Should We Biopsy?

[Swansonjohnson]

Hello -

My name is Julie. My son Parker (now 3 years old) potentially has celiac disease. We have had blood work done and he carries both genes (sorry I am not sure what the technical names are) We removed gluten from his diet 1 year ago...not for celiac symptoms but because he was being formally observed by a neurologist because of his development, or lack there of. The neurological change form the diet lead us to screen for celiac disease. His antibody screening came back negative but he had been gluten free, or almost gluten free for 5 months. The GI specialist would not give us any diagnosis unless we put him back on gluten and ran the test again and also did a biopsy. At the time I was not interested because we had had such improvement in his development that his pediatrician and my husband and I thought there was more danger in putting him back on than there was with not having a firm diagnosis. As I have been researching I have found some sources of gluten that he has been eating from time to time and I was wondering if some gluten (small amounts 2-3 times per week...I know I should have been more careful....I thought it was gluten-free but it was not.) would be enough to yield biopsy results, or if it would be to little to get a positive result. I am not looking for medical advise just your thoughts. Parker has been through a lot in his young three years so we do not want to put him through it if it will be a waste of time. Parker also has a IgM deficiency that he receives IVIGG monthly for...I am not sure if this would affect the blood test results.

Any thoughts are welcomed.

Julie

PS we are in the Northern Virginia area and cannot find a decent pediatric GI so if anyone has any names that would be much appreciated.

Thanks.

[ShayFL]

The very SAD thing is this: That small amount of gluten he gets is not likely to yield a POS dx, BUT it is enough to be causing continual damage (even if you see no signs of that damage, it is happening). If he is Celiac, then that bit of gluten he is getting each week is like feeding him a few tiny pellets of rat poison each week. Not trying to be harsh, it is the truth. And I am not judging you, we all make mistakes. I still make them now and again. But Celiac is a serious disease with serious consequences.

If you feel that having an OFFICIAL Dx of Celiac will force you to keep him 100% gluten-free ALL of the time, then there is benefit in doing it. But he will need to be eating a regular gluten filled diet for at least a few months and even still there are A LOT of false positives in children under 6 because the immune system is not fully developed yet. And your son already has a deficiency there.

Having Celiac genes does not Dx Celiac. But at the very least you KNOW he is "gluten intolerant" because you had a dramatic POS response to the diet.

If it was me and mine, I personally would not put my child through eating a gluten filled diet for months to get an official Dx when they were responding wonderfully to the diet. That is just me.

Only you can decide what is best for you and yours.

Either way, you do really need to keep him 100% gluten-free. You might even see more positive changes.

[nora-n]

That smal amount of gluten could maybe show up in slightly elevated blood tests, but not biopsy.

In diagnosed celiacs, they run a yearly ttg IgA test to check for if the antibodies have gone down. Some show elevated antibodies until the diet is gluten-free enough. Also, the IgG versions of the tests tend to stay elevated loger than the IgA versions.

Maybe, if you are lucky, blood tests for both IgA and IgG versions of the antigliadin and tissue transglutaminase2, will still show a positive number, or just a number even though just below positive.

The genes ar DQ2 and DQ8, and if he has both then he has DQ2 and DQ8. In that case, or if it is double DQ2 or DQ8, the chances of being celiac are way higher, like 36 times or whatever. That. together with positive response, could be enough for a positive diagnosis (and that is why they run these tests in the first place, namely to diagnose those who have had a positive response to gong gluten-free)

nora