Child's Blood Test Results

[nicolebeth]

Hello, I haven't posted here before, but have learned a lot of very interesting information.

My 4 1/2-year-old son was recently tested for celiac. To preface, his symptoms have been: occasional loose stools (with undigested food), eczema since he was a baby (most recently disappearing, but coming back worse in January, enough to impact his eyes and face, and for him to complain of pain), an episode of canker sores in his mouth at 2 1/2 (his dentist found this very unusual), and his growth has gone down considerably from being a very pudgy baby to a small almost-Kindergartner (though growth is on a very slight upswing). His uncle (my husband's brother) was diagnosed with celiac as an adult, so the doctor said we might as well order the celiac panel as it's in the family.

Anyway, so he hasn't been very ill, and appeared big until around age 2.

The tests: he was tested for total IgA, IgA IgG, and the antibody IgA. (Perhaps TGG?) The two celiac screens came out negative. His total IgA was 45.6, with a reference range of 66-120. The doctor is not concerned, though did say a low IgA could skew the results. Her idea is to retest in a few years. She also said there is frequent transient variability in the "slightly" low IgA numbers--and that transient variability is most often the cause of low IgA.

Is this "slightly" low? After consulting with an out-of-state friend (also a doctor), we're planning on taking him to a Pediatric GI doctor anyway. But, we were curious whether this is indeed slightly low. We aren't inclined to do a biopsy, but have thought of doing the genetic test. Any downside to doing the genetic test? Is there other blood testing we can do that doesn't involve a biopsy?

Thank you. We appreciate any information you might have!

[ravenwoodglass]

Your sons results show he is IGA deficient thus making the celiac screen basically worthless. He could very well be a false negative even with a normal total IGA. I think you are wise to consult with a ped GI.

As to the gene tests since most doctors only test for 2 of 9 celiac related genes in the US those tests IMHO are less than worthless. I am a bit jaded on them mainly because one of my celiac children had gene tests as an young adult and was told she was never, and never could be celiac because she 'doesn't have the genes'. Both her father and I are diagnosed celiacs and she had been biopsy and blood test positive when she was orginally diagnosed. She is now back on gluten, symptomatic and convinced she doesn't have celiac. There are some places that will test for all of the celiac associated genes but that really is only a small part of the diagnostic process.

Your son does sound like he could be one of us. Do make sure that you try him on the diet strictly after testing is over no matter what the test results. His response to the diet is really the best diagnostic tool there is at this point. Since celiac can impact the brain and thought processes and make it harder for us to learn and concentrate in school as well as impacting growth and overall health the younger it is found the better off he will be.

[nora-n]

That is a very low total IgA.

Are you aware of that there is a much greater chance of celiac amongst those with IgA deficiency?

The celiac blood tests are invalid, the IgA type tests. (because of the low IgA)

About the gene test, it will robably be positive because of the relative who was diagnosed celiac.

The symptoms, especially the decrease in the growth chart, are very very suspicious for celiac.

Can you get ahold of the actual blood test results?

In cildren under 3, the antigliadin tests should be done, as they often do not make enough of the other antibody (ttg)

So that means the antigliadin IgG, and the Ttg IgG tests are the relevant ones.

The endomysium antibody test is a different kind of test, where they use monkey umbilical cord or the like, and incubate it with the blood test, and look at it through a microscope to see if they find flourescence. IT is very very specific for celiac.

Anybody know if it can be used when there is IgA deficiency?

Has the child been eating enough gluten for the blood tests to show up positive?

even if the blood tests are negative, a biopsy might be positive.

I can understand you would like to try the gene test before the biopsy.

[tarnalberry]

I agree with ravenwoodglass on the genetic test front - if you're only going to test for a couple things, and then say it's conclusive... well, that's not good testing.

And yes, with a low IgA (which that is), the other tests could be wrong. Doesn't really matter WHY the IgA is low - even if it's transitory, it's going to cause the other tests to be low right now, because it's low right now.

[nicolebeth]

Thank you for the responses!

That is interesting to hear that it is a low total IgA; the pediatrician wanted to emphasize how it wasn't really low, just slightly low, etc. (In fact, she's been unreachable since I first talked to her Thursday, and we got the reference range from the lab, ourselves, yesterday.)

Symptomatically, we do see that our son could need to go gluten-free. We would like some test or doctor to advise that, however. It will be difficult, though not impossible. (I have done gluten-free, myself, here and there, unfortunately in the six weeks before getting myself tested a few years ago.)

It will be much easier with family and his future school to say there is a diagnosis or a doctor's order. We didn't want to take him gluten-free on a whim, if that makes sense. (We've already been accused of "looking for issues" or being overly-concerned about his size. I say: if he's meant to be small, that's great. Genetically speaking, we're not giants. But, babies/kids aren't small in our families; they just might not grow very tall overall.) We've been back-and-forth wondering about this for a few years, and given the painful rash, this isn't great for our son either. I do appreciate hearing that school issues can be impacted in the future as well. We don't see any behavioral/learning things at this time, and I would hate for diet to cause something like that for him.

About the biopsy: I had thought that in kids under 5 there could be false negatives as well? That the villi could be undamaged, particularly in someone so young? The kid was also protected, we think, by breastfeeding for a long time (certainly, his weight was in a higher category for a while). Anyway, that's our strong hesitation with the biopsy--putting him through something that would likely come out negative, regardless of the truth.

I will get the copy of the lab report today to know what were the two celiac screens he did have. If there are any unaffected by low total IgA, I guess that's what we'd like to do first.

Thank you.

[ravenwoodglass]

Thank you for the responses!

That is interesting to hear that it is a low total IgA; the pediatrician wanted to emphasize how it wasn't really low, just slightly low, etc. (In fact, she's been unreachable since I first talked to her Thursday, and we got the reference range from the lab, ourselves, yesterday.)

Symptomatically, we do see that our son could need to go gluten-free. We would like some test or doctor to advise that, however. It will be difficult, though not impossible. (I have done gluten-free, myself, here and there, unfortunately in the six weeks before getting myself tested a few years ago.)

It will be much easier with family and his future school to say there is a diagnosis or a doctor's order. We didn't want to take him gluten-free on a whim, if that makes sense. (We've already been accused of "looking for issues" or being overly-concerned about his size. I say: if he's meant to be small, that's great. Genetically speaking, we're not giants. But, babies/kids aren't small in our families; they just might not grow very tall overall.) We've been back-and-forth wondering about this for a few years, and given the painful rash, this isn't great for our son either. I do appreciate hearing that school issues can be impacted in the future as well. We don't see any behavioral/learning things at this time, and I would hate for diet to cause something like that for him.

About the biopsy: I had thought that in kids under 5 there could be false negatives as well? That the villi could be undamaged, particularly in someone so young? The kid was also protected, we think, by breastfeeding for a long time (certainly, his weight was in a higher category for a while). Anyway, that's our strong hesitation with the biopsy--putting him through something that would likely come out negative, regardless of the truth.

I will get the copy of the lab report today to know what were the two celiac screens he did have. If there are any unaffected by low total IgA, I guess that's what we'd like to do first.

Thank you.

Have you taken him to a derm to see about getting the rash biopsied for DH? If the test for DH is positive that is a positive for sure diagnosis of celiac and no other testing is needed. The derm need to know how to do the test, the skin next to the lesion needs to biopsied and they need to be specifically looking for dermatitis herpeformis. It might be the easiest way for you to go if the rash is indeed DH. One of the signs of DH is that the scar from the rash will be a purply color and take a long time to fade. It also usually iches intensely and sometimes it will itch so much that the small blisters are not real obvious. Usually folks have the lesions in sort of clusters but some will have what almost look like flea bites that are more scattered. Another feature is that DH will usually show up on both sides of the body, in other words if he has a rash on one arm there will often be a rash in the same area on the other side.

[nicolebeth]

Thank you. No, we hadn't thought about the skin biopsy. The rash really looks like eczema (we had read that rashes in children could appear to be like eczema). At times it has been worse (after antibiotics, for example), and perhaps those rashes more resemble a DH rash? All the photos I've seen online, though, look nothing like his rash.

I did find out what blood tests he had:

Total IgA (low)

Endomysial IgA AB (negative)

TTG IgA (<1.3, reference <4.0)

TTG IgG (2.2, reference <6.0)

So, he was negative on the IgA tests, but also on an IgG test.

[nora-n]

There was a slight response on those tests, and there was a number on the ttg IgA test even though the total IgA was well below range.....

In children under the ageof 3, the ttg antibodies often do not respond, but the antigliadin tests are known to be a better indicatr of celiac.

I would recommend to ask for the antigliadin tests, especially the IgG version because of the low total IgA.

Yes, the result of any IgA type result is totally dependent on the amount of total IgA.

I have seen discussions by doctors where they commented that a slightly positive ttg IgA was a false positive because the total IgA was above range.

So the reverse applies too just by reasoning.

[nicolebeth]

There was a slight response on those tests, and there was a number on the ttg IgA test even though the total IgA was well below range.....

In children under the ageof 3, the ttg antibodies often do not respond, but the antigliadin tests are known to be a better indicatr of celiac.

I would recommend to ask for the antigliadin tests, especially the IgG version because of the low total IgA.

Yes, the result of any IgA type result is totally dependent on the amount of total IgA.

I have seen discussions by doctors where they commented that a slightly positive ttg IgA was a false positive because the total IgA was above range.

So the reverse applies too just by reasoning.

Thank you! We're going to ask to do those tests as well. I was confused by all the tests, not realizing there was an AGA test. Is the AGA not as common to do for some reason? I think my kid would have passed out with any more blood drawn that day, so it's just as well they didn't do it then.

(Oh-my son is over 3 (almost 5, actually), but perhaps it's similar for all young children?)

[nicolebeth]

May I ask: why do they insist on stool tests first? Children's made such a good case for an endoscopy (could be celiac or intestinal allergy, his very slowed growth indicates that there will be damage, and we'll want to have proof of results for when he's a teenager and diet-resistant).

My son eats everything we eat, and has not travelled abroad to countries with known parasites. He's also not always cooperative (i.e., sometimes his only #2 of the day is outside the home, not into a "hat" over the toilet). And, the delay in growth has been since he was 2 1/2--he's almost 5 (so, presumably, a really bad bug would have reared it's head by now, right?)

Anyway, I'm just trying to figure out why we're doing this and not just moving forward to the endoscopy (which, it seems, they want to do anyway).

Thank you!

[Dace]

May I ask: why do they insist on stool tests first? Children's made such a good case for an endoscopy (could be celiac or intestinal allergy, his very slowed growth indicates that there will be damage, and we'll want to have proof of results for when he's a teenager and diet-resistant).

My son eats everything we eat, and has not travelled abroad to countries with known parasites. He's also not always cooperative (i.e., sometimes his only #2 of the day is outside the home, not into a "hat" over the toilet). And, the delay in growth has been since he was 2 1/2--he's almost 5 (so, presumably, a really bad bug would have reared it's head by now, right?)

Anyway, I'm just trying to figure out why we're doing this and not just moving forward to the endoscopy (which, it seems, they want to do anyway).

Thank you!

I don't think they are looking for a parasite

A stool sample is tested to detect fat in the stool, since celiac disease prevents fat from being absorbed from food.

[nicolebeth]

I don't think they are looking for a parasite

A stool sample is tested to detect fat in the stool, since celiac disease prevents fat from being absorbed from food.

Thank you--that's a very good point. I guess the task has seemed a bit lacking in fun, especially today (as I'm sure everyone here knows), and I was trying to figure out why we're doing it (if they're going to recommend endoscopy anyway). Perhaps this would rule something out for them, though I'm not sure about that. I do remember something mentioned about absorption of protein and carbs as well.