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IsheeFam

How Is This Possible Celiac?

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Now I know I am not super skilled in this.....but I am not sure what to make of my 3 year old's test results from 2008. I am sure at her appt on the 16th they will do new tests.....but I am struggling to understand how these results show possible Celiac Disease? Help please from those who are skilled at this. Thank you Thank you in advance as I am sure some get tired of repeating themselves!

Reference Range:

<5 Negative

5-8 Equivocal

>8 Positive

Her Results:

Gliadin IGG.... 10.0

Gliadin IGA.... 0.1

TTG IGA........ 0

TOTAL IGA...... 46

Result Comments from the lab:

Results may support a diagnoses of Celiac Disease, but are not specific. IgG serologocial marker for Celiac Disease detected

Interpretations from lab:

Celiac patients have an increased incidence of IgA deficiency, therefore, negative IgA antibody assay results do not necessarily rule of Celiac Disease. Anti-gliaden IgG antibodies are very sensitive for Celiac Disease, but lower specificity (higher false positive rate) than the IgA antibody assay.

Ya... I got lost in all that some where....I don't understand how this is possible Celiac? I am wondering if her new tests will be higher....

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So, kids are different a bit different... their immune systems are immature. Tests are not as reliable for them because of that. Maybe there is someone else who has more knowledge in that area?

For adults, the person would probably be diagnosed with IgA deficiency (the total IgA numbers I've seen are usually higher than that), which means the Gliadin and TTG IgA numbers are not necessarily dependable. They could be "normal levels" because your body doesn't make much of it. If you don't make a normal amount of IgA, then you don't react to gluten with it as strongly as a normal person.

The gliadin IgG number is definitely positive (10 is greater than 8). That means her immune system is reacting to gluten as an enemy. Whether it is classic celiac disease or another form of gluten intolerance or what is the next question... and hopefully your appointments will help figure that out.

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I see! I am thinking doing another round of blood test would be a smart idea at this point. These labs are about 1 1/2 years old. So I would think if she is Celiac then her numbers would come back worse. Starting Monday I am going to do a food/drink diary on her and also record her BM's not only for the GI but also for myself. Maybe this will show if particular things are upsetting her. Her symptoms these days seem more mild compared to when she was younger....but we do still struggle with her BM's being normal.

Thank you for your input!

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Result Comments from the lab:

Results may support a diagnoses of Celiac Disease, but are not specific. IgG serologocial marker for Celiac Disease detected

I think this is the most significant finding. The serological tests which were relied on before genetic (DNA) marker tests became available were quite good and correlated with Celiac Disease. I didn't realize that some labs were still using them but they are much less expensive than DNA marker tests and cut down on the expense of screening for celiac disease. If your child has been gluten-free the tests you have done now may all be negative. Now would be a good time to have the genetic test done - it will help you decide what to do and what the child needs to learn to protect herself as she gets older.

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In small childre, it is advised to do the antigliadin tests too, and not just the tissute transglutaminase test they often run asn the only test for adults.

That is because often the antgliadin test is the only positive test in children.

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The serological tests which were relied on before genetic (DNA) marker tests became available were quite good and correlated with Celiac Disease. I didn't realize that some labs were still using them but they are much less expensive than DNA marker tests and cut down on the expense of screening for celiac disease.

The NIH would disagree with you on this one. The blood tests have a false negative rate of at least 20% according to them. I suffered for a very long time because I am one of that 20%. As to the gene tests, those are not diagnostic. Most doctors do not do them because there are large numbers of people that have the genes but do not ever develop the disease. Also most labs only test for 2 of the 9 known celiac associated genes. I am a DQ 9 which is a rare gene in the caucasian US population. Here my celiac associated gene would have had me labeled with RA. My DD had a biopsy and blood postive diagnosis reversed because she also is not DQ2 or DQ8. A tragedy in my opinion. Now she attributes all her celiac symptoms to stress.

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Now I know I am not super skilled in this.....but I am not sure what to make of my 3 year old's test results from 2008. I am sure at her appt on the 16th they will do new tests.....but I am struggling to understand how these results show possible Celiac Disease? Help please from those who are skilled at this. Thank you Thank you in advance as I am sure some get tired of repeating themselves!

Reference Range:

<5 Negative

5-8 Equivocal

>8 Positive

Her Results:

Gliadin IGG.... 10.0

Gliadin IGA.... 0.1

TTG IGA........ 0

TOTAL IGA...... 46

Result Comments from the lab:

Results may support a diagnoses of Celiac Disease, but are not specific. IgG serologocial marker for Celiac Disease detected

Interpretations from lab:

Celiac patients have an increased incidence of IgA deficiency, therefore, negative IgA antibody assay results do not necessarily rule of Celiac Disease. Anti-gliaden IgG antibodies are very sensitive for Celiac Disease, but lower specificity (higher false positive rate) than the IgA antibody assay.

Ya... I got lost in all that some where....I don't understand how this is possible Celiac? I am wondering if her new tests will be higher....

Your child is IgA deficient, therefor the IgA tests are useless. IgG is not thought to be specific for celiac disease, although celiac disease is the most common cause.

so: 1) your child is positive for IgG anti-gliadin, and

2) your child is IgA deficient, which is more common in people with celiac disease.

That's why it's possible Celiac.

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Ok I understand. At least I have a good base knowledge of what is going on, what kind of tests should be ran, and what I should be looking for. I do not hold 100% confidence in all doctors (they are humans too and therefor can make mistakes or miss things) so I like to have an understanding for my own personal reassurance....especially when it comes to one of my children. I would just like to find out soon if she does or does not have it. She is 3 and it seems in the short run it will be harder to re-teach her eating habits...however in the long run she will start at a young age learning what she can and can not eat. Also since she is young she is able to heal and I can protect her against damage as she continues to grow!

I feel like my plate with her is FULL. Along with the GI doctors they are also sending her to another specialist for possible EDS (Ehlers-Danlos Syndrome)....we have already been told she is hypermobile...so now we have to find out the extent of this also.

Lord give me strength, patience, and understanding.

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Oh all EDS have more or less digestive problems.

I think there are also some privare EDS diet pages out there.

About teh gene discussion, I have DH too, and the gene (DQ2 and 8) is not neccessary for DH, nor a positive biopsy.

I am double DQ5.

If you google hadjivassiliou, he writes they found that about 20% of his glutan ataxia patients were DQ1 (which is DQ5 and 6)

There are even two forums for people with neuro issues from gluten, and most of them are DQ1, and they are even more sensitive to gluten than the typical DQ2 only celiacs.

Aldso, it is typical for DH patients to be very sensitive to gluten.

Here in northern Europe, the typical DQ2 celiacs eat and tolerate wheat starch, and nowadays most who are diagnosed, have no symptoms but have been found by screening. That would be all DQ2 and DQ8.

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Along with the GI doctors they are also sending her to another specialist for possible EDS (Ehlers-Danlos Syndrome)....we have already been told she is hypermobile...so now we have to find out the extent of this also.

Lord give me strength, patience, and understanding.

I am glad they are going to get her typed for the EDS, if that is indeed what she has. There is also a syndrome that is just hypermobility without the connective tissue issues that EDS has and hopefully that is what she has.

I also have EDS. A good physical therapist was invaluable for me. They helped me strengthen my muscles without injury which helps to support the joints. They might be helpful for her also. I saw them as a child and then did some more extensive therapy a couple years ago (in my 50's) because I had gotten to the point where I would dislocate in my sleep. My knees and ankles don't go out so much since. As a kid my cousins and I would play at seeing who could bend what in the greatest direction. Great fun at the time but not really wise in retrospect.

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I am glad they are going to get her typed for the EDS, if that is indeed what she has. There is also a syndrome that is just hypermobility without the connective tissue issues that EDS has and hopefully that is what she has.

I also have EDS. A good physical therapist was invaluable for me. They helped me strengthen my muscles without injury which helps to support the joints. They might be helpful for her also. I saw them as a child and then did some more extensive therapy a couple years ago (in my 50's) because I had gotten to the point where I would dislocate in my sleep. My knees and ankles don't go out so much since. As a kid my cousins and I would play at seeing who could bend what in the greatest direction. Great fun at the time but not really wise in retrospect.

Well she already is able to perform the typical EDS hypermobility traits. (The one were they test your fingers, hands, toes, etc).....she and DH can both do those. She also is somewhat clubfoot. Like you I am hoping it is just type III, hypermobility. I am holding that hope because DH (who I think would of passed it down to her) has had problems with his heart....specifically the mitral valve. This is commonly seen in type 4, vascular. He also has the stretchy skin. She walked late, still has problems with her feet turning in and down, she is small, very very light skinned, you can see her veins in her chest, etc etc. Like I said before...I will be more worried once she is actually diagnosed. At this point everything could come out normal and this will all end! :o)

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