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College Students With Celiac Disease

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Hey Guys,

I am brand new to this site and message board, although I have been reading through the message board for food ideas and other support. I saw the Celiac Disease Awareness bracelets the other day and ordered one immediately! I am definitely finally accepting all of this, and am actually handling it just fine so far.

Anyways I am looking for fellow college students that are struggling with the stress and eating issues associated with college and going gluten free at the same time. However if anyone else wants to exchange information and stay in contact with me then I think that would be great!! I am always up for contacts and all the support I can get.

Thanks!

Brian

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Hey Brian!

Well, I am not officially diagnosed (I am awaitin' my blood test results), but since my mom has celiac, and I have all of the symptoms, signs point to yes in the diagnosis area. Also, since I travel home to see my doctor, which won't be for another two months. I am trying a gluten-free diet to see if it makes a difference. So far, it really hasn't, but that could be becuase of my mistakes and slip-ups.

It has been a pain though, dealing with school and my symptoms. I have had to skip class more then once becuase of bouts of D or horrible stomach cramps. And it seems that my symptoms are always worse in late afternoon, which is exactly when I have class 4 days a week this summer. So I swear I look like crap, feel like crap and I am in a crappy mood to my class mates.

I am in north florida, btw. How have you found buying gluten-free food? It is way expensive, and on my college budget, hard to do. I recently stocked up of gluten-free flours to try to make my own cookies, bread, etc instead of buying the crazy priced ones in the store. I recently read on another post that asian stores have cheap rice flours and rice noodles in all sorts of shapes. I am going to check that out on my next errand run.

Is it me or does stress effect your symptoms. I swear I have more problems all around when I am stressed about school or work.

And sleep too, when I am tired, my symptoms are worse. I wonder if it is being tired that causes me to notice my symptoms more or is being tired a result of all my other symptoms.

In the three weeks I have been trying gluten-free (and like I siad I haven't been too sucessful in keeping 100%) I haven't tried eating out yet. Have you? Any suggestions?

Where are you located? How long have you been diagnosed? I am glad for your post, I think someone other people my age with my problems would be great! My boyfriend has been great, but he doesn't really know what its like and how I feel. I look forward to hearing from other college celiacs too!

-Laura-

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Hi Brian,

I am not in college, but I'll be a Junior this coming year. If you ever want to talk, you can email me or IM me.

email- knshore@hotmail.com

aim sn- knsgoestonz511

Kassandra

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Hey Laura!

First of all let me know how your blood work comes back, I am also anxious to see what the results will be. Yeah, I know just how difficult it is with going to class and wanting to sleep in all the time. This past semester I had 7:30

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I'm in college, but I live nearby, so it is not the same as living on campus. Also, I'm old (38). I can't imagine living on campus in the dorms, and/or having to eat either the food in the cafeteria, or at the little stores. I think the only gluten-free things in there are peanuts. I've met young students with celiac, and wonder how they do it.

We have college clubs - have you thought of starting a club for celiac or food allergies or something like that, where folks could get together and chat, and try to gain some power in changing what your college offers folks to eat? I haven't, but like I said, I'm more of a returning "adult" who is home most of the time.

My college town is also great about food - with two or three health food stores, and even the "Fred Meyer" (all around store with food etc. like a walmart) has a big health food section with its own gluten free section. gluten-free restaurants, however, are at least 60 miles away in Vancouver B.C., or 90 miles away in Seattle (I live in Bellingham, WA, and go to Fairhaven College of Interdisciplinary Studies -- my "concentration" is "Natural History Writing".) I only eat out at one of two restaurants in Bellingham - they are both small - and I know the chefs in them both. Problem is, they're high end, so eating out is not for every week!

I find that I do best if I don't eat gluten free replacements for gluten foods. I just eat fruits/veggies/meat/and nuts, until I remember that nuts give my colon the heebee jeebees. Of course doing no beans/grains/dairy/gluten/soy makes things extra difficult for me...imagine if I were still a veggie!

Anyway, check out the college club thing - I know our clubs get 100 bucks or something to manage themselves/make posters or whatever. You guys could really kick some administrative butt about having gluten-free options on campus.

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Bully4you,

That is a great idea. I am definitely going to check and see if a Celiac club exists. If not I will definitely try and get one started. Not only will it make the campus healthier and help the students with Celiac Disease but it will also help us get experience with lobbying the university and starting and maintaining our own club.

Fantastic idea!

Thanks!

Brian

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^ You could also search facebook. My university has a facebook group on celiac and that seems to be a good way to find others in your area. There are also some huge global celiac/gluten free groups on facebook and members in your network will be listed first if you click the link to see the members.

I can definitely relate to a lot of things you're going through right now. That was me about two months ago! It's hard going gluten free when you're in the middle of things, and it's not exactly an easy change to make. It's a complicated diet, and emotionally the situation can be frustrating. I too missed a lot of classes which lowered my grades because of gluten issues. For most of the semester (in fact, most of the year) I kept getting "sick" or I'd be very exhausted all of the time and just wouldn't have the energy to get up for my classes in the morning. All semester my boyfriend just kept looking at me like he didn't quite believe me when I said I was just too tired to go to class, and he would ask why I kept getting so sick. I didn't know, I just knew I was too tired and that I was starting to look like a slacker. My stomach would hurt a lot and I wouldn't eat much. I had lots of headaches, and started getting migraines for the first time in my life. I would wake up incredibly naueous and sometimes I would throw up because of the nausea and migraines.

Are you in the dorms? Or in your own apartment?

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Hey :)

So I'm just starting college in September. I'm quite nervous, to say the least. I'm going to be in the dorms, which I know is going to be a bit of a struggle. Do you live in the dorms? How do things go for you on a daily basis? I called the nutritionist and she's not sure if the chef can make oil free, gluten free, vegan food (which is what I have to stick to 100% or I get sick), but he's sure that he can make gluten-free food. SO I'm probably going to be cooking for myself in the community kitchen, but I have no idea how that will work. With your schedule, how do you work food into it? Is it difficult in college, are you too busy?

Well anyways...I hope all is well!

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Hey :)

SO I'm probably going to be cooking for myself in the community kitchen, but I have no idea how that will work. With your schedule, how do you work food into it? Is it difficult in college, are you too busy?

I lived in the dorm my first year, (which was a couple years ago now and before I even knew what celiac was) and from experiences I had cooking in a community kitchen, you'll have to be careful. Not many girls used the kitchen so it wasn't that bad cleanliness wise, but just think if someone makes something with flour and there is still remnants around when you go to use the kitchen. Plus, I assume like my old dorm, that the cooking pots and such are community as well. I would suggest washing the whole area before you use it and maybe investing in some of your own cooking tools. (it may be worth while to wait until late at night or early on a weekend morning to cook, when no one else will be around and you can cook all you want without having to worry.

As for food while I am in class, I have always been a snacker. So in class I pull out my ziplock of crackers or cookies, and chow down while taking notes and such.

I have found that now when I have time after going grocery shopping, I make single serving sized ziplocks of dry cereal and cookies, and stash them in my cabinet. That way when I am running late to class but know I will need food, I can just grab a pre-made bag and go.

Also, leftovers are my best friend. I know that I have class until 7pm on Tues and Thurs, so on Mon and Weds when I make dinner I purposely make extra and stash it in the freezer or fridge to pull out either on my short lunch break between classes or for dinner when I get home.

My new experiment is with protein bars, I found a few that are gluten-free and I am trying them out for a snack in class because they will keep you full longer.

Also, last thing, make time for food. It is so easy to sleep in before class and take a nap on your lunch break and skip meals, but believe me it is not worth it :)

Good luck!

-Laura-

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Hey :)

So I'm just starting college in September. I'm quite nervous, to say the least. I'm going to be in the dorms, which I know is going to be a bit of a struggle. Do you live in the dorms? How do things go for you on a daily basis? I called the nutritionist and she's not sure if the chef can make oil free, gluten free, vegan food (which is what I have to stick to 100% or I get sick), but he's sure that he can make gluten-free food. SO I'm probably going to be cooking for myself in the community kitchen, but I have no idea how that will work. With your schedule, how do you work food into it? Is it difficult in college, are you too busy?

Well anyways...I hope all is well!

I really think it depends on where you go... whether or not it will really be safe. I've heard excellent things about some schools and really terrible things about others. The school I go to is basically useless in the gluten free department. The only dorms with kitchens are upperclassmen dorms, but a few buildings have their own communal kitchens. Mine didn't, which made things about 10 times harder than it needed to be. Definitely bring your own cookware.

A girl I know left after her first semester and went to a school in her hometown because she just couldn't get safe food. The dietician really only worked with her for about a month, and all she did was hilight the items on the menu that were "safe". She wasn't ever made special food. And of course, the "safe" food hardly ever was... our cafeterias had really long lines and kids tended to mix up the tongs and get bread crumbs in weird places. She complained that even when she ate "safe" food she still got sick often because of CC issues and she was often really hungry since "safe" mostly consisted of lunch meat and salad/fruit. Our cafeterias are horrible about frying EVERYTHING. Another girl I know was diagnosed with celiac right before the second semester. I know she was having a lot of similar complaints. I went gluten free about three weeks before the school year ended, and was not officially diagnosed so I didn't have a note. I noticed that I got sick even eating really plain, basic foods, so I stopped eating in the cafeterias pretty much all together. The only things I got were pre-packaged gluten-free foods that hadn't been opened. I ate out at a lot of restaurants that had gluten-free options (which was expensive) and bought a lot of gluten-free frozen meals from the health food store across the street. It was repetitive and expensive and not terribly healthy. I feel like I could have done a lot better with a communal kitchen, at least I could fry some safe meat and steam some veggies or something, which would have been cheaper and safer. You'll be busy, but you'll probably have time to cook yourself something. I definitely agree that cooking extra and saving the leftovers for later is a good idea, it's nice just to have stuff on hand. But you SHOULD have time to get some food. You might have to make more of a priority than other students, but either you're going to have to wait in line in the cafeteria or cook it yourself, so it will take time either way.

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I live in the residence halls..It is kind of bad because I was a unit president of one of the buildings in my dorm, and I have aspirations to run for the presidency for the entire dorm next year but this makes it very hard for me now that I am gluten-free. However, so far I have not really baked anything, like gluten-free cookies, breads, etc...I am just eating meats and fruits and veggies which I am actually shocked that I am eating them..haha. If only you knew what my diet was like before I had my gallbladder removed in the summer of 2004.

I have definitely jumped on Facebook and joined some groups and am looking into the club idea at Purdue University. I love this communication between people. You just never know what you will find out, due to someone else's experiences. I also like trading foods that gluten-free and stuff. Especially for me, because I am just on my fourth day of being gluten-free so I am struggling to find much variety, but this site has already helped tremendously!

I know that with my food courts, the food is very questionable on the Gluten front and that they do not help us Celiacs with that kind of information.

If you have any more food ideas or anything, please feel free to send them my way or any other information or help with this!! I would GREATLY appreciate it!

My email is mwolfe@Purdue.edu and my aim sn is apintrigue ...if anyone ever wants to get a hold of me or talk to me, you are more than welcome to!

Brian

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Laura and Liz,

Thank you so much for your response :) I'm sorry to hear about the challenges, but you guys look like you've figured things out now...which is great. It's so hard to get into a routine and figure out how to just live life normally everyday, and I'm sure trying to do that at college is 500 times harder. So good work! Haha.

That was all great advice...I think I'll definitely put together recipes then that I can maybe cook in bulk and then reheat as leftovers a couple times a week. That sounds like it would be more convenient.

I guess the main thing that's been on my mind is how this will affect me socially. Did this all affect your social lives?

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Laura and Liz,

Thank you so much for your response :) I'm sorry to hear about the challenges, but you guys look like you've figured things out now...which is great. It's so hard to get into a routine and figure out how to just live life normally everyday, and I'm sure trying to do that at college is 500 times harder. So good work! Haha.

That was all great advice...I think I'll definitely put together recipes then that I can maybe cook in bulk and then reheat as leftovers a couple times a week. That sounds like it would be more convenient.

I guess the main thing that's been on my mind is how this will affect me socially. Did this all affect your social lives?

Well, I think it can affect your social life if you let it. The hardest part for me was sitting in my room alone eating boxed/frozen gluten free meals rather than eating with friends in the cafeterias. It just felt lonely.

However, I could still find a lot of restaurants that were safe for me to eat at (call ahead! The host might not have any idea what gluten is, so ask to speak to a manager and find out if they can accommodate you.) so I could still eat out with friends, though I had to be ultra picky and not share my food with anyone. I could sometimes eat at the sorority house (I wasn't living in yet, but I was allowed to eat there whenever I wanted) and usually managed to find something gluten-free that I could eat with my friends. I'd sometimes just go into the cafeteria for company and eat some plain fruit or just drink some tea. A lot of times, my friends would order pizza, so I'd just bring a frozen dinner or eat beforehand. Heck, I've been able to go to a few different fast food type restaurants and find safe food, so I get to feel TOTALLY normal. Tokyo Joe's and Noodles are both excellent choices, if you have any near you. Once and a while it's fun to go to a restaurant with another gluten-free friend and both eat gluten-free food together. Hopefully, at least with a dietitian working with you, you won't have as many issues as I did in the cafeterias.

The only thing I'm remotely worried about for this year is eating all the time in the sorority house (I haven't even contacted anyone about it yet since I still don't have the official results of my tests) and partying. Obviously, beer's not going to work, but I'm not sure what will.... I've been to a lot of parties where random mixed drinks are served and god only knows what's in them. Suppose I'll just have to ask for straight liquor with soda as a chaser ;) I never liked beer to begin with, especially the obligatory cheap Keystone Light crap everyone has, so it's not a huge deal.

The point is that you can learn to work around a lot of situations. Will you be able to go into a restaurant and order straight off the menu without warning anyone about your condition? In most cases, no. Will you be able to just order a pizza and drink beer with friends? Probably not. You certainly will have to modify your habits, but it can be done. Again, bring your own food and hopefully someone will have some safe booze or something. You can still eat in most restaurants, but it might not be the easiest thing to watch your friends eat lots of bread or whatever. It'll get easier and more "normal" with time. I guess, too, not everyone will be really sensitive about your dietary needs. I've had some "friends" go right out and tell me what I "can" eat, or go out of their way to eat foods they knew I liked but couldn't eat right in front of me. You'll have a lot of people who simply don't understand that a crumb or two of bread is TOO MUCH, and might get frustrated when they find out how "limited" your options really are. I wouldn't worry about it a lot though, because I've found for all the insensitive people, there are plenty of sensitive ones who will be your real friends, and that with time a lot of time will really understand it.

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Hey!

I'm brand new to the site as well and have only recently gone gluten free. I'll be heading to UCLA in the fall for my first year of college. I'll be living in the dorms as well, and eating at the cafeteria sounds pretty scary at the moment, but thats what I get to deal with, I guess. Any advice for making this work? And anyone else at UCLA? Or from the Bay Area?

Kaitlin

AIM - keightleign

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i got out of college a couple of years ago, since i cook i will say it is a lot of work cooking gluten free, and probably more if your at a dorm or school in general. pizza crust isnt too expensive to make though or pie crust. xanthum gum will cost a little, but last a while.

chinese food shops do have the hookup on rice flour, potato starch, and sometimes tapioca flour. i can get one pound bags of rice flour for 60 cents i believe, which helps.... look for one around your way for sure....

as far as beer pong goes, just bring one or two gluten free ones and fill up your partners when you get scored on! thats what i do when put in the situation....

if your in pittsburgh and see this lmk, also how do i get my pic posted on the profile? keeps saying the file is too large.

jdog

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I wasn't gluten free last year at school but I will be this year and have already contacted the nutritionist. Supposedly, she's a total ditz but she has done very well getting modifications with people with food issues. And she better, because since I live on campus, I have to pay something like 3K for a meal plan and I don't have money to go off campus to buy food and let that money go to waste.

I'm a little apprehensive because I am gluten and dairy free, vegan... except for fish, and follow South Beach diet strictly and that's not something I'm giving up. Hopefully they'll be able to accommodate. At least we have 2 a la carte cafeterias so I can avoid the all you can eat place where cross contamination scares the bejesus out of me.

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I'm new to the world of gluten-free goodness. I'm a 2nd year grad student at Pitt. I'm always up for chatting feel free to message me on AOL IM at KaliKat0403

hope to chat with you soon!

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Hey guys! I'm going to be a senior at the University of Wisconsin - Madison. I was diagnosed at the end of my freshman year of college, so I know how hard it is to completely change your lifestyle and try to survive college at the same time! :)

Good luck to those of you in dorms. I lived in the dorms for a semester after being diagnosed and it was really stressful. I lived on nachos made in the microwave (melted cheese on tostitos and dipped in salsa), junk food, and fruit and vegetables! Luckily, the university permitted me to have a small freezer in my dorm, so I kept it stocked full of food that my mom made for me at home.

If anyone wants to chat about anything, feel free to drop me a line.

Email: leege@wisc.edu

AIM: somegirl2004

-- Erin

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Hi everyone,

You all have put up some really helpfull tips. Fortunately I am not living in a dorm and living at home. It is still a stuggle. My parents are putting up the funds for my new celiac Diet(thank god). I stuggle with fatigue, and my head cant think clearly, abdominal pains and headaches, the most irratating tho is the fog. School just started, I had to switch campuses, one that was closer to my house so that the drive isnt that bad and I can go home and eat between classes. The first couple of weeks were so so i was managing as best I could. Then I had a slip up of gluten last week thursday and that screwed everything up again. I have been gluten free for about 4 weeks now, so I think that my small intestine is still healing. The thing i stuggle with most is living a normal college student life while healing. I havnt been to class the past couple of days because of the fatigue, weakness, and fog. I feel like a zombie. My diet right now consists of vegies, fruits, and protiens. I foudn this great protien drink "one step" that helps me while im in school. Its hard lugging books, snacks and luch around with ya on campus. Im from hawaii if any college students out there from hawaii get this or anyone that just wants to talk or vent email me.

ccttskayama@aol.com

~cherie

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hello everyone!

i just wanted to join in on this subject. im a college sophomore and i was just diagnosed in the beginning of september. it really is tough trying to do well in school and get used to celiac disease and gluten free. i live in the dorms and have to eat in the cafe. most nights my only gluten free options are fruit and salad. its so frustrating to not be able to eat, and my school isnt doing much in the way of providing more options. i would love to talk to anybody if ya want...heres my info:

AIM- emili1242

email- emili1242@yahoo.com

good luck to everyone!

oh yea and i go to Goucher College in Towson, MD. anyone go to school around there?

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