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To Tell Or Not To Tell . . .

stargirl

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blueangel68 Rookie
blueangel68
Posted

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
x-tina
Posted

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
x-tina
Posted
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
Liz92
Posted

: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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      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
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      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
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