Blood Test Results Are In

[Staceyshoe]

My son's celiac panel came back negative. I'm just curious what insights you might have into the results. This was on a 5 year old boy who was on a completely unrestricted diet (including a lot of gluten).

TTG IGA - 5 (no reference range given)

IGA - 20.3 L (ref range: 25.0-152.0 mg/dL)

Any thoughts?

[mushroom]

They ran only one celiac test, the TtG IGA, which was negative. The other test they ran, the total serum IgA, which is the validation test to see if he actually produces the antibodies they are trying to measure (some people are not antibody producers) was out of range low, meaning he does not make the normal amount of antibodies and therefore the IgA TtG test was invalid and means nothing.

Your doctor needs to run the IgG tests on him rather than the IgA, and while he's at it he should include the new, better, DGP (Deamidated Gliadin Peptide) test and the EMA (endomysial antibodies). You can be negative on some tests and positive on others. But any positive is an indicator of celiac.

[Jestgar]

What shroomie said. You didn't get a negative result, you got an undiagnostic result. Like testing for your son's sock preference when he doesn't wear socks - any answer given means nothing.

[Staceyshoe]

Thank you both for your insights! I'm so disappointed that the question of whether he has celiac is still unanswered. I did some reading on IGA deficiency and saw something that said it's usually diagnosed with IGA levels of 7 or lower. So I guess he kind of falls in a gray zone--higher than the typical level of someone who is "deficient" but still below the "normal" range. I distinctly remember that he was sick at the time of the blood draw. (He had a cold, and I almost canceled the appt). Would that influence his IGA levels?

I need to call the dr back to request more testing and want to make sure I'm prepared with the best argument possible. If his IGA levels were falsely "elevated" from being sick, then I think I have a very strong case for more testing. Just trying to prepare my case before I talk with the nurse again. I hate having to fight just to get a simple blood test done.

[ravenwoodglass]

Thank you both for your insights! I'm so disappointed that the question of whether he has celiac is still unanswered. I did some reading on IGA deficiency and saw something that said it's usually diagnosed with IGA levels of 7 or lower. So I guess he kind of falls in a gray zone--higher than the typical level of someone who is "deficient" but still below the "normal" range. I distinctly remember that he was sick at the time of the blood draw. (He had a cold, and I almost canceled the appt). Would that influence his IGA levels?

I need to call the dr back to request more testing and want to make sure I'm prepared with the best argument possible. If his IGA levels were falsely "elevated" from being sick, then I think I have a very strong case for more testing. Just trying to prepare my case before I talk with the nurse again. I hate having to fight just to get a simple blood test done.

Different labs use different parameters. He is definately IGA deficient as he is below the levels that lab uses. As mentioned that means any IGA celiac testing is going to be invalid. When you are done with all testing do give the family a good strict trial of the diet.

[Staceyshoe]

Thank you, Ravenwoodglass! I have learned so much here. I'm not sure what I would do without this board.

I finally talked to the nurse today. Both the nurse and the dr were in agreement that his blood test could be a false negative since his IGA levels are deficient. I requested different bloodwork, but the dr is wanting to do the scope. Honestly, I'm disappointed. I didn't want ds to have a scope. (He had one 4 yrs ago, and it was emotionally traumatic for him.) If it's negative, I would feel so guilty for putting him through a procedure like that when there was nothing there. (He's not very symptomatic. Mainly, I just want to make sure we aren't overlooking celiac.) My plan was to get a blood test, then do a gluten-free trial, and skip the step of the scope. I don't want to overlook celiac that is asymptomatic, but I don't want to put him through unnecessary testing either. Hence my dilemma. Advice?

[ravenwoodglass]

Thank you, Ravenwoodglass! I have learned so much here. I'm not sure what I would do without this board.

I finally talked to the nurse today. Both the nurse and the dr were in agreement that his blood test could be a false negative since his IGA levels are deficient. I requested different bloodwork, but the dr is wanting to do the scope. Honestly, I'm disappointed. I didn't want ds to have a scope. (He had one 4 yrs ago, and it was emotionally traumatic for him.) If it's negative, I would feel so guilty for putting him through a procedure like that when there was nothing there. (He's not very symptomatic. Mainly, I just want to make sure we aren't overlooking celiac.) My plan was to get a blood test, then do a gluten-free trial, and skip the step of the scope. I don't want to overlook celiac that is asymptomatic, but I don't want to put him through unnecessary testing either. Hence my dilemma. Advice?

My best advice would be to go with your own gut feelings. The procedure might not be as traumatic as it was when he was younger but if you feel strongly that he would not react well to it then go with the trial.