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milkymama

Does He Really Have Celiac's?

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I have no idea how to read the results from my 3 y/o blood work. His pediatrician is saying that we can't trust the blood work and really need to have a biopsy done. She says that even though he tested positive, he may not have Celiac's or the gluten sensitivity. I was hoping that if I post the results here, maybe someone (anyone!) could tell me the likelihood of him NOT having the disease. I'm sorry if this is repetitive of what others have posted. My head is just swimming with confusion right now. :wacko:

Gliadin Antibody (IGG) 13

Reference range

<11 ml negative

11-17 equivocal

>17 positive

Gliadin Antibody (IGA) <3

*same reference range as above*

Test Name Out of Range Reference Range

Absolute Lymphocytes 2685 4000-12500 ml

Tissue Transglutaminase Antibody IGG 21

<7 negative

7-10 equivocal

>18 positive

Tissue Transglutaminase Antibody IGA <5

Reference Range same as above

I left out everything that came within range and the CBC info. If there is something I missed, that would help, please let me know. Thanks so much for any help! :)

As of right now, since his pedi said that he tested + for one of the Celiac's test and + for a gluten sensitivity, he is on a gluten-free diet. I have to say, we're in the 4th wk and the results have been incredible. He is a completely different child.

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I have no idea how to read the results from my 3 y/o blood work. His pediatrician is saying that we can't trust the blood work and really need to have a biopsy done. She says that even though he tested positive, he may not have Celiac's or the gluten sensitivity. I was hoping that if I post the results here, maybe someone (anyone!) could tell me the likelihood of him NOT having the disease. I'm sorry if this is repetitive of what others have posted. My head is just swimming with confusion right now. :wacko:

Gliadin Antibody (IGG) 13

Reference range

<11 ml negative

11-17 equivocal

>17 positive

Gliadin Antibody (IGA) <3

*same reference range as above*

Test Name Out of Range Reference Range

Absolute Lymphocytes 2685 4000-12500 ml

Tissue Transglutaminase Antibody IGG 21

<7 negative

7-10 equivocal

>18 positive

Tissue Transglutaminase Antibody IGA <5

Reference Range same as above

I left out everything that came within range and the CBC info. If there is something I missed, that would help, please let me know. Thanks so much for any help! :)

As of right now, since his pedi said that he tested + for one of the Celiac's test and + for a gluten sensitivity, he is on a gluten-free diet. I have to say, we're in the 4th wk and the results have been incredible. He is a completely different child.

I am not experienced in reviewing lab results, but I do remember a startling moment with our GI pediatrician. He had told me that the only definitive diagnosis for celiac comes from the biopsy, and then in the hospital waiting room following my son's biopsy told me that he had never, never once in his whole career had a patient with positive blood results and a negative biopsy. I remember thinking, you are old enough to have grandchildren, how many biopsies do you have to do before you see the writing on the wall? You might ask your doctor the same question - has he or she ever had someone with your child's blood results that didn't have celliac disease?

Our biopsy went fine, and I'm not sorry we did it. But as a follow up for my daughter I plan to take the enterolab route, which is much less invasive. The other thing you need to be careful about is invalidating the biopsy by going gluten free prior to the test. You can apparently still do the enterolab test for up to a year after going gluten free, but the same is not true for a biopsy.

If you feel pretty convinced that you would not let your child have gluten ever, then you may already have all the results you need. It is such a difficult diet, though, that I need the most definitive results I can come up with to strengthen my resolve.

Wish I could be more helpful.


Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy

Elimination diet resulted in avoiding dairy, soy & corn for a time

Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself

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I am not experienced in reviewing lab results, but I do remember a startling moment with our GI pediatrician. He had told me that the only definitive diagnosis for celiac comes from the biopsy, and then in the hospital waiting room following my son's biopsy told me that he had never, never once in his whole career had a patient with positive blood results and a negative biopsy. I remember thinking, you are old enough to have grandchildren, how many biopsies do you have to do before you see the writing on the wall? You might ask your doctor the same question - has he or she ever had someone with your child's blood results that didn't have celliac disease?

Our biopsy went fine, and I'm not sorry we did it. But as a follow up for my daughter I plan to take the enterolab route, which is much less invasive. The other thing you need to be careful about is invalidating the biopsy by going gluten free prior to the test. You can apparently still do the enterolab test for up to a year after going gluten free, but the same is not true for a biopsy.

If you feel pretty convinced that you would not let your child have gluten ever, then you may already have all the results you need. It is such a difficult diet, though, that I need the most definitive results I can come up with to strengthen my resolve.

Wish I could be more helpful.

That was helpful! I'm meeting with the GI to ask some questions, but at this point, I don't want the biopsy done. It will be interesting to see if he has had any positive blood tests and negative biopsies.

Thanks again!

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The total IgA is not shown above. The TtG IgA and Anti Gliadin IgA results you posted are negative, while the Anti Gliadin IgG and tTg IgG are both positive. It would be very helpful to know if your child is IgA deficient. That would give more power to the positive IgG results. Did they run that test?


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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As far as I know, they didn't run the test to see if he is IgA deficient. What would that mean? Is it something I should have him taken back in for? My husband and I are planning on testing through Entero. Would they be able to say definitively whether he has celiac disease or not? I'm so confused and frankly ready to cry. His doc has been so unhelpful and I dn't know what to do. I honestly had no idea about celiac disease. I thought he had other food allergies and was testing for that.

I am looking at the test results and I don't see a total IgA number. The only # I see that may be it, says <5.

I'm sorry to be thick, but can you tell me what this means, "The TtG IgA and Anti Gliadin IgA results you posted are negative, while the Anti Gliadin IgG and tTg IgG are both positive."

Thank you so much.

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As far as I know, they didn't run the test to see if he is IgA deficient. What would that mean? Is it something I should have him taken back in for? My husband and I are planning on testing through Entero. Would they be able to say definitively whether he has celiac disease or not? I'm so confused and frankly ready to cry. His doc has been so unhelpful and I dn't know what to do. I honestly had no idea about celiac disease. I thought he had other food allergies and was testing for that.

I am looking at the test results and I don't see a total IgA number. The only # I see that may be it, says <5.

I'm sorry to be thick, but can you tell me what this means, "The TtG IgA and Anti Gliadin IgA results you posted are negative, while the Anti Gliadin IgG and tTg IgG are both positive."

Thank you so much.

You are not being thick at all! Considering you probably hadn't heard much about celiac before your child got tested, you are practically an expert now. ;) I'm going to give you a whole bunch of information - sorry if its overload.

Here is an explanation of the different types of antibodies:

The five major types of antibodies are:

IgA. IgA antibodies are found in areas of the body such the nose, breathing passages, digestive tract, ears, eyes, and vagina. IgA antibodies protect body surfaces that are exposed to outside foreign substances. This type of antibody is also found in saliva and tears. About 10% to 15% of the antibodies present in the body are IgA antibodies. A small number of people do not make IgA antibodies.

IgG. IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus).

IgM. IgM antibodies are the largest antibody. They are found in blood and lymph fluid and are the first type of antibody made in response to an infection. They also cause other immune system cells to destroy foreign substances. IgM antibodies are about 5% to 10% of all the antibodies in the body.

IgE. IgE antibodies are found in the lungs, skin, and mucous membranes. They cause the body to react against foreign substances such as pollen, fungus spores, and animal dander. They may occur in allergic reactions to milk, some medicines, and some poisons. IgE antibody levels are often high in people with allergies.

IgD. IgD antibodies are found in small amounts in the tissues that line the belly or chest. How they work is not clear.

You see how some of your lab results say IgA and some say IgG? That's because they are measuring different classes of antibodies. The tests that are most often used to diagnose celiac (TtG and EMA) are IgA results. That's why it is important to have the total IgA done when the doctor is looking at those tests. If your child were IgA deficient, it would explain why the tests were negative. If that were true, the IgA results would always be negative, and the doctor would have to rely on IgG results.

The celiac disease bloodwork is actually a set of tests that are viewed in combination.

http://americanceliac.org/diagnosis.htm

What are the different antibody tests available? Can there be errors in testing?

The blood tests can be divided into 2 different types of antibodies: those which are


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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Bloodtests are supposedly notoriously inaccurate! that;'s why even to this day, Goldstandard for Celiac is the Biopsie which he would be knocked out for! ASince he ahs been off of gluten for 4 weeks laready it is questionable that the PDI would still do it without him beeing back on gluten for a good while. Our PDI refused to make the scope since she was already 2 weeks off of the gluten, he wanted her back on it for 2 month!!!!!! before he'd do it. We tried for 3 weeks but then gave up tbecause our daughter suffered too much! We know in our hearts she is a picturebook celiac, she just doesn't have the scope. He at least gave as a note for school that she is highly glutensensitive and is not allowed to get any under any circumstances. At least we have that because Celiac or Glutensensitive, the course of Treatment is the same. Never again eat gluten! Even as a glutensensitive you CAN turn Celiac someday. Your sones bloodwork is positive, I can see that, that in combination with those amazing results you saw on the glutenfree diet speaks for itself!!!!!! We do have a bunch of people here, that do neither hacve the Celiac-Genes NOR do they have a positive biopsy OR positive bloodwork in any way but still, their response to glutenfree is amazing and that is proof enough! Testws cannot show everything now a days, specially in this chapter! If you want to, you can try EnteroLab.com. A Lab that is privately used by many here when their doc did not want to go further in testing or thei wanted additional proof. My son has been tested by blood twoo years ago almost for the Tissuetransglutaminase, his genes where tested last year and he's got one of the two major Celiac-Genes, the DQ2. The Doc refused to test further, now I had him tested through enteroLab again, I did the Stool Tissuetransglutaminase test and he turned up positive. Normal isa reading there fo less then 10 units, he had 45- so he's clearly glutensensitive. Schoolbreask fo 10 weeks is coming up and that's when I will ruyn a strikt glutenfree trial to see how he does on it. right now I cannot be sure that he won't get anything at school and results may be hazy. so I'll wait for Summerbreak and then see, if we do good I will make the house completely glutenfree since his little sister is a celiac anyway!

Any way, if you have doubts or want to be sure, do private testing with EnteroLab. The Stooltests are still accurate even though you are off of gluten/your son. It is so easy! I even ordered another test on a stoolspecimen I sent in in October from my daughter (they keep it for 6 month if further testing should be needed), I'm glad they still ghave it because this stool is from when she was still weaned off of gluten! I"m curious to see what her tissuetransglutaminasetest says compared to my son!


Susi with Shayden and Brandy

Shayden, pos. with DQ 2, pos. for Glutensensitivity with Tissuetransglutaminase Stool TgA 45 Units

Brandy, pos. with DQ2 + DQ8, DX Celiac Nov.07, gluten-free since Nov. 1st 07, Tissuetransglutaminase Stool TgA 63 Units

Me: Gastroscopy negative f. Celiac, IBS, Oesophagitis, Hiatus-Hernia

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I've read, someone correct me if I am wrong, that celiacs are more likely to be IgA deficient. If your child gets total Iga serum tests done, and it comes back negative, then they check the IgG levels. I would definately check on this one Also did they run the anti-EMA test?


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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