[kera87]

Hey guys, this is my first post and I'm just wondering if anyone else out there is going though this while in college. I was diaganosed in January and was devastated at first, but I'm dealing with it as best as I can now. I'm lucky enough that I live in an apartment where I can cook my own food, but it is still hard on a daily basis. At home, it's really easy because I have a very supportive family who make sure nothing gets contaminated and my mom loves to cook new things.

However, at school it's a different story. People our age just do not understand what it is like to have to run out of class because of an attack, or not be able to have a beer (i cant tell you how many people told me they'd "die" without it), or skip out on going to a restuarant. I basically eat rice almost everyday because it is the one thing that I can eat without feeling sick right now, and my friends think its the weirdest thing and openly laugh at me. I feel really alone at school and often call my family crying because of it.

For those of you who have had celiac for a while, how long did it take for you to heal? (i'm very strict with not eating gluten, but have supposedly had it for over a year without knowing) And if anyone wants to talk and share their experiences I'm very open to it because I'd love to talk to people who actually understand. Thanks

[BRUMI1968]

Hi! I'm old (39), but am a college student with Celiac Disease. I know it's no fun on campus...at least you don't live on campus. I live at home and can make myself food to take to school, and I don't stay on campus for more than two classes at a time in any given day really, so I hardly ever have to deal with eating issues on campus. The beer thing is a bit rough - the "I'd die without it" attitude lives on in the post-college world, that's for sure. I don't drink at all, but if you do drink, you could certainly have wine. Then you'd be cosmopolitan as well.

I know what you mean about having to leave class in a rush, or fear doing that, or fear having to have a VERY bad time in the bathroom. I once sat in the last stall of the bathroom flushing every couple of minutes lord knows, and waiting to come out until class had started so the room had emptied out. I didn't want anyone putting my face to what I was doing in there.

Just so you know, Celiac Disease is covered under the Americans With Disabilities Act (or so is my understanding) and you can let your campus health office know about it, thus getting you off the hook at least with your professors. There may also be a club on your campus for folks with food allergies, or with celiac (can always start a student club for that too), or with eating issues of whatever kind. That might be a good place. Also, you might have a local celiac support group where you could meet new friends who do have some experience with it.

College is tough enough w/o these issues, I know. You'll get in the groove though, I'm sure. As to healing time, it's different for everyone. It sure seems like at first it is very up and down, highs and lows. But if you're very strict about the gluten, and watch for other food sensitivies and take it easy on yourself, it should ease up. Pretty soon, it'll be totally normal to you - and your friends will get used to it too. (Although, they'll probably forever tell you how fantastic their blue cheese on french bread is or ask you how you can live without pizza. Oh yeah, having a real tough time breathing w/o my pizza.)

[Nina12488]

I'm also a college student... living in the dorms... haha no fun at all... but yes, it is really hard. People don't understand.. and ah yes the "you can't have beer? oh my god how do you survive" is common..i've come across people who are supportive and understanding.. but some people just do not get it.. and its completely normal to feel helpless and hurt. if you ever want to talk, just let me know!

[kera87]

Wow I cant believe Celiac is covered under the disabilities act I'm definitely going to check that out. It would be a great help with being excused from classes, although I usually try not to eat before going to one. I totally relate to your bathroom story, I feel like that happens to me all the time. The worst was when I was on a bus coming back from somewhere, I thought I was going to die.

Today my friend came back from a meeting where they were having free pizza and said she didn't invite me because she felt bad, and as of right now my roommates are eating the leftovers It sucks but I just tell myself it is just food, and usually when they order it I make my own gluten free pizza that is delicious.

And with the beer thing, I've actually bought gluten free beer once that wasn't that bad. It's expensive and many many calories of course haha. I usually stick to wine or a gin & tonic type thing just to keep it simple when I'm out somewhere.

I'm definitely going to be stricter, I still eat cheetos and cooler ranch doritos (they're my pizza and chinese food replacement haha) and I bet they are not as gluten free as their website says. Thanks for the responses it makes me feel better

[taylor!!]

hey! there are a ton of people on here that are in college. i just finished my first year and it was sort of a struggle. ive been diagnosed since i was a year old so all of my friends back home pretty much knew how to deal with it.

I have an apartment and my roommates are both fairly supportive and what not, i just sort of keep my own little area of food and they know to wipe the counters after they cook and not to use my butter and peanut butter and stuff like that. I have found that it helps me to be able to bake something i can eat too, so we can all bake and what not together and im not avoiding the kitchen all the time.

As far as your friends making fun of you, that can definitely be hard, especially if you are newly diagnosed, i'll be honest and say that it doesn't get much better, but you just sort of have to learn to laugh with them, which takes time, and a lot of patience, but usually works. i have gone off on a couple friends though that felt the need to point and laugh every time they ate something with gluten in it. I just explain to them semi-nicely that it can make me very sick, even if they have never seen it and that i don't think it is really all that much of a laughing matter. But 99% of the time, i just try and laugh it off. and the beer think is completely annoying, i'm not a big drinker, but it is still so annoying, especially when they are already drunk to begin with, haha.

Definitely check out the disabilities act thing, it can come in handy i have found. and i would look into the local support group, even if it is not something that really interest you, it would be good to look into to find local stores and stuff to buy different products..which leads me to my last thing..

there are pleeeeenty of options for food other than rice, you do have to change your shopping some, and shopping might take longer, but with some trial and error, you can find awesome products that will expand your eating world again, haha. if you have any questions or anything feel free to ask!

[Laura!]

Hi!

I was diagnosed during my senior year in college, and I was really sad about it too -- I got to the point where staying home and watching reruns on MTV for 7 hours a day seemed like a better option than having to hear one more drunk frat boy tell me he'd die without beer.

BUT I just wanted to tell you that it gets better. I'm 24 now (out of college for 2 years) and I have found myself in a great group of friends who are really supportive of the celiac thing. They even helped me come up with little modifications that I can make to (beer) drinking games so that I can play too! (PM me if you want to learn more.)

Hang in there. Things can only get better.

[Tiger73549]

I'm a 20 year old Male (about a week off turning 21) and my father had Celiac's disease. I know one of the symptoms of Celiac's is malnutrition, but my dad was 6'2 and I'm 6'6 (I wouldn't characterize myself as malnourished, if you catch my drift ) . My younger sister and I had a blood test taken when I was on Spring break and we both tested positive for the disease. My sister is borderline, but apparently I have it a lot worse then she does. I am currently eating foods with gluten, but I have to go to an Internist to have more tests done. I have to say I'm not excited about it. Living in an on campus apartment with a Meal Plan is not easy for people with Celiac's. Everything that the cafe has basically has gluten in it.

I'm kind of panicking. I figure I will be on a gluten-free diet shortly and I feel like I might be stuck with Frosted Flakes and fruit to finish my Senior Year of College.

Another concern I have is about drinking. I really enjoy drinking beer, and I'm curious what liqueurs (specifically what brands) are safe for people on a gluten free diet. I heard that Rum and Vodka are generally safe, but some rum is actually flavored with gluten.

One more question, for people who were diagnosed in college, did you notice any weight-loss or weight gain once you changed your diet?

[kera87]

Hey, I'm going into my senior year as well so I understand. If your apartment has a kitchen, you'll probably need to start cooking a lot more. It's not so bad, I promise! If you have to eat at the cafeteria I'm sure you could contact the manager to set something up, they have to accomodate you. Also, if you say you live in an apartment I'm assuming that you at least have a microwave and there are tons of microwaveable meals (check out Amy's Brand). It's so overwhelming at first but there are so many foods out there. (Just not frosted flakes haha, they have gluten)

The alcohol thing sucks, I miss beer. However they make gluten free beer that I've bought, it's a little different but I got used to it. You could definitely buy that and no one would even notice. The liquor that I've heard is safe are Smirnoff, rum (ive never heard flavored ones have gluten ill have to check that out) and all wine is ok. I think whiskey is ok too but I dont really know much about dark liquor.

And I haven't noticed any change in weight. But they do say that people gain weight after changing their diet because now they are absorbing things.

Let me know if you have any more questions

[whitney728]

I'm heading into my senior year as well, and I was diagnosed at the end of my senior year of high school. I definitely agree with you about most people not understanding what you're going through - I've gotten the whole "if I couldn't have beer I would die" comment more times than I'd really care to count. The adjustment was pretty rough - I feel like a lot of my friends from home still think I can eat wheat, and I can't even tell you how many times I've been introduced to people as "this is Whitney, she can't eat bread."

It does get easier though, especially once you adjust to the diet. Not having t o be on a meal plan and being able to cook for myself really helps - I was stuck with the cafeteria freshman year, because I was diagnosed the week I had to send in my housing forms and didn't think about getting an apartment-style dorm then, and it was pretty miserable. I was sick constantly, but as soon as I had more control over what I ate, it got a lot better. It gets easier though, and eating out isn't as hard as it probably seems right now.

To answer the questions in the posts above me - Redbridge is a gluten-free beer that's manufactured by one of the mainstream companies (I'm blanking on which one at the moment) and supposedly it isn't so bad. I hadn't actually tried regular beer before I got diagnosed, so I wouldn't know the difference, but it's doable, or at least I think it is. I usually don't have a problem with vodka. And yes, I did lose weight when I was first diagnosed - I lost a lot quickly right before I was diagnosed, and then I kept losing as I was adjusting to the diet. I gained almost all of it back once I adjusted though, which was good.

Let me know if you have any more questions!

[Tiger73549]

Wow, I read the label, and Frosted Flakes have Malt Flavoring, which is not good news. My dad used to eat frosted flakes a lot, and he ate gluten free for a long time (or so he thought) Come to think of it, if he did cheat and eat bread he got very sick, so I don't understand why the Frosted Flakes didn't get to him. I think it would be easier to get a list of foods that I CAN eat.

It's kind of depressing giving up all my favorite foods, and college is full of gluten filled cheap meals.

[whitney728]

Tiger73549, on May 14 2008, 12:06 AM, said:

Wow, I read the label, and Frosted Flakes have Malt Flavoring, which is not good news. My dad used to eat frosted flakes a lot, and he ate gluten free for a long time (or so he thought) Come to think of it, if he did cheat and eat bread he got very sick, so I don't understand why the Frosted Flakes didn't get to him. I think it would be easier to get a list of foods that I CAN eat.

It's kind of depressing giving up all my favorite foods, and college is full of gluten filled cheap meals.

It is depressing at first, but you do adjust to it, I promise, and not feeling sick all the time makes up for it. As for cereal, Rice Chex are gluten-free, but this is a new thing, so you have to make sure it says gluten free on the front of the box, as some of the older ones still don't have it. There's a lot of foods you CAN have, but eating in a dining hall can be frustrating (see my other post). I've managed this for 3 years in college, feel free to ask me if you have any questions at all.

[Tiger73549]

whitney728, on May 14 2008, 10:31 AM, said:

It is depressing at first, but you do adjust to it, I promise, and not feeling sick all the time makes up for it. As for cereal, Rice Chex are gluten-free, but this is a new thing, so you have to make sure it says gluten free on the front of the box, as some of the older ones still don't have it. There's a lot of foods you CAN have, but eating in a dining hall can be frustrating (see my other post). I've managed this for 3 years in college, feel free to ask me if you have any questions at all.

What kind of stuff can you eat when you go out to dinner somewhere? What kind of stuff can you eat in the cafeteria?

[MySuicidalTurtle]

Hmm, most of my friends and close classmates have been supportive and one out of their way to make sure there was food for me or at a restaurant willing to make me food. If people were disrespectful to me I'd have a real problem. College is meant to be a place of learning and fun. This is my last year and I have had a great time not only being Celiac but vegan as well and have had the opportunity to use Celiac Disease in some assignments. My only advice is to not let things get you down. . .semesters go on and classmates change and grow plus you meet tons of different people and sometimes other Celiacs! Good luck to all of you guys.

[linuxprincess]

MySuicidalTurtle, on May 14 2008, 06:58 PM, said:

Hmm, most of my friends and close classmates have been supportive and one out of their way to make sure there was food for me or at a restaurant willing to make me food. If people were disrespectful to me I'd have a real problem. College is meant to be a place of learning and fun. This is my last year and I have had a great time not only being Celiac but vegan as well and have had the opportunity to use Celiac Disease in some assignments. My only advice is to not let things get you down. . .semesters go on and classmates change and grow plus you meet tons of different people and sometimes other Celiacs! Good luck to all of you guys.

I use this for papers whenever I can. It's a topic I know, I've done the research on and know where to readily access the information for biblio's. I've written some really great things about this for various classes!

I do think Tiger's quote about college food being cheap and filled with gluten is right on with most campus selections. Here in Austin, even though we're known as a healthy town, my campus selection in the lounge is minimal for a GFer. What is available is all so unhealthy and processed that its unappealing. I've noticed that as long as I've been a GFer I've had the overwhelming urge to eat healthier. This doesn't make it easy on campus or even out with friends trying to find something to eat can be a little challenging. Most college students tend to hang around places that aren't exactly a GFer's dream when they're off campus too. I've quickly learned to always bring a snack that I can eat when I go out.

[katiemk07]

I was diagnosed when I was three so I've grown up with Celiac but it is definitely still difficult being at college. One thing that was very helpful since I was in dorms and on a meal plan was talking to the head food services person in the cafeterias. Having supportive friends has been one of the most important things that has helped me through. That is what is important to recovering and feeling good about yourself with Celiac. The beer comment always comes up but I've been lucky enough to have friends who will make sure there is rum or vodka for me to drink. It's amazing how many things have gluten in them that people don't realize. I did a speech on Celiac for a class and people really took it seriously instead of making fun of me for it which was great.