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GFM Apprentice

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

Have you considered the Chalk,Plydo,Paint Crayons etc

missy'smom Collaborator

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

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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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