College And Celiac

[gftruck]

On August 25th of this year, I was diagnosed with Celiac Sprue after a series of blood tests, an endoscopy, and a serious look at family history and whatnot. This was just over a week before I left for college and began living on my own. I guess it didn't hit then me how hard this was going to be, but lately all I want to do is cry and eat an entire deep dish pizza. As you can imagine, dorm life is not very forgiving for someone with Celiac, and no matter how hard I try to stick to my cafeteria's list of gluten free food they offer, I still feel bloated all the time and I still get sick. Last week, I had to hurry through an exam because I needed to get sick, and I ended up getting a B on it. I hate needles, so when my school's health service offered nasal flu vaccinations last week, I immediately went, only to be told that I couldn't get one because I have "a weakened immune system." I feel like Celiac is taking over my life, and I swear it is all I ever think about. I am always worrying about being "glutened." I have to get another endoscopy in December to see if the gluten-free diet is working, but everytime I get sick (which is like twice a week) I worry what my doctor is going to say. Basically, I am just so sick of running to the bathroom after eating. Lately, I've been getting sick from coffee in my dorm. I mix it with pure brown sugar and powdered French Vanilla creamer which says "gluten free" right on the container. It's driving me crazy!

Now that I've gotten that off my chest, is there anyone that can offer any sort of advice as to how to deal? Anything is greatly appreciated. Because this all happened so close to me going to college, I really didn't get a chance to sit down with a nutritionist or my doctor and discuss everything. I feel like a lot of this has been trial-and-error, which just results in me getting sick. Also, maybe to people who have had Celiac and have been gluten-free for a while, does this ever get better?

I'm so glad that there are resources like this out there. It's nice to talk to my parents about it, because they feel badly, but having a group of other Celiacs is a huge comfort. Thanks a lot!

[psawyer]

Welcome to our community. You will find lots of answers and support here. There are a number of folks here who can help with being at college with celiac disease. I was diagnosed at age 46, so I don't have any relevant personal experience.

[RideAllWays]

I am in university and struggling. My roommates are really good about not using my things and such, but there are crumbs everywhere and things just seem to intermingle. I was diagnosed almost a year ago and I never, ever cheat, and I know my hidden gluten very well. I am on the waitlist for a single room right now, but I probably wotn get into one until at least January. It helps having our own kitchen, because I don't have to eat on a meal plan...I ate in the caf once and was severely sick after.

It's hard for teachers to understand why we are sick so often, and sometimes the social situations are awkward...take it day by day and try your best to make use of any on-campus doctors and counselling as you need it; they can be very helpful. If you ever need somebody to vent to my email is d.hoholuk@hotmail.com...I always like talking to other celiacs, I wish there were some where I am living!

[soulcurrent]

I'm in community college and live by myself, so for me the problem isn't having to explain things to roommates it's finding the time to take care of myself. I work full time (plus overtime when required) and until right before my endoscopy I was in school full time. Now it's 3/4, since i just dropped a class that I really need but couldn't focus on because I've stressed about the lifestyle change.

I was just diagnosed so I'm still learning to cope myself but hang in there and I'm sure it'll get better.

[AKcollegestudent]

I'm actually about to email my class to tell them that I can't finish a paper. That's after last week's paper which got a C+ because I was so out of it that I forgot to commit my argument to paper. If I'm glutened, my brain becomes foggy and neurological symptoms come out in full force. Explaining that to my professors is not only near impossible, it makes me feel like a failure--especially since I don't get sick in my own kitchen.

But I'm forced to eat in a cafeteria or cook in a kitchen that is always full of crumbs. The neurological symptoms show up eventually, one way or another.

I don't have much in the way advice, except that if you are forced to eat in the cafeteria, bug them. Pester them about what all is in the food, who's touched it, what pans it's cooked in, etc. I've cut down on how sick I've been by asking question after question--even though I know people who are gluten intolerant on my campus who just suffer from symptoms instead of asking.

One piece of advice: I know most of the residential colleges I have friends at, mine included, have a nutritionist either on staff or affiliated with the college. You might check with your health services people about whether or not there is a nutritionist on staff.