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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.