I need help. My son has lost weight since his 12 month well check. He has diarrhea off and on, sometimes up to 6 or 7 a day. He has horrible allergies and eczema. He was put on Elecare at 3 mos of age due to diarrhea and blood in his stool. We are being worked up for celiac disease. Here are his lab results, can anyone help me with these.

Antigliadin Abs IgA- 16
Antigliadin Abs IgG-48
both of which are high.

tTg IgA - 1
tTg IgG- 1
Endomysial Antibody IgA-negative
IgA quant-86
all of which are normal.

We are seeing a GI on Thurs. My pedi told me they would probably perform a biopsy. Did anyone else have elevated antigliadin and normal tTg and still have celiac?

My son was diagnosed at 15 months but not from the GI or his pedi he had seen for over a year. They ran his blood tests at 4 and 9 months but I was told everything was fine. We consulted with an allergist after he started to display worsening malnutrition symptoms, negative growth charts and 7+ loose stools a day. She told us that in the Celiac's panel he had 1 test come back elevated and 2 that were closer to normal but still concerning given his other tests and his symptoms. She also informed us that blood tests and the biopsy often give false negatives in children under 5. Apparently they just have not been reacting to the gluten long enough to have damage that would show on these tests. Hopefully your GI is more aware of Celiac's than ours was. I had to just try it on my own and see. The results were literally miraculous for us. He is sleeping all night which he never did before and is down to 1-2 normal stools a day that no longer look like undigested food but "normal" poop.

As far as the biopsy, It is up to you. To me it seemed pretty invasive for a test that was likely to be inconclusive for his age group. The best diagnostic tool for us was the gluten-free diet. If you do go with the biopsy it will need to be while he is on gluten to see the damage.

I hope that you find the answers you need with the GI. My son has not started to grow again but hopefully he will heal enough to start gaining and growing again. Right now at almost 17 months he is in 6-9 month clothing. I was very hard to have his doctors telling us that nothing was wrong. If he is not growing I think you are doing the best thing by pursuing answers. I wish I had earlier.

Here is a link you might find helpful for explaining why TTG or EMA might be negative in a young child but antigliadin antibodies positive:

http://americanceliac.org/diagnosis.htm

"Young children may not make the some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them. So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results."

Hey - I know this is a lot to take in, but I am also very excited for you. If your son has been sick, he's going to do much better on a gluten-free diet.

Also - in the long term, consider notifying relatives of your child. Since Celiac has a genetic component, there may be other affected family members who may have Celiac Disease symptoms, some which might be very different symptoms than the ones your child has. http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/ Sometimes diagnosing one family member is all it takes to get many people in a family on the right track to health.

April - mom of three boys

Thank you for the reply. I will let you know how the appt goes. Glad your little one is better.

Thanks you so much for the link. It was very helpful. I am anxiously awaiting his appt on thurs. I will let you know how it goes.