you're gonna be a good doctor some day! Soon I hope. ;)

daphniela Explorer
daphniela
Posted
  • Author

He is 13 months.

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3groovygirls Contributor
3groovygirls
Posted

My daughter was sort of in the same boat. Here's what happened with her.

When I was breastfeeding her she was projectile vomiting left and right, SO SKINNY. She was the scrawniest baby. They claimed she had reflux so I pumped her full of Zantac. Then I switched to formula. HUGE improvement. Then she started solids, immediate FTT, vomiting, diarrhea, it was horrible. THe NP at the ped. practice suggested I cut out wheat so I did and she got MUCH better but I still noticed stuff like Cheerios or barely teething things bothered her. They said cut out all gluten, so I did. But at that point she had lost SO much weight we had to go see a GI dr.

He said she was also way to young for the normal tests to be positive, and besides that we had had her on a gluten-free diet for months before we saw him (It took forever to get in to see him). So he said in her case we'd do the genetic testing. IF she didn't have the gene then we could rule out Celiac. If she did have the gene (and no allergies to those foods) we could more accurately say Celiac. She ended up testing positive for the DQ2 gene. Given her very violent reaction to gluten combined with her FTT and the gene, he considers her Celiac. He said at some point in the future, when she's older and being underweight won't threaten her growth and development as much we can do a gluten trial and do the biopsy to be certain. But he really, really feels that she has it, they consider her to have it and we just need that as the official seal. But the genetic test was GREAT to rule it in or out!

He actually said we were very lucky to have the gene and get such a clear diagnosis. Many people are gene negative but still feel they have Celiac but can't figure out why they are so intolerant of gluten.

Country Girl Newbie
Country Girl
Posted

She is correct for the blood testing, but the endoscopy will still show the blunting of the villi.

  • 2 weeks later...
g1gg1e Rookie
g1gg1e
Posted
My daughter was sort of in the same boat. Here's what happened with her.

When I was breastfeeding her she was projectile vomiting left and right, SO SKINNY. She was the scrawniest baby. They claimed she had reflux so I pumped her full of Zantac. Then I switched to formula. HUGE improvement. Then she started solids, immediate FTT, vomiting, diarrhea, it was horrible. THe NP at the ped. practice suggested I cut out wheat so I did and she got MUCH better but I still noticed stuff like Cheerios or barely teething things bothered her. They said cut out all gluten, so I did. But at that point she had lost SO much weight we had to go see a GI dr.

He said she was also way to young for the normal tests to be positive, and besides that we had had her on a gluten-free diet for months before we saw him (It took forever to get in to see him). So he said in her case we'd do the genetic testing. IF she didn't have the gene then we could rule out Celiac. If she did have the gene (and no allergies to those foods) we could more accurately say Celiac. She ended up testing positive for the DQ2 gene. Given her very violent reaction to gluten combined with her FTT and the gene, he considers her Celiac.

Can I have your kids Dr? LOL

This was my YDD BUT we kept breastfeeding. I had an LC tell me to cut it out for 2 weeks and then test.WOW new baby! She wasnt making eye contact or acting normal before ( also FTT)...but after the elimination she was a normal baby.

FF to age 2 we got a full celiac panel and she also has DQ2. Our GI Dr. is a !@# and wont give me a copy..thats all the info I could squeeze out of the nurse on the phone. I concider her celiacs because its extreme her reaction...so worse comes to worse she is intolerent and her mommy is crazy! boo!

You should be able to get the gene testing done vary young.

Maiko Newbie
Maiko
Posted

In our case, I think we were blessed with a great doctor. A short history- I was diagnosed with IUGR at 32/34 weeks and they induced labor at 36. My son was 5lbs 4ozs at birth. The docs said he'd do better (put on weight) outside because the IUGR wasn't allowing any more growth. HA! He's never been on the growth chart. At 8 weeks old I asked about colic, he was fussy and seemed to be in pain. My pedi's P.A. suggested that I not eat any dairy, eggs or nuts to see if that would help (I was b/f). We didn't get any relief. At about 6 months old the P.A. suggested a load of bloodtests for an Endocrinoligist to review. I think there were 14 different tests (none for celiac disease). Once all the results were in we saw the Endo. He saw some interesting findings but I can't say specifically what they were. Something about his liver enzymes being elevated?? He suggested seeing his co-worker, the Peds G.I. about celiac information. I'd heard about celiac disease but didn't know anything about it. My husband and I have no family history, no reason to suspect it.

We wait months to get in and he says he wants to do a cheek swab for a DNA test. Test results came back positive for the gene but (again) I can't be specific. I'm going to call the lab today and ask for them. Peds G.I. says he wants to do the endo w/biopsy. I was scared but hopeful to get to the bottom of my little man's issues. At 16 months, he had the procedure. As we're becoming more educated with this, my middle child has the DNA test and in April had his endo w/biopsy. February, March and April go by....waiting for the G.I. doctor to compare both sets of biopsy results....it seemed to take forever! I finally got a call the last week in April to go gluten free. He's currently 19 months and weighs 18lbs. :(

My husband and I both had bloodwork but the tests came back "normal." DH spoke to a G.I. at the hospital and because of the kids' history, he's scheduled for a biopsy in July. I'm expecting baby #4 so they won't do anything else with me for the time being.

I'm thankful for our doctors having experience and the directions we've received so far. We live in a tiny town (military base) that doesn't have a lot of choices but I'm learning to make do.

mommida Enthusiast
mommida
Posted

My daughter did have an elavated blood test for one part of the Celiac blood test panel at about 16 months of age. She was hospitalized for dehydration during that time and I would not allow her to ingest any more gluten so the endoscopy was not done. The genetic testing showed she has both DQ2 and DQ8 Celiac genes.

The Celiac panel is not very reliable for children under 24 months. Genetic testing is still not 100 % reliable, and not always covered by insurance.

Takala Enthusiast
Takala
Posted

By law, they have to give you a copy of your test results if you ask for them. You paid for them, you own them, they are yours. They might try to bully you over the phone, but if you go back and tell them that, they usually cooperate, or if you go to the office and ask to speak to the manager and tell them they must let you have copies, by law or you're turning them in to the state insurance board.... it's a racket with a lot of these doctor's offices, they will attempt to not release test results without an appointment, and then you can't get the appointment - get after them.

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