Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Pity Party/ College Search
0

31 posts in this topic

Ok. I am grateful we are even at this point. I am. But I am here to whine about The College Search from a food-issue point of view, and don't anybody tell me it will all be okay and I shouldn't be whiny. :)

Big University #1 says they feed lots of celiacs, and he'll be fine. Except there are only 6 choices of gluten-free foods. Total. For four years. When I asked if they thought that was reasonable, they told me that if I didn't think it was reasonable, maybe another school would be a better fit.They also have a menu that keys to the major allergens, but not gluten. And the items that are okay are only served in giant lines. He wants to go here.

Arts School #2 says they don't allow any cooking in rooms, for any reason, for anyone. If they made an exception, everyone would want a microwave. No kitchenettes in the dorm. If I dont like that, I am free to "secure a private apartment in the city" on my own. There is no policy about eating in their only cafeteria and they do not check the food contents nor would they. He liked this school.

Private School #3 says there's no gluten in their food. They don't use additives. Oh wait, that gluten? Oh, they can't be responsible for knowing what's in the food that arrives from the service. He can have a microwave in his room, though. But my son didn't love this school anyway.

Private School #4 has an allergy-free kitchen in addition to the mainstream one, where students who have registered can have their food made to order for each meal. Gluten free items are tagged and in a separate serving line. There is a allergy-free convenience store aisle at the student commons' store. My son hates this school in every other way.

There are bigger problems, I KNOW. But as I used to cry in the cookie aisle, or when it was "make a pretzel log house" in 4th grade, it is hard to think here is a talented, academic student who has to rule out schools because they won't feed him. He is dangerously thin as it is -- so there's no room for error here, or a low-calorie salad bar diet. Yes, I know it can be done. Yes, I know. But it makes me sad that schools are so "well, we couldn't possibly accomodate him".

End of whineathon. Getting off the couch :)

1

Share this post


Link to post
Share on other sites


Ads by Google:

I just got through that very same problem as I just started college. I found that my favorite college could "do gluten free" but they put it on the same line as the rest of the food buffet style. I dicided to go through disabilities services and the college was forced to accomadate my needs. All I needed was a note from the doctor stating what was wrong (celiacs) and what they needed to do for me ( provide me with either a kitchenette or accomadations in the cafeteria). Through disabilities I was able to talk to others at the school who also have celiac and find out what they did and how the food service was accomodating them. I found that the food service was terible at accomadations so I opted for a kitchenett, so the school put me into an efficiency apartment on campus so I can cook all of my food my self, I am not to fond of this but it's better than worring about it all the time and it allowed me to go to my favorite school. If you go through disabilities they are required to accomidate your son. I would try that

hope this helps

nicole

4

Share this post


Link to post
Share on other sites

Has he ever had a 504? That would cove most of your issues for state schools.

I hate to think of him not going where he wants based only on the food available. If he's willing to learn to cook (which he'll need to do anyway at some point), I would go for the school he wants and get him cooking so he isn't limited to the 6 foods the school offers.

2

Share this post


Link to post
Share on other sites

I would go with number 2 if that is a school he wants to go to. He can share a place off campus with other students to save some money and you won't be charged the room and board fee at the school so that will help to offset the costs.

My DD faced this same issue at her school when they insisted freshman live on campus. The school admitted they couldn't feed her safely and put her in senior housing the first year so she would have a kitchen. She went into an off campus apartment the next year.

Do contact the disability office at the schools you are considering as celiac is covered under the ADA. They should be more helpful than admissions.

1

Share this post


Link to post
Share on other sites

Brilliant Nicole!

I will be facing this in 2 years with my son.

Thank you for that information.

And to Ryebabyo--

That was no whine...

It was a very informative statement on the bass ackwardness of colleges to recognize or understand the severity of food intolerances or the dangers of gluten for Celiacs. In the next 100 years they will be forced to change as Celiac/Gluten Intolerant students will be coming in droves. But that doesn't help us or our children now does it? Those are very interesting and very disheartening answers you got. Except for the one from the school he doesn't like. Well, good for them anyway for at least being proactive.

Wish you the best of luck, maybe an apartment will be the only way, unless you have success with the disability route.

2

Share this post


Link to post
Share on other sites




Okay, so I know all that. I get that if I go through 14 offices and 16 people and fill out 32 forms, half of which will be lost, discarded, or ignored, he can be assured that when he goes to eat, there will be something that meets the legal definition of a meal. It's not like we are new to the whole concept. Since we live in a college town, the Big U's response is to have him live at home. Because that's satisfying. I just am So Tired of the world acting like they are doing me a favor with their miserable, substandard, inadequate "services". Most schools do not have efficiency apartments, and if we were to take oncampus housing, we'd be required to have a meal contract -- essentially paying a small fortune to go to the campus facilities, and find out there is nothing to eat. He could have a micro-microwave and a teeeny 'frig in a town with no markets -- so where is he getting the food? He went to camp at this school, we did all the paperwork, met with food service, met with the staff, filled out paperwork to get him allowed to have food in his room --- and he lost 7 pounds in one week. They fed him one 8" pizza for lunch, and yogurt for breakfast. I drove in every day to bring his dinner. I can't do that for college.

Sorry to rant. We've tried the "we can do this" attitude, but really, some of this can't be altered or changed by paperwork. We all know that in the end, someone is using the wrong utensil, the sub is contaminating the serving line, etc.... Okay, okay, I'm done!

2

Share this post


Link to post
Share on other sites

One option is to expand your search area. There are thousands of Colleges. Not sure if you are in the US or which part of the country.

My son (not gluten-free), lives in a dorm with a full, beautiful kitchen on the first floor. I didn't have to delve into the gluten-free food thing, but I saw that they have choices including food provided & cooked or no food plan & cook in the dorm. Whole Foods is across from the campus. Groceries within walking distance as well as a good bus system. Scheduled bus runs for the dorms to Target, etc. Just to show you that there are schools that can work.

Dorm living is a great way to meet people, so its great for Freshmen. You may just have to continue looking.

3

Share this post


Link to post
Share on other sites

I'm sorry. This all really sucks. Reading your post was a big eye-opener for me. Both of my kids have celiac disease, and my oldest is 10. Hopefully in the next 7 to 8 years things will be better for us, but I'm not optimistic. I feel for you. I hope you can find something that really works for your son.

0

Share this post


Link to post
Share on other sites

Oh thank you ;) It is not unexpected, it just is irritating/depressing/frustrating and sucks a lot of the excitement out of the college search. And as for gorgeous dorm kitchens, he would never eat or cook in a common kitchen shared by 60-100 other students. The level of cc boggles the mind. My whole point here is that we can't expand the search, and the schools, for the most part, are blindly resistant to what they seem to feel is a big imposition. Like living gluten-free has been a walk in the park for HIM. With so many people with food issues, I just was so shocked that most schools are still using giant serving lines and are not voluntarily making accomodations (hello? don't know what's in your food? realllly?) just to attract students. Yeesh. I'm just yeesh-y today !

2

Share this post


Link to post
Share on other sites

My son's school & another school his friends go to have kitchens you reserve. He could have it every day, by himself with his own pans. He keeps the food in his fridge in his room. He can have a microwave in his room for the leftovers for lunch tomorrow.

If you won't consider other schools, you will have to figure out how to work with what you have available. Or fight for more. Either way, it's a good learning experience for him.

2

Share this post


Link to post
Share on other sites

My son is only almost 11 and we just had a big whine-fest about this potential future problem. :rolleyes: It's a hassle and it sucks. Our plan at the moment is for our kids to go to community college as high schoolers, and then transfer to wherever they want to go so they can live off campus. Of course there's always the possibility they'll really want that dorm experience.

I'd have him pick the one that is the best fit socially and academically, and then fight like hell to make them allow him to shop and cook safely (on campus or off) for himself. Out of curiosity... why are these the only schools you are considering? There are several great schools in my hometown (Portland, OR) where students don't have to live on campus and they have some of the best access in the country to all sorts of gluten-free options.

0

Share this post


Link to post
Share on other sites
fight like hell to make them allow him to shop and cook safely (on campus or off) for himself. Out of curiosity... why are these the only schools you are considering? There are several great schools in my hometown (Portland, OR) where students don't have to live on campus and they have some of the best access in the country to all sorts of gluten-free options.

His academic interests/career path is very specific, we are not millionaires, we have another child in college. Apartments here in my college town run about $2000K/month; he could get 3 roommates and pare that down but that adds "find roommates" to the mix. @kareneng, I am struggling with your tone of I am just not trying hard enough. Many schools flatly refuse microwaves or frig, or if they have them, they are too small to be practical (again, he's lived in a dorm already like that) OR if they had them, there's no source of food. We have considered/looked at many, many more schools than this. He has other medical issues that make all of us uneasy with him being on a campus without topdrawer medical care available (either on or off campus) and quite frankly, I kinda internally resent a world that says to fly him across the country just so he can eat properly, not because east coast schools CANT do it, because they WONT do it. And yes, if I sue them, I can MAKE them do it. Maybe. Again, I know all that. I am just saying it surely seems unfair (and don't anyone tell me life isn't fair. we are keenly, exquisitely, totally, aware of that)

1

Share this post


Link to post
Share on other sites

Who do you talk to when you you ask about food arrangements at each college?

0

Share this post


Link to post
Share on other sites

I sympathize for you. I'm so not looking forward to this. My 10.5 yr old is currently undergoing a gluten free trial and my 6.5 year old is diagnosed. Hopefully things improve!! Keep your chin up! ;)

0

Share this post


Link to post
Share on other sites

Who do you talk to when you you ask about food arrangements at each college?

I start with admissions, asking who to go to. Typically, I've already looked over the food service info on the website, including any ADA requirements or special diet forms. (If they don't have those things, you already know you're in uncharted territory). I exchange emails with a food service director, and then try to get referred to an actual dining hall manager (the difference in what a director says, and what the manager does, is stunning. so far, managers rule, and are much more helpful). At Syracuse, they also gave me the email of a tour guide who is also a celiac student so he could ask her questions. When we visit, I try to make an appointment with someone in food service or at least make sure we see the dining hall(s) but that is surprisingly difficult to do at some places. My son (reasonably) asked that we not be the family asking gluten-free questions at some overall admissions meeting. At Ithaca, he was referred to a student group that helps guide the special diet kitchen planning/meals. We have not visited schools that are patently resistant to being helpful. (And there are many) I have gotten emails from admissions and from food service saying everything from "we have it covered" to "we are clueless so what would you want". Those of you who have done college searching with sons know that the more mom does, the less we like any given school, so most of this is done on the dl while he just surveys the school as a whole. (Don't say it -- of course he knows how to advocate for himself, this isn't a lost opportunity to tilt at the windmill of gluten-free dining)

1

Share this post


Link to post
Share on other sites

My daughter is a senior in high school this year so I am looking at the same issues. Even worse, she is in the super sensitive category. She can't eat in restaurants, so I don't see how she can eat in a dorm. We needed to have a gluten free household. She will need to get her own apartment and live by herself. Just finding safe food will be an issue. We have a hard time with a lot of the food available in the store. We need to do farmer's markets and I grow much of it myself. Of course she won't be able to grow her own food in college. It is a real challenge.

Do a lot of schools insist on dorm living the first year?

1

Share this post


Link to post
Share on other sites

I went through the same path and after food service gave me a list of what they could provide me (a salad) for every meal I took that list and the emails between us and a note from my gastrointerologist to disabilities and the people in disabilities were really understanding and helped me through the rest of the process. I wish you luck and know where your coming from, my top school choice told me they could handle gluten free and because of that disabilities couldn't help me.

If he does end up cooking in a dorm some schools let you bring in a larger fridge for a small fee, I use a rice cooker and a slow cooker. I have a car on campus but if that isn't plausable than a lot of people will give rides to walmart or other stores.

I wish you luck and hope that his favorite school will understand and help out.

nicole

1

Share this post


Link to post
Share on other sites

Do a lot of schools insist on dorm living the first year?

I think many of them do, but getting an exception based on food issues can sometimes be done. Some of the schools would prefer you do that and get them off the hook. It has been tiresome to find out all the combinations of strategies at various schools, but maybe he'll just apply where he's interested, we'll see if he gets in , and make accepting based on further research about actually living at these places.

apartments for incoming freshmen is hard. I know here, apartment contracts for next year (2012-13) are being signed NOW through November, long before any potential freshman could be contemplating an apartment alternative.

1

Share this post


Link to post
Share on other sites

If you are looking for a college on the east coast check out the University of Hartford. I know several celiacs and others with severe food issues who went there and one who still does. They have on campus living that has a full kitchen, plus there were gluten-free options in the cafeterias, and there was an aisle of gluten-free food in the on campus market.

2

Share this post


Link to post
Share on other sites

I start with admissions, asking who to go to. Typically, I've already looked over the food service info on the website, including any ADA requirements or special diet forms. (If they don't have those things, you already know you're in uncharted territory). I exchange emails with a food service director, and then try to get referred to an actual dining hall manager (the difference in what a director says, and what the manager does, is stunning. so far, managers rule, and are much more helpful). At Syracuse, they also gave me the email of a tour guide who is also a celiac student so he could ask her questions. When we visit, I try to make an appointment with someone in food service or at least make sure we see the dining hall(s) but that is surprisingly difficult to do at some places. My son (reasonably) asked that we not be the family asking gluten-free questions at some overall admissions meeting. At Ithaca, he was referred to a student group that helps guide the special diet kitchen planning/meals. We have not visited schools that are patently resistant to being helpful. (And there are many) I have gotten emails from admissions and from food service saying everything from "we have it covered" to "we are clueless so what would you want". Those of you who have done college searching with sons know that the more mom does, the less we like any given school, so most of this is done on the dl while he just surveys the school as a whole. (Don't say it -- of course he knows how to advocate for himself, this isn't a lost opportunity to tilt at the windmill of gluten-free dining)

That's quite a complicated process! I really feel for you for all the work you've had to do. I was wondering if the diasability offices could give you better information. I used to work for a big public university and they don't really cover much on how disabilities are handled so it doesn't surprise me at all that some people are clueless. Most admissions offices might not even consider Celiac a diability but technically (by law) it is. They would automatically refer anyone in a wheelchair or with vision impairments or needing a sign language interpreter to the disability office. But celiac or food allergies are a different story (if they have even heard of celaic or know what gluten is you are doing good). I wish you luck finding the right school!

0

Share this post


Link to post
Share on other sites

Some schools treat it as a disability issue, others just want to accomodate it as another special diet. Celiac is different than an allergy, so it just depends on how educated the school is, or wants to be. If its a disability, there are all sorts of legal issues and forms and doctor paperwork so I'm not in a hurry to have that be the choice!

0

Share this post


Link to post
Share on other sites

If its a disability, there are all sorts of legal issues and forms and doctor paperwork so I'm not in a hurry to have that be the choice!

I think it depends on the school. My DD went to Northeastern and her enterance essay was about her joy of finding out she could still have a Snickers bar on the diet. We had to do no paperwork at all and they were very helpful. She had a room of her own and her own kitchen and the only hassle we had was getting a refund on the meal plan.

You may want to contact the disability office in each of his chosen schools and find out what the procedure would be. It might be easier than you think and if it isn't then you could cross it off the list.

1

Share this post


Link to post
Share on other sites

I think it depends on the school. My DD went to Northeastern and her enterance essay was about her joy of finding out she could still have a Snickers bar on the diet. We had to do no paperwork at all and they were very helpful. She had a room of her own and her own kitchen and the only hassle we had was getting a refund on the meal plan.

You may want to contact the disability office in each of his chosen schools and find out what the procedure would be. It might be easier than you think and if it isn't then you could cross it off the list.

The difficulty I've had so far at least, is that schools who have made "accomodations" by having any sort of gluten free food do not, as a result of that gluten-free food, consider celiacs eligible for any other accomodation. You don't need a kitchen if we are feeding you in the cafeteria kind of thing. I've also gotten several "well, we'd need to see whether he is accepted before we discuss it" answers. But yes, usually we talk to disability and food service. Or both.

1

Share this post


Link to post
Share on other sites

I feel your pain. It was something we asked the colleges my daughter applied to last year. She just started college last week. She has not been diagnosed but knows gluten bothers her. Eating at home she was basically on a gluten light diet because she knew too much made her sick. I had blood work done a couple weeks ago...but should have known it probably wouldn't come back positive...especially eating gluten light. Now she's in college...no diagnosis and realizes it's going to be very difficult to eat gluten free in the dorm. When I talked to the head of the kitchen in June at orientation the first thing she said was "is she officially diagnosed?"...told her the situation and she said well, let us know what we can do for her..but also mentioned a doctors' note. We were a little misled at the orientation...during those meals things were labled and every meal had gluten free main meal options...and even gluten free desserts. Now she's on campus and there aren't main gluten free main dishes. Just a little tiny refridgerator in the cafeteria with gluten free foods. Kind of sucks for her. I told her to just eat the best she could and if she's feeling awful she'll have to talk to someone about her meal options. She knows gluten makes her feel sick...I hate that she has to get that official diagnosis to really have any options as far as what the school will do for her.

Good luck with your search! I hope you find a school that works and works with you!

1

Share this post


Link to post
Share on other sites

I feel for you! My husband (who also has celiac as does my 3-year-olds daughter) is a manager for a college food service. He has worked with many of the chefs on campus to provide a lot of gluten free options for students who need it, but it was difficult. I definitely agree that talking to disability services is needed, as well as the hall food service managers, but see if you can actually talk to the chefs at the residence halls - they are often the ones who order food stuffs and can make multiple types of gluten free dishes. One of our friends, who is a chef at a residence hall, had a blast coming up with gluten free recipes for a gluten-sensitive student in his hall. Admissions don't know a dang thing - don't go through them. But talk to the food service people, and have your son sit down with the chef and food service manager of the residence hall he is in as soon as he can, if that is the route you take.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,695
    • Total Posts
      921,779
  • Topics

  • Posts

    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,701
    • Most Online
      3,093

    Newest Member
    Dtroutmann
    Joined