Going away to college with LTFA

[ajasfolks2]

I just finished my first year with peanut and milk allergy.  I would be happy to talk with you, but I am leaving for Europe tomorrow morning.  You are welcome to pm me and I can give you my mom`s email address.  She left this board and won`t post, but she would be happy to talk to you by email.  There was good and bad, but mostly good.  We did have lots of problems initially and I had to file with DOJ, but most of it worked itself out.  Most of what people posted on this thread about 504s is not relevant to college.  The standard is not FAPE as it is for K - 12.  I had a 504 for K - 12, but it was totally useless for college.  I did make it through the year reaction free as far as school meals, did not miss out socially, have a ton of friends, and got involved in lots of activities.  My friends were very considerate, but the university repeatedly let me know that they found it inconvenient to accomodate me.   The organizations I joined had no problem accomodating me at all.  The problem was with the school.  (UCLA)  They seemed to think that because it is so hard to be accepted there, that they could refuse accomodations.  PM me with an email address and my mom can fill you in.

Don't you think it might have been more helpful to post details about what IS relevant as part of the sharing process and paying it forward, rather than just a slam and run?

[Macabre]

That is so cool. I know DS went to a speech tournament at Harvard this year, and some of the events were at Lesley (the center of the suit last year). I will say that at least as far as dining services went, Lesley seemed amazing.

One of DS' friends is heading to UCLA next year. I believe she got a full ride, which is very cool.

[CMdeux]

I am going to post two pictures to demonstrate why TRUSTING a university dining services staff-- even one that seems to make all of the "right" noises wrt to allergy awareness, might not be entirely the best of things.




The other worthy thing is this particular statement, which... while... um... accurate and definitely INFORMATIVE, does little to provide reassurance to anyone that has anything like a moderate (never mind low) threshold. 

Food Allergy/Intolerance Disclaimer: {} is committed to identifying ingredients that may cause reactions for those with food allergies and intolerances and trains employees on safe handling procedures to minimize risk; however, because foods are prepared in a commercial kitchen, there is always some risk of cross contact of allergens and gluten. Consumers should also be aware of the risk that manufacturers of the commercial foods {} uses may change the formulation of ingredients or substitute other ingredients at any time, without notice.

[CMdeux]

I pulled those screenshots off of my DD's institution's current dining webpages this morning.   

The reason why I posted them isn't to mock the sheer stupidity of their "allergen filter" (which is obviously NOT NOT NOT to be trusted blindly)-- but to point out that if they don't recognize that "nutella" cheesecake contains treenuts, what else aren't they looking at??  This is a compound ingredient that contains not only hazelnuts, but also milk. 

What that indicates to me is that food service errors related to that very fundamental error are probable in that setting. 

"Does this contain eggs?"

"Let me look in the notebook.  Nope."

or

"No.  No eggs."  (Because it contains "coleslaw" or "potato salad" or "dijonnaise.")

[BensMom]

Yikes, CM. That's a bit scary.

DS's school sure sounds like they're on the ball. I talked to the nutritionist and she said that ds will fill out a card this summer, and then they set up an appt with him. They'll introduce him to the chefs and walk him around the dining hall to show him how it all works. Food with allergens is labeled. I don't actually remember seeing allergen labels (like on the pizza, which obviously contains milk), but they did have a warning in the dessert area. The nutritionist also said that their pesto sauce has no pine nuts and they don't fry the boardwalk fries (which they occasionally serve) in peanut oil.

You can also check ingredients online or in kiosks in the dining hall. You can also order ahead I think to have your meal prepared--something I'm sure ds will never do.

[CMdeux]

And see-- all of that sounds exactly like this institution's policies.   That is, they have searchable databases for all uni dining, notebooks with priority ingredients, individual dietician available, etc. etc.

What worries me some is that they don't seem to quite grasp the seriousness of food allergy as opposed to lactose intolerance, Halal/Kosher, etc.  Exhibit A would be the two screen grabs, both of which are SUPER obvious.

It's equally clear that they rely upon manufacturer reporting and are NOT reporting shared lines/processing, even where that info is available quite readily (because I know-- from experience, that is-- that there is no such thing as uncontaminated supply chain for the particular item). 

They also don't treat sesame as an allergen at all.   

There's a huge part of me that wants to call them up and say "Ummm... you guys have only seen these kids here and there so far-- but they're COMING, and you are SO not ready..."

[Macabre]

I assume no restaurant gives us shared lines. And we eat out a lot. I couldn't really see the pictures until I opened them in another window and then. It clearly, but I'm assuming I was seeing Nutella as an ingredient in a "nutfree" dish. Crazy.

I assume colleges will be a lot like restaurants.

[GoingNuts]

DS's school sure sounds like they're on the ball. I talked to the nutritionist and she said that ds will fill out a card this summer, and then they set up an appt with him. They'll introduce him to the chefs and walk him around the dining hall to show him how it all works. Food with allergens is labeled. I don't actually remember seeing allergen labels (like on the pizza, which obviously contains milk), but they did have a warning in the dessert area. The nutritionist also said that their pesto sauce has no pine nuts and they don't fry the boardwalk fries (which they occasionally serve) in peanut oil.

You can also check ingredients online or in kiosks in the dining hall. You can also order ahead I think to have your meal prepared--something I'm sure ds will never do.

[/b]

Bold Mine.

DS's school offers this option, which DS has never, ever even considered doing, which is a shame because he could have had a much more diverse diet if he had been willing to do so. 

Bensmom, your DS's school was well known several years back for being a leader in dealing with allergies and celiac.  When my friend's son started there in 2006, they were super-accommodating. 

[BensMom]

DS's school sure sounds like they're on the ball. I talked to the nutritionist and she said that ds will fill out a card this summer, and then they set up an appt with him. They'll introduce him to the chefs and walk him around the dining hall to show him how it all works. Food with allergens is labeled. I don't actually remember seeing allergen labels (like on the pizza, which obviously contains milk), but they did have a warning in the dessert area. The nutritionist also said that their pesto sauce has no pine nuts and they don't fry the boardwalk fries (which they occasionally serve) in peanut oil.

You can also check ingredients online or in kiosks in the dining hall. You can also order ahead I think to have your meal prepared--something I'm sure ds will never do.

[/b]

Bold Mine.

DS's school offers this option, which DS has never, ever even considered doing, which is a shame because he could have had a much more diverse diet if he had been willing to do so. 

Bensmom, your DS's school was well known several years back for being a leader in dealing with allergies and celiac.  When my friend's son started there in 2006, they were super-accommodating. 

Good to know, but CM's screen grabs are a bit scary. They seem to be doing everything right, but are obviously totally blowing it. How can they not label nutella and honeynut cheerios for nuts??

[Macabre]

I assume no restaurant gives us shared lines. And we eat out a lot. I couldn't really see the pictures until I opened them in another window and then. It clearly, but I'm assuming I was seeing Nutella as an ingredient in a "nutfree" dish. Crazy.

I assume colleges will be a lot like restaurants.

Sorry--was posting quickly. I assume restaurants don't give information about shared lines. We either assume something is likely safe at a restaurant based on the food. For instance, I assume all bread products are unsafe for me but are likely safe for DS. All desserts are assumed unsafe.

We eat out a lot. I guess with PA only I don't think DS will have a tough time in college, because it's probably a lot like many restaurants.

In the town we moved from, there was a college associated with our denomination. In fact, my congregation helped found this college. Anyway? We were there for events a lot. And we often went to lunch there on Sundays. DS did pretty well eating there. I am hoping where ever he goes it will be similar--or better.

[GingerPye]

just thought I'd chime in about our experience so far --

DD is attending a state school starting in August.  We've met with the dining director and she was fantastic to work with.  I also have talked with her by phone a few times.  She's had lots of experience with food allergic students.  She said all the right things --- DD will be able to order ahead -- now we have to figure out the right dining plan for her needs.  We go to orientation in July and the dining director will have a safe meal for DD at the orientation lunch.  We'll see how that goes ...

it all sounds good ...

We'll see if it all works out as nicely as it sounds.  Dd is worried that she'll get the same few meals all year long, LOL.  That may be ... but at least they would be safe, hopefully. 

[Macabre]

CM now that I am on my laptop, I can see the pictures more clearly.  Did you talk about the food services director about this?  Yikes.  What negligence in labeling for the obvious.  Yeah, I wouldn't trust them either for the not-so-obvious.   

[CMdeux]

Not directly-- hasn't been a good time to, since DD won't be utilizing a dining plan anyway.

They know that they can't really prep food for someone like her.  At least I hope that they do, given the reality of their food prep.  This is a large state flagship, btw-- so about 7.5K resident students ON-campus, and another ~20K are commuters or living off-campus.  They do a HUGE volume in some pretty small prep spaces.  I get that this is a serious challenge.  They also have rotating menus and constantly have "new" items-- and are extremely vegan-friendly, which is a bad combo for anyone with nut allergies.  EVERY dining facility on the campus has at least one nut-laced item on the menu at any one time.  Most are heated, to boot-- satays,moles, curries, stir-fries, etc.

During orientation, DD had (literally) nothing to eat.  Well, except what I packed for her.  There was also little flexibility in being able to go off on her own-- so she wound up ditching part of the afternoon session the first day so that she could buy herself a couple of bags of Doritos from a food vendor and a vending machine.  I also grabbed her an orange, but she had to wash it in a restroom sink. 

Now, the dorms do have kitchen facilities, but they are shared, and only the larger residence halls have them.

My impression is that they have some reasonable measures in place to help students who have high thresholds.  There are pretty good software sorting algorithms (well, obviously only as good as the person entering INGEREDIENTS, but anyway...) that can help narrow things down. 

But they are really new to this with students like DD.  Disability services was very surprised when we reported the issue with dining services-- and the issue that we had with the honors college, where the advising "waiting room" was loaded with peanuts and tree nuts to such an extent that DD had a horrible asthma flare just popping her head in the doorway.


We will definitely be talking with them again before the fall orientation/intake.  They HAVE to give us more detail about scheduling ahead of time so that we can figure out work-arounds. 

[sneaker]

Thanks for posting, CMdeux.  It is keeping me aware that colleges are not as food allergy aware as I was thinking they would be for my dd.

Those errors they made with Honeynut Cheerios and Nutella should have been seen and corrected by someone on the staff before they listed the food.

And I agree with you, that Nutella is a compound ingredient.  So why is that listed as an ingredient.  And Nutella is a brand name.

Also, just for your info, your pictures you posted I can only see when logged in.

[Beach Girl]

We found so much variation in the level of awareness of the schools.  UC San Diego is fabulous with food allergies.  They want to be the gold standard in the U.S. for how colleges handle food allergies.  UCLA, by comparison, still doesn`t realize that margarine, mayonaise, tortillas, and pancake mix are not ingredients, no matter how many times I tell them that.  They think if tuna salad lists "tuna, mayonaise, pickle relish, celery, and eggs", that is an ingredient list.  It is pretty pathetic that they are so clueless.  I end up having to avoid foods that might be safe if only they would provide accurate information.