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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
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • 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. 
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