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Pity Party/ College Search


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30 replies to this topic

#1 ryebaby0

 
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Posted 01 September 2011 - 08:36 AM

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
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

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#2 allergyprone

 
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Posted 01 September 2011 - 08:50 AM

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
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#3 StephanieL

 
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Posted 01 September 2011 - 09:10 AM

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.
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#4 ravenwoodglass

 
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Posted 01 September 2011 - 09:14 AM

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
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)

#5 eatmeat4good

 
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Posted 01 September 2011 - 09:16 AM

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.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#6 ryebaby0

 
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Posted 01 September 2011 - 09:26 AM

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
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

#7 kareng

 
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Posted 01 September 2011 - 09:44 AM

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.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#8 melikamaui

 
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Posted 01 September 2011 - 02:43 PM

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.
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#9 ryebaby0

 
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Posted 01 September 2011 - 04:20 PM

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
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

#10 kareng

 
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Posted 01 September 2011 - 04:30 PM

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.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#11 domesticactivist

 
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Posted 01 September 2011 - 05:04 PM

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.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#12 ryebaby0

 
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Posted 02 September 2011 - 04:12 AM

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
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

#13 GlutenFreeManna

 
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Posted 02 September 2011 - 04:25 AM

Who do you talk to when you you ask about food arrangements at each college?
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#14 Roda

 
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Posted 02 September 2011 - 05:01 AM

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

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#15 ryebaby0

 
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Posted 02 September 2011 - 05:10 AM

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
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




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