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Sick Ten Year Old

lpnnurse

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lpnnurse Newbie
lpnnurse
Posted

My ten year old daughter started having severe tummy pain, gas, nausea, and diarrhea about 6 months ago. I noticed it especially after she ate certain things. After many trips to the pediatrician with "everything looks fine", I started cutting things out of her diet that I knew were making her sick. After some google searches and just putting 2 & 2 together, I realized I pretty much had her on gluten free diet! Begged the doc for celiac panel blood test, tested for all four components and all came back negative! I can't believe it because she does soooo much better off gluten. She is still very thin (lost ten pounds in 6 months) but we are working on that. I have "slipped" gluten in on occassion to "test" and she gets gastro sympotms almost immediately. Gastro doc wants to do a biopsy in a month. I am so scared to give her gluten for the test... can't stand to see her doubled over in pain. Is it worth it to have biopsy? Not sure what to do. Thanks- this site has been a life saver! :-)

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Dixiebell Contributor
Dixiebell
Posted

Welcome lpnnurse!

With your daughter being gluten free or gluten light, that could cause a false positive on the blood tests. She really needs to eat more gluten for at least two months, maybe longer, before any testing. Maybe her Dr. could diagnose her based on her symptoms and her positive reaction to eating gluten free. Also you should get her vitamin and mineral levels checked to make sure she isn't deficient in any of them.

Can you post her testing results w/ reference ranges?

lpnnurse Newbie
lpnnurse
Posted
  • Author

Welcome lpnnurse!

With your daughter being gluten free or gluten light, that could cause a false positive on the blood tests. She really needs to eat more gluten for at least two months, maybe longer, before any testing. Maybe her Dr. could diagnose her based on her symptoms and her positive reaction to eating gluten free. Also you should get her vitamin and mineral levels checked to make sure she isn't deficient in any of them.

Can you post her testing results w/ reference ranges?

Gliadin A deamidate = 1 Ref range <20 <20 negative

Gliadin G deamidate = 2 Ref range <20 <20 negative

Tiss Transglutam IgA = 3 Ref range <20 <20 negative

Tiss Transglutam IgG = 3 Ref range <20 <20 negative

not sure what all this means except he is "sure it's not celiac". However, her symptoms suggest otherwise. Thanks for your response!

beefree11 Newbie
beefree11
Posted

Is it worth it to have biopsy?

hi lpnnurse and welcome. So sorry to hear your daughter isn't feeling well. I would definitely ask the doctor. The only thing I can determine is that if she will be requiring an alert concerning some foods at some point; maybe while at school, after-school activities, etc. kwim? Or if she goes on a clinical trial for a possible drug that may require a somewhat "conclusive" result, confirmed by a test that was ordered by a doctor? I am not sure. I do know there is a freshman in college, that I read about, that had to go thru the testing to be able to get special diet consideration while at university. Mainstream medicine puts alot of faith in THEIR testing, is why I wrote "conclusive"--I am not sure if a sensitivity can be determined with the intestinal biopsy or not. Also ask your doctor about any negative/positive results.

I would speak to the doctor about managing the myriad of symptoms during the glutening phase: diarrhea, stomach pain, inflammation, etc. In order to reduce any damage being caused while undergoing the test.

Find out about the lab that will be doing the test and the blood work follow up test, as well. I heard Qwest is not that good, opinion based - not factual. Perhaps there is someone here that can better direct you to a lab that truly knows how to complete these tests correctly. Going to an online lab independently and submit the bill yourself? I did that with some of my daughter's blood work when Qwest was making huge miscalculations with her thyroid numbers. Her insurance did reimburse. (LabCorp)

Some additional things to possibly check:

* antibodies AGA, EMA and most importantly Anti-tTG.

* Stool Fat test, to determine malabsorption level (test for Steatorrhea).

* Complete Blood count (CBC), to determine anemia.

* Erythrocyte Sedimentation Rate (ESR) to look for inflammation.

* C-Reactive Protein (CRP) to further watch for inflammation.

* Vitamin B12, D, and E to check for vitamin deficiency.

* Comprehensive Metabolic Panel (CMP) to analyze protein, calcium and electrolyte levels as well as to check liver and kidney functions.

For dietary restrictions at school and such, you may need to have her go thru all the rigors of testing. Wishing you all the best and Hope all goes well for her and YOU, too :)

Skylark Collaborator
Skylark
Posted

Gliadin A deamidate = 1 Ref range <20 <20 negative

Gliadin G deamidate = 2 Ref range <20 <20 negative

Tiss Transglutam IgA = 3 Ref range <20 <20 negative

Tiss Transglutam IgG = 3 Ref range <20 <20 negative

not sure what all this means except he is "sure it's not celiac". However, her symptoms suggest otherwise. Thanks for your response!

That is a completely negative blood panel. It sure is surprising given her symptoms. Maybe she wasn't eating enough gluten to get a positive result. Has she been tested for wheat allergy?

Will she have trouble in school getting gluten-free food if you just put her on the diet? One month may not be enough even for positive biopsy - studies show some people take more like 2-3 months and it sure seems unfair to put a kid in as much pain as you are describing. I'm glad I don't have to make a decision like that. :huh:

Roda Rising Star
Roda
Posted

I would say with her being gluten light/gluten free is what could have given you the negative results. The endo wouldn't be a bad idea if you were wanting to look for other things in addition to celiac. I opted out of the endo for my 6 yr old because of him having a positive blood test and me already being diagnosed. If he had been the first one suspeced of celiac instead of myself I probably would have done the endo on him.

lpnnurse Newbie
lpnnurse
Posted
  • Author

We do eat super healthy so it may have been that she didn't have enough gluten to test positive. I will be taking her for the biopsy, mostly to check and see if something else is going on. I will deff ask about how to keep her symptoms to a minimum while we are "glutenizing" her. Thanks again everyone! you guys helped a lot!

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mommida Enthusiast
mommida
Posted

There is a list of the usual suspects for the symptoms.

Celiac Disease/gluten intolerance

H.Ployri

parasites

Eosinophilic gastrointestinal issues (This is connected to "food triggers", even if it involves the esophagus ~young ones complain of tummy pain.)

Just wanted to put some more ideas out there that could fit with the symptoms.

You should be working with a ped. gastro. A lot of the possibilities can be ruled in or out from the endoscopy with biopsy.

I hope you get to work with a fantastic doctor and you daughter will feel better soon.

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