Dear Gluten Dude: My College Won’t Keep Me Safe

being a celiac in college

First things first today. Happy Birthday Bruce!!! 66 and going strong. My dad had one foot in the grave at 66 and yet Bruce is still playing 3 hour concerts. It goes to show that taking care of your body and doing something you love are the two best things you can do for yourself.

And not that you asked, but in honor of Bruce, I give you my most to least favorite albums:

  1. Darkness on the Edge of Town
  2. The Wild, The Innocent and the E-Street Shuffle
  3. The River
  4. The Rising
  5. Nebraska
  6. Born to Run
  7. Greetings from Asbury Park
  8. Tunnel of Love
  9. Born in the USA
  10. The Ghost of Tom Joad
  11. Devils and Dust
  12. Human Touch
  13. Magic
  14. Lucky Town
  15. Working on a Dream
  16. Wrecking Ball
  17. High Hopes

Ok…on to the topic at hand today. Namely, how much responsibility does a college have in keeping a celiac safe, especially when they promised they could? Here is an email/rant I received recently.

Dear Dude,

I must apologize in advance for the rant you are about to endure. My name is [hidden], I have been in contact with you previously via Twitter. You were able to give me some stellar advice then, so I figured I would give it another go.

I am a college student. I also have celiac disease. As you know, having celiac disease can be frustrating enough at times, throwing college into the loop is an entirely new ball game. I am frustrated with my school and its dining options. I am a junior in college, although I just transferred to my school in August.

The last school I attended, I was able to live at home so food was never a huge issue.

Before I began this semester, my school assured me that there would be many vegetarian and gluten free options for me. So far there has not. The employees constantly tell me they are out of gluten free products or the preparation of the food is never safe. The gluten free bagels are put it the same toaster as regular bagels, the same cutlery is used, gloves aren’t always changed, pans used food that contains gluten, are then used for gluten free foods, etc. It’s a mess.

I have met with my campus nutritionist and the head of our dining halls. They continue to tell me that the issues will be fixed soon, but progress still hasn’t been made.

Canceling my meal plan is also not an option because it has already been payed for and new students are required to have a meal plan.

I am trying to find places that might deliver gluten free bread (and maybe some cookies for mid term week!) just to hold me over until my dining situation gets sorted out over here.

Any advice is much appreciated, and thank you for listening to my rant.

Well that sucks. If they promised you ahead of time they could keep you safe, and you paid for the meal plan, how can they now say that can NOT keep you safe, buy hey “we’ll keep your money just the same.” Have I told you lately how much faith I am losing in this world? It seems that doing the right thing always takes a back seat to bullshit.

From the college’s perspective, I’m sure it’s real difficult to take the necessary precautions. But they said they could. And they’re not.

So first thing I would do is fight like hell to get your money back if they cannot safely feed you. They made a promise and they are not keeping it. From a legal perspective, you may have a very good case. Read this.

The fact that the gfree bagels are toasted in the same toaster as the regular bagels means they simply don’t have a clue. Why should you have to pay for their lack of proper protocol?

In the meantime, you need food. Head on over to my Coupons page. There are some nice savings from some great companies (no…I do not get a percentage of these sales) and they all deliver. I also suggest signing up for each company’s email list, as I’m sure they email out coupons/specials for even more savings.

I am also building an online Amazon store, featuring products from a variety of categories that have all received at leat 4-star reviews (yes…I do get a small percentage of these sales). It’s not officially live yet, but please check it out here. Some good stuff.

In the meantime, if you’d like me to contact the college on your behalf, I’d be more than happy to. Just contact me privately.

Good luck to you.

gluten free college“Now young faces grow sad and old and hearts of fire grow cold
We swore blood brothers against the wind
I’m ready to grow young again”

― Bruce Springsteen

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23 thoughts on “Dear Gluten Dude: My College Won’t Keep Me Safe”

  1. This baffles me. I thought the American Disability Act, under Section 504, would guarantee that a safe environment would have to be provided? At the very least, there should be an opt out for the meal plan if they can’t provide safe food for a celiac.

    1. Wouldn’t she/he need to be registered as disabled in order to have this issue be an ADA issue? I didn’t think a Celiac Diagnosis automatically counted as a disability. This person would have to probe disability due to the disease.

  2. I was delighted to read an article that North Dakota State University has a locked gluten free kitchen. Cleaning staff are trained and you must show necessity to access this room. (No fad dieters allowed!!!)

  3. You might also want to file an Americans With Disabilities Act complaint with the Department of Justice. Info about how to do so is here: http://www.ada.gov/filing_complaint.htm They have an online form, and it’s easy to fill out. A call from the Justice Department can really catch a college’s attention.

    And, in addition to the nutritionist, you should talk with your college’s office for students with disabilities. That office exists to ensure that the college meets its legal obligations under the Americans With Disabilities Act and Title 504 of the Rehabilitation Act, so the staff there are likely to be more familiar with legal requirements than the nutritionist and dining hall staff.

    1. Laura’s advice is exactly spot on. I would also contact the dean of students, who should be able to help you out somehow in the meantime, and may be able to help facilitate/speed up your dealings with the bursar, the dining center, and the office of disability services.

      Someone mentioned that celiac might not count as a disability. Celiac absolutely does count as a disability under 504. It’s part of my son’s 504 plan.

      I personally think it’s worth filing a complaint with the Department of Justice, if only because that sort of thing is needed in general to get colleges to comply and to raise awareness.

  4. I would like to think that this is unbelievable, but I know from experience how casually other people take celiac disease. I think it is because so many people choose to be GF because they think they are eating healthier. (Not necessarily so if you’re eating GF junk food, another rant). I went on retreat a couple of years ago and was told no problem we can accommodate special meals. Who knew I would have to stand outside the kitchen while my friends ate and finished before my salmon was finished… Salmon 6 days in a row. The other food was cafeteria style and I had to hope I was safe!!!! Then other people would make comments like where did you get salmon…? Little did they know.
    The saddest part is that as more and more people are diagnosed there will be more activism and awareness, but it isn’t going to happen quickly.

  5. I know I shared this via Twitter, but want to share this information here as well. FARE (Food Allergy Research and Education) has developed a program to train universities in food allergies and intolerances (including gluten free/ Celiac Disease). They are piloting it with 12 schools, and this webpage also has a PDF document that schools can use to better their dining hall practices. Hopefully this student can share this website with her university and it can help them get on the right track.
    http://www.foodallergy.org/collegeprogram

  6. I was just diagnosed with CD but have suffered with dermatitis herpetiformus for over 35 years. My current doctor was straight forward with me after my last horrific breakout that I needed to be 100% gluten free. I have been feeling sick for years and made to feel like a hypochondriac. Now it all makes sense to me. I’ve been gf for a month now and feel like a whole new person.
    I am in utter shock with all the insensitive, misinformed/uninformed doctors, media, restaurants, schools…etc.
    I’ve never see a commercial for celiac disease. With all of us pitching in maybe we could do it? What about educating restaurants about the difference between celiac and the gf diet fads? How about having Celiac friendly menus vs gluten free menus? I haven’t even gone out to eat for fear of getting glutened- I just don’t want to take a chance after this last breakout and the weeks of suffering with no relief!!
    How could this college not take this student serious? This is just not right!! I know I will be visiting my local restaurants and doing what I can to help get the truth out on celiac disease.

  7. My hope is that your school really just lacks the education. Most schools want to help, they just don’t understand, or all too often it’s a business thing. SO in my undergrad I started a club, worked with dining services, and really came at them like a business and showed how it could help them. We worked pretty hard to crunch numbers and get signatures from the massive number of students who needed this option. In the end we got a dedicated gluten free restaurant, plus dedicated gf prep areas in several of the restaurants and in the main kitchen for grab and go stuff. If you need any help, please let me know, but you can(and will) get through this- just don’t be afraid to fight! I actually learned a ton from the whole experience and it opened up all kinds of doors! It helps that legally they have to, and now it’s been shown in the courts – no safe food – no meal plan required. Sending hugs and encouragement to you!

  8. Celiac is still an unknown for many nutritionalists. In 2013, I had surgery and made the coordinator and dietician aware of my CD before my stay. All they could offer me was peanut butter. Even a health institute was clueless. They could not guarantee my safety, so I had to prepare all my meals for 10 days in advance in Pyrex dishes, freeze and label them, and ask my husband to bring in my meals each day. My simple analogy is this, if it was an extreme peanut allergy, you would want to ensure the patient/student does not come in contact with peanuts or even particles from peanuts. Why should this be different? Train the staff and ensure the safety of all consumers. My discussion with the nutritionalist made my blood boil. No one should have to live in fear, especially if they food plan is mandatory. I agree with GD, fight like hell on this!

  9. In the UK this would be covered by the Equalities Act 2010 and common law relating to contracts. There is also negligence (tort) if they provide food which should be gluten free but is consistently cross contaminated.
    How can they justify taking cash from students (who often have very little money) and then deliver nothing useful.
    Sorry to rant, I’m angry on this person’s behalf.

  10. The most important thing is for her to stop talking to dining services, and start talking to the Disability Services office and the Deans (and President). Both of my kids were diagnosed while they were in college, and overall the experience has been positive. No, the dining hall never could really deal with Celiac, much less with Celiacs who ate vegetarian. However, through disability services we arranged housing for them for them with a kitchen, and got them off the meal plan (at this college, everyone must be on the meal plan).

    As long as she is dealing with this as a dietary issue (ie dealing with dining services) she won’t get anywhere. She must deal with it as a disability and go through disability services, provide all the doctors’ notes, etc.

  11. I’m a senior in college with extremely sensitive celiac, and have gone through exactly what you’re experiencing, so I feel your pain. I battled with my uni for months before they accommodated me, and now they just give me a cart full of fresh food each week, which is actually pretty great.

    Unfortunately, it took me eating in the dining hall multiple times, getting sick every time, and then showing up and showing them how sick I got, for them to change anything. It’s honestly just an issue of misunderstanding, where they don’t realize how serious of an issue it is. Once they saw how sick I got I’m sure they were just trying to avoid a lawsuit, so they accommodated real quick-like.

  12. It would be fantastic, (but cruel?) if you would post the name of the college so that we can all harass them. At the very least this student should get his “meal” plan money back. He hasn’t been getting meals.

  13. Gosh. What an intelligent response but I’m dumbfounded by this. My sons coincidentally ended up at the same university and they are loving the gluten free food. In fact some of the time the entire residence is sharing the same gluten free meals because that’s what the main course is that day. The one time my first son had an issue in first year, first semester, and was not sure if it was the cafeteria or a restaurant, I called to just confirm the University really has their gluten free game on. They shut that kitchen down faster than I could protest and swat teamed that place top to bottom. Their policy is no chances and the kitchen staff is so darn sweet about serving them. For your knowledge they attend University of Western Ontario and I’m ecstatic they get that level of care. Note they almost never get served a safe evening snack but they have 3 square meals a day and in the open hours self serve cafe there is plenty of things for them to choose including dairy free which both swear helps their Celiac well being. If it’s helpful for someone, the University tends to reside kids with specific dietary needs in the largest dorm because it has the largest kitchen and segregation is possible. Universities should take note of this and step up. It’s a changing world and the simple facts are allergies and Celiac are sharply on the rise. Don’t sell us food that is not as specified!! Isn’t that a legal matter in the States anyway? A lawyer letter to the school ought to fix the situation.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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