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I Know This Is Completely Off Topic Sry

davidsmomceliac12

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davidsmomceliac12 Newbie
davidsmomceliac12
Posted

HI I am very new to this ( not the disease the site) i have a 12 year old son who has celiac for 2 years now and we are still not getting better. he is better than he was but is now starting to go back down hill.he is getting sick all the time and i think it has something to do with school. now i know what your thinking maybe he's faking because he doesn't want to go to school but for those of you who are symptomatic you know you can't fake this even if you tried. then i thought well maybe he is seeking food and his response to that was "you think i would do this to myself on purpose" needless to say his reactions are pretty extreme. so on to my question i found out paper is made up of 40% wheat pulp (read it somewhere on line) IS IT POSSIBLE PAPER IS MAKING HIM SICK AND IF SO WHAT ABOUT THE MILLION OTHER PRODUCTS WE DON'T EAT THAT CONTAIN GLUTEN. see the doctors say if he is touch sensitive then we have to return to mayo in minn. i am in mi. right now. that would cost us thousands and i just DON'T WANNA so please it you can help me i would greatly appreciate it. https://www.celiac.com/public/style_emoticons/default/smile.gif

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Dixiebell Contributor
Dixiebell
Posted

Welcome to the forum!

I have not heard that about paper.

Does your son get his levels tested regularly to make sure they are going down? I believe this is how Dr.s check to see if you are compliant with the gluten-free diet. This might be a good way to monitor him.

Something to consider, is he eating a lot of processed gluten-free foods? It might be a good idea to cut those out for a while to see if he gets better. Dairy also can be a problem for some.

Does the rest of the family eat gluten? Does he have his own cookware, utensils, toaster etc.? He could possibly be getting cross contaimination (CC) at home or school.

Free-CountryGirl Apprentice
Free-CountryGirl
Posted

I haven't heard of paper ever making someone sick. I agree with Dixiebell, check thoroughly to make sure he is in no way getting cross contamination. Does he wash his hands before he eats at school? Does he eat food that has directly touched a glutened counter? Things like that. Also, have you tested for other food intolerances? I have celiacs and a soy allergy, and my soy symptoms are very very similar to a glutening, just not as severe typically. Try cutting out soy for a few weeks and see how he does.

kareng Grand Master
kareng
Posted

If paper was a gluten threat, I think we would have been warned about it by all the Celiac experts like Dr Green and the various Celiac centers. Besides, if he had some weird paper with wheat seeds in it, is he eating it? Would love to the source of your claim. Please.

Skylark Collaborator
Skylark
Posted

Paper will not make him sick unless he is eating it, nor will touching things around school. How well does he understand how to stay gluten-free? Is it possible he's eating foods other kids offer him thinking they are gluten-free and getting glutened by mistake? He needs to be eating only food you pack every single day, washing his hands before he eats, and not setting his food on the cafeteria table where there can be crumbs until you get things sorted out. Put a clean cloth napkin in his lunch for him to set on the table and keep his food free of CC.

At home, you may need to take the whole family gluten-free. Sometimes there are too many crumbs and traces of gluten in a normal kitchen for celiacs. At a bare minimum, stop bringing flour into your house and make sure you are very careful with breads and cereal. He should have separate condiments, and you need a gluten-free cutting board for his food.

mommida Enthusiast
mommida
Posted

I have seen how kids at school eat lunch. Sometimes they are so crowded they are bumping elbows. Some people don't know how to respect personal boundary lines and lean over others bodies. Some people can't talk without moving their hands, even if they are holding a samdwich.

My daughter was seeming to have gluten reactions. She was just getting sicker and I was losing my mind trying to hunt down hidden gluten sources. Finally she was diagnosed with Eosinophilic Esophagitus. So I would advice you to get back to a ped. gastro. and start keeping a food journal to see if it is another food intolerance, allergy, or other reaction.

We are using a Public Charter Cyber School to adjust to her illness and the need for her to avoid "trigger food" cross contamination. You can do a search for your state's availability for cyber school if that can work with your family situation.

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    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

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