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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.