A Warning For All Celiacs Going Off To College (and Their Parents)

[ajgilboy]

Hello Everyone!! I just want to give you all a heads up on an experience I had this fall. I am 18 years old and was really excited about attending college as a new freshman at my "dream school", away from home (a school that is known as one of the healthiest school in the midwest). My parents and I spent a lot of time talking with people at the school and making sure that things would go smoothly for me, as both my parents and I were really nervous for me to go.

We met with the Director of Food Services, the Dietician on campus, the Director of Student Life, and about a million other people that repeatedly assured my parents and I that I would "eat better on campus than at home". They said that they have had students before with celiac, that all of their kitchen staff knows about a gluten-free diet, that food would not be an issue at all!

Well, I got to school and there was nothing. No one knew anything about a gluten free diet. They had no food for me except gluten-free Salad Dressing and gluten-free Pasta Sauce (minus the noodles). I spent my entire first week on campus starving and extremely home sick because of my experiences. Consequently, I spent at least a few hours every day speaking with staff and many of the people I had spoken with previously. I gave them a week and a half to get their act together but there was still nothing for me to eat after that time passed, forcing my parents to take trips down to see me with gluten-free food.

After much thought, I unfortunately had to drop out of school because I was getting too sick to function from malnutrition and all of the stress that this situation was causing me. I really want to make sure that future college students and their families are well-prepared for the challenges of being a celiac AND a college student.

So, I do have some recommendations:

Contact everyone you can think of at your school and Make a Plan....and do it in writing.

Make a list of food items that you would like and give it to them in advance. This way, they can at least get a few items for you for when you arrive.

Register with your school's Disability Office (They Were EXTREMELY Helpful for me)

Try to get into apartment style dorms if available...A Clean Kitchen would make a big difference

Lastly, Make sure that your roommate(s) know about your celiac and are understanding of your gluten-free diet

Good Luck to All Future College Students and Parent & Please Feel Free to Contact Me With Questions~!

[PattiD2]

I'm sorry to hear about your experience. It sounds like you had tried to be proactive but the school didn't follow through. Do you have a 504 plan? We are getting one set up for my 14 year old daughter, so we have a legal plan to back us up, when necessary. Unfortunately, the medical records people for our doctor, are refusing to release her medical records so the 504 plan is going very slowly. It is frustrating to have to deal with people who don't get it but I encourage you to keep trying. Things are changing and I know you will find a place that will be willing and able to accommodate you.

[ab123]

I had a horrible time this semester too. I was recently dianosed so I had gone through a whole year of college eating gluten. They treated me like living gluten free was a lifestyle I chose (like vegetarian or something) The director of food services and the vice president of the school said horrible things to me like, "What do you want us to do, stick you in a plastic bubble?" after I was promised that I would get the right foods. They would never tell me what was in the food. The director of food services told me, "well, you should be fine. We offer a salad bar for every meal" I told him that it was not healthy to eat salad for every meal and he didnt understand. He told me to "just pick the crutons out of the salad" It was so horrible.

I was forced to cancel my meal plan and cook for myself. I would advise new college students to do this. We have a kitchen downstairs in the dorms and a fridge and microwave in our room. So I just cook every few days and freeze things. I am eating so much healthier than I ever would in the dining hall.

I will say that I agree with ajgilboy; get registered with the disabilities office. They were so helpful in providing documentation so that I could get out of the meal plan and also have a bread machine in my dorm.

If anyone has any questions or anything about being gluten free in college just let me know!

[Cheri A]

I'm so disheartened to read of both of your experiences.

I hope that by the time my eight year old daughter goes to college, things will have changed.

For now, I guess I'll keep making double copies of the recipes that she likes. I have thought that one day she will need "her" own cookbook to accomodate all of her allergies.

[kbtoyssni]

For now, I guess I'll keep making double copies of the recipes that she likes. I have thought that one day she will need "her" own cookbook to accomodate all of her allergies.

Giving her her own cookbook is a great idea for an 18th birthday or high school graduation!

Luckily there are colleges out there that can accommodate a gluten-free diet. It's definitely something to look into when choosing a college. I'd also recommend the 504 plan so that legally they have to accommodate you.

[confusedks]

Does a 504 go with you from High School to college? I am a junior in HS and we are in the process of getting me one because of my other health issues, but I didn't think it would go with me to college?

Kassandra

[Darn210]

ajgilboy and ab123 thank you for sharing your experiences - although I wished things had gone better for both of you. My daughter is only 6 and she's only been gluten-free for 6 months but I have already been thinking about what we would do for college. Part of being a parent, I guess, I've always got to worry about something so why not something that's going to happen 12 years from now!

Sounds like the place to start is with the Disabilities Office . . . now, to put that on a post-it note and keep it in a safe place for 11 years It does sound like access to a kitchen is the way to go and to totally skip the college's food service plan. I would be so worried about cc in that type of an environment anyway.

Thanks for the info and good luck to you both.