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What Made You Have Your Child Tested?

Hopefulmama

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Hopefulmama Apprentice
Hopefulmama
Posted

Do you or someone in your family have Celiac or G/I? Did you think something wasn't right with your child? Did your doctor suggest it? Had you heard of this before your child was diagnosed? Just wondering. Thanks!

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wolfie Enthusiast
wolfie
Posted

My suspected diganosis (my bloodwork was postive, but I went gluten-free before I saw the GI dr and felt so good I wasn't going back on gluten for the endoscopy/biopsy) and DS's behavior. He was being evaluated for ADHD and I asked his Ped to do the Celiac Panel before I would consider putting him on medication. His bloodwork was positive, as was his biopsy and he does have a diagnosis. Incidently, his behavior and grades have improved since going gluten-free.

Annie/NM Apprentice
Annie/NM
Posted

He was 3 and had the big D 5-6 times a day for over a month. After all the other tests came back negative they sent us to GI for Pediatrics. She was a nut and put him on a high fat diet, mentioned Celiacs but never tested him and I thought she did. 6 months later still had the problem, between constipation and D. He refused to eat much of anything, had black circles under his eyes, was really ADHD like and had bruises all over. I took him to a new GI. They repeated all the tests and did a Celiac panel. He was positive and they did the biopsy. Now gluten-free for a year, he is like a new child. He dropped from 100%ile to 50%ile but they didn't really notice since he was still a big boy for his age. He gained 5 pounds when he went gluten-free.

shan Contributor
shan
Posted

my daughter was so ill, her skin had the green look (of course i thought she still looked the prettiest of all the kids at daycare :) ). She hadn't grown in ages and we had already been accused of abusing her! We changed drs and country and she had a celiac panel as routine for any child that has FTT. Her numbers were crazy high,but now 1 year gluten free she is FAT :D

jayhawkmom Enthusiast
jayhawkmom
Posted

My wee one, who was almost 5 at the time, was throwing up every morning. She had "the big D" several times a day, every single day. She was always hunched over, complaining that her tummy hurt.

It took us a while to narrow it down. Her pediatrician could not find anything wrong with her. He sent us to an allergist, who found that she has food allergies, including wheat. We knew of other allergies, but some additional ones were found on top of the ones we were already aware of. Following that, he said her nose looked "gunky" and sent us to an ENT. The ENT assumed her tummy aches were due to the fact that she was swallowing "infected" sinus drainage gunk.

She had her tonsils and adenoids removed, and while she was recovering...and unable to eat solid foods, she felt better than she'd felt in years!!! But, that wasn't the answer we were hoping for, since as soon as she started eating again, she started getting sick again. In the meantime, her allergist HAD run a Celiac panel - and it came back while she was recooping from her tonsillectomy.

She's been gluten-free ever since.

dandelionmom Enthusiast
dandelionmom
Posted

Our little girl was pretty sick. She'd been worrying us for a while but the pediatrician kept dismissing everything "some kids are just anemic, some kids just get rashes, some kids just get sick a lot..." Finally, I requested an appointment to sit down and go over all of my concerns and demand some testing. They tested her for just about everything out there! I had never heard of Celiac Disease before she was diagnosed.

Since her diagnosis, we've learned that I also have Celiac Disease. Oops, guess I wasn't really lactose intolerant all these years. :huh:

jayhawkmom Enthusiast
jayhawkmom
Posted
Since her diagnosis, we've learned that I also have Celiac Disease. Oops, guess I wasn't really lactose intolerant all these years. :huh:

Same thing happened here. Woops.

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cruelshoes Enthusiast
cruelshoes
Posted

We had both of our kids tested immediately after I was diagnosed because they are my first degree relatives. My son had no outward symptoms, except for no growth for a year. His tTg was nearly as high as mine was, and I was almost dead. It really said a lot to me about how outward symptoms don't necessarily correlate to internal damage.

zenmama Newbie
zenmama
Posted

after 5 weeks of diarehha and blood/stool tests with no results or ARNP referred us to a PED GI who tested her for Celiac.

zenmama Newbie
zenmama
Posted

After 5 weeks of diarrha and blood/stool tests with no results or ARNP referred us to a PED GI who tested her for Celiac.

crittermom Enthusiast
crittermom
Posted

My Katharine had THE largest bm's I have ever seen out of a child in my life. I kept saying to my mom I have no idea where this poop is coming from! She also had blood in her stool. The dr thought that she might have a fissure due to the size of her movements. They prescribed suppositories (sp?) but they didn't work. Her bm's were still huge but now they were also turning greyish white. She also would not eat anything and complained of a belly ache constantly. Thank goodness after only 3 visits to the doctor (I know it takes years for some) my doctor said, this may be a long shot but lets do a blood test for Celiac. Her TtG came back at 28. The doctor said, "I know this is a little high but I am not exactly sure what normal is within the range so I am sending you to a GI". That was in June, when he got into the GI Katharine's TtGs were off the charts. Thank goodness our doctor was on the ball, she caught Katharine right as it happened! I love our family doctor she is wonderful!

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

I was the first one diagnosed in my family. My oldest was tested because she is my child and has other food allergies. My second was tested, begrudgingly by the drs, because of all of her health issues. Turned out the oldest is severly lactose intolerant, but not Celiac for now (No gene test done). The youngest had the gene, was blood tested and biopsied with "inconclusive results". I made her gluten free against the Drs demands and she is a healthy child now, looks so much better, ni longer starving 24/7, growing, gaining weight, no more behavioral issues, no more Big Ds or rashes, etc.

I needed my children officially tested, one because I have the disease and two to eliminate the argument years from now about if they really have the disease. In the end, I still have no medical test proof, but a reaction to gluten happens every time! Looks like I might still hear that argument when they grow up!!!

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    • trents
      Medication

      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
    • Julie 911
      Medication

      By Julie 911 · Posted

      Good day! New members here and I have a question about medication. My gastroenterologist made me stop some medication during the gluten challenge beforenthe screening test but I have a little surgery tomorrow and I need to know if I can use tylenol for half a day or if it will give me false results using it.   Thanks 
    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
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