College Students With Celiac Disease Meeting fellow college students for support..etc.
#1
Posted 23 June 2007 - 03:01 PM
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
#2
Posted 23 June 2007 - 03:27 PM
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-
#3
Posted 23 June 2007 - 03:40 PM
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
Gluten Free- May 2007
Soy Free- August 2007
Sugar Free- January 2008
Starch Free- January 2008
Egg Free (again!)- February 2008
Sulfur Free- May 2008
Dx'd Lyme Disease and co-infections- December 2007
#4
Posted 23 June 2007 - 06:10 PM
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’s everyday of the week and I missed class a lot and thus my grades fell a little bit because of it. About 3 years ago I had bad stomach cramps but come to find out, I had Gallbladder Disease and had it removed via Laparoscopic Surgery. My doctors actually think that the anesthesia from the surgery was the environmental switch that trigged the symptoms of Celiac Disease. I also have crappy moods and stuff due to Celiac Disease. I live in Indiana and attend Purdue University studying Synoptic Meteorology. Luckily in the city that we have our university in, we have several health stores, unlike my hometown. It is very expensive, but I tend to still avoid gluten free bread and flours. I make it sort of harder on myself due to my funds while in college. I eat a lot of fruits and vegetables and stuff, and that is a far cry from what I used to eat like.
I am a very stressed person, so yes I have experience with it really increasing my symptoms. My symptoms seem to be more along the lines of mood swings, tired all the time, very low energy, amongst many, many others. Actually I just ran across a list of gluten free food that Wendy’s put out and there are several other restaurants that have totally gluten free menus. I have yet to eat out yet, but I am not as worried as I once was. I have been doing a lot of research about eating out and I suggest you do the same...it really does help!
I would really suggest trying to stay soley off of gluten…meaning no gluten whatsoever. I have heard that as much as .1g of gluten will mess a person all up. I have been diagnose for about 7 to 8 months but couldn’t start my gluten-free diet until I got out of college for the summer, so I have only been gluten-free for about 2 days now. I was gluten-free for about 2 weeks right after college ended but went back off because of several trips and conferences I had. Yeah my girlfriend knows about how I am a Celiac but doesn’t really know what it is like to go through all of this.
My email is mwolfe@purdue.edu and my aim sn is apintrigue if you or anyone else on here wants to contact me about anything…please feel free too!!
Brian
#5
Posted 23 June 2007 - 08:30 PM
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.
#6
Posted 23 June 2007 - 08:51 PM
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
#7
Posted 23 June 2007 - 10:12 PM
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?
GLUTEN FREE 06/13/07
#8
Posted 24 June 2007 - 03:53 PM
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!
#9
Posted 24 June 2007 - 07:56 PM
peacenlove_girl17, on Jun 24 2007, 07:53 PM, said:
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-
#10
Posted 24 June 2007 - 10:00 PM
peacenlove_girl17, on Jun 24 2007, 05:53 PM, said:
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.
GLUTEN FREE 06/13/07
#11
Posted 26 June 2007 - 02:19 PM
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
#12
Posted 27 June 2007 - 06:47 AM
Thank you so much for your response
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?
#13
Posted 29 June 2007 - 10:52 AM
peacenlove_girl17, on Jun 27 2007, 08:47 AM, said:
Thank you so much for your response
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
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.
GLUTEN FREE 06/13/07
#14
Posted 25 July 2007 - 10:14 PM
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
#15
Posted 29 July 2007 - 01:56 PM
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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