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Pity Party/ College Search


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30 replies to this topic

#16 dilettantesteph

 
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Posted 02 September 2011 - 05:14 AM

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?
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#17 allergyprone

 
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Posted 02 September 2011 - 05:31 AM

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
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#18 ryebaby0

 
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Posted 02 September 2011 - 06:05 AM

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.
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#19 sariesue

 
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Posted 02 September 2011 - 06:13 AM

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.
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#20 GlutenFreeManna

 
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Posted 02 September 2011 - 09:31 AM

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!
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#21 ryebaby0

 
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Posted 02 September 2011 - 10:20 AM

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!
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#22 ravenwoodglass

 
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Posted 02 September 2011 - 11:54 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#23 ryebaby0

 
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Posted 02 September 2011 - 02:04 PM

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.
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#24 carecare

 
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Posted 02 September 2011 - 04:50 PM

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!
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#25 Mdhriggin

 
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Posted 02 September 2011 - 06:37 PM

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.
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#26 shadowicewolf

 
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Posted 03 September 2011 - 10:11 AM

celiac IS considered a disability by the ADA. Go to the disability office of said school and talk to them first, if you have a problem (once enrolled), go to them. That is what they are there for, to assist those with diabilities.

Would you not have to have a 504 plan for a person with food allergies? Would you not have to report that as well "just in case"?

Really, before you make up your mind, contact each schools DA office.

I'm very much used to dealing with disability offices and such <_<
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#27 AzizaRivers

 
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Posted 05 September 2011 - 02:13 PM

I can see that you're at your wit's end about this. I don't have any advice--frustration with my university's lack of knowledge or accommodation was one of the reasons I resorted to living at home after the first 2 years. I just wanted to say that I've been there, and it sucks. It's hard to go too far away because then you've got travel costs during breaks, and it makes your head explode when schools simply WON'T do what they would be able to do if they were willing.
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Celiac diagnosed October-November 2010 (blood test negative, biopsy inconclusive after gluten-free for 6 weeks, miraculous diet results).

October 2010: Gluten free.
November 2010: No HFCS or artificial sweeteners.
March 2011: Gradually fading out soy.

#28 ryebaby0

 
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Posted 14 September 2011 - 06:21 AM

celiac IS considered a disability by the ADA. Go to the disability office of said school and talk to them first, if you have a problem (once enrolled), go to them. That is what they are there for, to assist those with diabilities.

Would you not have to have a 504 plan for a person with food allergies? Would you not have to report that as well "just in case"?



I am not here to belabor the point, but for the edification of anyone else who will have to do this:

IF a school is providing gluten free food --- any amount of it, any kind of it, even if they say "you can have a salad every meal for four years" or even if they say "we label all our food clearly" and the labels serve to tell you there's nothing safe to eat ---- if a school is doing ANY of that, the disabilities office sends me to food service, who shows me what they are "doing" and that is that. I have been told TWICE via that route that if I find that inadequate, my child should go somewhere else. Or stay home. Yes, they suggested he commute as a solution to their unwillingness to treat celiacs like people who might not want to have the same !@#$%@ food every lunch for four+ years.

I am aware ADA includes celiacs. So are the universities. I am venting (okay,now I'm ranting!) about how much effort it takes to get them past "letter of the law" and into "how can we help you feel at home/not starve"
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#29 cyberprof

 
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Posted 14 September 2011 - 01:33 PM

I am not here to belabor the point, but for the edification of anyone else who will have to do this:

IF a school is providing gluten free food --- any amount of it, any kind of it, even if they say "you can have a salad every meal for four years" or even if they say "we label all our food clearly" and the labels serve to tell you there's nothing safe to eat ---- if a school is doing ANY of that, the disabilities office sends me to food service, who shows me what they are "doing" and that is that. I have been told TWICE via that route that if I find that inadequate, my child should go somewhere else. Or stay home. Yes, they suggested he commute as a solution to their unwillingness to treat celiacs like people who might not want to have the same !@#$%@ food every lunch for four+ years.

I am aware ADA includes celiacs. So are the universities. I am venting (okay,now I'm ranting!) about how much effort it takes to get them past "letter of the law" and into "how can we help you feel at home/not starve"

Yikes! I feel your pain as my son starts next week. When a normal student is looking for a school, it is overwhelming -costs, scholarships, aid, location, majors. It's hard enough to pick a school without the added celiac problems. Can you imagine eating only salad and hamburger patties for a year as some schools have suggested? Or paying for a meal plan and not getting to eat safely? Plus add in my son's dairy intolerance. And my son is 6'2" and 145 pounds so he still needs to gain weight so he eats 4-5 meals a day.

My son ended up picking to the University of Washington, not his first choice but we are 30 minutes away so he can live in the dorms and come home for food or we can bring him food. They don't make you buy the whole meal plan so no wasted money. And they allow a microwave and fridge in the room. He is going to eat salads, eggs, plain meats and veggies from the cafeteria and he'll have a stash of food in his room: pre-cooked rice, canned tuna, chili and soups, hot dogs (nitrate free!), beef jerkey, lunchmeat, thai kitchen rice noodles, gluten-free pretzels, corn chips, gluten-free cookies, corn chex and rice krispies, almond milk, canned pears and peaches, applesauce. He's in walking distance of a supermarket (this is not true at many schools). He has the number of the gluten-free pizza place memorized. I'm going to make him a supply of granola bars. If it is too hard, he'll get on the list for a dorm with a kitchen or we'll figure something else out. Good luck to Ryebaby's kid amd feel free to rant.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#30 cyberprof

 
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Posted 25 September 2011 - 05:12 PM

Just a follow-up to Ryebaby and as an FYI to anyone who reads this message while searching the forum later:

My son (undiagnosed but with a doctor's note about gluten sensitivity) moved into the dorms at the University of Washington Seattle yesterday. He's discovered that there are gluten-free labels on each entre/side that are gluten-free and each meal has at least one gluten-free entree. So our backup plan of chili and canned fruit in his room is less of a worry!

Now this might not work for someone supersensitive but for him it will work. No asking questions, no special plan.

Tonight he had shrimp pad thai and was the happiest kid. He texted me to let me know that he was getting enough to eat! I'm relieved too. Wish all schools would do this.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States




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