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What Made You Have Your Child Tested?


Hopefulmama

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Hopefulmama Apprentice

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

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

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

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

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

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
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

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

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

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

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

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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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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