Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Know This Is Completely Off Topic Sry


davidsmomceliac12

Recommended Posts

davidsmomceliac12 Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Dixiebell Contributor

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

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

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

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

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Barilla gluten free pasta

    2. - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Reverse Osmosis (RO) Water

    3. - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

    4. - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Reverse Osmosis (RO) Water

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,446
    • Most Online (within 30 mins)
      7,748

    DH Larry
    Newest Member
    DH Larry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Colleen H
      Has anyone had a reaction to gluten free pasta ?  I made ground beef pasta and gluten free sauce and I'm having every symptom there is.  Nausea ,  constipated,   burning pins and needles, anxiety...etc   lots of pain 😞 headache 😭  Does this sound familiar?   I'm literally bed ridden.  
    • Known1
      Thank you for your reply.  I read the same thing about distilled water.  Oddly, drinking that has not caused any sort of reaction in my gut.  Nothing I can hear and feel anyway.  🤣  With that said, I have also switched over to spring water for drinking.  My traditional go to grocery store charges the exact same thing ($1.39) for a gallon of pre-bottled spring, distilled, or RO water.  The manual gallon refills of RO water have an attractive price of $0.49 per gallon, provided you use your own container.  Knowing it causes major bubble gut (and likely other issues) for me, I am avoiding all RO water moving forward.  In fact, I will gladly drink tap before RO water. Here is what Google says when searching "European study regarding reverse osmosis water". --Begin quote: European studies indicate that while reverse osmosis (RO) is highly effective at removing contaminants, it strips essential minerals (calcium, magnesium) and creates low-mineral, slightly acidic water.  Research suggests this may have long-term health implications, such as mineral deficiencies, while also negatively affecting the sensory quality (taste) of water. Key Findings from European Research & Reviews: Health Concerns: Epidemiological studies in Europe have associated low-mineral water consumption with increased risks of cardiovascular disease, cognitive decline, and reduced intake of essential nutrients. Mineral Depletion: RO systems can remove up to 95%+ of solutes, including minerals that are vital for health. Sensory and Quality Impact: Studies show that reducing the mineral content (TDS) of water makes it taste bitter or flat, with optimal, "fresh" taste found in water with a TDS between 190 and 350 mg/L, suggesting post-RO remineralization is necessary for better quality. Regulatory & Safety Context: While not banned, European regulations under the Drinking Water Directive emphasize the importance of mineral content, and countries like Germany often favor alternative treatment technologies that retain minerals. Industrial Application: In Europe, RO is widely accepted for industrial applications (e.g., food, beverage, pharma) due to its high purity output, but it poses challenges like membrane biofouling. Environmental Impact: RO is recognized to use more energy and waste more water (up to 15% more) compared to conventional treatment methods, raising environmental concerns in some municipalities.  Recommendations: Due to the loss of minerals, many experts recommend remineralizing RO water before drinking to improve taste and nutritional value.  --End Quote
    • knitty kitty
      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.