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GFM Apprentice
GFM
Posted

I've posted before about my 9yr old who has been on a gluten free diet since April 2007. His EMA (IgG + IgA) results started out at 1:20480. In May 2008, he was down to 1:160 but the doctor suspected he was still getting some gluten since it had been over a year. The dietitian said to continue as is and that he probably would take longer to heal. We just had him retested before school and I was shocked and upset that his test came back at 1:10240. He is going to be retested tomorrow (9 days after).

So something obviously happened in the past three months, but I can't pinpoint what it could be. We are very careful about reading ingredient labels. I know it is easy to first think that he is cheating on the diet, but I don't believe this to be the case. I've watched him, and he is very careful. He was in daycare (same as last summer) for four days per week and only ate what I packed for him. I've talked with his teachers and they said that he frequently washed hands before eating (I verified the soap was gluten-free yesterday) and he kept to himself during meals often eating with his lunchbox on his lap. He also tried to avoid areas where he would be near crumbs. He took swimming lessons this summer where he could potentially swallow water that people have been in after eating gluten (but also did this last summer).

I'm trying to figure out what may have changed in his diet over the past three months (we've kept a list) and was wondering if anyone saw anything that might be suspect.

1. Rice Chex (all boxes have said Gluten Free and has been eating frequently since June)

2. Kraft Cheese Powder (in the canister, read label, and only eaten 3 times)

3. Gatorade (called company and was told gluten-free)

4. Vitaballs (says free of wheat and gluten on package)

5. Kraft 2% cheese sticks (read label)

6. Lays Staks (says naturally free of gluten on canister)

7. Diet Coke (one can per week on average)

8. Changed 100% cornstarch brand from "Argo" to "Cream"

9. Leapin Lemurs cereal (Envirokids and said gluten free on box)

10. Hormel Pepperoni (said gluten free on package)

11. Changed brand of frozen chicken breasts (only said phosphates added on the package, and did not mention broth)

12. Yoplait Fizzix Yogurt (has eaten Yoplait Gogurt and Trix flavored, Fizzix seems to be the same with added carbon dioxide)

13. Wet Ones Wet Wipes (called company and was told gluten free).

If anyone has any ideas, I would greatly appreciate them. This is quite a mystery. Thanks!

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dollamasgetceliac? Explorer
dollamasgetceliac?
Posted

Have you considered the Chalk,Plydo,Paint Crayons etc

missy'smom Collaborator
missy'smom
Posted

You may want to consider contacting the companies and asking if those products are manufactured on shared lines. Even with "specialty" gluten-free products that are labeled gluten-free, some are made on shared lines and they say that they are carefully cleaned and some even tested to be less than 5 ppm, some of us still clearly react to them so there is some cross-contamination happening. I personally feel that this is more of a concern with dry products.

GFM Apprentice
GFM
Posted
  • Author

Thanks for the suggestions. I've been calling companies and rechecking everything. Sometimes it's so hard to get a straight answer out of anyone. I don't think it should be so difficult to say if a product is produced on dedicated lines or a dedicated facility, but that's just me. Also, there's really not much if any arts and crafts projects in his room at daycare. The boys are much more interested when not on field trips to be hanging out together playing Nintendo DS. I suppose there could be some cross contamination issues there, but I don't think he's putting his hands in his mouth.

I got the repeat EMA blood test results this morning. Thankfully, the numbers came down to 1:1,280 from 1:10,240 only 9 days prior. This opens up a whole new batch of questions of course which I can't get answered from the doctors office. Since this is so individualized, I wonder if there even are concrete answers as to how quickly these numbers can go up and down and how much gluten is needed to cause it. Anyway, we were referred to the dietician again. I'm not expecting much there, but we'll see.

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