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Hopefulmama

What Made You Have Your Child Tested?

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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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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.


Kim

"Life isn't about how to survive the storm

but how to dance in the rain."

Positive bloodwork 1/9/06

gluten-free since 1/12/06

Very positive dietary response

DS (12 years old)

Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006

gluten-free since 7/15/2006

DD (almost 6)

HLA-DQ2 positive

Celiac Bloodwork negative 2 different times

Still eating gluten for now.

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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.

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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

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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.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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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:

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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.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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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.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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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!


Melissa

Diagnosed Fibromyalgia March 2007

Mom to Katharine, 5 years old diagnosed Celiac Disease Sept 2006

Peanut allergy

Michael 3 years old diagnosed infant reflux at 6 weeks

Dairy Soy allergy until 22 months

Neg blood tests and biopsy Feb 2008

Positive gluten-free dietary response

You may have to fight a battle more than once to win it.

Margaret Thatcher

Fall down seven times stand up eight.

"I've decided that after air, water, and dirt, the next most common substance on the planet must be gluten!"

Toni Nolte, Overland Park, Kansas

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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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