New allergies at Disney....are we crazy??

[disfan07]

So the last time we went to WDW I was only allergic to peanuts, eggs and shellfish.

However, that has change drastically in the past 2 1/2 years. We were thinking about going in Dcember (since they extended free dining) but I am now allergic to:

Peanuts, eggs, shellfish, tree nuts, coconut, wheat, oats, ginger, thyme, seasame and dill. I am also sensitive to sunflower (I can tolerate the oil but can only have small amounts of like sunflower seeds or butter). I also cannot eat any raw fruits or veggies (only cooked or processed).

I know Disney is wonderful with allergies. They were amazing last time. But I feel like we are going to encounter a LOT of issues. We can't afford the deluxe dining plan (we would be staying value....we can only afford to upgrade to regular dining) but I feel like QS meals are going to be a bust.

So I have a couple of questions for people who have been there recently......

1) are the ener-g buns back? I can't have eggs baked in anything either (I went into anaphylaxis from challah (egg bread) 3 years ago)

2) do they have enjoy life products at TS and QS for dessert choices? I know last time (in 2010) I was able to get enjoylife chocolate chip cookies but I only got them once because I always chose Divvies instead (but now I am allergic to wheat as well). We also really enjoyed babycakes last time but thats off limits as well now because of coconut.

3) are the allergen free waffles gluten, egg, oat and nut free?

4) am I essentially out of luck with fruit if I can't eat anything raw? Should I just plan on brining the individual cups of fruit with me if I want to eat fruit during the week?

5) At CS meals, I will not always be able to eat the french fries (even cooked, potatoes are one of my worst for my food pollen allergy syndrome so I have to limit them). Since I can't have any raw fruits or veggies, am I completely out of luck for any other side options?

6) Do you think it's even possible to manage this while having to dine at QS places half the time? We're considering pushing the trip back until next year but with everything that has happened and is happening we really don't want to wait much longer for a vacation.

I'm so excited that we are probably going back to Disney soon but the more allergies we find out about and the more reactions I have, the more I'm thinking that this really isn't going to be possible. My last anaphylaxis reaction was 7 weeks ago (I had 2 reactions 2 days in a row) but I've had 1 or 2 less severe reactions every week for the past 7 weeks and we just don't know why. My most recent reaction was 2 days ago and we just dont know why. So for obvious reasons, eating out, even at WDW scares me.

 

[SAT887]

So the last time we went to WDW I was only allergic to peanuts, eggs and shellfish.

However, that has change drastically in the past 2 1/2 years. We were thinking about going in Dcember (since they extended free dining) but I am now allergic to:

Peanuts, eggs, shellfish, tree nuts, coconut, wheat, oats, ginger, thyme, seasame and dill. I am also sensitive to sunflower (I can tolerate the oil but can only have small amounts of like sunflower seeds or butter). I also cannot eat any raw fruits or veggies (only cooked or processed).

I know Disney is wonderful with allergies. They were amazing last time. But I feel like we are going to encounter a LOT of issues. We can't afford the deluxe dining plan (we would be staying value....we can only afford to upgrade to regular dining) but I feel like QS meals are going to be a bust.

So I have a couple of questions for people who have been there recently......

1) are the ener-g buns back? I can't have eggs baked in anything either (I went into anaphylaxis from challah (egg bread) 3 years ago)

2) do they have enjoy life products at TS and QS for dessert choices? I know last time (in 2010) I was able to get enjoylife chocolate chip cookies but I only got them once because I always chose Divvies instead (but now I am allergic to wheat as well). We also really enjoyed babycakes last time but thats off limits as well now because of coconut.

3) are the allergen free waffles gluten, egg, oat and nut free?

4) am I essentially out of luck with fruit if I can't eat anything raw? Should I just plan on brining the individual cups of fruit with me if I want to eat fruit during the week?

5) At CS meals, I will not always be able to eat the french fries (even cooked, potatoes are one of my worst for my food pollen allergy syndrome so I have to limit them). Since I can't have any raw fruits or veggies, am I completely out of luck for any other side options?

6) Do you think it's even possible to manage this while having to dine at QS places half the time? We're considering pushing the trip back until next year but with everything that has happened and is happening we really don't want to wait much longer for a vacation.

I'm so excited that we are probably going back to Disney soon but the more allergies we find out about and the more reactions I have, the more I'm thinking that this really isn't going to be possible. My last anaphylaxis reaction was 7 weeks ago (I had 2 reactions 2 days in a row) but I've had 1 or 2 less severe reactions every week for the past 7 weeks and we just don't know why. My most recent reaction was 2 days ago and we just dont know why. So for obvious reasons, eating out, even at WDW scares me.

I would think your safest route would be to contact Disney direct to see if they can accomodate your needs.... You have quite a few allergens and they seem to be a unique combination so it might be hard to get a good solid answer with out all the proper reference materials - especially since your reaction is severe...

http://disneyworld.disney.go.com/guest-services/special-dietary-requests/

However, a thought, what about getting a refridgerator and bringing our buying your typical foods that you eat? (I know that defeats the free dining) I really feel for you and hope you can easily go to WDW but most of all find out what is causing the reactions.

 

[clanmcculloch]

Looking over your list, we've got many of these in my family. The only ones we don't have are shellfish, coconut, ginger, thyme, dill and sunflower though we do have others not on your list (well, DD12 can eat some raw fruits and veggies but it seems she's losing more and more all the time). We do manage to eat CS meals at WDW. What I've found works best for us is to pack quick and easy breakfast foods that we can eat in our room or on the way to the bus stop (this works from an allergy perspective as well as an ease of getting out the door to the parks perspective) followed by an early TS lunch in the park followed up by CS at our resort. Resort CS are much better equipped to be able to handle complicated allergies than park CS. Park CS is limitted to only premade foods while resort CS can customize the same way TS locations can as they have full kitchens including allergy specific areas and chefs to do the cooking (at values and mods they have allergy areas in their kitchens while at Deluxe they'll generally scoot over to one of the TS restaurants to prepare the food in their allergy area). Chefs at resort CS locations can use any of the ingredients they have on hand to be able to customize your meal safely. One park CS location where we've had great experiences has been Sunshine Seasons at Epcot as they do have actual chefs and can customize meals, though we're pretty lucky that even despite our laundry lists of allergies, there are meals there that we can eat without customization (just need to get stuff pulled that hasn't been exposed to cross contamination risk). With the seasoning allergies though, you'll definitely need to go over that with a chef. If you eat CS at your resort or SS then they should be able to steam or sautee some veggies for you or they may have rice or other starches for you, depending on the resort.

I don't know about the seasonings, but I bet the chicken tenders are free of everything else. According to the company's allergy statement, they may contain thyme. I'd contact them directly to find out. http://www.allergyfreefoods.com/index.php/who-we-are/faq/50

For TS meals you'll be well taken care of. Of that I have no doubt. I'm not sure there will be many dessert options though I think (I haven't confirmed; you need to do that) that at least Tofutti ice cream should be safe for you.

One piece of advice that's made a big difference for us. Print out business card sized slips of paper containing your whole list. When chefs or managers ask for your list of allergies, hand one over. I used to always forget to say something in our list (some of our allergies/intollerances aren't nearly as severe as others so it's easy to slip the mind especially when they're unusual) so this way it's all there in black and white and the chefs all seem to really like it as well. I have a couple that I've laminated that I keep on me and I also have some I just hand over to chefs to keep.

I'd definitely contact Special Diets to have a chef from your resort contact you. If they know you're coming then they'll have the ability to order in some things for you if need be. In addition, I bet they'd make up a batch of Namaste brownies for you for your desserts.

 

[disfan07]

Looking over your list, we've got many of these in my family. The only ones we don't have are shellfish, coconut, ginger, thyme, dill and sunflower though we do have others not on your list (well, DD12 can eat some raw fruits and veggies but it seems she's losing more and more all the time). We do manage to eat CS meals at WDW. What I've found works best for us is to pack quick and easy breakfast foods that we can eat in our room or on the way to the bus stop (this works from an allergy perspective as well as an ease of getting out the door to the parks perspective) followed by an early TS lunch in the park followed up by CS at our resort. Resort CS are much better equipped to be able to handle complicated allergies than park CS. Park CS is limitted to only premade foods while resort CS can customize the same way TS locations can as they have full kitchens including allergy specific areas and chefs to do the cooking (at values and mods they have allergy areas in their kitchens while at Deluxe they'll generally scoot over to one of the TS restaurants to prepare the food in their allergy area). Chefs at resort CS locations can use any of the ingredients they have on hand to be able to customize your meal safely. One park CS location where we've had great experiences has been Sunshine Seasons at Epcot as they do have actual chefs and can customize meals, though we're pretty lucky that even despite our laundry lists of allergies, there are meals there that we can eat without customization (just need to get stuff pulled that hasn't been exposed to cross contamination risk). With the seasoning allergies though, you'll definitely need to go over that with a chef. If you eat CS at your resort or SS then they should be able to steam or sautee some veggies for you or they may have rice or other starches for you, depending on the resort.

I don't know about the seasonings, but I bet the chicken tenders are free of everything else. According to the company's allergy statement, they may contain thyme. I'd contact them directly to find out. http://www.allergyfreefoods.com/index.php/who-we-are/faq/50

For TS meals you'll be well taken care of. Of that I have no doubt. I'm not sure there will be many dessert options though I think (I haven't confirmed; you need to do that) that at least Tofutti ice cream should be safe for you.

One piece of advice that's made a big difference for us. Print out business card sized slips of paper containing your whole list. When chefs or managers ask for your list of allergies, hand one over. I used to always forget to say something in our list (some of our allergies/intollerances aren't nearly as severe as others so it's easy to slip the mind especially when they're unusual) so this way it's all there in black and white and the chefs all seem to really like it as well. I have a couple that I've laminated that I keep on me and I also have some I just hand over to chefs to keep.

I'd definitely contact Special Diets to have a chef from your resort contact you. If they know you're coming then they'll have the ability to order in some things for you if need be. In addition, I bet they'd make up a batch of Namaste brownies for you for your desserts.

I don't eat tofutti at home (I rarely eat ice cream and usually eat breyers when I do) but I thought tofutti carries a nut warning on it? Or maybe I'm just confusing it with soy dream ice cream (I've been reading so many labels lately my head is spinning and I get things confused!).

Thyme I'm okay with every once it a while. It seems to be more of a cumulative type thing. If I eat a little every once in a while there's no issue....it's when I was eating it for like 5 days in a row, I would suddenly have a reaction on like day 5. It was just too much.

I always have a printout of my allergies with me. Part of it is so that I can remember what I am allergic to!!

my raw fruits and veggie issue is because I have extensive food pollen allergy syndrome (oral allergy syndrome). For most people its minor and it's only a few fruits and/or veggies. For me though, we've figured out that every fruit and veggie causes at least mild symptoms if eaten raw because my pollen allergies are so severe (and I'm at least mildly allergic to pretty much all pollen.....and I have an IgE over 3000) and since I went into anaphylaxis twice while having allergy shots, that apparently makes it more likely that a reaction b/c of OAS could potentially turn into something more severe (its rare for it to become anaphylaxis).

Also, I can eat dairy but I can't/don't drink milk (I dont tolerate it as well as other dairy products adn I just don't like the taste). My doctors also don't want me to really be drinking soy milk (there's so much soy in GF products as it is and they want me to limit it in other ways). Is there rice milk? If there is, do you know what brand? I know some brands have a nut warning because of almond milk.

Yeah they were great at CS reastaurants last time but it was just so much easier (peanuts and eggs were the only real concerns at those places). The two TS meals we had last time were wonderful (Crystal Palace and RFC). It's just so overwhelming to even cook at home that I just have trouble wrappig me head around the possibility of being able to eat out for a week!

I am definitely planning on bringing snacks with us. If we go, our plan is to bring (as of right now):
Glutino breakfast bars
homemade cereal bars (chex cereal, enjoy life choc chips, marshmallows, craisins)
enjoy life cookies
jo sef cookies
Fritos
homemade GF biscuits
dried fruit (craisins, made in nature plums and apricots)

we are also actually considering bringing GF bread with us. We have a bakery here that makes GF, egg free, soy free, dairy free, nut free bread that is amazing and it lasts for like 10 days in the refrigerator. So I am thinking that since we will have a frdige in the values, it would be a great treat in the morning with some cream cheese and jelly from the food court.

Thanks for all the info. I never thought it would be this hard especially since we've done Disney before with allergies and it was wonderful but I've just been diagnosed with most of these allergies over the past month so it's kind of overwhelming especially since we can tfigure out why so many (and so many rare ones, especially for adults) keep developing.

 

[SAT887]

I wasn't sure if you were aware but there is a whole foods not far from WDW. I know not all standard grocery stores carry a wide array of specialized foods...

 

[clanmcculloch]

For us the tree nut allergies are only 2 specific nuts and for peanuts we don't worry about cross contamination since it's such a mild allergy so I haven't paid attention to see if Tofutti was an issue for those. I didn't even notice that you didn't have milk on the list. Wow, I was clearly paying attetion. LOL Isn't the ice cream at WDW Edy's? I don't pay much attention to it since our 3 allergy sufferers are all off milk. I thought I had read that the regular ice cream has peanut warnings but I could very easily be wrong. If you're not an ice cream eater than it really doesn't matter anyway. For a frozen treat I think that the frozen fruit bars should be safe for you but you know better than I do if the processing that they do is sufficient for you to be able to eat them. DD12 doesn't like the texture of them so it hasn't been a concern. My own OAS is much more minor and so far *knock on wood* is only from direct consumption of completely unprocessed very specific raw fruits which do not include these ones so it wouldn't be an issue for me anyway. They do carry rice based ice cream. It's Rice Dream. I don't trust them regarding gluten because they use barley but still claim to be gluten free, but you're only wheat and oat free so barley shouldn't be a concern. I haven't paid any attention to other allergy warnings because we won't use them anyway. The rice milk that's used around the parks is Pacific and is what chefs use for our milkshakes.

I really should pay more attention to DD12's OAS. Her total IgE is only around 550 so not too bad. She's never had an anaphylactic reaction but reactions these days do seem to affect her breathing more and are happening quicker so it's getting worse for sure. I don't know if it's chemicals or pollens but it's definitely raw fruits and vegetables. For some reason grapes that are well washed don't seem to be a problem and some organic tree fruits are ok (sometimes they're not though so we no longer really risk it with them) and she's been ok with pineapple luckily but we really don't risk it with very many fruits or raw veggies any longer. I really don't know much about how common or rare anaphylaxis is with OAS but DD12's breathing does become short. I don't care what term is used for it but if she can't breath then we'll be heading to the ER after an epi pen stab. *knock on wood* her breathing's never come close to that bad. She just gets very upset about the feeling and I can see that she looks scared but she's never gotten blue lips or sounded like she's wheezing (thank G-d).

For home cooking, I REALLY recommend that you go back to basics. Cook unprocessed meats, veggies and starches. Pick up some good quality seasonings (not mixes) and learn their flavours and how they mix together well. Your anxiety in the kitchen will drop dramatically as you don't need to read labels to do this. Then take some time to do some reading online for reviews of restaurants in your area. I'm very lucky to have found a local chain in my area that trains every single staff member about allergies. They don't have desserts there that we can eat but they've made us many wonderful meals even with our laundry lists of allergies and we don't have to worry about getting sick.

Which resort will you be staying at? I know you said value. I'm just kind of hoping it'll be Pop or AoA. What I've been reading about the AS resorts lately hasn't been so great though I have no personal experience. We'll be at AoA next week and will definitely report back with a dining report when we return. I'm not at all nervous about eating at AoA.

 

[SDSorority]

I second the idea of the allergy cards. We always put what we can't have on there, and then on the back we list out things that we often cook for ourselves at home, just to give the chefs some idea when they look at you with a blank stare sometimes . Going to the world next year will be SO.MUCH.EASIER for us because we have decided to no longer be vegetarian. It sure is hard to be gluten-free, soy-free, AND vegetarian when you eat out, so this takes a bit of the stress off. But I totally feel you with the "oddball" allergies. Just think about what you have at home, and go from there.

I LOVE Enjoy Life- they're the only chocolate-containing treats that I can have. They appear to be so much more available than they used to be. That said, we ALWAYS bring our own snacks into the parks. That way, if we're standing in line and get hungry, we can just nibble away . We also pack our own lunches to bring with us. You will most likely have better luck at the Table Service restaurants since they would have more of a variety of items that you could have (meat, cooked vegetables, rice-noodle pasta, etc). We avoided CS meals last trip and just ate the items that we picked up from Publix for breakfasts, lunches, and snacks.

Don't hesitate to stuff your suitcase full of snacks if you don't have a car. We've done this, and it's worked out just fine! If we bring bread from home, we divide it up into 2-slice ziplock baggies and put them between clothes or soft items to keep it from getting smooshed. Worked fine. We also have packed Applesauce cups in large ziplocks in the suitcase, as well as peanut butter, honey, fruits, etc- they've all made it from Ohio to Orlando just fine in a a properly packed suitcase. You can also have grocery delivery from Whole Foods or Garden Grocer. We always rent a car so we make a Publix run- when at Pop it's just a few stoplights away by Gaylord Palms.

Also, this may be "taboo" but whatever- if the other family members want to eat at a CS restaurant that you don't feel comfortable ordering items for yourself from, take your packed lunch and save a table for them

 

[disfan07]

For us the tree nut allergies are only 2 specific nuts and for peanuts we don't worry about cross contamination since it's such a mild allergy so I haven't paid attention to see if Tofutti was an issue for those. I didn't even notice that you didn't have milk on the list. Wow, I was clearly paying attetion. LOL Isn't the ice cream at WDW Edy's? I don't pay much attention to it since our 3 allergy sufferers are all off milk. I thought I had read that the regular ice cream has peanut warnings but I could very easily be wrong. If you're not an ice cream eater than it really doesn't matter anyway. For a frozen treat I think that the frozen fruit bars should be safe for you but you know better than I do if the processing that they do is sufficient for you to be able to eat them. DD12 doesn't like the texture of them so it hasn't been a concern. My own OAS is much more minor and so far *knock on wood* is only from direct consumption of completely unprocessed very specific raw fruits which do not include these ones so it wouldn't be an issue for me anyway. They do carry rice based ice cream. It's Rice Dream. I don't trust them regarding gluten because they use barley but still claim to be gluten free, but you're only wheat and oat free so barley shouldn't be a concern. I haven't paid any attention to other allergy warnings because we won't use them anyway. The rice milk that's used around the parks is Pacific and is what chefs use for our milkshakes.

I really should pay more attention to DD12's OAS. Her total IgE is only around 550 so not too bad. She's never had an anaphylactic reaction but reactions these days do seem to affect her breathing more and are happening quicker so it's getting worse for sure. I don't know if it's chemicals or pollens but it's definitely raw fruits and vegetables. For some reason grapes that are well washed don't seem to be a problem and some organic tree fruits are ok (sometimes they're not though so we no longer really risk it with them) and she's been ok with pineapple luckily but we really don't risk it with very many fruits or raw veggies any longer. I really don't know much about how common or rare anaphylaxis is with OAS but DD12's breathing does become short. I don't care what term is used for it but if she can't breath then we'll be heading to the ER after an epi pen stab. *knock on wood* her breathing's never come close to that bad. She just gets very upset about the feeling and I can see that she looks scared but she's never gotten blue lips or sounded like she's wheezing (thank G-d).

For home cooking, I REALLY recommend that you go back to basics. Cook unprocessed meats, veggies and starches. Pick up some good quality seasonings (not mixes) and learn their flavours and how they mix together well. Your anxiety in the kitchen will drop dramatically as you don't need to read labels to do this. Then take some time to do some reading online for reviews of restaurants in your area. I'm very lucky to have found a local chain in my area that trains every single staff member about allergies. They don't have desserts there that we can eat but they've made us many wonderful meals even with our laundry lists of allergies and we don't have to worry about getting sick.

Which resort will you be staying at? I know you said value. I'm just kind of hoping it'll be Pop or AoA. What I've been reading about the AS resorts lately hasn't been so great though I have no personal experience. We'll be at AoA next week and will definitely report back with a dining report when we return. I'm not at all nervous about eating at AoA.

It would be AOA or Sports. We didnt like Pop 2 years ago when we went.

I am anaphylaxis to peanuts and tree nuts so we are very concerned about cross contamination. In fact, i reacted recently to CC from quaker rice cakes (wasnt marked on the package but was mentioned on their website!).

Edys is not safe. But even if it was, I wouldnt be able to eat at the ice cream places because there are peanuts/nuts for toppings.

Rice dream is unsafe for me becasue they make Almond ice cream/milk so its off limits.

I just looked up Pacific brand rice milk. Not safe either. They make Almond and Hazelnut products. I am anaphylaxis to both of those nuts.

The CC issue with nuts is what makes a lot of things hard.

I LOVE cooking and baking. And I was lucky to get the cooking gene in my family but this has taken all the joy out of cooking. I hate being in the kitchen right now. So its not that I cant/don't know how to cook....right now I'm just more pissed off about the fact that I could eat all this for 23 years and then suddenly I can't.

 

[clanmcculloch]

I TOTALLY understand your anger. I think it's probably the hardest part. The emotional toll can be high at times. {{{HUGS}}}

Did you confirm with each of these companies that the nut milks/products are actually in the same facility? Some companies have separate facilities for their different allergy products. I haven't checked myself so I'm just asking if you have or if you're just figuring you have to write them off because they make nut based products.