celiac testing for toddlers

[babygirlie]

I requested a gluten allergy test for 15m old daughter and the ped said he would not give a test like that until she was 18 months old as she may still carry the antibodies from mom. He also stated she must be on gluten.

For a blood test WHY do you have to be on gluten? Doesn't it look for the DNA saying if you HAVE the dna for it and hence the susceptibility to it? DNA should be there regardless shouldn't it?

I very much want to know if she is allergic to gluten.. on the other hand I VERY much have zero desire to give her gluten. I had a helllish life due to gluten and was in constant ridiculed pain (ie you just don't want to go to school etc while I was screaming my lungs out). I don't eat gluten. I hate touching it. I hate it in my house. I'd feel awful if I gave it to her. Though I HAVE touched gluten to cook very special dinners for dh I still absolutely abhor being near the stuff and my hands are usually raw from washing afterwards.

Is there any way to test her without forcing her to eat this stuff? Especially if she's on the spectrum I don't want her to have anything that hurts her or slows her down more. She has never ever had any before.

[Mittsy]

I'm not sure but I don't believe doctors are looking for DNA when they do allergy testing. I do know that your child must be eating on a semi-regular basis whatever it is you suspect they're allergic to, for up to a few days to a week before, so the doctors can identify the reaction in the child's body. If the child has the testing done and they have not been consuming the guilty food there will be no reaction for the doctors to observe, in which case the tests will render a false negative.

I hope I made sense to you. Good luck!

[elmh23]

The celiac test doesn't look at DNA, it looks for an allergic response. I was told that we had to be eating gluten for six weeks before the testing would be valid (not hard at the time since we hadn't gone gluten free.) When our testing came back negative, the doc said that the blood test is only 80% accurate in the first place so try going gf and see if it helps. There is also a skin test but I can't remember what he said about that (ds was screaming like crazy for a good amount of that allergist appointment.)

[delightedbutterfly]

I am new to the whole celiac thing as I am still going though testing, however I do know that I have a gluten intolerance.

However what I have learned is yes there are DNA tests that will show markers but they are not 100% either way.

2 years is the normal time for a toddler to be tested for celiac and yes they need to be on gluten and NO it is not an allergy so it is not done like allergy testing.

And to get the best result you should be on gluten (about 4 servings a day) for at least 4 months before testing. And even then the blood test is only part of the equation, the small bowel biopsy and diet change are the other parts.

So you could have your child tested for the DNA markers which may suggest celiac or might not and your child could still have it. The only way to know for sure is to put your child on gluten for at least four months and then do the blood tests, biopsy and back off the diet.

Doing any of that now with him off the gluten would show him as not being celiac due to his young age and not digesting gluten.

Is there a reason you NEED a diagnosis now? Could you not just keep him gluten free until such a time he decided otherwise and then give him the information and diagnosis process then?

[PikkuMyy]

It sounds from your post like you plan to keep her gluten free. Why would you need to do the testing then?

And to echo others, no it doesn't look at DNA, it looks for a reaction. Depending on the results of the blood test, they would then to an endoscopy, which your daughter would need to be sedated for. They take a biopsy from your large intestine and look for damage to the celia caused by gluten in people with celiac disease. My mother has it so I was tested at 18 years.

[babygirlie]

I don't. I just want it out of the way I guess so I don't have to worry about it if someone is watching her and doesn't understand what gluten is. Very few people do in comparison. My new roommate asks every week if cheese has gluten. I guess it's confusing and hard to remember.

I would rather get the DNA test done. If she's susceptible then that would be a done deal for me, not a let's wait and see WHEN pain develops. Seems cruel. I'm dissapointed the easier tests are not first offered by doctors. And under NO circumstances will she ever have a biopsy for celiac! That is absolutely barbaric and unnecessary. Money scam. I've had several biopsies on other organs and it was completely unnecessary.. yes still inflamed just like it looked duh. Excruciatingly painful and hard to recover from. And it would biopsy the stomach and possibly the small intestine if they could get that far.. certainly not the larger one all the way from the mouth. :P As a matter of fact poo works even better than blood (and I would know every allergen as opposed to just one) so I may go that route, though I would have to pay for it out of pocket.

Well, I am dissapointed they don't test for the DNA pattern which simply tells you without the scabbing and malnutrition and pain to go through. It's commonly done on all babies as soon as they're born in other countries since it's so common to be allergic. Dang money makers in this one.

I guess I will just have to buy a book for all who will potentially babysit her. Most people are allergic to wheat anyway so why bother.

[laurata]

If you want the DNA testing, and are willing to pay out of pocket, I know that you can order it yourself. It is about $350 and you can do blood or saliva.

http://celiacdisease.about.com/od/di...a/DNAtests.htm
Kimball and MyCeliacID are the ones I knew about. If my ds wants to trial gluten when he is older, I will have this done first.

[Purplegal]

Well I have celiac and so had my DD tested at 2 years old...before that I just kept her GF. We saw a pediatric gastro who did the DNA marker blood test. She said if DD did NOT have either one of the genetic markers, she is 99% certain to NOT have Celiac. However, if she did have the marker she would need to do the elimination diet etc and get further testing to confirm it.
DD did not have the marker BTW. And that's good enough for me!