Should I Get DD Tested for Celiac?

[CrunchyChristianMama]

I've been debating this for months now. Here's the symptoms she presents when on a gluten diet...

~low to no weight gain
~blistery rash on her bottom
~trouble sleeping
~bloated belly
~super smelly gas

We have her off of (mostly) all gluten right now - we aren't super careful when we eat at restaurants with fries and such. Within the first 3 months of being off gluten she gained 3.5 lbs. (she had only gained 1-2 in the 9 months prior to that).

My fear with having her tested is that we would have to feed her gluten for the determined amount of time and I really don't look forward to dealing with the symptoms. She can't even sit in her car seat when she has the rash because it's too painful.

My fear with not having her tested is that if she is a true celiac, then we need to make the whole house gluten-free and worry about cross-contamination. Right now my DH and I still consume gluten and have it in the house. We don't really want to go totally gluten-free in the house and worry about cross-contamination if we don't have to.

She is not allergic to gluten, we have had a blood allergy test done. It did show up as moderate on her ALCAT though.

What would you do if you were me?

[AutumnW]

i have a similar situation with my boys. I suspected celiac disease and talked to their ped. Basically we agreed that if doing a gluten free diet helps then that is easier than testing. As long as your dd is healthy now you could leave it and let her get tested if she wants to be sure when she's old enough to decide and just keep doing gf for now.

[mamafish9]

You could to the genetic test for celiac. If she doesn't have the genetics, then you'd know it isn't celiac. If she does, that doesn't guarantee it's celiac, but it says she's at higher risk of getting celiac even if she doesn't have it now, which would put more weight behind getting more careful about x-con.

However, even if she is *only* intolerant, you may find her reaction to x-con get stronger over time, and you need to be extremely careful anyhow.

[jennybean0722]

The genetic test is called "MyCeliacID", we took that test after we took the Celiac panel through our ped. The best part about MyCel.ID is that you can do it anonymously....after all, they'll have your genetic material....

ALSO, there IS a sensitivity/intolerance test. Actually I think its sensitivity. In the level of the bodies "reactability", Allergy is the worst, Sensitivity next, Intolerance last. The test we took was called the MRT test. IT WAS AWESOME AND CHANGED OUR LIVES. The celiac tests AND allergy tests all came back negative. The MRT test tested for other reactions by his little immune system. Not only is it wheat, but cow's milk, corn, rice, soy, apple and a few other things.

Sounds overwhelming, but it was nice to have such a comprehensive test b/c it tested for over 120 foods and over 20 chemicals!!!! We didn't have to go totally gluten free/casein free, like I feared. He can have other kinds of dairy like goat and sheep milks, cheeses, but he can also still have cow's milk yogurt, etc. Basically, he can't have any processed of filler type food. We are basically on "Nourishing Traditions" sort of diet (its a cook book).

Good luck, but highly recommend the MRT Leap Test (I think that is the full name).

Jenny

[CrunchyChristianMama]

Originally Posted by jennybean0722

The genetic test is called "MyCeliacID", we took that test after we took the Celiac panel through our ped. The best part about MyCel.ID is that you can do it anonymously....after all, they'll have your genetic material....

ALSO, there IS a sensitivity/intolerance test. Actually I think its sensitivity. In the level of the bodies "reactability", Allergy is the worst, Sensitivity next, Intolerance last. The test we took was called the MRT test. IT WAS AWESOME AND CHANGED OUR LIVES. The celiac tests AND allergy tests all came back negative. The MRT test tested for other reactions by his little immune system. Not only is it wheat, but cow's milk, corn, rice, soy, apple and a few other things.

Sounds overwhelming, but it was nice to have such a comprehensive test b/c it tested for over 120 foods and over 20 chemicals!!!! We didn't have to go totally gluten free/casein free, like I feared. He can have other kinds of dairy like goat and sheep milks, cheeses, but he can also still have cow's milk yogurt, etc. Basically, he can't have any processed of filler type food. We are basically on "Nourishing Traditions" sort of diet (its a cook book).

Good luck, but highly recommend the MRT Leap Test (I think that is the full name).

Jenny

That's interesting about the MyCeliacID thing, I'll have to look into that further.

Evelyn has already had the ALCAT food sensitivities test done for 200 foods and 20 chemicals. That's how we found out about the gluten sensitivity and also a couple others.

[staceyshoe]

We recently did celiac genetic testing through enterolabs. We also looked at Kimball genetics. Both companies seem to be very highly recommended by celiac sites because of the specific type of genetic testing they do--alpha and beta or something (I honestly don't pretend to understand genetic testing!). We went with enterolab due to cost. We used cotton swabs to gather cheek skin cells (they use cheek cells, not saliva, for their testing). It was super easy and relatively inexpensive. If you are testing multiple family members, there is a discount also. But I think the original price is around half that of myceliacid. I know they use a different process, but I don't fully understand all the differences. Kimball genetics will work with you to bill your insurance co for the cost of testing. I'm not sure how often that is successful, but they were incredibly helpful when I called them on the phone. Just thought I'd throw that out there in case you want to research celiac genetic testing further.

[CrunchyChristianMama]

We decided to do some genetic testing (Entero labs).  I would like to at least know if celiac is a possibility.  She has started reacting to cross-contamination.  She at a goldfish cracker at church yesterday that she found on the floor and is broken out in a blistery rash again this morning.  I'm certainly not going to make her do that for 6 weeks to do the other test and just assume she has celiac if she is positive for the gene for it.