High Positive Bloods, Normal Biopsies 2year old

[Sasha Wearmouth]

Hello. Needing help. 2 year old had high positive blood results for Ceoliac. Biopsies normal. Specialist said he would redo bloods to see if highs wasnt just an unknown infection at the time.But if remained high he wouldn't do anything about it for at least a year. Her bloods are higher than original. Im Ceoliac. Her Gene testing hasnt arrived back yet.... Im wanting a definite diagnosis.....shall i go for another opinion . Shes grumpy, clingy, yuck poos amd just not that happy with life

 

anti TTG IgA:135.4 CU ( 0.0 - 20.0 ) HH

TTG IgA Interpretation:Positive A

IgA:0.5 g/L ( 0.1 - 1.1 )

Endomysial Ab:Positive A

Deamidated Gliadin Peptide IgG:35.5 CU ( 0.0 - 20.0 ) HH

DGP IgG Interpretation: Weak Positive A

 

Please help

[cristiana]

Hello Sasha and welcome to the forum,

What a frustrating situation for you both.

It is strange the biopsies were negative, but one thing I believe that can happen is that damage can be patchy, and therefore it is possible that it was missed.  Do you know how many samples were taken, and from how many different areas - this info sometimes finds its way into the consultant's report?  

Cristiana

 

[trents]

Cristiana gives good advice. But you may be surprised to know it is not all that uncommon to have positive antibody tests and with a negative biopsy and still have celiac disease. We have had forum participants report that combination a number of time since I have been participating on this forum and most of the time it is with young children. Celiac children just seem to often throw unusual test results. Their immune systems are immature and their body is so resilient. Sometimes we also see the opposite (even in adults) with positive biopsy and negative antibodies. Your child's antibody tests are strongly positive except for the one and it is weakly positive. That strongly suggests celiac disease to me. And there are all those classic symptoms.

I  think you need to trial a gluten free diet for you child. But realize when you begin that it will start to drive antibody scores down and invalidate further testing. So, you need to weigh the merits of starting gluten-free now to relieve the child's distress vs. waiting until all testing is done.

Edited August 17, 2022 by trents

[cristiana]

Trent's is also good advice.🙂   

One thing to add - I am not sure where you are posting from, but in some countries there are real benefits in obtaining a formal diagnosis.  In my country, a coeliac diagnosis = an annual follow-up from a gastroenterologist, a nutritionist referral, and as one ages (I am not sure if it applies to children) a DEXA bone scan every few years to check for osteopenia.  I read once that in Italy - not sure - extra money may be given by the government to cover the extra cost of gluten free bread and pasta. 

So that might help you decide on whether you want to try to secure this formal diagnosis by further testing.

[trents]

Also, the endomysial antibody test is very specific for celiac disease. It is the most specific test available but the least sensitive. To me, that says a lot when it is positive. Kudos to your physician for running a full celiac panel instead of just the tTG-IGA. 

[Sasha Wearmouth]

3 hours ago, cristiana said:

Hello Sasha and welcome to the forum,

What a frustrating situation for you both.

It is strange the biopsies were negative, but one thing I believe that can happen is that damage can be patchy, and therefore it is possible that it was missed.  Do you know how many samples were taken, and from how many different areas - this info sometimes finds its way into the consultant's report?  

Cristiana

 

They told me 9 from 3 different spots.

[Sasha Wearmouth]

34 minutes ago, cristiana said:

Trent's is also good advice.🙂   

One thing to add - I am not sure where you are posting from, but in some countries there are real benefits in obtaining a formal diagnosis.  In my country, a coeliac diagnosis = an annual follow-up from a gastroenterologist, a nutritionist referral, and as one ages (I am not sure if it applies to children) a DEXA bone scan every few years to check for osteopenia.  I read once that in Italy - not sure - extra money may be given by the government to cover the extra cost of gluten free bread and pasta. 

So that might help you decide on whether you want to try to secure this formal diagnosis by further testing.

Thank u .. we are New Zealand