15 Month Old - Testing Options?

[wvasweetness]

Short back story: Our now 15 month old starting having "virus like" symptoms at 6 months old (coincidentally at the same time we started feeding him cereal in his baby food). 40 doctors appts and 4 weeks of screaming 20 hours/day later I did some "Google research" and saw that pretty much all of his symptoms mapped to Celiac/gluten intolerance. Our pediatrician dismissed the idea of gluten being the culprit... we took gluten out of his diet and he was 99% better within 4-5 days.

The only blood work he had while he was on gluten was tTg, which was 290. Had I known then what I know now, and had our doctor been more knowledgeable, we would have had more testing done at that time. We now know that since he is gluten free he can't have the blood work or biopsy done with any accurate results.

We have since started going to a good pedi GI who suggests testing. Considering our son's severe reaction during the time that he was getting gluten, I'm afraid that getting gluten for an extended period of time (prior to testing) could go as far as hospitalizing him. During the time that he was getting gluten - and subsequently when he has accidentally been exposed - he screams non-stop for 18-20 hours/day without sleeping for more than 2-4 hours/day, has all of the "text book" gastro symptoms, and even does things like purposefully banging his head on things. It's awful.

It's importatnt to us that he get a diagnosis, but at what cost? He does SO amazingly well gluten-free. The thought of poisoning him just to get testing for a diagnosis is sickening.

[LChristina]

My first advice, having a somewhat similar case, is: run the blood tests as it is, keeping in mind that, usually, ten months are not enough to take the levels back to normal, not to mention that almost half Celiacs, especially kids, come with normal levels in blood tests even while being sick AND eating gluten!! So risking your kids health in not worth it! The blood tests may be misleading no matter what!

If the doctor feels that a gastroscope and biopsy are essential for the kid, to see the level of damage, to ensure that nothing else is wrong, to... They know the reasons, just a few traces of gluten now or then are more than enough! At least, this is what my friend, gastroenterologist advices me to do with my son, who has to run a biopsy for similar reasons...

I'm not a doctor myself, I'm just a mom in a similar case, mine is 9, and we still haven't got a name for what's wrong with my kid. And there are too many things wrong with his health...