Need Help Interpreting My Son's Test Results

[scdlee]

My 8-yr old son got some testing done for vitamin deficiency/malabsorption and one of the tests was a celiac profile (from Genova Diagnostics).

The results are as follows:

Anti-Tissue Transglutaminase IgA

Result: 3.25 Reference Range: <=3.99 U/mL

Commentary of test results states: Negative IgA-tTG

Anti-Tissue Translutaminase IgG

Result: 3.25 Reference Range: <=5.99 U/mL

Commentary of test results states: Negative IgG-tTG

Total IgA

122.0 Sufficient Reference Range: 48.0-266.0 mg/dL

Commentary of test results states: IgA Sufficient

Anti-Gliadin Antibody Iga

Result: <1.23 Reference Range: <=4.99 U/mL

Commentary of test results states: Negative IgA-AGA

Anti-Gliadin Antibody IgG

Result: 1.69 Reference Range: <=9.99 U/mL

Commentary of test results states: Negative IgG-AGA

What do these results really mean? My doctor was concerned about the IgA-tTG number since it was 3.25 and the reference for it was 3.99. According to the commentary of the test results it states this specific marker has a 95% chance to have celiac. My dr stated my son didn't have celiac now but since this number was high if he didn't go on a gluten-free diet for at least 6 months he was almost certain to get celiac down the road as 'his numbers would only get worse. He thought he would be able to get off the diet after 6-months and be ok from then on out...

My wife and I are new to all of this and are unsure if this information is true and if the gluten-free-diet is really needed or not. Your thoughts?

Thanks for your help!

~Scott

[Lisa]

Here is some information regarding serologic testing:

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You doctors statement confuses me. Once a personal has Celiac Disease, it is for life and the gluten free diet is mandatory. Thirty years ago, it was often thought that an intolerance to gluten could be out grown. That is no longer considered accurate.

A positive dietary response, coupled with malabsorption issues, may very well indicated Celiac. The tests are inconclusive, although false negatives are common, especially among children.

[scdlee]

Hopefully I can clarify a couple of things...

Our dr has NOT diagnosed him with celiac. He was concerned about the IgA-tTG result since the result was 3.25 and the reference range was 3.99. Does that mean if his number was 3.99 my son would have celiac disease?

The reason he put him on the gluten free diet at this point is that he thought if we remove gluten from his system for awhile then his IgA-tTG number would go down further to help prevent celiac?

Also he said his 'Total IgA' (which came back as sufficient) was good 'protection' from celiac but again wanted to remove gluten for awhile to further prevent celiac...

None of my son's numbers are above the reference range which I thought was a good thing which means he doesn't have celiac right?

I am so confused...

[elle's mom]

Our dr has NOT diagnosed him with celiac. He was concerned about the IgA-tTG result since the result was 3.25 and the reference range was 3.99. Does that mean if his number was 3.99 my son would have celiac disease?

For what it's worth when my daughter was dx'd celiac her ttg was "over 1000". This may or may not mean anything in comparison to your son.

The reason he put him on the gluten free diet at this point is that he thought if we remove gluten from his system for awhile then his IgA-tTG number would go down further to help prevent celiac?

I'm not sure you actually can PREVENT celiac; it seems to me that if his ttg does go down after being gluten-free this only solidifies the probability that he is at least gluten sensitive. Disclaimer: I am NOT an expert; only someone who's been doing a lot of research the past year or so.

Also he said his 'Total IgA' (which came back as sufficient) was good 'protection' from celiac but again wanted to remove gluten for awhile to further prevent celiac...

Again, I'm no expert but have never read IgA to protect against celiac. The main significance I've read regarding IgA is that if it's deficient it just makes testing more difficult because the celiac antibodies are undetectible/because there's no IgA.

None of my son's numbers are above the reference range which I thought was a good thing which means he doesn't have celiac right?

Sounds right to me, but maybe since the ttg was close to abnormal you should tread lightly???

Can someone smarter please help this guy??

I am so confused...

ME TOO!

[lizard00]

What Momma Goose is saying, and what your further research will confirm, is that once you have celiac, it doesn't go away. So, your son is creating tTG, which is a specific test for celiac. It may not be above the range, but it is there, and your doctor is concerned it will go higher and he will then develop celiac.

In all likelihood, your son already has celiac, but his bloodwork falls just below range. As you see often here: It's like being pregnant. You are, or you aren't.

Your doctor's idea of putting him on a gluten-free diet for 6 months to keep him from developing celiac makes no sense. If his symptoms get better and his bloodwork goes down, that alone indicates that he needs to stay away from gluten. Once he tries to reintroduce it, the process will begin again.

Having sufficient IgA is just a basic part of his immune system. Specifically IgA works against cold, flu, etc. I can't say that I've ever heard of it being a celiac preventative, but it could make sense as a lot of celiacs are IgA deficient.

Welcome to the forum

Hope we didn't overload you...

[scdlee]

Thanks for everybody's initial responses. What kind of doctor typically diagnoses celiac? A pediatric gastroenterologist? Oor current doctor specializes in 'integrative medicine' whatever that means...

My son has never had any stomach issues at all - he does suffer from some anxiety and the dr found him low on Iron and a few other things..

We did start the gluten-free diet about two and a half weeks ago - no change at all in my son (behavior or otherwise)... the biggest thing we are struggling with is food for school lunches..

any and all information is helpful...

tx!

[elle's mom]

Thanks for everybody's initial responses. What kind of doctor typically diagnoses celiac? A pediatric gastroenterologist? Oor current doctor specializes in 'integrative medicine' whatever that means...

My son has never had any stomach issues at all - he does suffer from some anxiety and the dr found him low on Iron and a few other things..

We did start the gluten-free diet about two and a half weeks ago - no change at all in my son (behavior or otherwise)... the biggest thing we are struggling with is food for school lunches..

any and all information is helpful...

tx!

Yes, our dd was diagnosed by a pediatric gastroenterologist. I know there ARE some celiacs withOUT stomach issues. Neurological (such as anxiety) are commonly the only symptoms. My dd's MAIN one IS behavioral, although she did have constapation too, and low growth rate etc. We noticed behavioral differences within a week after beginning the gluten-free diet.

On the lunch thing: there is pretty good premade gluten-free bread by "kinnikinnick", but you kind of have to toast it for it to taste any good. My dd has that with gluten-free PB & J almost every day for lunch. Fruit slices, baby carrots, gluten-free pretzels (by Glutiono), and there are several chips also gluten-free. Will he eat salads?

[Lauraceliacmom]

Thanks for everybody's initial responses. What kind of doctor typically diagnoses celiac? A pediatric gastroenterologist? Oor current doctor specializes in 'integrative medicine' whatever that means...

My son has never had any stomach issues at all - he does suffer from some anxiety and the dr found him low on Iron and a few other things..

We did start the gluten-free diet about two and a half weeks ago - no change at all in my son (behavior or otherwise)... the biggest thing we are struggling with is food for school lunches..

any and all information is helpful...

tx!

My son was diagnosed at 8 years old, and has been Gluten Free for a year in a half. We have had the most luck with our Pediatric Allergist, and he also knows how to interpret the blood results. So maybe shop for a doctor who really understands Celiac.

I make my sons lunch everyday, THE BEST SANDWICH BREAD is UDI's, made in Denver CO, but can be found at some Whole Food locations, and you don't have to toast it. I include yougurt, PPJ, many Lays chips are gluten-free, Envirokids snack bars, fruit, carrots, Whole Foods Baked goods in freezer section has the BEST cookies. Pamela's makes a great mix for choc. cake. Chex cereal has a whole line of gluten-free cereal. Belle and Evans (found at Whole Foods) makes great breaded Chicx. Patties.

If your son does in fact have Celiac, it can take a little while for the body to heal, so you may not see fast results. We started to see a difference in about a month.

You can't prevent Celiac, but you can prevent the damage of Gluten in a child who shouldn't have it.

I hope my suggestions help, keep posting questions when you have one.