15 W/ Celiac, And It's Just Getting Harder

[Sophie]

HI!

I'm fifteen and I've been diagnosed for 12 years. I thought that by this point everything would be easy, but it's just been getting harder. I keep cheating or almost cheating and then I feel guilty about it. None of my friends understand it, they really enjoy waving bread or pizza in front of my face and going "glutenglutengluten" (or actually gluttengluttenglutten because I can never get them to pronounce it right. They also keep giving me annoyed looks about it when they want to go out to eat and I can't. Also, when my teachers bring in food and I can't eat it I always want to say "hello, theres somebody here who can't eat that, why are you doing this to me?" but whenever I say something, I get death glares from my classmates. I'm used to being the odd one out by now, but it's just getting so much harder as I get older.

I was just wondering if anybody else had the same problems.

-Sophie

[RiceGuy]

Sorry to hear you are having a hard time. If it helps you any, I've been getting quite a bit of trouble from my own family. They have never understood or accepted my dietary necessities, as if it's all in my mind or something.

The thing that worries me about what you have said is the cheating part. You'll never truly be fully recovered and free of symptoms unless 100% gluten-free.

As for the taunting, my first thought is to fight fire with fire. Get yourself some of the delicious gluten-free treats, and eat those in front of your friends. The more aromatic the better. Eat like a whole pizza or chocolate cake, or a bunch of cookies/brownies/donuts/candy bars/ice cream/etc. Whatever they like. They will start out indifferent, but the smell and appearence will get to them as it does to you.

You know how your friends are. I don't, but one thing I do know is that their behavior is immature. You'll find as time goes by, that your true friends will stick by you. The others will eventually drift away.

Hope this helps you.

[NYCisTHEplaceTObe]

you have a lot of tolerance to put up with friends like those. you need to sit down and have a serious talk about it. you need to explain how harmful gluten really is to you. they may not realize that they are hurting you this badly. they really need to grow up and get over it. and Rice Guy is right, bring in some really, really good food, make them jealous! if they don't understand this major issue in your life then they really are not true friends. i have had a lot of experience in this area, not neccsarily with gluten b/c we didn't know at the time, but with a lot of other health issue. when all was said and done i only talk to one girl from my town after i graduated. the friends i have made at college in the past three are so great and so understanding about everything. i just hadto make it clear that these are my issues and yes it is hard not to order pizza with them on friday night, but i would rather sit and watch them eat it than cheat and get sick. if you ever want to talk feel free to instant message me: thecatspajamas14

i have had a lot of experience in this area and it always helps to have someone to talk too. good luck in everything!

amy

[fisharefriendsnotfood]

HI!

I'm fifteen and I've been diagnosed for 12 years. I thought that by this point everything would be easy, but it's just been getting harder. I keep cheating or almost cheating and then I feel guilty about it. None of my friends understand it, they really enjoy waving bread or pizza in front of my face and going "glutenglutengluten" (or actually gluttengluttenglutten because I can never get them to pronounce it right. They also keep giving me annoyed looks about it when they want to go out to eat and I can't. Also, when my teachers bring in food and I can't eat it I always want to say "hello, theres somebody here who can't eat that, why are you doing this to me?" but whenever I say something, I get death glares from my classmates. I'm used to being the odd one out by now, but it's just getting so much harder as I get older.

I was just wondering if anybody else had the same problems.

-Sophie

Hi Sophie. I'm 14 years old and have also been diagnosed for 12 years, and I'm in the same position as you except for a few big differences:

1. I never cheat;

2. My friends don't wave bread in my face (flying crumbs...)

3. For some reason I am not bothered at all by teachers bringing in food;

4. And, I don't feel like the odd one out.

Don't cheat. Want to know why? Because then you'll know exactly what the food tastes like, and you'll crave it and want it whenever your friends eat it, and be inclined to cheat more. I have never cheated in my life, and I really don't want to. Think about it. If you just moved to an exotic country and they're eating a brown blob (like chocolate cake can look like), would you crave it? No, you wouldn't, because you don't know what it tastes like. Just an example.

Second of all, DON'T LET YOUR FRIENDS WAVE BREAD IN YOUR FACE FOR TWO REASONS. One, flying crumbs can fly into your mouth or on your face or something. Two, if it bothers you, why should they be doing it? It's like going up to your friend and going, "HA HA I'm going to Florida on vacation this year and YOU'RE NOT! Hahahahahahaha!" You wouldn't do that, would you? Exactly. Tell them it bothers you and why. But don't get mad. If they keep doing it, feel free to get mad.

Don't get bothered by teachers bringing in food. They are trying to be nice. And they are! They don't know you can't eat it. Even if you tell them of your Celiac, they don't know about gluten and they may mean well but probably won't remember all the time or do it right. My teacher brought it food a week or two ago, and I just didn't eat it. That's all. I passed the box of cookies onto the next person. Just think about it, they're eating extra sugar and you're not. Good for you. (Seriously!)

Why would you feel like you're the odd one out? Do people with peanut allergies or lactose intolerance feel like they're the odd one out? No, probably not. All it restricts is your eating. Nothing else, unless you CHEAT, so you'll feel sick and may have to miss out on that party Saturday night. I still go out to eat with friends, I just eat before or, if it's not a pizza place or whatever, order a salad or something else safe. It's easy! It should be easier now!

Just think before you feel like cheating. Say to yourself, is this pizza/cake/cookie/whatever worth being sick for a week? Is it worth missing school (and spend all weekend doing homework), potential parties, shopping with friends or movies, just for a slice of pizza? No, I think, is the answer you are searching for.

Please feel free to PM me or whatever, I'd love to help you. It's also great to talk to another teenage Celiac.

Hope I helped!

-Jackie

[jerseyangel]

Jackie--As an older member, I just want to tell you how impressed I was with your advice to Sophie. What wonderful, practical, down to earth solutions you gave. I'm sure this will benefit a lot of people out there. As difficult as it can be to navigate through this Celiac journey that we're all on--it must be all the more trying for people still in school, who have to deal with this disease on top of all that. My hat is off to you!

[mightymorg]

Ditto what Jerseyangel said! Jackie, you know what you're talking about, and it shows.

It's amazing how many ADULTS aren't even as rational as you are! I especially liked your analogy of cravings...people eating brown blobs.

[Guest CD_Surviver]

HI!

I'm fifteen and I've been diagnosed for 12 years. I thought that by this point everything would be easy, but it's just been getting harder. I keep cheating or almost cheating and then I feel guilty about it. None of my friends understand it, they really enjoy waving bread or pizza in front of my face and going "glutenglutengluten" (or actually gluttengluttenglutten because I can never get them to pronounce it right. They also keep giving me annoyed looks about it when they want to go out to eat and I can't. Also, when my teachers bring in food and I can't eat it I always want to say "hello, theres somebody here who can't eat that, why are you doing this to me?" but whenever I say something, I get death glares from my classmates. I'm used to being the odd one out by now, but it's just getting so much harder as I get older.

I was just wondering if anybody else had the same problems.

-Sophie

Hi Sophie,

I am 16 and i have been diagnosed since i was 6. i am also having problems with teachers not understanding that it will kill me if eat gluten and i am now having some wierd reaction to what i dont know and it is really annoying because the only thing that i eat that i have the reaction with is the glutino prezals and they are gluten free so i dont know what is going on.

lauren

[tarnalberry]

If it's any consolation, when you get older, your friends won't behave so childishly, and it will be easier to not associate with people who do behave that childishly. I know, not a lot of help right now... But yeah, they're not you're friends if they're hurting you that way.

[Rusla]

I would not consider those people friends if they are doing that to you, Sophie. Ask them if they would like stomach cancer or death from flying crumbs because that is what can happen to you with gluten. As them if they would mind drinking some arsenic. It is no different than you eating gluten.

It is hard for you but don't cheat. You know, there are things I miss but I think of the pain, the dh etc. I don't want to eat gluten again for anything. '

[celiac3270]

Hello...

I'm nearly 15 and I was diagnosed about two years ago. I am actually really amazed that people are that mean. I've had one run-in an with immature moron who flicked crumbs at me (we don't go to the same school anymore), but for the most part, I've found that people are really understanding. Then again, the general consensus seems to be that males are much more understanding (or maybe apathetic?) about people having it, whereas girls tend to be really mean-- I go to an all boys school.

I'm pretty similar to Jackie wih regards to her numbered responses: (1) I, too, have never cheated or wanted to. I know what the food tastes like, but it's not worth getting sick for a slice of pizza or fitting in. (2) My friends do not wave bread in my face, and furthermore, actually ask where we could go that I would also be able to find something to eat. (3) I also don't really care if teachers (or other students) bring in food. There were donuts a few days ago, but I know I'm not going to eat them, so as long as kids keep crumbs to themselves (as they do), I don't really mind. The teachers aren't trying to make you feel left out--it's well intended. (4) While it's easy to slip into the role of being the odd one out, don't let it happen. It's lonely--try to get people to accomodate to you if you're going to eat (or avoid eating situations altogether). The third option is just to go with them and not eat. You can still drink a Coke and enjoy the company.

PMs/e-mails welcome

-celiac3270

[Guest CD_Surviver]

We just had a food day in biology yesterday and the teacher really understands how i feel so she had me go get a juice out of the cafiteria on her tab. that was really nice of her. cause we had pizza and cookie dough ice cream b/c we just finished a lab about lactose.

[fisharefriendsnotfood]

Jackie--As an older member, I just want to tell you how impressed I was with your advice to Sophie. What wonderful, practical, down to earth solutions you gave. I'm sure this will benefit a lot of people out there. As difficult as it can be to navigate through this Celiac journey that we're all on--it must be all the more trying for people still in school, who have to deal with this disease on top of all that. My hat is off to you!

Ditto what Jerseyangel said! Jackie, you know what you're talking about, and it shows.

It's amazing how many ADULTS aren't even as rational as you are! I especially liked your analogy of cravings...people eating brown blobs.

Awww! I'm so touched . Thanks so much. I hope I can help more people.

I like thinking up analogies hahaha.

-Jackie

[melly]

i know what you mean i was diagnosed at the end of 6th gradeso i dont have that much experence but im 13 and it has been so hard not only do my teachers bring in food but im taking home ec half of the stuff we make i like but cant have and my sister is always saying melly get away gluten and stuff inow what you mean and this is my frist ful school year so idont really know about the expeirience part but o well

[Nancym]

Jackie, you are to be commended! You're more grown up than a lot of grown-ups I know.

The bad news is, it doesn't get that much easier as you get older. People just don't understand or they think you're making it up or a little bit won't hurt. You can't really make them understand so it is best to not really even try. You know what you have to do and why and that is really the most important part.

One thing though, I find I really start to get razzed by people when I talk the gluten thing. It seems like the harder you try to make people understand, the more resistant they are to understanding. It is just the way many people are. So really, the less you talk about it to people who don't have the issue, probably the less you'll hear their obnoxious reactions. This might be one matter you should only share with people you can trust to listen and understand.

[flagbabyds]

Hi, I am 15 and I have been diagnosed for 13 years.

First of all, you shouldn't cheat becasue it will make you sick, but also it will just make you more prone to getting other sicknesses. Would you really like to develop diabetes and thyroid problems, and many more that could make you more miserable? Also like what Jackie said, it will just make you want it more. Eating in once and then being sick for a week, will make you misearble, but then you will know how good it tastes, and will just want more of it. This is why I have never cheated, I just smell the really good smelling stuff that other people eat, and think that is what it tastes like, so I can taste it by the smell from far away so that I won't get any posioning and I won't get sick. You always have to be really far away when you are doing this, but still be able to smell the really good smelling stuff. If you call people who make fun of you your friends, then you shouldn't be frineds with them. They are not acting like real friends should. My friends are very considerate, and had some trouble grasping the concept when we first became friends, but now we always go out to eat where they know I can get something good to eat too. Your "frieds" should be nicer to you than they are, and you shold tell them to stop doing that because you could get really sick. Just yell at them, and they are more likely to stop doing whatever they were doing, becasue they are scared that you are going to get mad again. This worked for me all the time when people were making fun of my food in middle school, I would just get really pissed at them, and they would stop doing whatever they were doing that was making me mad.

Now about the food in class thing... I have something called a 504 plan, so the teachers know what my dietary restrictions are, it expains everything they need to know. And this also prohibits them from bringing something into school without them knowing what you can eat and bringing smoething for you too. Like when we had our AP Chem final 3 weeks ago, my teacher brought in doughnuts for everyone else, and found some gluten-free cookies that she knew I could have, and brought them in for me. This way, she knows that I won't feel left out, and I get a good cookie. When teachers get a 504 plan in the beginning of the year, they know that they have to deal with this as seriously as a deathly peanut allergy. It is under state law that hey cannot bring anything into class that you can't have, and they can't put you in any danger for bringing in food that you can't have. 504 plans aslo alert your teachers to your needs, so they are more aware, becasuse some teachers don't listen, but if the school presents a 504 plan to the teacher, they have to follow it.

I have a lot of experience with stuff like theis, because other than celiac disease, I also have a wheat alergy, so I really do have to be careful about not ingesting anything.

My school is really good about my dietart needs, and they are really helpful. The only problems I run into with teachers is when we change at the semester, and the new teacher hasn't gone through all of the paper work on all the students. And yes I got to public school, so this is possible not only in private schools.

You shouldn't feel like the odd one out. If you make some new friends and start off telling them what you dietary needs are, and they are really nice about it, then you should fit in just fine. When you go out to food with friends, enjoy hanging out with your firends and not worrying about tests and school, and just have fun, and eat only what you know is safe. Maybe reccomend a place to eat where you know you can get something, or the place you are going, just talk to the waiter before and see what you could get, and then you don't have to talk during the meal and making sure that it is gluten-free. I always call ahead and talk to the chef, and then he tells me what I can get off the menu, and then I just order that, and no one thinks anything of it.

Just enjoy being able to feel good and not be sick all the time like you would be if you were eating gluten.

If you want to talk email me celiacmolly08@mac.com or send me an IM missmolly3001

Never ever think of cheating again!

[fisharefriendsnotfood]

If you make some new friends and start off telling them what you dietary needs are, and they are really nice about it, then you should fit in just fine. When you go out to food with friends, enjoy hanging out with your firends and not worrying about tests and school, and just have fun, and eat only what you know is safe. Maybe reccomend a place to eat where you know you can get something, or the place you are going, just talk to the waiter before and see what you could get, and then you don't have to talk during the meal and making sure that it is gluten-free. I always call ahead and talk to the chef, and then he tells me what I can get off the menu, and then I just order that, and no one thinks anything of it.

Just enjoy being able to feel good and not be sick all the time like you would be if you were eating gluten.

If you want to talk email me celiacmolly08@mac.com or send me an IM missmolly3001

Never ever think of cheating again!

Exactly. Some of my friends don't even know I have Celiac lol. Remember to focus on other things other that this.

Stay happy!

-Jackie

[celiac sucks]

Hi, my name is maggie and I have had celiac for 2 years, Ive just turned 16 and I am having the worst time trying to stay gluten free. Now that I drive Im on my own more and Ill stop and get a sandwich and I wont get sick...which is weird cus I always used to get sick even when I got a little gluten. Anyways I know that the gluten is hurting my body but its soo hard! I hate this disease! Its worse when Im out with friends and they are eating a mudslide its soo hard not to eat some! I used to be really good with my diet but now it just seems like Im fallin apart and I need some adivce! Thanks!

[celiac3270]

Few of my friends know I have celiac. I low-key it... they know I have dietary restrictions due to some allergy-like thing, but I have avoided the term "Celiac disease"--the ending, "disease," is something I don't want to have to explain.

Hi, my name is maggie and I have had celiac for 2 years, Ive just turned 16 and I am having the worst time trying to stay gluten free. Now that I drive Im on my own more and Ill stop and get a sandwich and I wont get sick...which is weird cus I always used to get sick even when I got a little gluten. Anyways I know that the gluten is hurting my body but its soo hard! I hate this disease! Its worse when Im out with friends and they are eating a mudslide its soo hard not to eat some! I used to be really good with my diet but now it just seems like Im fallin apart and I need some adivce! Thanks!

I guess I'll divide up my reply to this into 1) Staying gluten-free, and 2) Not getting sick from gluten:

1) The more freedom you have, the more this becomes your disease, your responsibility, your decisions. Since your parents aren't there to keep you honest, you have to do it to yourself. It's basically about the will [power] to be healthy and not give in and have a bite of pizza at the expense of your nutrition, intestinal health, immune system, and overall well being. Oftentimes this will power not to eat the gluten comes from the symptomatic repercussions that you feel after eating gluten. If you don't have this, I suppose it's harder: you have to look ahead to the long-term consequences. If you cheat once a month, or so, it's the equivalent of not even following the diet. And just because you have one bite of ____ instead of the entire ______, doesn't mean that it does less damage. Once the immune response is triggered, it's done.... (don't interpret this as meaning that if you mess up on the diet accidentally, you should indulge, though).

2) I started to go into this in #1, but wanted to mention one more term quickly. The period of adolesence is often known as the "honeymoon period," and is the reason people used to think you grew out of celiac. Celiacs often get sick and then during puberty, may find that they have no outward symptoms, promting them to think they're cured (or know they're not, but not care since they don't feel the repercussions). Often symptoms will return later in life when gluten is ingested. Also remember that you may not feel the damage the first time you get sick if you've healed... in other words, it may take a few mess-ups for you to start feeling the outward symptoms, even if villous damage has been occuring from the start.

-celiac3270