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

To Tell Or Not To Tell . . .


stargirl

Recommended Posts

blueangel68 Rookie

hey i know this is a bit too late but i just wanna put my one idy lil cence in.

ive only had celiac disease for a few months but so far everyone that i have told still dont understand, and think that its not that bad. i hear some of my closest friends telling other people that its an allergy, which really gets me annoyed cause its alot worse than that and they just dont understand. my mother doesnt even understand how bad it is. my dietian told me that im on a strictly no gluten diet to correct my insides and then when they get better im still not supposed to have any gluten like most Cs have to but its not just food i have to stay away from there are also things like shampoo if u get it in ur mouth and swallow it and it has wheat proteins in it then its like eating a sandwhich, especially wen u use the same shampoo for months on end, but wen i told my mother that she said it was bull and that i was being silly, which really got me annoyed cause i wish i was being silly but she just couldnt understand. and so know i just dont tell her anything new i learn about cause i feel like she is gunna just critises.ov course lotions r ok to use as long as the gluten is not gunna reach the gut then we're all fine but thats not my point, my point is that even if u tell som1 u know really well and try to explain it they r neva gunna understand, the only people who will truly understand r the people who have celiac disease!!!!!

p.s srry bout da spelln mistakes and the rambling.lol

  • 1 month later...

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



Celiac.com Sponsor (A8-M):



x-tina Newbie

mostly everyone knows what i have...and that i cant eat wheat oats rye or barley...but i find it hard to tell them what happens...even tho they seem interested...i HATE it when they act all sympathetic...but i mean if they're curious..i like to tell them...

when I think about myself w/celiac..its like a different part of me...i was diagnosed when i was a baby...so i cant remember when i COULD eat gluten...anyway...as for telling people i keep it short...and only tell people who give a crap :D

anyway...i dont like to tell people what happens when i DO eat gluten...only like my direct family know's...and maybe 1 or 2 of my closest friends...

but oh well...does anybody else have to bring food w/you wherever u go...cause its like guaranteed there will be no gluten-free food where ur goin???...(ex. camp)...i feel like a walkingtalking fridge...and it annoys me SOOO Much ...or when i have to constantly ask "what's in ur...." at a restaurant...i've almost gotten to a point where i just give up and almost eat nothing when i go out....(and then people ask ...why rn't u eating anything???...grrr..it annoys me A LOT :P:D )...well....that's it for now...

x-tina Newbie
hey i know this is a bit too late but i just wanna put my one idy lil cence in.

ive only had celiac disease for a few months but so far everyone that i have told still dont understand, and think that its not that bad. i hear some of my closest friends telling other people that its an allergy, which really gets me annoyed cause its alot worse than that and they just dont understand. my mother doesnt even understand how bad it is. my dietian told me that im on a strictly no gluten diet to correct my insides and then when they get better im still not supposed to have any gluten like most Cs have to but its not just food i have to stay away from there are also things like shampoo if u get it in ur mouth and swallow it and it has wheat proteins in it then its like eating a sandwhich, especially wen u use the same shampoo for months on end, but wen i told my mother that she said it was bull and that i was being silly, which really got me annoyed cause i wish i was being silly but she just couldnt understand. and so know i just dont tell her anything new i learn about cause i feel like she is gunna just critises.ov course lotions r ok to use as long as the gluten is not gunna reach the gut then we're all fine but thats not my point, my point is that even if u tell som1 u know really well and try to explain it they r neva gunna understand, the only people who will truly understand r the people who have celiac disease!!!!!

p.s srry bout da spelln mistakes and the rambling.lol

...my teacher tried to convince me it was JUST an allergy...and i was really really mad...they try to make it seem like nothin too bad...but it IS bad.....i'm done...(i think i've whined enough for today :D )

  • 3 weeks later...
Liz92 Rookie

:huh: Yah, I think it depends on the situation. like, if someone offers youy a cookie then I would also just say no thakns but If they keep on pushing you to have it, then I would say I can't because I'm Celiac, which means I don't tolerate wheat rye barley and oats.

K, when I ate gluten I lost tons of wight, and i have always been skinny for my age, and when I stopped eating gluten I didn't gain the weight back, so people think I'm anorexic or something because I don't eat luch at school cuz it all has weat in it, instead I eat a big breakfast and a big luch after school, so when people always tell me I need to eat at luch, I tell them why I don't

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,608
    • Most Online (within 30 mins)
      7,748

    lorrasmama
    Newest Member
    lorrasmama
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.