4 Year Old Daughter Test Results, Need Help Interpreting..

[SandyES00]

My daughter is about 4.5 and has a history of chronic constipation, fatigue and irritability.  We went to a GI who tested her for celiac disease and were told that they were all negative.  I was looking at them today and it's not like they were zero or anything and was wondering if anyone here could provide some feedback on them.

 

Tis Transglutaminase IgA  4 (Negative is less than 20)

 

Serum IgA  126 (reference range of 25-160mg/dl)

 

IgG Titer  Negative

 

Anyone have any thoughts?  I would appreciate any help you can provide.

[nvsmom]

Welcome to the board.  

 

It appears that your daughter's tTG IGA (tissue transglutaminase immunoglobulin A) was positive for celiac disease.    If the normal reference range is 0-2 for that lab, then her result of 4 was double the normal range.  That's a pretty significant positive result and probably indicates celiac disease.... I don't know what her GI was thinking if he said that was normal...

 

The tTG IgA is specific to celiac disease 95% of the time.  That means that 95% of positive results are caused by celiac disease.  5% of the positives, which are generally weak positives (like a 2.2), are caused by other health issues like T1 diabetes, chronic liver disease, crohn's, colitis, thyroiditis, or a serious infection; it generally doesn't produce a positive test result for no reason.  Since your daughter has celiac disease symptoms, and a high positive (if I've read what you typed correctly) then I would say she probably has celiac disease.

 

 

This report has more information on the tests on pages 10-13: Open Original Shared Link

 

The serum IgA is a control test, and your daughter's result was fine.  About 5% of celiacs are deficient in IgA which will cause false negative test results in all IgA based celiac tests (like the tTG IgA or DGP IgA).  If your daughter was low in IgA (like at a 20) her tTG IgA would have been low, like at a 0.4 (for example).  Her tTG IgA was accurate.

 

I don't know what an IgG titre is... the only celiac disease tests that are titres (where they keep diluting the sample until they can not detect the antibody) is the endomysial antibody titre, which is usually IgA based (EMA IGA).  It could have been an EMA IgG titre, but they usually only run that if the patient is deficient in IgG and their tTG IGG was positive.... I don't know what that IgG titre is, but my guess is that it wasn't a celiac disease test.

 

Below are all the celiac disease tests.  You might want your daughter to do more of them if you need further confirmation of her diagnosis.

• tTG IgA and tTG IgG (tissue transglutaminase) - most common celiac disease tests (you had one done)
• DGP IgA and DGP IgG (deaminated gliadin peptides) - newer tests that are superior at detecting celiac disease in young children and  cases of early celiac disease.
• EMA IgA (endomysial antibodies) - tends to detect more advanced disease
• AGA IgA and AGA IgG (antigliadin antibodies) - older and less reliable tests that have largely been replaced by the DGP tests
• endoscopic biopsy - 6+ samples taken

The blood tests require the patient to be eating gluten in the 2-3 months prior to testing so don't make her gluten-free yet.  The biopsy only requires 2-4 weeks of gluten.

 

Keep in mind that none of these tests have a sensitivity of 100% - they will not catch all celiacs.  Most have a sensitivity that can go as low as 75% (missing 1 in 4 celiacs).  Even the biopsy can miss up to 1 in 5 celiacs.  A negative result, therefore, does not cancel out a positive result.  A positive is usually a positive for a reason.  

 

Keep in mind that celiac disease is genetic.  Her siblings and you, her parents, will need to be tested for celiac disease every couple of years now, or as soon as symptoms present.  Celiac can develop at any time in life, so you all need to be aware of your risk.

 

Best wishes.  I hope she is feeling better soon.

[SandyES00]

So Sorry, I mis-typed, the negative range is less than 20

[nvsmom]

So Sorry, I mis-typed, the negative range is less than 20

 

Ah.  LOL  So that means that she is negative in only one test. It really is not uncommon for a celiac to be negative in some tests yet positive in others, especially if they are in the early years of the disease, which your daughter would be if she has celiac disease.  

 

If you suspect celiac disease, there are still four to six blood tests she could have done, plus the biopsy.  The DGP tests are often the best for detecting celiac disease in young children, you may want to try that route.  

 

You could also try the genetic tests which would tell you if she is indeed in the high risk population.  30% of the world has the DQ2 or DQ8 genes, and 97% of celiacs have those genes.  If she does not have the DQ2 or 8 genes, her chances of being a celiac become quite small.  Negative genetic tests would not rule out any risk of having non-celica gluten sensitivity (NCGS) though.