Can't accomodate food allergies....my experience....

[cathicool]

I wrote this on 9-1-12.....
Really struggling with our ADR's and my son's 15 food allergies. Our last visit to WDW in 2009 went great--no real issues. This time around, we are getting really close to our arrival date and very few chefs have contacted us (yes, filled out all the forms and had a conversation with special diets). 3 restaurants out of 10 have contacted us, including one restaurant which told us to bring my childs food. Then they called me back and told us that they were serving something my child has an airborne allergy to, so we should "think about" another ADR.

Really bummed and worried about our upcoming trip......
__________________

and now today, 9-11-12.....I don't even want to go....and this is my daughter's birthday trip. She's turning 8 on Sunday.

So I have come to accept this is our last trip to disney. We leave in 2 days, I still don't have all of my 9 year old son's food worked out and most locations can't (won't?) accomodate him. So I am bringing food to a bunch of restaurants, but they won't heat any of it up and in 90 degree weather, I can't take the risk of not having a cooler full of ice to carry his food in, so his food will be cold when it is time to eat it. Try explaining to a 9 year old while your eating appetizers, dessert and all sorts of things, why he has cold, mushy french fries and cold hot dogs, that I had to make 3 hours ago before we left the villa. Or maybe he can just eat potato chips for dinner.

If this had been conveyed to me sooner, I would not have planned the trip. But to be into it now for airfare, park tickets, accomodations, etc....plus the disappointment of my other 2 kids would be a travesty.

I've got chefs calling me today, telling me they will try to look into this a "bit" more......I've been calling, emailing for weeks! I understand they are busy, really, I do. I know it takes alot of energy to feed just 1 child with food allergies--really, I do. But if you can't do it.....then I should've just been told that, instead it's been a "dance" or the infamous "I'll call you back".

I'm totally stressed out.....and I'm sure I will be, the whole "vacation". So sad......

 

[jmartinez1895]

I know that you must be ready to pul your hair out. I am so sorry that you have had such a hard time just getting a strait answer. I noticed that you said you are in a villa. Instead of writing off Disney forever so you think it may be possible to play your days with breaks to go back to your villa to eat. Don't they have kitchens in them? ( I could be wrong, but I was thinking that they do). You could do a short shopping trip or have a local place like whole foods deliver and then fix meals and put them in the fridge. When your ready to eat just pop it in the micowave and get back to the park. I know it is not ideal, but it seems like it would be better that cold soggy food for your child.

 

[cathicool]

yes, we do have a kitchen and I will be doing a Whole Foods run. But to have to go back to the villa for every meal would really be awful. I have 3 kids.....all our lives revolve around my DS with his allergies, high functioning autism, etc. My 2 girls probably don't even realize half of the accomodations that are made for him, but I do-- I try not to make it seem so lopsided.

My girls like to eat. My daughter is turning 8 while we are in disney. She requested seafood for dinner. She eats salmon, sushi, hummus out of the container. Definitely a foodie. We all are. We don't want to eat back in the villa every meal. Am I supposed to cook? Or do we do take out? so then our food is cold and soggy. Not being hostile, but sincerely aggravated that not only are they not able/willing to get food DS can eat, but they won't help me with food I bring- they can't reheat anything!

I'm sorry, it must sound like I am "whining"..."I don't wanna....."

But we eat seperately alot at home- DH works alot, seperate meals due to food allergies, etc. When we go on vacation, it's family time....not let me take DS back to the villa to eat and DH and my 2DD go eat at a restaurant.
We have a lot to be grateful for, I do understand that.

I'm a planner...and this is just not going according to plan.

 

[clanmcculloch]

Copied from the other thread so it's here as well:

DS only eats organic food to minimize cross-contamination.
He is allergic to:

airborne and ingestion allergy to Corn

ingestion "only" to
Dairy
Gluten
Soy
Lamb
Lettuce
Quinoa
Pear
Peach
Apple
Citrus
All Artificial Colors
All Artificial Preservatives
Egg white and yolk....can tolerate small amounts if necessary- but definitely can't eat eggs for breakfast, for example.


I know what it is like to feed him. I do it everyday. Maybe it is asking too much....it's just that it wasn't in the past. Sorry, just frazzled!

When you say airborn to corn, does that mean it can't be cut around him or does that mean that the flour being in the air will cause a reaction or something else? I'm just trying to get a real understanding of what that means to you so I can address you more accurately.

Honestly, I think organic will be the most difficult thing here. I'd skip organic for the sake of the trip since that's the component that isn't life or death.

Most TS restaurants have basic ingredients they can work with. Fresh fish, beef, chicken, etc are available along with fresh veggies and fruits. They can do a lot with those. The only meat you listed is lamb so chefs can use whatever proteins they have to make something for him. In addition, many carry rice pasta, though I honestly don't know if those have artificial preservatives or not; I don't think so but I'd confirm. Luckily I don't see berries or melons on your list and most restaurants seem to have those as well as grapes at the restaurants so I'm sure he'll be offered those a lot for desserts with a few making berry sorbets using only berries, sugar and water.

What restaurants are you eating at? I'd love to offer you some ideas of options that should be available to your DS.

I think QS and snacks are by far going to be much more difficult. There are fresh fruits which can be purchased for snacks but other than that, I'm not sure what options there are. I don't know what they season the rotisserie chicken and ribs in but we have around half of your allergens (plus a host of others) and my kids eat them. The differences in our allergens from yours are corn, Lamb, Lettuce, Quinoa, Pear, Peach, All Artificial Colors, All Artificial Preservatives. I think I've read that folks with corn and soy allergies eat these so that's good though hopefully somebody else will chime in for sure. At Sunshine Seasons in Epcot you actually speak with a chef who can help you. They have a variety of proteins (rotisserie chicken, baked salmon, pork chop, tuna steak) which are all safe for my kids and I believe should be safe for your son along with a variety of sides but a chef can go over your options with you. There's also a steak with steamed broccoli and roasted potatoes at Liberty Inn in the World Showcase.

QS at your resort will have a lot more options than in the parks. We typically book a TS lunch in the parks and QS for dinner back at our resort because of this. Chefs at the QS in your resort have a lot of ingredients to work with and an allergy area in the kitchen in which to work. In addition, if you'll be eating at your resort every day then the chefs can order things in to be better able to accomodate you.

{{{{HUGS}}}} I've been where you are with the lack of info before the trip. The chefs always come through. Special Diets may be dropping the ball but the chefs are still wonderful.

 

[clanmcculloch]

Get this straight. YOU ARE NOT WHINING!!! You're very understandably frustrated. Before our February trip, I was literally fighting tears over this exact same issue. I was close to cancelling that trip as well as the August one that was already booked. I'm glad I didn't. The chefs came through. They really did. I know exactly what you're feeling right now as I have been in your exact same position. It's normal (or so I tell myself).

 

[cathicool]

Thank you for your response. Corn is in just about everything. It is an anti-caking ingredient. It is in preservatives. It is feed to the animals ("grain-fed"). DS can only eat grass-fed beef because the corn allergy is so bad, that he reacts when he eats grain-fed products. Corn is dextrose, Sucrose, Xanthan gum, Maltodextrin,.............. the list is extensive...in addition to corn/corn on the cob/ corn muffins/ corn syrup/ corn strach/ maize/ doritos/cheetos/fritos/tortilla. It's in pretzels, sprinkles, ketchup....again, it is extensive.

So things like rotisserie chicken, ribs, etc...are off the table. DS doesn't eat any seafood. There are no conventional veggies that are protected enough from the pesticides (like a banana might be, for example because of it's thick skin) safe enough for DS to eat.

He's had a conventional apple once....anaphylactic reaction. He had a conventional peach once....extreame swelling, itchy throat- managed not to turn blue, so would not consider it anaphylactic, but scary enough.

We don't have any quick service locations picked out....all are TS restaurants...

 

[cathicool]

Get this straight. YOU ARE NOT WHINING!!! You're very understandably frustrated. Before our February trip, I was literally fighting tears over this exact same issue. I was close to cancelling that trip as well as the August one that was already booked. I'm glad I didn't. The chefs came through. They really did. I know exactly what you're feeling right now as I have been in your exact same position. It's normal (or so I tell myself).

Thank you...I'm in tears...feel like I'm going to vomit.

Just worried that it's gonna suck for them---- not for me, I'm always secondary---- I just want my 3 kids (and DH) to have a good time. I can handle the stress on my own, cry in the shower, etc...but it's when they notice I am stressed and then they get stressed---that's when I get upset. I don't want their vacation ruined or their ideals about the "happiest place on earth" marred. I want my son to feel happy and special in a good way, not a burden or unhappy. It's hard enough day to day to be constantly segregated because of his disabilities and his safety----I don't need to pay to go on vacation to perpetuate the segregation!

 

[clanmcculloch]

Not being able to eat any meats other than from grass fed animals and not being able to eat any non-organic fruits or vegetables does definitely make it significantly more difficult. I'm beginning to understand why chefs are struggling. Special Diets should have been forwarding your notices to them much earlier so they would have spoken with you with enough notice to be able to order in some things for your son. Hopefully they'll do that now even though it is last minute. I'm sure at least some will though it does mean he really won't have many options but at least there should be something.

I would strongly recommend you check out the land pavillion at Epcot. Garden Grill gets all of their fruits vegetables from the pavillion and they don't use pesticides. You said he doesn't eat fish but they do get their fish from there as well (maybe he'll sample a bite? I assume the no seafood is a preference thing on his part as you didn't list anything about any kind of seafood in your post; seafood would be so much easier). The beef and turkey I really don't know about. I think (though I'd confirm to be sure) that Sunshine Seasons gets their veggies from the pavillion as well. I don't know about the meats in there though. These are definitely some specific questions you should ask Special Diets about.

Maybe somebody else on the board knows if any of the restaurants carry grain fed meats and/or organic fruits and vegetables? Does he eat Tinkyada pasta? That's the brand that most restaurants carry, though at WCC a chef mentioned Ancient Harvest which would be a huge no-no for your son (it's corn and quinoa).

 

[disneycruising]

I understand how frustrating it can be to deal with food allergies. I have to boys that a ana food allergies.

Disney has changed the way they deal with allergies in the past few years. Now, they have a notebook at every quick service with a list of all the ingredients & at the table services meals the chef will come out.

I did see that you DS list of food allergies is extensive. Would it be possible to post a list of what food your son can eat? We might be able to make some suggested based on what he can have.

 

[antree]

I don't know where u made your reservations, I'll give you so examples of restaurants we ate at, we have wheat and gluten, peanuts and tree nuts.. We have eaten many places, but I'll give you the ones I think they went over and beyond with.

50's prime Time in Hollywood Studios, chef said they can make any meal we wanted, whatever the favorite meal was he would make it, but that was a few years ago. We spoke with him before our vacation.

1900 Park Fare, is a buffet and the Chef was Great.
The Plaza, in Magic kingdom, Chef is Amazing.
Coral Reef, Epcot.

With so many allergies, I'm trying to think where your best options are.

Where are some of your reservations?

 

[disneyandme]

We also deal with a corn allergy (and several others)-- we call it the great eliminator because curts out so many things. We do carry our DD food for every meal when we travel-- too many unkowns with the corn. She did have her first "not prepared at home" meal while at Disney-- they made her plain scrambled eggs in an unsprayed pan.
Maybe if you list where you ate last time and what worked, that would help. Also, what does the chil eat at home and for thins like school lunches.

 

[disfan07]

I understand where you are coming from. And it's much more difficult with a cild than as an adult because even though I don't like it and it disappoints me, I understand that for my safety , I always bring food with me wherever I go including Disney because I can eat very little that would be considered safe.

I am allergic to:

Peanuts( cross contamination as well)
Tree nuts ( especially almonds, hazelnuts, pecans)
Eggs ( white and yolks....including baked goods)
Wheat
Oats
Broccoli
Shellfish
Ginger
Thyme (sensitivity more than allergy)
Sodium benzoate (preservative)
Coconut
Sesame
Raw fruits (oral allergy syndrome)
Raw vegetables ( oral allergy syndrome)

I am also lactose intolerant so I limit dairy as well.

I haven't been to WDW with all of these allergies ( last time we went I was only allergic to peanuts, eggs and shellfish) but I have been to DL a couple of times and they have been wonderful. The chef came out to talk to us at storytellers cafe and while he was very overwhelmed (you could tell by the look on his face) he was very helpful and accommodating. He made me a steak w/ out the sauce, sautéed green beans and gave me a gluten free/egg free pizza dough for carbs because they give bread baskets out there and their gluten free buns are Udis which has eggs in them so he didn't want me to feel left out.

It's not an easy life for anyone. I'm 23 and I was just diagnosed with 9 of my food allergies over the past 4 months and it still makes me angry and upset and disappointed especially since I grew up eaing all of this.

I have found it to be much easier to tell them what can be eaten instead of what can't be eaten. Also, make sure you type a list of the allergies and make a lot of copies so you can give them to your server and/or chef at the restaurants. It's very helpful for them to see the list rather than just get told the allergens.
I would say not to rule Disney out just yet but definitely be prepared to have food for him to eat.

 

[DCDisney]

Perhaps making a brand specific list of what he CAN eat would help the chef. I've found they like it if I specify what types of foods I want. I have many allergies but none airborne. Really the airborne corn is a big deal since they all use that grill spray which has corn and soy ( or did on our trip
Last year). Better they be honest if it's not a safe environment for him. It sounds like you've been before so maybe that spray doesn't bother him? You may just have to divide and conquer or carry an insulated bag of good for him.

 

[cathicool]

Thank you all for the words of wisdom and encouragement.

It is a tough road when you have multiple allergies....I can see that many of you totally get this. It's nice to have comrades, but I am sorry that there are others who have to endure multiple food allergies.

I am not good with change, so maybe some of you are correct, maybe it isn't "game ending", but rather "game changing" with regard to how out disney trips are handled in the future. I guess I really liked the way it WAS and don't want to change, but I don't have that choice.

When we found out about DS allergies, I will never forget standing over the stove- sobbing- saying "I can't do this". But I soon came to realize I HAD to, again, I had no choice. Now it is second nature. Maybe the way we go to disney will now have to change.......it sure beats not going at all.....I'll just have to get used to it.

 

[RobynPrincess]

Sorry I don't have by advice for you, just sending you big hugs! Take a deep breath. Everyone is going to have a lovely time (including you) and although food is a big part of the trip, it's not the only part of the trip xxxxxxx

 

[Talking Hands]

The chef or manager will also come out at CS restaurants if you have extensive allergies.
The chefs did a wonderful job with mine even though I was never contacted prior to my trip. I was amazed at the care that was taken. I have allergies to dairy, shellfish, mango and aspartame as well as diabetes. Yes a lot was off limits to me. Lots of things seem to have hidden milk products and many of the premade sandwiches had cheese on them.
I did have hot dogs several times with gluten free buns and sauerkraut on top. Had salmon, with rice and green beans sauteed in olive oil one night at Pop Century, spicy tuna rolls another night. Bunless hamburger and cucumber salad at the CS between Fantasyland and Tomorrowland. A shake made from Rice Dream milk and Chocolate Tofutti (could have had vanilla that was made with Rice Dream ice cream and Rice Dream milk). My problem are bad enough that even the smallest amount will make me sick so removing cheese from a pre-made sandwich is not an option so I no longer can get sandwiches at some of the CS. I just find out which ones can make a fresh one that will be safe. Had no sit down restaurants this trip. My biggest problem is with drinks. All the fountain diet drinks use aspartame so I order unsweetened tea which is not always available at CS restaurants. I do bring some cans of Splenda sweetened soda and ask for ice.

 

[clm10308]

I can understand your frustration.

If you do take his food into the parks with you, maybe you could heat it up at first aid or the baby care center. I don't know if that would be allowed, but people with babies can heat stuff up so I don't see why you couldn't.

 

[jlr9882]

Sending hugs to you! I have a 6-year-old son with over 20 food allergies. We went the summer before he turned 5. Both Pop and Cape May Clam Bake's chefs called me several times. POP order a watermelon just for my son because he loved them at that time, and Cape May said they would prepare him a special rice milk flan. Boma's, Kona, Cape May, and Chef De France (as well as all QS chefs) all came out to me and prepared something for him because he couldn't eat anything off the kid's menus (all meats are out except for lamb and seafood) and we were on the dining plan. Cosmic Ray's and Flame Tree's chefs and managers both went searching for something for him to eat at other places, because there was nothing he could eat at either place. He did 2 out of the 4 qs at POP, because I knew there was something he could eat there and the chef was prepared for him.

I hope they will be able to order some food for your son at each place like Pop offered us. I know it is hard, but you will have a great trip. Think of all the other great memories you will make (pool, rides, shows) and keep a smile on your face.

 

[SillyFamily]

Ok here is an idea for in the resorts ts meals. For the restaurant that says they cant heat his food but you need to bring his, why not just sneak down to the qs location. They all have microwaves. Nobody will even think twice about u leaving and coming back in. I would bring something to clean the microwave with for cross contamination, but otherwise hot meals for him.

If you guys are having a 3 course meal why not pack him one. Yeah it might not be as fancy but it can still be great. The less u stress the less he will.

Just an idea hope this helps

 

[SillyFamily]

Oh yatchsman steakhouse has one grass fed steak. I think its the ny strip. I had it there 6months ago. Several of the signature restaurants will carry organic and grass fed meats, but i havent ever seen them anywhere else.

I havent seen any with organic fruits or veggies. Sorry