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What does this all mean?

beccibaxter

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beccibaxter Newbie
beccibaxter
Posted

Hi all i am new here and desperate for some help!

About five months ago my 13 year old Daughter started complaining of chronic pain in her upper, middle and lower left abdomen.

She also complains of the pain going into her back and feeling sick immediately after eating. She has been so very poorly with it. The Doctor thought she maybe had celiacs. So he took some blood on the 11th of November 2015 and after much messing about, today i (finally) was told the following by his receptionist.

They have made her an appointment to see the Doctor on Monday next week. She said her IGA came back at 1.01 and that the IGA to tissue trans is negative.

Unfortunately she did not know what any of that meant and said she could not go and ask the Doctor as he was busy.

What does any of that mean please?

I live in the UK and so i do not know if we evaluate results the same way as they do in the USA or not. I am so confused and so upset at seeing my Daughter in so much pain for so long.

We have been back and forwards to the Doctor and to hospital (when the pain has been unbearable) and all we get told is that they cannot do anything until they know what her test results are. So basically they have left her for months in pain.

She has had so much time off school and been so poorly that she has lost a lot of friends. Her once sunny personality is now gone and she just spends most of her time in her room upset and crying due to the pain.

Any help at all in helping me understand what these results mean would be so appreciated.

Please help me!

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beccibaxter Newbie
beccibaxter
Posted
  • Author

Please? Someone?

cyclinglady Grand Master
cyclinglady
Posted

From what you posted it looks like you daughter tested negative to the TTG Iga test, but I am not sure if she is IGA deficient which would make the test invalid.  Can you get copies of the lab test and include the lab ranges (lab ranges vary) and post?    I would also see if you can get the complete celiac panel.  The TTG test is the "go to" screening test for celiac disease in both the UK and US.  It is good but it does not catch all celiacs.  I, personally do not test positive to the TTg.  Instead, the DGP test is best for me and per my research for toddlers, but I am certainly not a toddler!  .  Here is the complete test:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)

 

Have they checked anything else, like gallbladder?   Mine started acting up at age 16.  It is a family curse!

 

Welcome to the forum!  

 
 
cyclinglady Grand Master
cyclinglady
Posted

Oh, my heart goes out to you and your daughter.   My daughter is turning 15 soon.  I can not imagine her being in so much pain!  ?. Please keep advocating for her, Mom!  

squirmingitch Veteran
squirmingitch
Posted

It's terrible that you are left hanging like this! I'm so sorry.

Can you get to the doctors office & get a copy of the of the test results? If you can, then you could post them here & we have people who can interpret them for you.

 

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      Help understand results

      By knitty kitty · Posted

      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
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      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
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