Son Just Diagnosed. Do I Need To Test Too?

[melikamaui]

Hello everyone,

This is my first post. My 6 year old son was diagnosed with celiac disease today. Well, one year ago, and then again today. The short version of the story is that our new gastro doc didn't trust the lab that the old blood work was sent to and wanted to run new tests. Tests came back positive, just like the first round. I told him they would based on my son's incredible sensitivity to gluten. He gets SO sick when he is glutened that it's frightening. He turns green, can't move, vomits and has diarrhea at the same time. He just moans and cries but can't even hold his head up to vomit or get himself to the toilet. It's the saddest thing I've ever seen.

The doctor wants to test my husband, other son and myself for celiac disease too. We all pretty much know he got this from me. I went gluten-free 6 months ago and a myriad of symptoms cleared up for me. Here are just a few of them...

migraines - which I suffered from bi-weekly are now gone

seizures - which I have had since childhood - GONE

brain fog - gone

bloating, cramping and gassiness - gone

And the biggest thing of all is that I hadn't had a menstrual cycle in over 15 months for reasons that no one could explain. (I'm only in my late 30's) Suddenly I finally got a period!

The tests for celiac disease are expensive as you all know. What I'm wondering is, based on my history and the fact that all of these heretofore unknown symptoms have cleared up since going gluten-free, do I need to test? Would you if you were me or would you just assume you have celiac?

Thanks so much. I'm really happy to have found all of you.

Melika

[Poppi]

I would assume.

I'm guessing that with your son being so sensitive and getting so ill that your home is gluten free anyway? What are the odds that you would be able to complete a 2-4 month gluten challenge while also making sure he doesn't get cross contaminated and having enough energy to do the things you need to do day in and day out?

[melikamaui]

Good point! Yes, our home is 100% gluten-free and has been for over a year. I'm going to have my other son tested for certain, but it seems like a waste of money to test myself. It just seems too obvious.

Thanks,

Melika

[Cara in Boston]

If your other son has been eating gluten free as well, all the tests will come back negative anyway. You need to be eating a fair amount of gluten daily for 3-6 months for a chance at an accurate test (and even then, there could still be a false negative.)

[Roda]

I understand from your post your son had positive blood work a year ago and was diagnosed celiac. He had repeat blood work recently and it was positive also. Are his numbers going down at all? Is there any chance gluten is sneaking in unknowingly?

[melikamaui]

His serology came back fine. It was the genetics that came back saying "Extremely High". Couple that with his horrific reaction to gluten and the doctor put 2 and 2 together. I was actually proud that his serology came back negative, it shows that we have been doing fine on the gluten-free diet.

I understand from your post your son had positive blood work a year ago and was diagnosed celiac. He had repeat blood work recently and it was positive also. Are his numbers going down at all? Is there any chance gluten is sneaking in unknowingly?

[Roda]

His serology came back fine. It was the genetics that came back saying "Extremely High". Couple that with his horrific reaction to gluten and the doctor put 2 and 2 together. I was actually proud that his serology came back negative, it shows that we have been doing fine on the gluten-free diet.

Keep up the good work. I'm curious to see what my youngest son's ttg is now. I'm due to get my blood work redone also. Since eliminating more stuff I'm hoping the Igg antigliadin has went down. All the others were fine with just that one still being elevated last Aug.