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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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    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

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    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
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      By tiffanygosci · Posted

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    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

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