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. - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

    2. - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

    3. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    4. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    5. - trents replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

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

    • Total Members
      132,902
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      I shop a fair bit with Azure Standard. I bought Teff flour there and like it. they have a lot of items on your list but probably no soy flour, at least not by that name. https://www.azurestandard.com/shop/product/food/flour/teff/brown/teff-flour-brown-unifine-gluten-free/11211?package=FL294 As mentioned in another answer, Palouse is a high quality brand for dry beans, peas and other stuff. I buy some foods on your list from Rani. I've been happy with their products. https://ranibrand.com/ Azure and Rani often use terms that skirt around explicit "gluten free". I've contacted both of them and gained some comfort but it's always hard to be certain. FWIW, my IgA antibody levels are very low now, (after including their foods in my diet) so it appears I am being successful at avoiding gluten. 
    • Aretaeus Cappadocia
      fwiw, I add nutritional yeast to some of my recipes. since going gluten free I eat almost no processed foods but I imagine you could sprinkle yeast on top.
    • knitty kitty
      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
×
×
  • 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.