Serious food allergies and Disney dining.

[dhardawa]

I posted this up in the restaurant section, but was told to bring it here for more advice, so...

My friend's nephew has food allergies. I hate to call them severe because he breaks out in a rash as opposed to them being life threatening, but he's allergic to practically everything. For example, he's allergic to soy and milk, can only eat rice pasta, no breads of any kind, the only candy he can eat are Smarties, etc. He is so sensitive to these things that, at home, he has his own pots and pans that have to be washed before the family's pots and pans or else the next time they cook in them, he breaks out from cross contamination.

As you can guess, this means they can't go anywhere on vacation if they can't 100% control the food and how it's prepared. His mom was told that, in his case, a chef from Disney would meet with them and prepare special meals for him that meet his dietary needs. Since I'm the Disney guru, they knew I'd know where to ask about something like this and, here I am! Does anyone know about this process? Thanks!

 

[FreeTime]

The chef will meet with you before each meal and advise what is on the menu that he can eat. He will then make it personally for you. At CS sometimes it is the manager that makes it. All of their allergy books do say that there is the risk of cross contamination.

 

[seven dwarfs]

I posted this up in the restaurant section, but was told to bring it here for more advice, so...

My friend's nephew has food allergies. I hate to call them severe because he breaks out in a rash as opposed to them being life threatening, but he's allergic to practically everything. For example, he's allergic to soy and milk, can only eat rice pasta, no breads of any kind, the only candy he can eat are Smarties, etc. He is so sensitive to these things that, at home, he has his own pots and pans that have to be washed before the family's pots and pans or else the next time they cook in them, he breaks out from cross contamination.

As you can guess, this means they can't go anywhere on vacation if they can't 100% control the food and how it's prepared. His mom was told that, in his case, a chef from Disney would meet with them and prepare special meals for him that meet his dietary needs. Since I'm the Disney guru, they knew I'd know where to ask about something like this and, here I am! Does anyone know about this process? Thanks!

The chef's will come to the table. They are not going to be able to use a pan never used. If i were her, I would stay in a room with a kitchen and just bring his food into the parks each day. We have had some bad experiences with Disney and allergies. I think if your allergy is just nut, wheat or dairy, it is better and I hear good experiances. My son was more complex and they couldn't handle it. One chef gave my son something with wheat (he ate it and had a reaction, it was potatoes so we assumed they were ok, when we talked to the manager the chef said it was his mistake!!) We had some other issues too. If your allergy is serious I don't think I would chance it. If she does try, make sure she checks and rechecks his food. Ask to see labels etc. Good luck.

 

[disfan07]

OT: I have to say, I'm surprised he's never had an anaphylaxis reaction given he is so sensitive to those foods. The only foods I am cross contamination allergic to are the ones I am anaphylactic to. The ones where I just get rash/hives and/or GI pain are not cross contamination (thankfully!) but of course everyone is different. It's just kind of surprising.

We've always had wonderful service and accomodations at Disney even with my list of food allergies.

I have known anaphylaxis reactions to peanuts, tree nuts, eggs, and shellfish. I also have mild to severe allergies to dairy, soy protein (I'm okay with soybean oil and soy lechitin) wheat, oats, coconut, sesame, sunflower seeds, broccoli, ginger, raw fruits and raw vegetables.

I also have idiopathic anaphylaxis and eosinophilic gastroenteritis.

Disney is the only place we go out to eat. Otherwise, everything else I eat comes from either our kitchen or from this gluten free/allergen free bakery near us.

Last December we ate at:
Pop century food court
Crystal palace
The plaza
50s prime time cafe
Sci Fi
1900 park fare
Liberty tree tavern

We talked to all of the chefs at the TS restaurants and they were all very careful and knowledgable about cross contamination. At the QS restaurants we looked at the ingredient binders. But honestly, we usually just stuck to the allergy chicken tenders and fries at the QS meals. At POP, we were able to talk with a chef every time we went down. By day 3 they remembered me. I ate the allergy free Mickey waffles, allergy chicken tenders, fresh sautéed veggies, grilled chicken, unassembled burgers, etc. it was a wonderful experience.

We are going back in June for my birthday and college graduation. We are hoping to have a similar experience and hoping my allergies don't change before then!

 

[MSSANDRA]

I think they will need a complete list of what he is allergic to. If he continues to have reactions, something is unresolved. A rash to even a trace could very well put him at risk for an more serious reactions at any time. Once you have a full list, chiefs at WDW are very good at working with you IF they have the accessibility to the foods he needs. I would have less confidence in CS. Our allergies (reactions ) are more severe but identified and limited and common. I would certainly have extra epi-pens on me at all times.

 

[disfan07]

I'm curious about what you mean by "he's allergic to everything". Is he allergic to more than soy and dairy? Yes both are in a lot of foods but I've also learned that you can still eat a nice variety even without those two things and I have 11 other allergies.

If he's reacting to everything, it sounds like something is unresolved. For me, because of my level of sensitivity, my IgE and eosinophilic gastroenteritis, a food that was okay one day, coud quickly become dangerous (thats what has happened recently).

I think if they are definitely sure that they know what he is reacting to, the chefs should be able to help. But if he's having unknown reactions, that could cause more difficulties.

 

[bopper]

Here is an "allergy trip report" that may be useful. You may have different allergies to worry about, but this report will give you hints on how to approach things.
http://www.disboards.com/showthread.php?t=2465417

 

[clanmcculloch]

The way I read OP's post about being allergic to "everything" is that this is the perspective of somebody who is not used to dealing with allergies. It sounds like gluten, milk and soy. When you're used to a typical American diet, that means you can't have anything. If you're used to living with allergies though, this isn't a big deal. I remember when I was trying to figure out my GI issues, before any of us were diagnosed with any food allergies (we've all gotten worse over the years so back then we didn't have the hives or OAS), I remember reading on message boards about people having to give up gluten and the idea just totally overwhelmed me and I couldn't understand what the heck people who were gluten free could eat. Boy do I see it differently now that I'm living with it daily.

I can understand getting hives but never having an anaphylactic reaction. All 3 of us with allergies get different reactions to different foods including hives with certain foods and Oral Allergy Syndrome with others. DD12 and I have to be more careful with the foods that cause OAS because they do sometimes give us a sensation of more difficulty breathing but we've never felt our airway really closing off or anything like that. The other day I started feeling this way from just handling a certain food (I have rubber gloves at home for some things because of it) and we do all react to trace amounts. I've had one anaphylactic reaction in my life and that was from an allergy shot (thank G-d I was still at the allergist office or I would have died because I don't carry epi pens) but none of us has ever experience anything near this from foods. * knock on wood * Allergies are such a weird beast.

If this child's allergies are gluten/wheat, milk and soy then Disney World is a piece of cake (literally, there is cake free of these allergens).

 

[disfan07]

The way I read OP's post about being allergic to "everything" is that this is the perspective of somebody who is not used to dealing with allergies. It sounds like gluten, milk and soy. When you're used to a typical American diet, that means you can't have anything. If you're used to living with allergies though, this isn't a big deal. I remember when I was trying to figure out my GI issues, before any of us were diagnosed with any food allergies (we've all gotten worse over the years so back then we didn't have the hives or OAS), I remember reading on message boards about people having to give up gluten and the idea just totally overwhelmed me and I couldn't understand what the heck people who were gluten free could eat. Boy do I see it differently now that I'm living with it daily.

I can understand getting hives but never having an anaphylactic reaction. All 3 of us with allergies get different reactions to different foods including hives with certain foods and Oral Allergy Syndrome with others. DD12 and I have to be more careful with the foods that cause OAS because they do sometimes give us a sensation of more difficulty breathing but we've never felt our airway really closing off or anything like that. The other day I started feeling this way from just handling a certain food (I have rubber gloves at home for some things because of it) and we do all react to trace amounts. I've had one anaphylactic reaction in my life and that was from an allergy shot (thank G-d I was still at the allergist office or I would have died because I don't carry epi pens) but none of us has ever experience anything near this from foods. * knock on wood * Allergies are such a weird beast.

If this child's allergies are gluten/wheat, milk and soy then Disney World is a piece of cake (literally, there is cake free of these allergens).

And if you go to crystal palace there might be brownies free of it as well!
I think you're right though. A year ago, the thought of being gluten free was overwhelming. Egg free, nut free and shellfish free I could handle but giving up my carbs...no way...lol. These days, when someone says that have to go gluten free, I think "piece of cake".

I think it also depends on how you were advised to treat reactions. I know i am supposed to use my epi pen when two or more systems are involved. So hives + GI means epi pen. Hives + difficulty breathing means epi pen. However, because I have asthma, any difficulty breathing means automatic epi pen. So I guess for me, my anaphylaxis threshold is lower than others. I've gone through a lot of epi pens in the past 9 months. So in your example, if I came in contact with a known allergen and was haing any feeling of difficulty breathing, it would be automatic epi pen.

Allergies are just so unpredictable. And standard of care seems to vary from allergist to allergist. I feel like Everyone knows about severe anaphylaxis (throat closing, sweating, cardiac problems, etc) but I don't think as many people are educated about other more mild anaphylaxis that is still considerd a medical emergency and requires an epi pen. (or maybe my allergist is just insanely over protective of me....which is possible.....)

But I agree, if gluten, soy an dairy are the three allergies of concern, Disney is great with those.

 

[clanmcculloch]

It really is amazing how differently different doctors treat allergies. I've heard that some doctors consider any change to breathing no matter how minor or hives of any kind to be anaphylactic. Mine has never said anything like that. If I used an epi pen every time we had 2 of these types of symptoms I'd be at the hospital a lot. The symptoms have never, not once, been bad enough to warrant a hospital visit (other than for testing; some tests are only done at hospitals). * knock on wood again * DD12's allergist only wrote the prescription for epi pens because I asked him to based on the severity of one of the foods in the tests. What's weird is that was a food she had never had a reaction to other than maybe raising her overall IgE levels and GI issues. Though, I guess to some allergists might say we do suffer somewhat frequent minor anaphylaxis. I don't know. It's a tough call.

I can see your doctor being really agressive with your treatment. I remember you one mentioning how high your IgE levels are and I was shocked. None of us is anywhere even remotely close to that so I'm sure that also makes a big difference. IMO your doctor is right to be significantly more cautious and agressive with your treatment.

I keep thinking I need to give Crystal Palace another try just for those brownies. Other than Babycakes products (which you don't get in restaurants unless you're really lucky or order & pay for the delivery yourself) and Enjoy Life cookies, there aren't any other baked goods DD15 can eat because of eggs. The ones at Crystal Palace I understand are egg free. They just make me nervous. I'm one of the people who had a not so good experience there in the past though it's been years.

Last I heard, Chef Mickey still has cupcakes that are top 8 free.

 

[mistysue]

I keep thinking I need to give Crystal Palace another try just for those brownies. Other than Babycakes products (which you don't get in restaurants unless you're really lucky or order & pay for the delivery yourself) and Enjoy Life cookies, there aren't any other baked goods DD15 can eat because of eggs. The ones at Crystal Palace I understand are egg free. They just make me nervous. I'm one of the people who had a not so good experience there in the past though it's been years.

Last I heard, Chef Mickey still has cupcakes that are top 8 free.

Yes, yes you do. The brownie was great. I have pictures of my DS dressed up a Jake displaying his brownie while telling me how it was the greatest thing in the world.
I also find it odd how different allergists can be about symptoms. My allergist is so relaxed I can't tell the difference between when I should panic and when I should shrug things off.

To the OP- do you have a more specific list of what he is allergic to? Like the others I am wondering if he really is allergic to everything, or if it's 2-3 common items so it just seems like everything. Either way, Disney is on a short list of places I would trust to handle it. I wouldn't take it less seriously than reaction that you know would be life threatening because allergies are unpredictable like that. He may get a rash today and stop breathing tomorrow. I'm not trying to make you paranoid, but it's true, so his needs should and will be taken seriously by the chefs at Disney.

 

[Random Ninja]

I'm kinda glad everybody's allergists have differing ideas. The cookie cutter approach is scary when it comes to healthcare. Personally, I'd have to use an epi-pen several times a week if I had to use it every time I had a breathing problem because of my allergies. I wear face masks ofter but they don't filter everything out. My tapioca allergy is airborne so I have reactions every time I get near a fast food restaurant. (It's in most frozen french fries.)

It does sound like the OP may have many more options for the nephew if it's just dairy, soy, and gluten. Hopefully that's it and the kids really isn't allergic to almost everything. If he's breaking out from trace amouts, there many be more going on that really should get checked out JIC. Disney is as safe as it gets for allergy friendly dining. Are they perfect? No. Do they try above and beyond their best? Yes.