New With Testing Q?

[shan1523]

Hello, first of all this board is awesome, Ive already read a lot of other posts. My question is this

first...is it true that my child would have had to have been on gluten for a period of time before the basic blood test...it came back negative so my ped thinks all is well...but my son has been gluten-free for about 5 months since each time Ive "tried" a food with gluten he reacts so badly and is in intense pain...

The second question is as a mom who has food issues (not celiac disease but dairy intolerance) I know what it looks and feels like, and can tell besides the diarrhea and the bloated belly and the arching that it puts him in pain to eat it...my question is---is there any benefit to getting a solid diagnosis at this point? I cannot fathom making my son eat gluten for any period of time before tests....even 4 bites of a forbidden food at a family picnic made for a bad time..

Can I just contine the gluten-free diet and pursue it later if needed, or is it never really needed ?

Thanks

Shannon

son 13 months, signs since 5 months, with baby oatmeal and baby barley cereal...

[KaitiUSA]

Welcome to the board

There is really no point in testing kids under the age of 2 because results are not accurate.

Yes, you have to be on gluten for at least 3 months prior to testing for it to be accurate.

If he is benefiting from the diet then stick with it because that is way better then having your child feel bad.

[tarnalberry]

is it true that my child would have had to have been on gluten for a period of time before the basic blood test?

is there any benefit to getting a solid diagnosis at this point?

Can I just contine the gluten-free diet and pursue it later if needed, or is it never really needed ?

<{POST_SNAPBACK}>

Yep. The tests detect antibodies. There are no antibodies in the blood if there's nothing for the immune system to creating antibodies against. It's about 3 months, and a decent dose. (For an adult, that's about 2-3 slices of bread a day, for a child that age, it would be less.)

Eh... The only one who can answer if you need a doctor diagnosis at this time. If you're happy to go based off of his body's signals, that's what really matters.

A definitive diagnosis might be needed if there's a conflict and you need something that is "official", but that might not happy either. You certainly can pursue it later, no matter what.

[Guest nini]

IMHO there is no reason to test a child with such a STRONG physical response to gluten. You already know what the problem is.

The only time it becomes an issue is in needing Dr.s notes for school for a special diet, BUT if you can get a dr. to back you up and write notes stating the child has a "gluten intolerance" then that should be enough.

My daughter's testing at 3 was inconclusive and the ped. gi just tried to say that she had IBS... her pediatrician supported me in trying the diet and seeing how she did... she did great so we have determined that she does have gluten intolerance. I was positively dx with Celiac before we had her tested, so we know that's what it really is, but the testing in kids is just not as accurate as it needs to be, in my opinion because the kids are too young to really have sustained much damage and the tests are looking for damage... or antibodies from damage...

Oh and once on the gluten-free diet my daughter no longer has IBS... go figure.

[Jnkmnky]

I've never, never, never been asked to Prove my son has celiac disease. He was dx at 3- He's been to preschool, kinder twice in two different schools, been admitted to the hospital once and had three different doctors in the past two years. *we moved twice in one year*. Our records were never caught up with us for first appts. No one questioned his dx. The hospital he was admitted to posted a great big hand written sign outside his room that stated "CELIAC DISEASE - NO GLUTEN". No one has ever asked us to "prove it". So don't worry too much about an official dx. This might be an issue for the future, though. You cannot be in the armed services with Celiac Disease. Insurance Cos have issues with Celiac, so I've read. Until the testing is improved, you control the dx through childhood if you feel you have to. There's no harm in that. Later, testing will probably be improved enough that all these self-dx Celiacs can prove the disease without eating gluten for three months.

[shan1523]

Thanks for all your replies. I feel better about my decision...and I am going to wait until age three at least to even "challange" gluten again, and then decide from there if an "official" diagnosis is needed. I often wonder if I should be tested though as I have been given the diagnosis IBS, but I guess soon I may be able to judge just based on the diet since I am going to cook gluten-free/dairy free for all of us, since its just easier that way right now.

Thanks again for all you help

Shannon

Son, 13 months, signs since 5 months

[Merika]

Hi,

I'm almost always in support of folks being tested before going gluten-free. In your case, I would wonder too about you being celiac. It is an easy test to do. If your results are positive, you'll have a better indicator for your son too, because this disease runs in families. If you are gluten-free for a few days before your test, no big deal. A few weeks would be a bigger problem.

So consider calling your doc Monday and just slipping in for a quick blood test. The nurse should be able to do it - the doc would barely need to stick his head in the door to say hi. If you say it to them that way, they may be more likely to squeeze you in (you know your doc best), than if they think you want to discuss ad nauseum some esoteric rare illness.....(haha).

Merika

[tarnalberry]

I agree with Merika - run in for a blood draw while you are still eating gluten and get the tests done. Since you'll be cooking gluten-free for the family, it seems, after, you may not get the opportunity to do a biopsy if you change your diet right away as well, but you'll get a blood test in while there's still a good opportunity.

[shan1523]

Good point thanks...for me I think I will get tested ASAP since I have been eating gluten, but for my son, Im not turning back now.

Thanks again for all your replies

Shannon