Deciphering Results While Waiting For Endoscopy

[svroche]

My 4 year-old son has an endoscopy scheduled for next week, but I am trying to glean as much info and opinion as I can before the procedure. His bloodwork results were such that our pediatric gastro says he "wouldn't bet on it being Celiac" because the ttg and IgA were both negative. Here are his results:

TtG IgA: <3

Gliadin IgG: 43

Gliadin IgA: 8

As much as I would rather my son not have Celiac, I really want answers as to why he is so small and having eating issues. He was a normal sized baby at 7# 11oz and maintained 50th percentile measurements until about his 1st birthday. After that his curve kind of leveled off and even dropped, to where we are now at 1st percentile. Beginning around 8 months, he stopped sleeping through the night and would just scream while arching his back for hours through the night. He had extremely loose bm's, so we tried going dairy free for a while. When his symptoms continued, I just assumed he was a fussy baby and put him back on dairy. During that time he also had bouts with bronchiolitis and persistent fungal infections. As the years have passed, I had a former pediatrician wave off my growth concerns by saying since I'm small (5'4") it's no surprise my son is small (though his father is 6') We have recently changed doctors, and since at least Feb of this year, he has weighed only 29 pounds, even losing 2 ounces since he was there in Feb with a virus. He continues to have loose bm's a few times a day, and usually has to run to the bathroom in the middle of each meal, with lots of gas and loose stool.

I know that we are in great hands now with our specialist, and hopefully I will have some answers soon, but I could use some support, advice, and opinions from parents who have gone through this.

On an additional note, if my 4-yr-old is positive, I will definitely be testing my other children, especially my youngest, who was only 21# at her 2-yr-old check-up, which is below 1st percentile!

Thanks!

Sarah

[carecare]

Good luck next week. We are in a similar boat. Though, do you know if your tests were the deamidated gliadin IgG and IgA...because that will make a difference from what I've read/heard. If it was then it's more specific and higher chances of actually being celiac if the IgG is positive...like your son has. My son was high IgG deamidated gliadin only. I think I read that if that is high and the IgA is low then thats even more of an indication of celiac. We don't have biopsies scheduled until December. Just added gluten back into both sons diets and it's not going to be a happy 2 1/2 months...hoping the initial glutening was the worst of it and they don't continue to feeling crappy until their biopsy.

Good luck and hoping you get the answers you are looking for. If the biopsy is negative...doesn't mean you can't try gluten free to see if it helps!

[Skylark]

Was there a total IgA run? You can't interpret any specific IgA test without knowing your son makes a normal amount of IgA.

As carecare said, you also need to know whether you're looking at the gliadin or deamidated gliadin test. If it's deamidated gliadin it's more likely he's celiac.

[mommida]

Hi Sarah,

There are many things that can present with these symptoms. Really ASK the doctor what the endoscopy with biopsy is being done to "rule Out" or "rule in"?, what lab tests are going to be done on the tissue samples taken?,how many samples are being taken?, sorry lots my train of thought here.

Keep in mind that "normal" looking tissue needs to be examined. (eosinophils can be embedded under the "normal" looking surface and need to have the dye drop added to become visible.)

Too many distractions to think right now, I'll try and post later.

[mushroom]

Welcome to the forum, Sarah.

Yes. tjat does look like a very incomplete list of celiac testing. It would be possible to be negative on all those tests (if they are not the DGP) and still be positive for celiac on some of the other tests, especially as Skylark says with no total serum IgA run. Yes, in the biopsy the doctor needs to take at least 8 biopsy samples, not the 2-3 that so many doctors consider sufficient. Celiac damage is not consistent throughout the GI tract, and unless sufficient samples are taken it can be missed, because only extreme damage is visible to the naked eye (although suspicious areas can sometimes be ascertained). And yes, you do have to ask if he is specifically testing for celiac because so many have had endoscopies done and afterwards discovered that they didn't test for that but for something else . Just a heads up that just because you are seeing a "specialist" does not mean that he is extremely knowledgeable about celiac disease. Such doctors are actually quite rare.

Good luck on getting some answers from the scope

[M0Mto3]

I don't have any answers for you, as we are in a similar position right now with our 15 month old. Her weight was 50th% until after 2 months old. She is now around the 5th. I did have her off gluten with wonderful results for 3 months. However, we currently have her back on gluten in the hopes to get an official diagnosis.

I will be talking to her GI doc when we go back in a week to make sure if he does endoscopy he looks for all of the things you ladies listed. Thanks!

[svroche]

Thank you all for your input thus far. I do not know if his screening was deamidated gliadin or not; the lab results just say GLIADIN IgG and GLIADIN IgA, as well as TTG IGA. It looks like they did not do a full IgA level assessment, which I am now curious about as I have read symptoms of IgA deficiency. Our pediatric gastroenterologist is at Penn State Hershey Medical Center, and he clinicaled at Johns Hopkins, so I am pleased with his credentials and am hoping it leads to some answers. He told me he will be doing another blood draw during the endoscopy next; I would imagine he wants to do more in-depth blood work than the initial screening my pediatrician ordered. He also set us up with an appointment to see a pediatric nutritionist in early November.

I'm getting so anxious about next week. I don't think it's the procedure so much that is bothering me, but my worry over what they will find...or not find. It's so hard to see your child be the smallest in every social setting, and watch 2-yr-olds get bigger than your 4-yr-old. I know that overall his health is not in immediate danger, and I am so thankful he does not have chronic diarrhea, but I just want to shield him from everything!