What is this all about?

[Laura]

So we moved to Utah and our new doctor wanted to test Jonah for Thyroid because he's super slim and has actually lost weight. He also decided to run a complete celiac test to see how we are doing going gluten free. It's been 2 years and we do not mess up so I was sure that would be good. He called me this morning very confused. He said Jonah's antibodies for celiac were 0. He said he's never seen that in a patient with celiac, even under the best control. Is it possible he never had it? This doctor says he thinks so. He wants all our old records from Texas and he's been on the phone with specialists about it this morning. Looks like we're most likely going to go on a normal diet and then test again. Has anyone ever heard of anything like this?

[WestinsMom]

Nope, but I would be lying if I said I hadn't wished it! Good luck!

[BrendaK]

Yes, I have know several people who have tested negative for antibodies to celiac and then had a positive biopsy. If the biopsy is positive, regardless of the antibodies, it's diagnosed as celiac.

Did Jonah have a biopsy done initially?

Like diabetes (not all people with t1 have antibodies), not everyone has the antibodies for celiac.

In the back of my mind (which may not be accurate), I thought that if you were on a gf diet, the antibodies decreased. That could be wrong, though...

[Laura]

I forgot to mention our original tests were borderline. We never had a positive blood test. We did, however, have a biopsy done. The biopsy said we were at the extremely early beginnings. I never had a follow up. I just started shopping gf.

[Laura]

Yes, I have know several people who have tested negative for antibodies to celiac and then had a positive biopsy. If the biopsy is positive, regardless of the antibodies, it's diagnosed as celiac.

Did Jonah have a biopsy done initially?

Like diabetes (not all people with t1 have antibodies), not everyone has the antibodies for celiac.

In the back of my mind (which may not be accurate), I thought that if you were on a gf diet, the antibodies decreased. That could be wrong, though...

And I mentioned to him that Jonah's diabetes antibodies were negative too so I worried about that. He said he'd never seen 0 in a person with celiac. He said he's seen low numbers but not 0. At least we already live gf and if it's not some amazing news nothing will change. Jonah was just so upset this past weekend about having to bring his own cupcake and his own pizza to a party. I know how much he wants to feel "normal."

[Laura]

Turns out we have just done a really good job of being gluten free over the last 20 months or so. Our doctor spoke to specialists and even though the number is super low they looked at the biopsy from March 06 and they say if he were to go back on gluten he'd get sick. So the good news is his body is totally healed and there really is no bad news because nothing changed.