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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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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
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    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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