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    Do you have questions about celiac disease or the gluten-free diet?

elfkin

Trying To Figure All Of This Out

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I have spent a lot of time reading these posts and I am so grateful for the info., but I have new questions. My 2 yr old has celiac, my 6 yr old had a neg. blood test. Does she need periodic new testing? Am I to understand that it can develope at any time? My husband has on-going IBS and viseral (sp?) hypersensitivity that causes us a lot of grief. He is often in a lot of pain. He had a blood test and an endoscopy, they said he doesn't have celiac. Could this be false?

On a seperate issue . .

Do I need to buy new knives, pots, etc.?! I have been washing them between gluten and gluten-free foods. Is this not okay? Does the dishwasher de-gluten things? Does hand sanitizer, wipes, or hand washing de-gluten your hands?

Anxious for answers! Thanks so much,

Laura

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Hi again :)

Periodic testing of your 6 yr old may be a good idea. Some people like to run the gene test, and then if she doesn't carry the known gene, you could theoretically not test her anymore.

Your dh may want to try the diet anyway. 12% of the US population is gluten intolerant, but only 1% has celiac. Given that the diet is helping your 2 yr old, it may help him as well. He could always try it for a month and see what happens. Or, he could have a false negative result.

Anything metal or plastic that goes in the dishwasher should be ok. Pasta colanders are NOT ok to share, though, as those little holes are impossible to really clean. Wood utensils and cast iron should probably be replaced. Pots and pans depend on if you feel they really get clean. If yours are old and have tiny holes or scrapes it's time to replace them. Anything teflon or nonstick should be replaced and not shared at all with gluten foods. Those get tiny (and not so tiny) nicks that food can hide in.

Hand sanitizer does nothing to counteract gluten. It must be washed off with soap and water. I wouldn't depend on wipes (and make sure they're gluten-free).

Hope that helps,

Merika

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Thank you so much for responding. That is very helpful. I know he is getting gluten contamination with the frequency of his runny diapers. I was frustrated trying to figure out what we were doing wrong. I now have a few places to start! Thanks for the other response too. We haven't had him in nursery or anything for awhile. I tried staying with him a time or two, but goldfish cracker crumbs were everywhere! Now he sits with us in church and one of us takes turns carrying him out when he gets fidgety. I just wondered if we were being paranoid. Anytime we have tried the group thing for him, he immediatly gets sick. It is a relief to think that it is a legitimate concern and that I am not crazy! :D

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Guest nini

kids are messy by their very nature! anytime kids are together, especially where snacks are served, there is going to be the risk of cross contamination. my daughter was 3 when we put her on the gluten free diet and she was in daycare at the time... it CAN be done... I lucked out and had a daycare where the workers were extremely vigilant and willing to work with me to figure out where she kept getting contaminated from. one area was playdough. playdough contains wheat and it gets EVERYWHERE... another time she swiped an oreo from another child and ate a bite before the teacher made a mad dash across the room and snatched it from her! The daycare let me supply them with a good selection of gluten-free foods that they could fix that would be close enough to what the other kids were eating. They gave me a shelf in the pantry and in the freezer and they would let me know when supplies were getting low.

all this to say, it can be done with the cooperation of others. it may not be worth it in a nursery setting at church because of it being only once a week... what I did for my daughter at church was just sent her a bag with her own snacks and made them explicitely aware NOT to feed her anything that was not in her bag. And I also warned them about crumbs and hand washing and keeping the tables clean. fortunately my daughter was aware enough of what gluten did to her (and she did NOT want to feel that way again) that she was extra cautious about taking something that was offered to her. even if it was out of her bag she would ask if it was gluten free! they would tell her "your mommy packed this in the bag for you, it's safe" only then would she take it!

She's in kindergarten now and while I worry a lot about her getting exposed at school, I think I put the fear of God into her teacher about what would happen if she gets glutened (she will get a very bloated painful tummy, diarrhea, vomiting, possibly hives, and it will definitely affect her mood for days) so her teacher has started keeping plastic gloves in the class for projects involving wheat products. She does try to inform me everytime they are going to do something with food, so that I can send in an alternate food product for her but sometimes she gets busy and forgets until the last minute. Thankfully my daughter has been fine.

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I know I've said this before, but your church should be the very first place to help you and the very last one you give up on! :) Our nursery, preschool, and elementary programs are vigilant in providing snacks that are allergen-free for everybody -- no worries about x-contamination. Our nursery parents are told to only provide a drink if they wish, no food allowed (and they are told why -- so everybody is safe). While it is a little more work, and a little explaining, we haven't had anyone object and many parents are quite impressed that we would bother, even if it isn't their kid. And usually these kids don't actually need to be eating! There are better ways to entertain than food!

Talk to your church workers about the contamination issue. I cried the day my son's teacher brought fruit for a snack, instead of donuts, I was so happy!

joanna

(who works for a church, by the way)

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Thank you for all of your input. This community has been an amazing help to me!

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