Having A Hard Time Understanding Son's Celiac Blood Test Results

[jlmccord]

My daughter (6 y/o) was diagnosed with type 1 diabetes back in December 2010 and had a positive celiac's screening a couple weeks ago. We have an appt with a pediatric GI specialist next Monday, so I went ahead and got my 2 sons screened as well. So far I have got back my 3 y/o's results but I am having a hard time understanding what I am looking for. I've tried to do research online but I am finding conflicting info. Any help would be greatly appreciated!!! Thanks!!!

Celiac Disease Antibody Panel

Gliadin Antibody, IgG >100 U/ml H Reference Range: <11 U/mL

Gliadin Antibody, IgA <3 U/mL Reference Range: <11 U/mL

Tissue Transglutamine IgA Ab PENDING

Reticulin IgA Screen Negative Reference Range: Negative

Additional Testing Not Indicated

[LindseyK23]

I would like to try to help you - but let me preface that by saying that I am no expert and am very new to this as well. But in obsessively reading everything on the internet to try to understand my 5 year old's recent blood test results, I will give you my input.

The Gliadin Antibodies are most likely the Deamidated anti-gliadin ones, as I dont think many are testing the other kind any more. This (I think) checks to see if the body has developed antibodies to the protein in gluten, and I have read numbers like less than 20 is normal (the reference ranges they provided say less that 11 is normal, maybe because he is so young). So, it looks like his anti-gliadin IgG is indeed very high but IgA is normal. They may have tested his overall IgA too, as he could just have a general IgA deficiency (which would make that test inaccurate - I have read that something like 2% of celiac patients have that IgA deficiency.

The Tissue Transglutaminase (ttg) anitbodies are important, and his are not back yet. The numbers I read on line suggest that for tTg, an IgA equal to or above 4 is concerning, with over 10 being fully positive, and an IgG of 6 or more is concerning, with 9 and above being considered positive. This (I think) is the test to see if the body is forming antibodies against itself.

The other important test is the Antiendomysial antibody (EMA), which I didn't see you list, but I forget whether it is valid for very young children.

So, it looks like he has one concerning test result (so far). I would see what the tTg is and talk to the specialist when you are there. Hope this was even a little helpful.

[pgrovetom]

My daughter (6 y/o) was diagnosed with type 1 diabetes back in December 2010 and had a positive celiac's screening a couple weeks ago. We have an appt with a pediatric GI specialist next Monday, so I went ahead and got my 2 sons screened as well. So far I have got back my 3 y/o's results but I am having a hard time understanding what I am looking for. I've tried to do research online but I am finding conflicting info. Any help would be greatly appreciated!!! Thanks!!!

Celiac Disease Antibody Panel

Gliadin Antibody, IgG >100 U/ml H Reference Range: <11 U/mL

Gliadin Antibody, IgA <3 U/mL Reference Range: <11 U/mL

Tissue Transglutamine IgA Ab PENDING

Reticulin IgA Screen Negative Reference Range: Negative

Additional Testing Not Indicated

Doctors have a bad habit of cutting corners on blood tests as they cost money. This Mayo Clinic Celiac testing algorithm

Open Original Shared Link

is the best and most readable testing strategy I have found.

Was the Gliadin Gliadin Antibody, IgG >100 U/ml H Reference Range: <11 U/mL antibody test the Deamidated test? The older test is no longer recommended and the Deamidated Gliadin Abs or DGA test is better. This test looks VERY positive!

According to the Mayo algorithm, if any of the antibody tests are positive, it indicates a biopsy. If the biopsy is positive, its Celiac but if negative, then the DQ2 and DQ8 test must be done in hope of resolving the mixed results. If those come back positive than its probably Celiac and the biopsy missed the damaged area but if negative than its probably not Celiac.

Notice I always say probably without a positive biopsy? That is because ruling something out when there are mixed test results is a sure fire way to end up with a bad or missed diagnosis.

The Acid test is a rigorous Gluten Free diet. If the symptoms resolve its probably either Gluten sensitivity or Celiac. If you then do a challenge and eat lots of wheat like Mini-Wheats and get really ill, then stop and feel good again, you are now at 99.99% sure its Celiac or Gluten sensitivity. Gluten sensitivity can cause problems even if it doesn't evolve into Celiac. That is another reason the biopsy isn't bulletproof. If the DGM antibody test is positive, then I'd be very suspicious.

[Skylark]

Celiac Disease Antibody Panel

Gliadin Antibody, IgG >100 U/ml H Reference Range: <11 U/mL

Gliadin Antibody, IgA <3 U/mL Reference Range: <11 U/mL

Tissue Transglutamine IgA Ab PENDING

Reticulin IgA Screen Negative Reference Range: Negative

Additional Testing Not Indicated

If that's deamidated gliadin, he needs to be gluten-free. That is an antibody to a form of gluten that is ONLY formed in the intestine of someone who either has celiac disease or is well on the way. He should be biopsied but even if the biopsy is negative, that antibody is a sign of trouble to come.

If it's the old anti-gliadin, the IgG would only be a problem if he is IgA deficient and I don't see total IgA in the panel.

Reticulin is the old name for anti-endomysial, which you should be able to look up pretty easily. Negative is good, but the test is less sensitive than deamidated gliadin where he came up positive.

[Skylark]

Open Original Shared Link

is the best and most readable testing strategy I have found.

Readable, perhaps. Best? Not by a country mile. That exact strategy has nearly gotten folks on the board killed because it is overly conservative, has incorrect false negative rates, and relies too heavily on our very incomplete understanding of celiac genetics. Not to mention it completely glosses over the fact that gluten intolerance and celiac disease are a spectrum and that you can be "sort of" celiac and very sick.

[Roda]

Reticulin is the old name for anti-endomysial, which you should be able to look up pretty easily.

I didn't know this. My oldest son(10.5 yrs old) had this done when he was eight and I think it was negative, but he has been consistintly negative three times now. Even so we have an appointment with a pedi GI next week and I am going to push for biopsy. I've felt for quite awhile that he needs to be gluten free as does his allergist. His allergist feels that he is either a sero negative celiac or gluten intolerent given some of his symptoms and his younger brother and I both having celiac. So we will see how the appointment goes next week.

To the original poster, he seems to be positive on that one test. If you want to continue testing, scope/biopsy, then keep him on a full gluten diet until you are done with testing. I would go gluten free right after biopsy or if you choose not to do it, trial him gluten free for a good three months. At that point you could choose to do a challenge. That is what I did with my youngest son. He had a positive Iga TTg and since it is pretty specific to celiac and my celiac diagnosis (positive blood/biopsy), we chose not to do the scope. After gluten free 4.5 months we did do a gluten challenge. Suffice to say it only lasted three whole days and he his gluten free for good!!

[jlmccord]

Thanks SO much for all of your helpful info!!! I pretty much had came to the conclusion myself that if anything he definitely is gluten intolerant. His iGa numbers seemed so low, so I was maybe thinking that he was iGa deficient?? When I see the Ped GI specialist for my daughter on Monday morning, I'm gonna push for biopsies on both of them. Hopefully I'll be able to get my other son's test results back tomorrow so I can present it all to him at the same time... Pediatric GI specialists are so hard to get in to see here, so I want to get it all done at one time if possible. PLUS if we're gonna make the switch, I want to get all tests/biopsies done asap. Once again, thanks so much!!

[Roda]

Thanks SO much for all of your helpful info!!! I pretty much had came to the conclusion myself that if anything he definitely is gluten intolerant. His iGa numbers seemed so low, so I was maybe thinking that he was iGa deficient?? When I see the Ped GI specialist for my daughter on Monday morning, I'm gonna push for biopsies on both of them. Hopefully I'll be able to get my other son's test results back tomorrow so I can present it all to him at the same time... Pediatric GI specialists are so hard to get in to see here, so I want to get it all done at one time if possible. PLUS if we're gonna make the switch, I want to get all tests/biopsies done asap. Once again, thanks so much!!

Make sure you ask how many biopsy samples the doctor is going to take. The recommendation used to be a minumum of 6-8 but there are some posts on here that say that now they are recommending 8-11 samples.