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To Tell Or Not To Tell . . .


stargirl

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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...

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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

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    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
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    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
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