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Are You Super-Careful About Possible Cc In Packaged Foods
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My almost-7-year-old daughter (dx celiac by antibodies and biopsy) has been gluten free for about 4 months now. The stomachaches are gone and she seems somewhat happier in general. We've been careful about gluten at home and in restaurants (not that we go to many). But I'm sure she must have had some incidental contact with gluten along the way (especially at camp and school), and we've never noticed any kind of reaction.

Her doctor (highly regarded pediatric celiac disease specialist) says that most kids do fine as long as they're not actually ingesting gluten, and since she doesn't seem to be sensitive to trace amounts, not to worry too much about trying to shield her from it completely.

Given this situation, would you let her eat packaged things that say "processed in a facility that also processed wheat"? I realize it's a risk every time -- one thing might not bother her while another might set her off -- but would you at least in principle be willing to do that?

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I eat things that are made in shared facilities. (Heck, my kitchen isn't strictly gluten free, though we don't *cook* with gluten and my husband's stuff is well segregated. So my own kitchen is a mixed facility.) So I would let me daughter eat such foods.

But, I would also be aware of possible reactions and realize that some items could be contaminated and need to be eliminated if we suspected them. (Think "innocent until proven guilty".)

But this is me, and I'm also not a super sensitive celiac. Everyone has to figure out their own comfort level.

(If you've been eating in restaurants and having her go to school and camp, she's already eating things that are processed in shared facilities, I would note.)

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I try to avoid cc when ever possible. It doesn't take much for damage to be done even if there are no symptoms. I would rather buy another brand which is not made in a facility with wheat (etc) than risk it. As I see it, why take the risk (for the pleasure of the taste of a food) when I don't have to. I want my family to have the full benefit of the diet and cc will take that away.

... But that's just me.

Best wishes.

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We do some packaged foods with the " Made in facility etc... warning " it greatly depends on the company. I have called facilities and some have told me the days they do the sanitizing and which particular products are made right after that. It really depends on what else is produced in and how often and thorough the cleaning is in the facility , IMO.

I think it's mostly a trial and error based on response.

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When I met with the nutritionist when we were first diagnosed, she said to start out with "common sense" (no gluten ingredients, new toaster, etc.) and see how it goes. If the symptoms and antibodies are still high, go to the "next level" (no eating out unless it is specifically gluten-free, no "processed in a factory with wheat", etc.) The final level was just to be 100% grain free. Her advice was to be as strict as you need to be to keep the antibodies at normal levels. We happen to be pretty sensitive, so we are very strict. If we were not, I would certainly allow those foods.

Cara

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When I met with the nutritionist when we were first diagnosed, she said to start out with "common sense" (no gluten ingredients, new toaster, etc.) and see how it goes. If the symptoms and antibodies are still high, go to the "next level" (no eating out unless it is specifically gluten-free, no "processed in a factory with wheat", etc.) The final level was just to be 100% grain free. Her advice was to be as strict as you need to be to keep the antibodies at normal levels. We happen to be pretty sensitive, so we are very strict. If we were not, I would certainly allow those foods.

Cara

Thanks for sharing your nutririonist's advice. Makes a lot of sense. We haven't had our first follow-up antibodies test yet, and while I try to be very careful about what my daughter eats, I have no idea if I'm being strict enough. Your advice makes me feel better about waiting to see if our common-sense approach might enough before I drive myself crazy with worry.

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My dd has no symptoms so I'd never know. But someone here gave me this same advice when she was diagnosed. They told me that they ate if it was shared facility but not in shared equipment. I have stuck with that rule and her antibody test was back in the normal range at the 6 month mark. (And we eat out once a week).

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Thanks for sharing your nutririonist's advice. Makes a lot of sense. We haven't had our first follow-up antibodies test yet, and while I try to be very careful about what my daughter eats, I have no idea if I'm being strict enough. Your advice makes me feel better about waiting to see if our common-sense approach might enough before I drive myself crazy with worry.

That's also our situation, so I guess I was taking the same approach. She had very minor symptoms even before going gluten-free, so I can't really rely on that to tell me if she's being affected. But I need to remember that although it's nice that she doesn't have symptoms, the antibodies are really the important thing. Thanks!

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I am a super sensitive celiac and I have to be super careful to not be ill.

If I were not symptomatic, I would not be super careful. The chances of minor cross contamination causing harm in someone who is not symptomatic seem low to me. All the studies that I have read where harm was caused were with celiacs on a regular gluten containing diet.

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How do you know if an item was produced on equipment or just in the same facility? Does the packaging specify? What if the facility changes their routine, how will you know?

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Sometimes below the ingredients, it will say "made in a facility that manufacters wheat" or "processed on the same equipment". They do not have to do this by law. It is optional and I am thankful for honest companies. I am sure others do not. But I avoid same equipment when possible.

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I tried out the innocent until proven guilt route, but boy, how I regretted it. Unfortunately, no one gives a damn about the gluten free laws around here so I just stick with whole foods. It's not that hard after some time...

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    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
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    • Personally, I would ask for the full Celiac panel and see what that shows.  I mean, the full Monty, not just cherry picking testing.  On the full panel, if the tTg and the EMA come back positive, that is a diagnosis without biopsy.  This is how I was diagnosed and there is absolutely no doubt I have Celiac.  I presented with classic celiac so it was a no brainer with my blood results. If you cannot stick to the diet religiously, without cheating, unless you have a biopsy picture, then I would go on to have a biopsy.  Like your daughter, I was way too sick to have one done at the time.  They would not have agreed to use sedation because I was so anemic and malnourished and that ended that!  Good luck with whatever you decide!
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