My Kids' 6-Month Blood Recheck

[chi1968]

So, after getting a call on Friday from my kids' GI doctor saying their preliminary test results looked normal, TODAY (3 work days later), I get a call saying that their celiac panels show elevated levels. The NP said something like "well, it wasn't the celiac panel they called about last time, it was everything else (I'm assuming iron, thyroid, or whatever else they tested?).

Then, she goes on to say that they (the kids) must be cheating on the diet. This is greatly upsetting to me because 1) I was diagnosed with Celiac around the same time (we all got tested when we found out one of my kids had it), and 2) I buy the food AND feed the kids, and I KNOW that NO ONE ate gluten. We changed out all of our kitchen utensils, pots and pans, EVERYTHING. We are ALL eating gluten free, and my kids, especially the oldest, is very anal about checking to make sure whatever he eats is gluten free. To hear they think our kids are sneaking food or whatever just makes me upset.

So -- it's really about 5 month's later for one of my kids (by the time we got the initial diagnosis, etc). 6 months for the other.

Is it that it hasn't been enough time, yet? I thought going strictly gluten free would have made a difference by now. I mean, barely no eating out, and only ordering off of the gluten-free menu. Maybe eating out 2 times a month! ONLY buying food that is gluten free, vitamins, toothpaste, etc. I should know -- our grocery bills have gone up significantly making sure we are only buying gluten-free cereals, pasta, pretzels, oatmeal. We eat a lot of salads and chicken, vegetables, fruit, some dairy. Even our condiments -- gluten free!

I argued (well, strongly suggested) to the NP that, no, my kids are NOT cheating on the diet, and that we were all eating gluten free. She said she'd talk to the doctor and get back to us. We actually have a follow up appt. in a couple of weeks.

What do you think?

[dcns65]

After 6 months both my children still have elevated numbers but they have come down. The GI doctor was not concerned as the numbers are coming down. My son's numbers were extremely elevated (above 300) and after 6 months were in the low 100's. I was told it could take a year to a year and a half for his numbers to normalize. My daughter's numbers were in mid 70's and are now down in the 40's. My son is very careful about eating Gluten free. My daughter tries her best but at some chicken nuggets and a graham cracker the week before her test.

So depending on how elevated their Celiac Panel numbers were it can take awhile to normalize. Keep up the good work!

[MitziG]

10 mos after dx my sons levels were still slightly elevated. Just had a 15 mo re-check and hoping they are at 0 now. Mine and my dd were at zero within a few mos. None of us are cheating. Everybody is different, and as long as the numbers steadily go down, I wouldn't worry too much yet.