Son-test results

[Rachq]

My son was a very fussy, gassy, clingy, unhappy baby. He has diarrhea constantly from birth & would cry most of the night with several bowel movements & would be exhausted all day. I switched him to a dairy formula at 8-9 weeks & within 24 hrs he was much easier to deal with & had normal stool. At about 5 months he became less clingy. We've thrown gluten back in a couple times, mostly by accident & he had symptoms again. Now that he's 2.5 yrs old his main symptom seems to be fatigue instead of diarrhea. Since he's already on a gluten-free diet I asked my Dr to order the gene test. He said tissue iga/igg would still show if he was celiac. Results are: tTG IgA <2 u/ml (normal range 0-3 u/ml). tTG IgG 2u/ml (normal 0-5 u/ml). 

Should I be excited that his results appear normal & not worry about occassionally accidental contamination causing him damage? Or push for the gene test? He had ingested a few goldfish crackers 24 hrs before the test. 

[kareng]

1 hour ago, Rachq said:

My son was a very fussy, gassy, clingy, unhappy baby. He has diarrhea constantly from birth & would cry most of the night with several bowel movements & would be exhausted all day. I switched him to a dairy formula at 8-9 weeks & within 24 hrs he was much easier to deal with & had normal stool. At about 5 months he became less clingy. We've thrown gluten back in a couple times, mostly by accident & he had symptoms again. Now that he's 2.5 yrs old his main symptom seems to be fatigue instead of diarrhea. Since he's already on a gluten-free diet I asked my Dr to order the gene test. He said tissue iga/igg would still show if he was celiac. Results are: tTG IgA <2 u/ml (normal range 0-3 u/ml). tTG IgG 2u/ml (normal 0-5 u/ml). 

Should I be excited that his results appear normal & not worry about occassionally accidental contamination causing him damage? Or push for the gene test? He had ingested a few goldfish crackers 24 hrs before the test. 

You might want to find a doctor that knows something about Celiac in very young children.  A gluten free diet would make anyibodies negative.  Also, some tests work better on very young kids. 

 

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Edited June 21, 2018 by kareng
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[frieze]

karen is more polite than I.  make arrangements for a different doc, and then ask this one why he/she lied to you.

[kareng]

1 hour ago, frieze said:

karen is more polite than I.  make arrangements for a different doc, and then ask this one why he/she lied to you.

Not usually!  Lol ? 

sometimes you can show them that link and it will give the doc the info they didn’t know they needed.  It’s a much better link than a webmd or someone’s blog

[GFinDC]

Right, the doctor is wrong.  The antibodies are not present if the person is not eating gluten on a continual basis.  That's why the University of Chicago celiac center recommends 2 weeks of eating gluten before the endoscopy and 12 weeks of eating gluten before the blood antibodies tests.  They call this period of time a "gluten challenge".

[Lydia A.]

You can DNA test your son and yourself for the celiac genes yourself. I found out that I carried one copy of the HLA-DQB1 gene and my half-brother carries two (homozygous) from the 23andme test. It goes on sale during holidays for 30% off, usually. The test is FDA approved. They can't diagnose any conditions, but they can tell you if you carry the gene.

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[cyclinglady]

Young children often have not developed the TTG antibodies for accurate testing.  The DPG tests can be better detecting celiac disease.

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All celiac testing requires a person to be on a gluten diet (except genetic). 

 

[cyclinglady]

11 minutes ago, Lydia A. said:

You can DNA test your son and yourself for the celiac genes yourself. I found out that I carried one copy of the HLA-DQB1 gene and my half-brother carries two (homozygous) from the 23andme test. It goes on sale during holidays for 30% off, usually. The test is FDA approved. They can't diagnose any conditions, but they can tell you if you carry the gene.

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Genetic testing for celiac disease is primarily used to rule out celiac disease. Why?  Some 30% of the population carries the genes that could develop into celiac disease which is not “common” if you crunch the numbers.  In some cases, genetic results can help guide a doctor in diagnosing a patient when test results are negative.  Diagnosing celiac disease is not easy, especially in small children.  

I am not sure knowing genetic results for the mass population is a good thing.  For example,  I would hate for my kid to be labeled a potential celiac (genetic test results) when she applies for health, life or disability insurance.  This is still unchartered waters.  At least this is something she does not have to disclose on an application.   Maybe it is because I have been denied health insurance because I had one autoimmune disorder at the time.  It is not like that now, but who knows?  

If she was seriously ill, I would not hesitate to ask for genetic testing.