TtG # higher than when diagnosed

[josmom]

So, we have had Josie GF for over a month, we took her in to the GI for a follow up. Doc said she looks great, gained two pounds since December, and thought everything was going well. Josie was basically asymtomatic at the time of diagnosis but her TtG was 205 and her biopsy was positive. Since going GF she has persistent stomach aches and sore throats. Doc said it's acid reflux (yes, we tried the no diary for a few days that didn't seem to help either) so she's now on Zantac, which is not helping. The thing that really gets me is that I had them test her again after a month of GF (I know it's not that long), but she asked if I wanted to and I said sure. I wanted to see how much her numbers had dropped. To my horror I got a call a week later saying her TtG was 287. That's higher that when she ate wheat and was merry! The doc thought maybe she was cheating (which she's not) or were getting exposed to gluten. So here's my beef: if you were GF for a month (even if you accidentely ingested a small amounts of wheat) how could your numbers be higher than when you ate wheat regularly. I don't get it, and her BG's are all over the place. Sorry for the rant but I am so frustrated. Moral to the story, she will continue to be GF and we will let a few more months go by before we test again. Any thoughts?

[BrendaK]

That's frusterating. Especially since you're trying so hard to be GF!! I have read that it can take up to a year for the intestines to completely heal. 1 month GF isn't that long.

I do think that's unusal to have no symptoms of celiac then have stomaches AFTER going GF!!! My doctor has prescribed Levsin to help with stomach pain when glutened -- and it works really well, but I'm not sure it's for kids. And you don't really know why she has the pain in the first place!!!

Good luck -- I hope her numbers get better soon!

[DeniseS]

Did you check to see if the Zantac is gluten free? Is your whole house gluten free? Did you change your cutting boards, plastic cookware and containers as well as teflon pots and pans, gluten gets imbedded in all of these things and cross contamination can occur. Also did you accidently give a food with gluten in it, I did with my boys, I did not realize it until the Dr called and aked if we were sticking to the diet. After back tracking I figured out the food item Ore Ida Crispy Crowns, some Ore Ida products are gluten free and other are not.