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Gluten-Free Celiac Disease Forum at Celiac.com (Home) > Celiac Disease Gluten-Free Diet Forum at Celiac.com > Celiac Disease - Teenagers Only Section
It's Karin with an I
Hey guys,

My name is Karin, and I'm a senior in high school. I'm doing my senior graduation project on the emotional, physical, and social affects of diagnosed teenagers. I need testimonies for you guys; you can be a diagnosed teenager now, or an adult that was a Celiac as a teenager.

You can do any or all of the following topics, just label which are which. Please also include your first name, state or country, diagnosed age, and current age.

Here's what I'm looking for:
-What were you thinking when you were diagnosed?
-How did you react when you heard?
-How did you family react? What were some of their responses?
-What sort of tips or advice do offer for other teenagers who are just now being diagnosed?
-What are some horror stories that you've experiences while being a Celiac?
-How do you handle dating being a Celiac?
-"Why me?"/"Why now?" stories.
-How did you come to realize that having celiac disease was not the end of the world?
-How did you tell your friends? How did they react?
-Tell me a time that you cheated, if you had, or a time where you wanted to.
-Tell me a time where you friends have tried to get you to cheat.
-Come up with your own question! biggrin.gif


If you guys could make these a literate as possible, that would make my life A LOT easier. Use complete, concise sentences that get your point across quickly (I don't have that much space); I can't use yes or no answers. smile.gif All of your responses should be some sort of life experience where you can tell about a time.
For example:
What were you thinking when you diagnosed?
"I was diagnosed at fourteen and bound for high school. I could never fathom the idea of contracting an intolerance to gluten. I was heart broken; devastated. An emotional train wrecked teenager, I was angry at my parents, my friends, God, and myself."

You good? Any questions? I'll be happy to answer them! biggrin.gif

Thank you all,
Karin

P.S. Look forward to the final .pdf file that I will be posting as soon as I finish. All of these testimonies will be included in my Celiac Disease Survival Guide. smile.gif
HAK1031
Glad to help! And glad to procrastinate on my own hw smile.gif

-What were you thinking when you were diagnosed?
I was relieved to find out why I had been sick, and amazed to find out that all these random problems (broken bones left and right, constant sinus infections, etc.) I had had since I was a little kid were all connected, and all so easily resolved. I mourned the loss of gluten a little, but my brother is on the diet (though he's older, and I never lived with him while he was on it) and my dad and cousins have severe food allergies, so I knew that life goes on with restrictions.

-How did you react when you heard?
I was actually excited that a doctor was finally listening to me and I wasn't crazy. I really wasn't all that sad.

-How did you family react? What were some of their responses?Well, my dad is used to all of this due to SEVERE lactose intolerance (so much that CC bothers him, but it's not an allergy, it really is lactose) so he was just eager to be supportive and whip out the credit card at whole foods lol. My mom didn't think it was too big of a deal either, and the two of us collaborated to come up with easy dinners. She's gluten-free now too. My stepmother, however, was a different story. Having just married my father a few years ago, she doesn't know much about food allergies, and I think she finds cooking for me stressful. She doesn't understand all of the nuances of the diet yet either.

-What sort of tips or advice do offer for other teenagers who are just now being diagnosed?
Life goes on. Eat to live, don't live to eat. There is a substitute for all of your favorites, I promise, and cheating just isn't worth it. Be open with your friends and let them try your food, and they will be less weirded out. My friends are SUPER supportive and that is the most helpful thing for me.

-What are some horror stories that you've experiences while being a Celiac?
Being sick the day before thanksgiving was not fun- I was CC'd at a family brunch, and had to drive home 2 hours feeling awful. Oh, and having a sip of my friend's hot chocolate and then finding out it was the milky way flavor ohmy.gif and then having dress rehearsal for pride and prejudice and trying to squeeze my super bloated stomach into petticoats. But I've been pretty fortunate so far, I haven't had anythign that bad.

-How do you handle dating being a Celiac?
Haven't had that experience yet, was only DXed in the fall smile.gif but I would imagine suggesting a safe restaurant (or somethign not food related at all), ie sushi or outback, and being open about it. I don't want to come across as too psychotic, but you do hafta be kinda anal about this stuff. If he can't deal with it, too bad, my health is more important.

-"Why me?"/"Why now?" stories.
My friends, though great 99% of the time, occasionally joke about it and rub the goodness of their gluteny foods in my face. Or at parties when I have to skip the cake I feel that. AN once in a while I just get kinda down about it. But never anything so bad.

-How did you come to realize that having celiac disease was not the end of the world?When I talked to one of my really close friends who has it, and I realize dhow much better I felt gluten-free...and tried yummy substitutes.

-How did you tell your friends? How did they react?
They asked after I had half a billion doctor's appts and blood draws, and I just explained it openly. They were a little weirded out at first, but they soon got over it. And some of my friends already knew about it because of my other friend. Either way, they are cool with it now, though I don't know how much they totally understand. But they are good about giving me ingredients to read if they give me food or anything like that (we had a gluten-free taco night at my friend's house last week...CC free, and delicious!)

-Tell me a time that you cheated, if you had, or a time where you wanted to.
During Hell Week (the week before the show where we have rehearsal from 2PM until 8PM) for the Wiz, the smell of the chinese food and everyone's crackers and stuff was driving me nuts. This was when I was first diagnosed. When everyone was out of the dressing room, I "sampled". That was the last time I ever willingly ate gluten.

-Tell me a time where you friends have tried to get you to cheat.
They haven't smile.gif

As far as anything else, though celiac made me different, it made me less different than missing school all of the time because I was sick. With celiac, I seem perfectly normal, until you eat with me lol! And even then people often don't catch on. When I was sick, people thought I was a drama queen or a hypochondriac. Now I'm much healthier, and most of the other disorders I have associated with celiac (endometriosis, hypoglycemia, allergies, asthma etc.) are well controlled and don't pose much of a problem
nikky
Im nikky, im 15 and i was diagnosed on the 4 December 2007 at the age of 14 (my birthday is on the 26 of december). I live in Wales UK and am happy to help

-what were you thinking when you were diagnosed?

How on earth am i going to explain this to my freinds if they dont even understand what anemia is?

-How did you react when you heard?

I was glad that i finnaly had an explination for the anemia and that i was lucky that mydoctor had bothered to investigate the anemia and not to just say "oh you a teenage girl your going to get anemia, live with it. " I was also a little surprised

-How did you family react? What were some of their responses?
My mom said " you can cry if you want to" (which i didnt). All of my family have been really supportive but we are having trouble getting my dad to get tested ( he hates needles). None of my family has any kind of allergy or intolerance (although they do have other illnesses, i wont go into detail here unless you want me to). My mom and dad are both really amazing cooks so that really helps.


-What sort of tips or advice do offer for other teenagers who are just now being diagnosed?

Dont panic, and remember that although its a life long condition celiac disease can be managed. Remember that there are other people out there that know how you feel, talk to them, it makes the world seem a much nicer place.

-What are some horror stories that you've experiences while being a Celiac?

I accidently ate a chocolate bar with barley malt extract in it.. I had my worst reaction ever .. headeache, nausea, stomach cramps and a high temperature.

-How do you handle dating being a Celiac?

i havent come across that yet.. but id be upfront about it, and suggest we do something that doesnt involve food, at least until we got to know each other. If he cant deal with me having coeliac then its bye bye baby.

-"Why me?"/"Why now?" stories.

I was diagnosed about 2 weeks before my birthday and we always have a house party .. not being able to have a chocolate birthday cake was a bit of a blow.. but my mom made me a gluten-free one which tasted really good. Also i hate it when people at school forget and ask me if i want a cookie.

-How did you come to realize that having celiac disease was not the end of the world?

I looked in all the stores and found that there were alternatives.. and i found out that it wasnt as rare as my GP made out.

-How did you tell your friends? How did they react?

I got straight to the point in a language they understand, in other words i told them i couldnt have anything with wheat barley rye or oats.. i did mention gluten and the effects but i think it went over their heads.

mostly they were horrified at the thought of a life with out soft batch cookies, one was really confused and now checks everything, and one vowed never to eat muffins in front of me again .. although that didnt last very long.

-Tell me a time that you cheated, if you had, or a time where you wanted to.

I really wanted to cheat on the weekend me and my freind went into town and we walked past a chinease.. it smelt devine but i resisted temptation.

-Tell me a time where you friends have tried to get you to cheat.
They havent .. yet.



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