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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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    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
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      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
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