Very Confused About 3 Yr Old

[Busybmom]

I have a 3 year old little boy that has been having gi issues since he was about a 1 year old. He has had several biopsies of the small intestine that has showed his villi is blunted. But his blood test has came back negative. He has severe ftt and got a gtube at 18 months for failure to thrive. He still struggles with his weight even receiving lots of formula. There are days he has bad diarreah. His gi is at a loss so he is sending us to an celiac specialist. Any advice is much welcomed!

[Ollie's Mom]

I'm not as well versed on testing as others here (who I am sure will chime in), but the biopsy results came back positive for celiac didease, correct?

You do not need a positive on both the blood workand biopsy for a ddiagnosis. And since doctors seem to still consider a positive biopsy to be the "gold standard" for a celiac diagnosis, I'm not sure what the confusion is? Unless there is concern that the blunted villi are being cause by something other than celiac? (I don't know if that's possible)

False negative blood tests are fairly common, especially and children, and also depending on what tests were actually run (ie - was the full celiac panel run? Or only a few of the tests?)

Your son's issues seem to be severe. I would ensure that a full blood panel was run asap, and if not, I'd get more blood drawn for those tests right away. Then I'd go gluten-free with him right away. I wouldn't wait for an appointment with a celiac specialist first. I'd just make sure his GI was following the gluten-free trial (including tracking his weight and digestive symptoms) so that it is in his record for the celiac specialist to see.

(I'm sure someone will post the full list of blood tests for the celiac panel).

Good luck, and please keep us posted!

[tarnalberry]

Rarely, dairy can cause blunted villi as well, but celiac blood tests will of course come back negative. What dietary changes have you tried?

[Busybmom]

I'm not sure what blood test have been done. (Ill have to look at his records) but he was dairy free for about a year and everything was still the same. We tried gluten free for about a month and everything was the same. So his gi doctor told me to take him off the diet. (I thought he would need to be on it longer)

[mushroom]

Yes, ideally you should trial the diet for at least 3-6 months to evaluate its effect. What about celiac diagnosis does your doctor not understand? For years we have been told that biopsy trumps blood work, and now your doctor seems to be telling you that because his blood work was negative he is not celiac? There are known to be false negatives on blood work. However, as tarnalberry says, it is possible to develop villous blunting from causes other than celiac, the most common alternative being dairy. Does he seem to have problems with dairy?

I would accept the specialist referral to try to get to the bottom of it, but if when you get to the bottom there is no definitive diagnosis I would still do a six-month trial of the diet, along with dairy free, and see how he goes.