Low IgA and CD tests

[kidsandmama]

Hello Everyone!

My son was tested for CD. These were the tests done along with the results.

Gliadin AB IgA <3

IgA, Serum 29

(tTG) Ab IgA <3

My doctor says that he has low IgA, so that part of the test is inaccurate. To me it appears as if all the tests are looking at variations of IgA and so all of it should be inaccurate. When I brought this up he said that one portion looks at another area of the immune system and therefore shows that he doesn't have CD. I don't understand.

Can anyone explain this to me?

Thanks so much. Collette

[lmb3]

This doesn't make much sense to me. My son was dx with IgA deficiency and therefore the doc threw out the remainder of the Celiac Panel Blood Tests stating his IgA def. makes the remainder of blood testing unreliable to dx CD.

I'm curious to hear what others have to say in response to your situation.

[jcc]

Hello Everyone!

My son was tested for CD. These were the tests done along with the results.

Gliadin AB IgA <3

IgA, Serum 29

(tTG) Ab IgA <3

My doctor says that he has low IgA, so that part of the test is inaccurate. To me it appears as if all the tests are looking at variations of IgA and so all of it should be inaccurate. When I brought this up he said that one portion looks at another area of the immune system and therefore shows that he doesn't have CD. I don't understand.

Can anyone explain this to me?

Thanks so much. Collette

Hi Collete,

Because your son is very low IgA, the anti-tTG IgA and anti-gliadin IgA results are not reliable tests for your son. They could run more tests, looking at antigliadin IgG and anti-tTG IgG, assuming he is not also IgG deficient (which can happen, but not as often..so I would think they might also want to run an IgG subclass and total IgG panel).

The tests run, as they stand so far, do not rule out Celiac Disease. In fact, some studies show that blood tests are negative in up to 20% of biopsy proven Celiac's. Some of these are due to IgA deficiency, but even without IgA deficiency~ blood tests can be false negative.

Here are a couple of articles about IgA deficiency.

Celiac Disease and Immunoglobulin A Deficiency... by Kumar, et al. (http://cdli.asm.org/cgi/content/full/9/6/1295)

Selective IgA Deficiency -IDF Patient/ Family Handbook (http://www.primaryimmune.org/pubs/book_pats/e_ch04.pdf)

I would suggest you either 1) talk to your doctor about running the IgG versions of the tests, 2) talk to your doctor about performing a biopsy if the suspicion is high and you want one for him, 3) look for a new doctor who comes highly recommended for knowing about Celiac Disease, or 4) just moving forward with a dietary trial if your son is symptomatic.

I would personally suggest you try to get some more blood tests run. I think it is worth doing the proper blood testing to see if anything is positive, BUT if all is negative and your son is symptomatic... I hope you will move forward with a dietary trial to see if he is helped.

Cara

[annelb]

Cara's suggestion to get the IgG testing is a very good one. You may also want to look at the Diagnostic Testing section of The Gluten File. A link to The Gluten File can be found under her signature.

A recent article on CD suggested that if all tests are negative but suspician is high, a 6th months GF trial may be indicated.

Does anyone in the family have CD?
Anne

[kidsandmama]

Thanks Everyone!

My son has been sick a lot. He gets about 7 colds each winter that last for 3 weeks. So, I went on a fishing expedition, trying to figure out why he gets sick so often. I put him on a gluten free diet and he got sick less often. His behavior was also somewhat improved (he still has many tantrums at the age of 7). He stayed on the gf diet for 7 months. My husband was not convinced however so we decided to do the tests (after reintroducing gluten of course- for at least 2 months).

He doesn't have gastrointestinal symptoms now, but he did have lots of diahrrea as a baby.

I'm not sure how easy it will be to talk with the doctor about this. The doctor is testing other areas of the immune system to see if he has any other deficiencies. So, I'll probably bring it up after the next round of tests.

Thanks so much, Collette

[Zonulin]

The doctor is testing other areas of the immune system to see if he has any other deficiencies. So, I'll probably bring it up after the next round of tests.
- Collette

That is a good idea - an immunoglobulin panel will tell you whether his immune system is compromised. Also, if his IgA is low, that means the mucosal membranes throughout his body will be more vulnerable to infection. My son at 9 also was tested as having low IgA, and he also tested positive for H. pylori, a bacterium that lives in the stomach lining. My son's celiac panel was negative except for the Antigliadin IgG antibody test - he had a 69 with a "normal" range up to 20. We were talked into an endoscopy, which showed no flattened villi (I will not agree to this again). Since my son was obviously producing antibodies to "fight" gluten (gliadin), we eliminated gluten...

So your son no longer has the diarrhea he had as a younger child? How did he like the gluten-free diet? Did HE feel better on it, or did he think there seemed to be no change? So sorry he is frequently sick with colds - poor little guy!! :( I would certainly push for the Antigliadin IgG Antibody test to see what's going on...and the immunoglobulin panel too! Good luck - a few tests may lead you to other tests which will give you a better idea of what's going on.

Karen

[annelb]

Hi Colette, Guess I am a little confused by the timeline. Are the tests you posted done after the gluten challenge? Is he still on the gluten challenge? Is he showing any symptoms on the challenge?

One presenter at the International Celiac Symposium showed information that a gluten challenge may take years to show damage to the villi. Makes one wonder if the challenge is truly a good test.

Anne

[halsgluten]

Hey, guy’s, had influenza for a week, :( but it did NOT touch my lungs, HAH! :D , see below:

therefore shows that he doesn't have CD. I don't understand.

I’m relieved to see test coming back with the specialist saying “the negative results have no diagnostic value” rather than saying you don’t have CD.

Dr. Fine suggests that IgA deficiency could be from the gluten sensitivity; your immune system is knocked down by both the inflammation and the malabsorption. The role of IgG and IgA is to catch allergenic proteins in your gut and those that leak into your blood from triggering your IgE nukes (anaphylaxis). If you are leaking a lot of wheat, your IgG and IgA can get used up.


Can anyone explain this to me?


Yeah, his MD is full of ****! :rolleyes: OK, OK, My Celiac MD friend would say, “he’s well meaning but misinformed”. MD’s were all taught that it is rare, it takes time to change the educational legacy. OK, there may be subtly in the pattern of test result that he’s not effectively communicated to you. Consider the www.enterolab.com test.

It is reasonable to throw out a negative Ig- test if there is a deficiency in Ig-.


He gets about 7 colds each winter that last for 3 weeks


I used to get 3-4 lung infections a year that would last for several week each year. I would feel a tickle in my throat and think, oh, no, not again. Never again, once I went GF!!! :D

Hal

[Electra375]

You are the mother INSIST on testing that you come up with and feel is necessary.

My ds2 is low IgA and catagorically IgA deficient for the Celiac standard IgA panel test, but not deficient enough to be "techincally" deficient medically. His number was about 23, if memory severs me...

I would as previously explained do the IGG test and the TTG based on IGG. I would also see a PEDI GI and get the genetic test run from Prometheus Labs in CA (actually do the IgA total serum through them again with the IGG test).

Other test that could be run are metabolic blood test that look at how the body is processing nutrients Pre Albumin, Creatine, Vit K, Iron, etc.

For our ds2 the combination of metabolic blood screens, the Prometheus Lab full panel after a quick TTG with IgA came back negative, the Prometheus was positive on the IGG and DQ2 and better identified the IgA deficiency by age, and he has had a very positive response to the GF diet, weight gain, height, no diarrhea, and behavior improvement over the course of a year.

I also saw Dr. Fasano in Maryland. He locked it down tight for me without pushing biopsy on my very sick little boy. Medically no official dx, but our pediatrician supports the GF diet for him without the biopsy.

I thought at first my dh was going to be like this was some wacky dx. All the way home from the pedis office that day... About 2 months later the entire family was tested with the Prometheus Lab panel. Well, it turned out my dh is the DQ2 gene carrier and I think that has made my life a lot easier in compliance issues b/c 1) dh feel responsible:( , 2) dh has done his own research in light of his own blood test and 3) he has seen significant improvement, growth, etc in our son over time and heard the comments from our close friends about our ds2. I don't think my dh would have taken this as seriously if he were not the gene carrier, I'd never wish that on anyone, but in our case it has worked out for the better simply b/c my dh has felt the need to research this when otherwise he probably would not have.

[kidsandmama]

Thanks Everyone!

I appreciate you writing me back. I do have some more questions.

Hal, you point out that Dr. Fine suggests that IgA deficiency could be from the gluten sensitivity. Do you have the article this was from? I'd like to show it to my son's pediatrician.

You also say "your immune system is knocked down by both the inflammation and the malabsorption. The role of IgG and IgA is to catch allergenic proteins in your gut and those that leak into your blood from triggering your IgE nukes (anaphylaxis). If you are leaking a lot of wheat, your IgG and IgA can get used up." I don't really understand what you mean with "IgE nukes anaphylaxis". Can you explain this to me?

And Electra- you mention that I should have my son's levels for pre Albumin, Creatine, Vit K, Iron, etc tested. What would these show me?

Thanks again! Collette

[Electra375]

And Electra- you mention that I should have my son's levels for pre Albumin, Creatine, Vit K, Iron, etc tested. What would these show me?

Pre-Albumin shows immediate absorption of foods, where as Albumin shows over time (from my memory now, so I might be off a little)
Creatine shows whether or not muscle tissue is being burned for body functions vs nutritients from food
Vit K levels show potential malabsorption issue
Iron same as Vit K show potential malabsorption
Actually all these show how well the body is using what it's being fed.
If malabsorption is taking place, then the intestines are usually to blame, Celiac or not.

I would take my son straight to a Pedi GI familar with Celiac disease. I got lucky and our pediatrician has a patient with CD, so she was familiar with it. She didn't quite have the testing right though, the Pedi GI was able to order the correct test.

[Simon]

I came across this article which many may find helpful. It explains why many people get a false negative result for celiac desease. I hope you find it of help:

http://www.foodreactions.org/gluten/index.html#negative

Simon :)

[annelb]

Thanks for the link Simon - lots of interestng info among the pages there. I would am cautious about the recommendation that enzymes can be used in order to eat gluten.

Here is a site that gives a good overview of enzymes and celiac. They are not ready for prime time yet. http://www.enzymestuff.com/conditionceliac.htm

Anne