Daughters test results looking for clarity

[Ceumom]

Good afternoon,

my daughter has been symptomatic for over 2 months now. We got a celiac panel as well as other blood work done. Her TTG IGA and IGG were negative (<1) but her deamidated gliadin IGG was positive (30.5) standard range is under 15. We are waiting for her appointment with the pediatric gastroenterologist in a few weeks, but I just need some clarity on these results. Is the deamidated gliadin IGG being positive a conclusive result for celiac? Just trying to understand these results so I can better prepare myself and her for the next steps. 
thanks! 

[trents]

First, how old is your daughter? Second, had she already started a gluten-free diet or had she significantly cut back on gluten intake before the blood draw?

By the way, welcome to the forum, Ceumom!

[Ceumom]

31 minutes ago, trents said:

First, how old is your daughter? Second, had she already started a gluten-free diet or had she significantly cut back on gluten intake before the blood draw?

By the way, welcome to the forum, Ceumom!

My daughter is 12 and she has not stopped eating any gluten. We were advised not to stop in case further testing needed to be done 

[trents]

At that age her immune system may not respond the same way as an adult's would so that might explain the negative for the tTG-IGA. We see this pretty commonly on the forum. It was good that the physician ordered more than just the tTG-IGA. Many physicians will only order that one and so, many are missed who actually do have celiac disease.

What are her symptoms?

[Ceumom]

34 minutes ago, trents said:

At that age her immune system may not respond the same way as an adult's would so that might explain the negative for the tTG-IGA. We see this pretty commonly on the forum. It was good that the physician ordered more than just the tTG-IGA. Many physicians will only order that one and so, many are missed who actually do have celiac disease.

What are her symptoms?

Yes I was super happy about that as well since it seems to not be part of the normal first work up. Her deamidated gliadin IGG was 30.5. Her symptoms have been moderate to severe stomach cramping multiple times daily, nausea and occasional vomiting. I thought due to her age that it could be premenstrual but it has gotten worse so that’s why we got the blood work done. I’m just curious is the deamidated gliadin IGG means it most likely is celiac? 

[trents]

5 minutes ago, Ceumom said:

I’m just curious is the deamidated gliadin IGG means it most likely is celiac? 

Most likely celiac, yes. I'm not sure about this, but it is possible the positive deamidated gliadin IGG points to NCGS (Non Celiac Gluten Sensitivity) which some experts look at as a possible pre-celiac condition. With either one, however, the antidote is the same and that is total avoidance of gluten for life. They also share a lot of the same symptoms but NCGS does not damage the small bowel villi. We don't know much about NCGS and it's immune system pathway. There is no test for it. celiac disease must first be ruled out in the face of persistent symptoms.

[Ceumom]

4 minutes ago, trents said:

Most likely celiac, yes. I'm not sure about this, but it is possible the positive deamidated gliadin IGG points to NCGS (Non Celiac Gluten Sensitivity) which some experts look at as a possible pre-celiac condition. With either one, however, the antidote is the same and that is total avoidance of gluten for life. They also share a lot of the same symptoms but NCGS does not damage the small bowel villi. We don't know much about NCGS and it's immune system pathway. There is no test for it. celiac disease must first be ruled out in the face of persistent symptoms.

Okay thank you so much! This is what I was thinking that it most likely was but either way she is reacting to gluten itself. I have a sister who is suspected celiac, she was put on a gluten free diet years ago before a biopsy was done and she gets so sick if she gets cross contaminated that she can never go back in gluten to find out for sure. I know it can be genetic 

[trents]

Well, if the biopsy is inconclusive, and we do get reports on this forum of people with positive antibody tests but negative biopsies (go figure?), you might look into genetic testing for the possession of celiac genes. There are two main ones but more are now under suspicion. But the two main ones are DQ2 and DQ8. I think also now DQ6 has been recently implicated but anyway, having one or more of those genes at least establishes the potential of developing celiac disease. And if you add to that some definite symptoms then it would steer one in the direction of celiac disease as opposed to NCGS. Companies like "123 and me" offer genetic testing for celiac disease and I think it costs about $200 US.

[Ceumom]

33 minutes ago, trents said:

Well, if the biopsy is inconclusive, and we do get reports on this forum of people with positive antibody tests but negative biopsies (go figure?), you might look into genetic testing for the possession of celiac genes. There are two main ones but more are now under suspicion. But the two main ones are DQ2 and DQ8. I think also now DQ6 has been recently implicated but anyway, having one or more of those genes at least establishes the potential of developing celiac disease. And if you add to that some definite symptoms then it would steer one in the direction of celiac disease as opposed to NCGS. Companies like "123 and me" offer genetic testing for celiac disease and I think it costs about $200 US.

Okay great! Thank you so much for all the info! We will definitely look into this, you have been very helpful!