Help Needed W/ Project

[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!

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. 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!

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.

[HAK1031]

Glad to help! And glad to procrastinate on my own hw

-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 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 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

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.

[Auntie Lurlynn]

Hi, My name is Lori LYnn, I am 16 years old, was diagnosed at the age of 6 (I don't wish to diclose my home state, but it is in USA.

What were you thinking when you were diagnose?

I was actually really glad that I had finally found out why I was having problems. My whole life I had really bad skin preoblems. I had huge red welps that itched like crazy, all over my body. I also had extremely dry skin. Now, I still have dry skin (that's just genes, other family members have it too) but not at all to the extent it was before I was diagnosed.

How did you react when you heard?

I really don't remeber much, but I think I remember sitting in the bathtub and my mom coming in to tell me the results and I started shouting, "Yeah, I have Celiac Disease!" Like I said, I was happy, not because of the disease but because it was a solution to my problem.

How did your family react? What were some of their responses?

I reallydon't remember much, it was so long ago. I know my parents were relived to find a reason for my skin condition and my size(I was very small). I really doon't know about anyone else.

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

It is going to be hard, but it gets easier each day. Read labels constantly and learn to recognize the hidden glutens. Don't be afraid about hurting peoples feelings when you don't eat something they offer. Explain to them why you can't eat it, and if they say, "Just a little bit won't hurt," tell them it will and stand your ground. If they refuse to listen, that is their problem, but be nice and polite. It's not the end of the world. Other people know how you feel, you're not the only one out there. Keep your chin up

What are some horror stories the you have experienced while being a Celiac.

My family and I ate at a new Chinese place, instead of our usual. That night I threw up so much. It was so awful, I'm nauseated just writing about it. Now, I'm afraid to eat Chinese anywhere but our usual.

How do you handle dating being a Celiac?

I don't date, so that is not a problem with me. But, when I go places with my friends, all of them know I have celiac disease, so we'll go places where we know there is something I can eat. Try to learn to recognize foods that might have gluten in them (soups, most fried things, gravy, etc.).

"Why me/Why now?" stories

I really don't have any. I was diagnosed so young that it was easier for me to adjust.

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

I never have thought it was the end of the world, but I do get discouraged sometimes. I try to remember that God never puts me in a situation that I can't handle. That really helps me to avoid cheating.

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

When you're 6 and you hear the word "disease" you think "contagious." Not all of my friends backed away from me when I told them, but a few did. I had to explain to them that they could not catch celiac disease, it's something you're born with. When I make new friends, I usually don't bring it up right after I introduce myself. When ever it does come up, they usually ask a few questions about celiac disease, what I can and can't eat, what the symptoms are, etc. Usually it is not a ig deal.

Tell me a time that you have cheated, if you have, or a time that you have really wanted to.

The first 8 years after being diagnosed, I never cheated on purpose. In the past 2 years, Ive become a little slack, but am trying to get better.

It started when my mom(who has celiac disease), my brother, and I were at Longhorn Steakhouse. My brother was eating the lucious loaf of bread, but not rubbing in how good it was. My mom and I could not resist, and the two of us cut a slice and smothere it with butter. The whole time my brother was getting on to us. It was all down hill from there. I never eat a gluten filled meal or anything like that, but I will sneak a cookie sometimes, or pinch off a piece of that fried chicken.

Tell me a time when your friends have tried to get tyou to cheat.

I am very close to most of my friends, and they are all very understanding. None of the have tried to get me to cheat, but if I cheat in fornt of them, they sometimes get on to me.

[Will The Thrill]

. Please also include your first name, state or country, diagnosed age, and current age.

Will -- diagnosed at 10 -- current age 13

-What were you thinking when you were diagnosed?

I was on these loopy pills cause of endoscopy, but the night after i was wondering how i would live my whole entire life having celiac

-How did you react when you heard?

I was actually pretty calm, because i didn't realize how hard it would be.

-How did you family react? What were some of their responses?

My mom was upset because see had it and felt it was her fault and my dad and sister didn't really care that much

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

To never cheat, because it's never worth it and you will pay the price>

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

Ummmmm i don't get the question

-How do you handle dating being a Celiac?

It's not a problem. Most of the time I go bowling or to the movies, and i haven't but if you do go out to dinner, just order gluten free. Its not a big deal at all

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

I don't get this one either

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

After a year, i started to stop craving wheat, so i started to realize things would be fine

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

To this day only my closest friends no, and they react like its no big deal and try to get me to eat wheat

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

I haven't ever cheated, but have wanted to whenever i'm angry or at a birthday/pizza party

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

Every day at school or at any party

-Come up with your own question!

-This isn't a question but like a statement

I was diagnosed on the exact day of my 10th birthday

-How long did it take for the symptoms to go away?

About two weeks of a gluten free diet.

How much wheat does it take to set you off?

A tiny amount will give me a stomach ache and a lot will make me throw up a lot

[Ashley]

Hello, I'm Ashley. I live in TN. My Dx age was 14, my current age is 17. I'll be eighteen in a few months.

-What were you thinking when you were diagnosed?

I was sort of blank. I knew it was coming, but, I really didn't want to believe it.

-How did you react when you heard?

Calmly. I just told my doctor 'okay, and thank you.'

-How did you family react? What were some of their responses?

My mother was relieved. Before I was Dxed, I was losing a ton a weight. After 4 months, I lost 70 pounds and was dealing with severe malnutrition.

-How do you handle dating being a Celiac?

I'm upfront. I won't kiss a guy after he's ate gluten and it wouldn't change for any guy. As far as going out, I sadly eat before I go 'out to eat'. Or, I'll just say I'm not hungry in certain situations. However, I cannot handle going to pizza places and I won't.

But, I've never really had a problem with it interfering with dates. Everyone around me knows that I have Celiac and very supportive.

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

After seeing kids at Vanderbilt's childern hosptial with no limbs or cancer.

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

It was about 6 months after my Dx. I had never cheated before and therefore never knew the side effects that I would have after eating gluten. Well, I slipped and ate a slice of pizza. Two hours later I was doubled over a toilet. I should have went to the ER to get my stomach pumped, but, I didn't. I didn't sleep for three days. Needless to say, I will never cheat again.