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suzeo

Mixed results in child

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Hi,

 

I'm trying to sort out my 11 year old daughter who has a lot of stomach pain and belching.  Her IGG and IGA were both positive 203 and 68 (above 25 positive at this lab) her TTG was negative and her biopsy was negative.  What does this mixed result mean?

 

Thanks for your insight,

 

Susan

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22 minutes ago, suzeo said:

Hi,

 

I'm trying to sort out my 11 year old daughter who has a lot of stomach pain and belching.  Her IGG and IGA were both positive 203 and 68 (above 25 positive at this lab) her TTG was negative and her biopsy was negative.  What does this mixed result mean?

 

Thanks for your insight,

 

Susan

Welcome.  I think that the IgA and IgG tests are ordered as control tests for celiac disease testing.  If in range (or close to it), the TTG IgA and the TTG IgG tests are considered to be valid (results accurate).  Those tests also let a doctor know if there is an immune system issue.  You are talking about immunoglobulin tests, right?   The EMA and DGP celiac tests are missing.  What made the doctor move forward with biopsies if the TTG screening test was negative?  

A negative biopsy is possible as the small intestine is vast (size if a tennis court).  Patches of damage can be missed.

What did the doctor say?  Was anything found (e.g. SIBO, H. Pylori, etc)?  

Edited by cyclinglady

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Thank you for your reply.

Attached are the actual lab results.  Doctor has been hearing of more mixed lab results lately so did the biopsy.  He thinks maybe she is pre-celiac.  H Pylori was negative.  Everything else in scope was negative but showed evidence of irritation from reflux.  We are trying gluten free but understand that this will not allow a future diagnosis unless she goes off it again.  I just hate to do gluten-free with an 11 year old for the foreseeable future without  a real reason.

 

test results.png

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She has a high for two tests, DGP IGA and DGP IGG. There are people on this forum with high DGP and normal TTG who have celiac. The biopsy results should confirm it for you. Did the pathology report from the biopsies come back yet? Maybe it did and I misunderstood?

?

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40 minutes ago, suzeo said:

Thank you for your reply.

Attached are the actual lab results.  Doctor has been hearing of more mixed lab results lately so did the biopsy.  He thinks maybe she is pre-celiac.  H Pylori was negative.  Everything else in scope was negative but showed evidence of irritation from reflux.  We are trying gluten free but understand that this will not allow a future diagnosis unless she goes off it again.  I just hate to do gluten-free with an 11 year old for the foreseeable future without  a real reason.

 

test results.png

Wow!  Those were not just Immunoglobulin tests.  Those were actually celiac antibodies tests!  I wonder why the (AGA) IgA was not flagged as a high result?  Your daughter's results were comparable to mine.    I test ONLY to the DGP IgA  (gliadin) even in follow-up testing.  Her results are very high!  My biopsy did reveal damage.  Do you know if they took enough biopsies?  Six or more is best.  Remember, it is easy to miss damaged areas.  I would ask for a copy of the pathologist's report to confirm the number of biopsies. 

The TTG can be elevated for other reasons.  I have yet to find elevated DGP (Gliadin) elevated for other than celiac disease.  That is strange.   I wonder if it is a lab typo?  

Okay, back to your  daughter.  You should seek a second GI opinion.   If she does have celiac disease, this is a critical time for growth.  A strict gluten-free diet can eliminate long term complications.  

 I guess the plan is to do the diet and then retest her antibodies?  

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Here why I think you should continue to advocate for your daughter's health.  This is not related to celiac disease.  My niece was diagnosed with Crohn's.  We thought for sure she had either the family gallbladder curse or celiac disease.  Everything was negative.  Nothing found.  Four GIs (two were PED GIs).  Finally the fourth GI did a pill camera.  Caught severe damage way beyond the reach of either scope.  She is doing well now with treatment. 

Her Mom did not settle.  She knew that her daughter's symptoms were real.  So, listen to your "Mom Radar".  Something is wrong.  Unfortunately, your daughter's case is not clear cut.  So, more research and medical advice is needed.  

Oh, the pill camera is being used as another diagnostic tool for celiac disease.  Something to research.  

 

Edited by cyclinglady

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Sorry, I keep looking at the lab results.  The AGA (Anti-Gliadin)is an older test which has been replaced by the DGP test years ago.  Do you think your doctor ran the old tests?  I assumed the lab was using the old name, but that the celiac test was new.  In any case, it is still very positive but it makes me wonder how celiac-savvy your GI is.  

These are the current tests:

http://www.cureceliacdisease.org/screening/

Can anyone else on the forum clarify?  

.....so, I found this about the old AGA tests.  It looks like other issues like liver disorders, IBS or other immune issues can associated with an elevated AGA.  Look at Mistake #9  (EU GI group): 

https://www.ueg.eu/education/latest-news/article/article/mistakes-in-coeliac-disease-diagnosis-and-how-to-avoid-them/

 

Edited by cyclinglady

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