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If you have a Celiac kid or serious allergy concerns, can you share how you researched uni/colleges?


cintinative
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I have many years to think about this, but since the prevailing advice seems to be "have some idea of what your safety and reach schools might be" and "know how much it is going to cost,"  I wanted to ask the fellow allergy-moms/Celiac moms on here how they accounted for this.  I can pull up a list of schools that have the science majors we are considering but how do I know if they will accommodate ds' Celiac? I found a few websites with lists of "Celiac" friendly colleges--about 15 on each list maybe.  Is there another place to ask?  

This does seriously impact my ds' daily life, and will for the foreseeable future. If he will be exempt from a dining plan because of the Celiac, will there even be anywhere he can make his food? If he will not be exempt, will they have something besides salad for him to eat (he's not a fan)?  

I would love to hear some BTDT advice from fellow allergy mommas on how this factored into your searches. 

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Your best bet is to contact the food service at colleges you are thinking about. I know it's a bit maddening, but it can work.

My younger one completed a two-year degree and is headed to a four-year as a commuter later this month. I was prepared to send her with at least one meal every day, but we found out that her college is involved with FARE (foodallergy.org) and that they could accommodate her. She's eaten there several times already with getting things set up, and they seem to know what they are doing as far as we know. So I will get her a small meal plan at first to see if that will work. It's a little scary, but she's enthused.

She has a friend from homeschooling who has much more significant allergies including celiac, and he's done very well at another college in our state with their meal plan.

I will message you with the names of these two colleges. 

Edited by G5052
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And visit. One thing that impressed me about UAH was that the cashier stopped us at the door to explain the separate allergy free lines, and that other food was not allowed to cross that line, there were separate plates, etc. My food allergy isn't one of the big ones, and I have been accidentally contaminated several  times in cafeteria settings, so seeing a system where they were so concerned about cross contamination for at least the big ones was really nice. 

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My ds has a life-threatening allergy to all tree nuts, numerous fruits (basically fruit grown on trees), and shellfish. His allergies are severe enough that even a tiny taste of something he is allergic to will cause his throat to swell, blisters on his tongue, and make breathing difficult. We tried allowing him to live on-campus but it was just too limited making sure he was safe. We ended up having his allergist write a letter to the university stating that his life was being endangered by requiring him to live on campus (his school required 2 yrs of on-campus/dining hall).  He ended up being approved for off-campus and we rented him an apt. 

That approach may not be ideal, but it was the best option for him to lower his stress about eating and gave him the freedom to eat without paying for a meal plan.

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TO be honest it was just really time consuming and painstaking...

I will say that even since I began researching about four years ago, hundreds and hundreds of universities have made vast, sweeping changes and improvements.

I Would recommend joining the facebook group Parents of College Students with Food Allergies.  Also join the FARE page which has occasional helpful info.  Purchase a NIMA sensor for Celiac.  

Really what we did was make the list of colleges that my son was interested in, first.  THEN we researched the dietary situation, how they handled food allergies, and spoke directly with the dietician.  Really, only one university got such a bad score- a total F for food being horrible in general, as well as lack of knowledge from the staff and it was an Ivy League School, disgusting food, complete lack of knowledge and it was run by Bon Apetit a nationwide college service chain.  So, I would steer clear of anything run by Bon Apetit.  Sodexo actually does a great job and has the Simple Servings Stations.

To be honest, most of the schools we toured, and most on our list do a fantastic job and had lots of healthy food choices.  My son has opted to meet with the chef at Penn State the day before move-in and order weekly lunches and dinners to be picked up at a specified time.  That does not mean he can't eat in the dining hall when he's there with friends, he just has to navigate carefully, ask for ingredient lists, and ask for the staff to get food from the back if it's near anything with nuts, while being served, or being served by customers (self serve.)  He had two meetings with the dietitian at PSU, toured the dining halls in summer and has spoke to the chef of his dining hall over the phone.  He was AWESOME, already learned my son's name, took down his phone number, exchanged info, set up a meeting for the day before official move-in.  If something happens it won't be for lack of extreme diligence and effort on both their part and my son's...we feel very good about it overall.

I would encourage you to stay very positive, since the universities are getting better and better at this!

 

FYI every dining hall at PSU has a celiac station with cereal, bread, bagels, rice cups, pre packaged and individually labeled snacks and clear signage that other food items are to be kept away.  They also can make made-t0-order meals for your kid up to three times per day (most kids just do two and eat breakfast in their room or grab a bagel), and they also have clear signage.

Edited by Calming Tea
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55 minutes ago, Calming Tea said:

\

Really what we did was make the list of colleges that my son was interested in, first.  THEN we researched the dietary situation, how they handled food allergies, and spoke directly with the dietician.  Really, only one university got such a bad score- a total F for food being horrible in general, as well as lack of knowledge from the staff and it was an Ivy League School, disgusting food, complete lack of knowledge and it was run by Bon Apetit a nationwide college service chain.  So, I would steer clear of anything run by Bon Apetit.  Sodexo actually does a great job and has the Simple Servings Stations.

 

Thank you so much. I wanted to ask--were you able to research the dietary stuff over the phone, or was it necessary to visit the school? I was kind of hoping that we could do a bit of pre-screening over the phone, and if that sounded decent, then consider a visit.  However, if there were all kinds of problems on the phone, we would really have to reconsider.

Do you know how to find out who runs the food service at a given college? Is it on the website usually?  I am off to google a few to check. 

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My ds is heading off for his second year of college next week and he has severe food allergies and has been gf since he was 3 years old. At all of the colleges we have visited, there has been some sort of accommodation for food allergies. Some have a section that serves only allergen free food (assuming your allergies are the common ones) and they cook the food separately to avoid cross contamination. Many also have gf prepackaged snacks and treats available. At my ds’ college, they have both these things and they also list the food ingredients    for whatever they are serving each day at the location it is being served. The school was also very helpful in having someone that could walk my ds through everything available to him (which my ds, of course, never actually took advantage of). When we visited ds’ school during his senior year, the dining hall staff was friendly and helpful and knew just what my son could eat. They also offered to make special food for him. That was a big plus for that school and part of the reason we were so happy with his decision to attend there.

I would start with sending out a standard email to all the schools your student is interested in to see how they handle things, but then make visits and actually eat in the dining hall of schools that he is serious about and/or accepted to. I would think there would be very few schools these days unable to accommodate allergies, but some of them do it much better than others. We ruled out one school based on our experience eating in the dining hall. My dh tried to find out if my ds could eat something and was given a 40 minute runaround. At the time, we decided if it was so difficult for my dh to get a simple answer about the food they were serving, there is no way my ds would get the info he needed. I believe their policy was to rely on their allergy-free station for all allergies and that would have been very limiting and frustrating for my son because that station served things like a plain chicken breast with applesauce and green beans. It was also called the healthy food station.

ETA: If there is a school your ds wants to attend that does not offer good options for him in the dining hall, then seek a special housing accommodation for him where he is able to have a room with a kitchen. Many colleges would have no problem with granting such an accommodation imo if you get a doctor’s note. A friend of mine recently was granted permission for her dd to live at home her first year (they usually require freshmen to live in dorms at this college) because of her severe food allergies.

 

Edited by Mom0012
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15 hours ago, cintinative said:

 

Thank you so much. I wanted to ask--were you able to research the dietary stuff over the phone, or was it necessary to visit the school? I was kind of hoping that we could do a bit of pre-screening over the phone, and if that sounded decent, then consider a visit.  However, if there were all kinds of problems on the phone, we would really have to reconsider.

Do you know how to find out who runs the food service at a given college? Is it on the website usually?  I am off to google a few to check. 

 

It's a combination of checking the website, calling, and last, visiting...you can also join facebook groups such as "....College name here" Parents of Students with Food Allergies" or just "College name parents" ie Penn State Parents and then you can ask on there, parents are very helpful with this stuff! If you say your kid is only seriously interested but due to severe food allergies you'd like to ask parents what the situation is, they will probably allow you to join even if your kid is not accepted yet.

I was not extremely surprised about UPenn, that the food allergy situation wasn't awesome.  I didn't expect it to be HORRIBLE, but due to the research online, reading parents comments, and the general lack of detailed info from the Dining Manager, I didn't expect it to be at the top of the list.  But of course since it's an Ivy League school I was absolutely shocked at how abysmal it was.  (They have a whole group of people petitioning the school to change things there, but I think a lot of the kids just start eating out around the city, so they're not too upset about the dining hall.)

To be honest, we ended up accepting at Penn State before we visited!  It was a bit of a gamble but here's what happened- we visited eastern colleges in January so my son could feel what the cold was like and also that's just what worked for us.  There was a big freeze (this was a week before the Polar Vortex) and a snow in Central PA and all the roads were closed.  Due to extreme cold conditions the tours were canceled and the roads from Philly to central PA were not all cleared.  Obviously, we felt it was safer to skip it.  

His acceptance came a week after we returned home and we accepted his acceptance early due to worrying about housing situation....we figured we could always rescind the acceptance if he changed his mind...

But I felt safe about that because of the Penn State Parents group, their food allergy parents group, multiple emails with the dietitian and hearing that their dining halls were amazing, overall.  And sure enough after visiting and seeing for ourselves they were right.  Obviously it would be better to visit first, before accepting 🙂 

Edited by Calming Tea
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Well, my kid with milk, egg, and peanut allergies can't get the Dining Coordinator to answer her emails, and my dd chooses not to elevate it to the Disabilities department.  But she's living at home and commuting to school, so we are making do.  There is a Subway on campus (safe for her to get specific sandwiches) and an Einstein Bros. Bagels, plus a grill place that presumably she could get a plain hamburger.  This semester, she only needs to eat on campus twice a week for lunch.  

It's not easy.  I don't think a celiac kid would do well here relying on the Dining people, but it is very common to live off campus, so adjustments can be made, I think.

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1 hour ago, perkybunch said:

Well, my kid with milk, egg, and peanut allergies can't get the Dining Coordinator to answer her emails, and my dd chooses not to elevate it to the Disabilities department.  But she's living at home and commuting to school, so we are making do.  There is a Subway on campus (safe for her to get specific sandwiches) and an Einstein Bros. Bagels, plus a grill place that presumably she could get a plain hamburger.  This semester, she only needs to eat on campus twice a week for lunch.  

It's not easy.  I don't think a celiac kid would do well here relying on the Dining people, but it is very common to live off campus, so adjustments can be made, I think.

 

Do you mind PM'ing me the school your dc attends? 

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  • 2 weeks later...
On 8/18/2019 at 2:17 PM, perkybunch said:

Well, my kid with milk, egg, and peanut allergies can't get the Dining Coordinator to answer her emails, and my dd chooses not to elevate it to the Disabilities department.  But she's living at home and commuting to school, so we are making do.  There is a Subway on campus (safe for her to get specific sandwiches) and an Einstein Bros. Bagels, plus a grill place that presumably she could get a plain hamburger.  This semester, she only needs to eat on campus twice a week for lunch.  

It's not easy.  I don't think a celiac kid would do well here relying on the Dining people, but it is very common to live off campus, so adjustments can be made, I think.

 

I think this is the vast minority of colleges, nowadays, but they do exist.  We read reviews for Azuza Pacific, for example that were horrible concerning food allergies.  My son had no interest in going there but I was looking for my dd who doesn't have allergies and just came across a review of them.  I think you have to be more wary of (according to my somewhat subjective thoughts after reading hundreds of websites and facebook posts from the FA parents)

-Small private colleges (don't have the funds for extra staffing required)

-commuter colleges (most kids don't live there, why would they hire great staffing for food allergies etc.) 

...but of course always do your research on any college 🙂

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