Retest?

[WMO]

Hi there - (this is a little long, but I'm wondering if any of you could help me out)

I'm just wondering if my son (had his 3rd birthday last week) should be retested for celiac before I take him off of gluten again.

Back in October, he had a bad run of diarrhea. It got better, but not really. His BM's were always mushy (not watery), sometimes gritty. He developed an excema-like rash on his face. He had periods of ++irritability. I decided in January to do an experiment with gluten. He was off for 3 weeks, and he was a brand-new kid. almost no irritablity, way better BM's and the rash cleared completely. Took him to the doctor, who told me to put him back on gluten for 10 days and then have his bloodwork done. We did that, and his tests came back at <2 (normal is <20). The unfortunate part, is that other than a couple of bad BM's after initially giving him gluten again, his BM's were not terrible. The other symptoms hadn't really returned either yet at 10 days. Over the last 2 months, I kept him on a regular diet just to see what would happen. His BM's still aren't as bad as they were before, but they're definitely not as good as they where when he was gluten free. His rash on his face has definitely gotten worse and it sometimes flares up (usually once a day) so that he has all red blotches on his cheeks and chin. I'm noticing that the rash is just very lightly starting to show on his back and chest and tummy. He is also becoming increasingly irritable - which I can't help but think is related to this all.

I took him back to the doctor yesterday - and he agreed that my son definitely has a gluten sensitivity or intolerance - but with his test result, said it's a "non-celiac sensitivy". He said to "go with my gut" and take him off gluten. After the fact, I realized that I should have asked if it was worth retesting the ttg level now that it's been 2 months (as opposed to 10 days). I'm thinking of calling the office and asking them if we can... but before I do, I figured I'd ask on here to see if I should even bother. Is a test at 10 days as accurate as at 2 months?

Thanks so much for reading this! Any thoughts would be helpful!

[Cara in Boston]

I have no idea if it is different for kids, but as an adult, I was told to go back on gluten for 4-6 months (this is from a doctor at the Celiac Clinic at BIMC here in Boston.) I had only been gluten free for about two weeks. Two months may not be long enough and 10 days is just silly. Any chance you can go to a doctor in your area who has more experience with celiac?

Cara

[WMO]

Thanks for the response.

I did call my doctor's office, and his secretary told me that he'd have no problem with me getting a second test done. I just have to pick up the lab req from them. My next question is when should I test? He's been on a regular diet for 2 months now (after being off for 3 weeks and noticing a significant difference). Most of the symptoms returned in the last month or so, though GI isn't as bad as it was prior to the gluten free diet). Should I wait until it's been 4 months or go ahead and test now?

Thanks again.

[pricklypear1971]

They say you need to be on gluten 3 months prior to testing. Also, kids notoriously test negative even if they've never been off gluten - something about not having enough antibodies built up.

You may want to read about the latest news on non-Celiac gluten intolerance. There's no test for it but it does exist, and your son may well have it - and no amount of testing (at least with today's methods) are going to dx it. I believe you'll find info on NCGI on the main page of this site.

Another thing to consider - that rash could be DH. That can be biopsied today by a knowledgable dermatologist, and if positive you have a Celiac dx. Also, DH patients traditionally have less intestinal damage seen in biopsy (if testing gets that far).

So, there are a few things to consider. Its a tough call. Best of luck to you and your little guy.