New Celiac Diagnosis

[lolabelle 0]

Hi! I am new on here, and was looking for opinions on test results. My daughter is 4 and just had a whole panel of blood work done after having blood in stools, constipation and being anemic.  They checked for celiac along with a few other things. Thanks for the help as we wait to hear from the doctor

TTG IGA

0 - 19 CU   3710   ENDOMYSIAL AB  <1:10  1:640            IGA   25.0-152.0    123

 

 

[nvsmom 334]

Welcome to the board.

I'm afraid that your daughter's tests look quite positive for celiac disease.

The tTG IgA is the tissue transglutaminase immunoglobulin A test. It's the most common cs test.  The normal range is 0-19, and it appears her result was 3710.  Very high!

The ENDOMYSIAL AB (antibodies) is the EMA IgA test. It tends to detect more advanced damage. It is rare to have a positive EMA IgA without already having a pretty high tTG IgA (they are very similar tests).  The EMA IgA is done as a titre. The sample keeps being diluted until the EMA IgA is no longer detected. 1:10 is normal in your lab, sometimes 1:20 is normal. 1:40 or 1:80 is the start of positive, 1:160 is not unusual. A few people get a 1:320.  I'm afraid a 1:640 is very very high and I only see that a few times per year.

The EMA IgA is highly specific to celiac disease. Your chances of having a positive test and not having celiac disease is less than 2%. The ttG IgA is a very good test too with a false positive rate of about 5%. I'm afraid there is little doubt, even without doing an endoscopic biopsy, that she has celiac disease.  I was positive in those two tests too, although not as high as your daughter, and we skipped the biopsy because we were so sure that it was celiac disease.

IgA is just a control test to measure immunoglobulin A - a control test.  About 5% of celiacs are deficient in IgA which would cause false negative test results in the actual celiac tests (tTG IgA and EMA IgA). She is within normal range and her celiac disease test results were accurate.

This report by the World Gastroenterology Organisation has more information on the tests: http://www.worldgastroenterology.org/guidelines/global-guidelines/celiac-disease/celiac-disease-english

When you see the doctor he'll probably want to do an endoscopic biopsy on her to confirm the diagnosis. If so, she'll need to eat gluten in the 2-4 weeks prior to the test so you may not want to start the gluten-free diet yet. If you choose to have it done, make sure at LEAST 6 samples are taken as damage can be patchy.

You may want to have her nutrients checked too.  Celiacs are often low in B12, A, D, Mg, Ca, K, Fe ferritin, Zn, and Cu. Celiacs are more likely to develop type 1 diabetes and hashimoto's so you'll want to keep an eye out for that in future years.

And my final bad new, the rest of the family will need to be tested for celiac disease, and retested every 2 years if they continue to eat any gluten.  First deghree family members have somewhere between a 1 in 10 to 1 in 22 chance of developing celiac disease.

Hang in there mom. It's great that you caught this at such a young age.  You've saved her many complications and years of discomfort. It's not great to have, but now you know and can make her well.  

[lolabelle 0]

Thank you so much for the response and the great info! I thought by the numbers and my research it looked as though she did too. They did mention doing an endoscopy, which we haven't decided on yet. She has a twin brother so we will definitely get him checked and ourselves. She is low in Ferritin 2.0 and iron deficient. They ran a metabolic panel, but didn't check nutrients so I will ask to have that done.  Very glad we caught it and can make the needed changes! Thanks  so much :)

[nvsmom 334]

Good luck with your son.  I hope he is in perfect health.

Let us know how it all goes too.  :)