Food Allergies/ Intolerance/ Celiac

[WLWildlife]

disney is able to handle this massive list of mine and i actually gained weight on our last trip- that's amazing because food is just basically fuel to me, and i will often neglect to eat at home because it's danged right boring!
as everyone else mentioned, if you have more than one single allergen to avoid, those allergy menus are not your friend! Even then, you're still better off to ask to speak with a chef at a sit down location, the team lead at counter service (usually the one walking around with an iPad) and ask to see the binder at any cart/ kiosk. A burger might be safe by leaving of the cheese that's standard and a salad might be safe if they swap out the dressing.

Never downplay your issues, be upfront with the culinary team about your level of acceptable cross contamination (are you ok with label that say "may contain" do you need things like glove changes or separate cooking methods - I need my food to stay off shared grills!)
Some of my reactions are minor but others are life threatening, I just hand over my card and leave it at that - I can't risk being treated like a picky adult

View attachment 883274

That card is very informative. I would think it would be helpful to the chef. Some of our reactions are life threatening and some are not, but we don't get to travel often and I want to enjoy every moment of this trip. Thank you for sharing!

 

[TwoMisfits]

The only bad reaction DH had (intestinal upset due to celiac disease) was caused by a supposedly gluten-friendly item from a food booth at an Epcot festival. I have a friend in food service at Disney who pointed out that the prep areas in those booths are TINY, and cross-contamination is much harder to avoid than in an actual kitchen. Absolutely no problems at QS or TS on multiple trips.

Just for future info on food labels and advertising.

ANY "X-Friendly" term ALWAYS has the product in it. It is gluten-friendly b/c it probably has a miniscule amount of gluten, so most intolerant folks can still tolerate it. But if you have severe issues or allergies, you MUST avoid "friendly" items.

Same for the "Non-X" term - Non-dairy ALWAYS has some aspect of dairy in it. Usually it's okay for lactose-intolerant folks b/c lactose tends never to be the dairy in it, but dairy allergy folks have to avoid like the plague.

If you need to completely avoid the product, you must look for the term "Free", and then also double check that cross contamination can be avoided. Example - if there is a shared fryer, you have to avoid, even if it's a "x-free" item.

 

[mistysue]

Just for future info on food labels and advertising.

ANY "X-Friendly" term ALWAYS has the product in it. It is gluten-friendly b/c it probably has a miniscule amount of gluten, so most intolerant folks can still tolerate it. But if you have severe issues or allergies, you MUST avoid "friendly" items.

Same for the "Non-X" term - Non-dairy ALWAYS has some aspect of dairy in it. Usually it's okay for lactose-intolerant folks b/c lactose tends never to be the dairy in it, but dairy allergy folks have to avoid like the plague.

If you need to completely avoid the product, you must look for the term "Free", and then also double check that cross contamination can be avoided. Example - if there is a shared fryer, you have to avoid, even if it's a "x-free" item.

I hate being this person - but that is not what friendly or non-dairy mean.

Perfect example is it's becoming a trend for restaurants to say "friendly" because something is free of that item but they aren't willing to completely guarantee that nowhere in the line from the farm to your plate is there any potential for CC, so they say friendly instead of safe, but it doesn't mean it definitely contains or has CC either. It's totally unregulated, so like terms like "may contain" or "made in a facility" saying or not saying friendly are meaningless by themselves.

And Non-dairy does not always mean it has dairy. Is it common? Yes, but the big issue here is people don't know what the term means, so now people are putting "non-dairy" on things that are dairy free too and don't realize the weird confusion and paranoia they are causing. "Non-dairy" means a product is allowed to have up to 2% by weight of casein protein and still have that label, but it doesn't mean it necessarily does. For example, skinny pop has non-dairy products without any dairy in them. It's also a big one for restaurants to throw out there not knowing what it means, so you always have to check but it's not for certain containing dairy.

 

[TwoMisfits]

I hate being this person - but that is not what friendly or non-dairy mean.

Perfect example is it's becoming a trend for restaurants to say "friendly" because something is free of that item but they aren't willing to completely guarantee that nowhere in the line from the farm to your plate is there any potential for CC, so they say friendly instead of safe, but it doesn't mean it definitely contains or has CC either. It's totally unregulated, so like terms like "may contain" or "made in a facility" saying or not saying friendly are meaningless by themselves.

And Non-dairy does not always mean it has dairy. Is it common? Yes, but the big issue here is people don't know what the term means, so now people are putting "non-dairy" on things that are dairy free too and don't realize the weird confusion and paranoia they are causing. "Non-dairy" means a product is allowed to have up to 2% by weight of casein protein and still have that label, but it doesn't mean it necessarily does. For example, skinny pop has non-dairy products without any dairy in them. It's also a big one for restaurants to throw out there not knowing what it means, so you always have to check but it's not for certain containing dairy.

Right, so both products, "friendly" and "non" should ALWAYS be avoided for those with severe issues. The 1st, restaurants are not going to ensure safety b/c they have the "out" - if you notice, EVERY menu has the language about "no guarantee", so they care much more when they use the term "free" and not "friendly". Friendly says we're tossing flour and/or parm cheese around and if it hits, oh well. "Free" says we're gonna follow all allergy protocols to the letter and try to do this as safely as possible.

And "non" HAS to be assumed that the item is in the product. B/c if you don't see the ingredients, and many restaurants don't let you see labels of every item added to food, you have to know that a severe dairy allergy can't eat it - lactose intolerance can, but not dairy allergy.

Example - non-dairy creamer. Every hotel container you look at will have dairy in it if it just says "non dairy" - and hotel folks have no clue. They think it's fine. So, they add it to a fancy coffee drink and don't even think it could be bad.

PS - And food trucks should always be avoided for allergies if they have any of your allergic products on them that can be transferred - they have no room for multiple fryers, multiple cooking surfaces, etc, to ensure anything more than "friendly" prep...

 

[mistysue]

Right, so both products, "friendly" and "non" should ALWAYS be avoided for those with severe issues. The 1st, restaurants are not going to ensure safety b/c they have the "out" - if you notice, EVERY menu has the language about "no guarantee", so they care much more when they use the term "free" and not "friendly". Friendly says we're tossing flour and/or parm cheese around and if it hits, oh well. "Free" says we're gonna follow all allergy protocols to the letter and try to do this as safely as possible.

And "non" HAS to be assumed that the item is in the product. B/c if you don't see the ingredients, and many restaurants don't let you see labels of every item added to food, you have to know that a severe dairy allergy can't eat it - lactose intolerance can, but not dairy allergy.

Example - non-dairy creamer. Every hotel container you look at will have dairy in it if it just says "non dairy" - and hotel folks have no clue. They think it's fine. So, they add it to a fancy coffee drink and don't even think it could be bad.

PS - And food trucks should always be avoided for allergies if they have any of your allergic products on them that can be transferred - they have no room for multiple fryers, multiple cooking surfaces, etc, to ensure anything more than "friendly" prep...

That is not what that means. You are taking a step further into "worst case scenario" with the labeling and adding interpretations that are not implied from the labels.
Go over the UO - their allergy menus are all "allergy friendly" - but they are using dedicated items the same way as Disney.

If you can't see ingredients, it doesn't matter how they worded anything; you have to assume it could be an issue. But the terms "friendly" and "non" do not mean a product contains something because that is not what those terms mean.

 

[TwoMisfits]

That is not what that means. You are taking a step further into "worst case scenario" with the labeling and adding interpretations that are not implied from the labels.
Go over the UO - their allergy menus are all "allergy friendly" - but they are using dedicated items the same way as Disney.

If you can't see ingredients, it doesn't matter how they worded anything; you have to assume it could be an issue. But the terms "friendly" and "non" do not mean a product contains something because that is not what those terms mean.

Worst case scenario is how severe allergy folks have to approach restaurant eating.

Intolerances and mild allergies usually are okay with best case scenarios.

At UO, I was not allowed to order from any allergy menus. I received a chef visit each time when I mentioned my allergies were severe, even at CS. And sometimes, things that were okay on the "friendly" menus were not okay for me - the chef once even had a sit down order for me, went down, and came back up and said "let's try again"...(which I was grateful for, b/c if the chef's not 100% sure it's safe, it's not safe...so let's get something that is)...

 

[mistysue]

Worst case scenario is how severe allergy folks have to approach restaurant eating.

Intolerances and mild allergies usually are okay with best case scenarios.

At UO, I was not allowed to order from any allergy menus. I received a chef visit each time when I mentioned my allergies were severe, even at CS. And sometimes, things that were okay on the "friendly" menus were not okay for me - the chef once even had a sit down order for me, went down, and came back up and said "let's try again"...(which I was grateful for, b/c if the chef's not 100% sure it's safe, it's not safe...so let's get something that is)...

I understand that, we have to order directly from chefs both at Disney and UO as well. It doesn't change that your advice is not accurate for what the terms mean. You can blanket write off everything that says "friendly" or "non" if you want, but giving people the advice that the terms mean something they do not is not good practice.

 

[Donald - my hero]

we have several snack items in Canada that are labeled as "allergy smart" (that's actually the brand name!) "School safe" "school approved " which basically mean they are top allergen- free (depending on the company it's 8 or our full 12 now) if products declare that they are "non-fill in the blank " they absolutely HAVE to be free of that item.

Those of us who have dietary restrictions play a sort of Russian roulette with every single thing we eat, at home or out. I can't have fresh meat if it's on a soaker pad because they almost always have sulphites in them but that's not required to be labeled because it's not technically involved in food production. Foods that were safe last week still need to be studied every single time at buy them. The words new and improved make me shudder.

I think there are times that those of us in the food allergy community are hard on each other. My allergist reminds me every visit that there is no such thing as a "mild allergy" just because it didn't lead to life threatening symptoms this time doesn't mean it never will. Intolerance to certain foods at times make it hard to navigate the world as well but that doesn't mean they aren't as serious as allergies. If something gets past my first line of defense (hives in my mouth and swollen lips) it might lead to open lesions further down my gi tract.

Basically it comes down to knowing your own limits, how willing you are to trust others cooking for you, how diligent you are with label reading, how far back you track food (I can't tolerate meat products based on what the animal was fed!) But we need to help each other navigate this mine field with grace.

 

[Selket]

He had one time he ate something was just too good, and he made that observation, then I could see the possible explanation dawn on him as he paused eating about 2 minutes before telling me it was time for his epi pen - this was a then 7 year old.

Your post broke my heart a little bit. One of my sons has a severe peanut/tree nut/shellfish allergy and was served something with almonds in it once - at Raglan Road in Disney Springs. At first they tried to argue it was a large oat and then the idiot server we had finally came back and said "oh the chef put almonds in it today." My son was still young then and he knew it was a nut - just terrified him - because he wasn't sure if he had already eaten one or not. (Just to note - we know he is anaphylactic to peanuts and we were cautioned to avoid all nuts because he showed an allergy response to many - it's possible he isn't allergic to almonds or we just got lucky).

I'm not surprised Raglan Road killed someone with a food allergy recently (an adult) - every time I walk by that place I give it a dirty look - far and away the worst experience we've had at any restaurant with him. They have a long history of messing up allergy orders.

 

[WLWildlife]

But we need to help each other navigate this mine field with grace.

Exactly this! We get enough push back from outside the allergy community. Food allergies, Intolerance, and sensitivity are REAL MEDICAL CONDITIONS.

 

[Disturbia]

We always fill a special diets (2 kids with 4-5 allergies each) form about 12 days before our trip. Email Special.Diets@DisneyWorld.com and ask for the form (has changed recently). A special diets coordinator calls and then asks if we want to speak with the chef at each restaurant. The chefs call and are very patient and go through what is safe. Most cases we order the same thing (pasta with grilled chicken and sauce). Some waitresses at WDW can use some extra training (CRT/Space220-they refused to bring out our preordered food). You can also add Quick Service locations and the resort restaurants on the list.

I didn’t realize that the non Disney owned restaurants were riskier, so better to avoid them.

We order groceries via Amazon prime (Whole Foods) or gardengrocers (sometimes ripple milk is unavailable on prime) for breakfast and snack items. Some places like ErinMckenna (formerly babycakes) can deliver cakes/donuts to your resort for free (with a minimum).

 

[HappyDisneyWife]

I know the OP asked about a specific guide (which I do not have experience with)… but since it’s opened up more allergy tips/thoughts- I ought I’d share our Disney allergy experience.

I have celiac, plus several intolerances (some severe, others just annoying). My husband had a cow dairy intolerance which turned into an epi-pen level allergy; and our daughter is a mix with both gluten & cow dairy intolerances, which can leave her feeling sick for days.

Especially for DD- I try and make sure she makes her QS orders in person, (so that neither intolerances are put into her food)… and on that note- here’s my “pro” tip- often there are many more safe QS options for people to order in person vs what the mobile order menu shows. If something sounds good, but isn’t listed as a mobile order option- go in person & make sure it can’t be tweaked to be made safely for you

In Disney, DD has never been harmed, DH had one very bad experience (at Steakhouse 71- where we’d eaten several times before without issue), and I’ve had a few pretty nasty experiences myself (mainly QS, but others too… & I’m the most diligent/paranoid out of the 3 of us ).

All that said- I/we still feel safer in Disney (food-wise) than anywhere else!! My husband almost always gets sick at restaurants (outside of Disney), and my daughter does too. I fare better than them locally (bc of my double-checking & asking for clean gloves/surfaces, etc)… but it still happens more often than in the bubble (mainly bc they are better trained to take allergies more seriously- as a whole).

I hope your trip goes well & you stay safe!!

 

[WLWildlife]

I know the OP asked about a specific guide (which I do not have experience with)… but since it’s opened up more allergy tips/thoughts- I ought I’d share our Disney allergy experience.

I have celiac, plus several intolerances (some severe, others just annoying). My husband had a cow dairy intolerance which turned into an epi-pen level allergy; and our daughter is a mix with both gluten & cow dairy intolerances, which can leave her feeling sick for days.

Especially for DD- I try and make sure she makes her QS orders in person, (so that neither intolerances are put into her food)… and on that note- here’s my “pro” tip- often there are many more safe QS options for people to order in person vs what the mobile order menu shows. If something sounds good, but isn’t listed as a mobile order option- go in person & make sure it can’t be tweaked to be made safely for you

In Disney, DD has never been harmed, DH had one very bad experience (at Steakhouse 71- where we’d eaten several times before without issue), and I’ve had a few pretty nasty experiences myself (mainly QS, but others too… & I’m the most diligent/paranoid out of the 3 of us ).

All that said- I/we still feel safer in Disney (food-wise) than anywhere else!! My husband almost always gets sick at restaurants (outside of Disney), and my daughter does too. I fare better than them locally (bc of my double-checking & asking for clean gloves/surfaces, etc)… but it still happens more often than in the bubble (mainly bc they are better trained to take allergies more seriously- as a whole).

I hope your trip goes well & you stay safe!!

Thank you for sharing and the well wishes!

 

[Disturbia]

On a side note, we recently found out that our DS has very high outdoor allergies (he suddenly turned asthmatic at school (oxygen dropped to 80) and spent 5 hours in the ER; was diagnosed with mild reactive respiratory issues in the past). The allergist was certain it was outdoor allergens (season came early and happened to coincide with cold/flu season this year) and maybe a cold combined and we don’t need to test. I pushed for testing and he tested high on 8 outdoor allergens!!! Even the allergist was shocked. He then offered immunotherapy which I didn’t realize was an option (should have been offered to our teen).

Even outdoor allergies can turn life threatening and I never knew that they could be treated.

 

[mistysue]

On a side note, we recently found out that our DS has very high outdoor allergies (he suddenly turned asthmatic at school (oxygen dropped to 80) and spent 5 hours in the ER; was diagnosed with mild reactive respiratory issues in the past). The allergist was certain it was outdoor allergens (season came early and happened to coincide with cold/flu season this year) and maybe a cold combined and we don’t need to test. I pushed for testing and he tested high on 8 outdoor allergens!!! Even the allergist was shocked. He then offered immunotherapy which I didn’t realize was an option (should have been offered to our teen).

Even outdoor allergies can turn life threatening and I never knew that they could be treated.

My son (with history of anaphylaxis to a bunch of foods) used to have an anaphylaxis-like reaction to dogs. Yes, even service dogs, and we found ourselves randomly needing to leave restaurants, stores, parks, etc. It was super fun.
If nobody has mentioned it yet, with seasonal allergens look into oral allergy symptom in case it happens so you would know what's going on. My son was afraid of raw fruit for many years and the allergist never mentioned it was a possibility. Basically pollens/molds on the outside of produce make your mouth or throat itch, or cause even mild swelling. Washing can help but often the coating on foods can trap it there so it doesn't wash off all the way.

 

[DonnerB]

Also off topic from the original question, but I always find threads like this useful when helping my sister plan (Celiac with egg intolerance), so here’s a quick blurb from our recent trip:

I assume a lot of this came into play following the Raglan Road incident . All of her allergy friendly mobile orders came on a purple tray. I don’t remember that on our most recent trip (January 2023). Cast Members seemed exceptionally well trained when discussing allergies. Especially at the Food and Wine booths. They’d make a quick phone call and have answers for us in a minute or two if we had any concerns. She felt confident in her choices and options and had no issues.

We had great experiences with all our table service dining (especially Narcoosee’s, which has a pretty expansive gluten friendly menu). And the amount of options for her at EPCOT was a pleasant surprise. They’ve obviously put some thought into the menus at Brew-Wing Lab and The Fry Basket because all their wings and fries were safe for her.

I’ve traveled the world with her since her diagnosis. Disney continues to be the easiest place for us to eat safely and well!

 

[WLWildlife]

Disturbia, Mistysue, and DonnerB, thank you for sharing your knowledge and experience!

 

[Disturbia]

My son (with history of anaphylaxis to a bunch of foods) used to have an anaphylaxis-like reaction to dogs. Yes, even service dogs, and we found ourselves randomly needing to leave restaurants, stores, parks, etc. It was super fun.
If nobody has mentioned it yet, with seasonal allergens look into oral allergy symptom in case it happens so you would know what's going on. My son was afraid of raw fruit for many years and the allergist never mentioned it was a possibility. Basically pollens/molds on the outside of produce make your mouth or throat itch, or cause even mild swelling. Washing can help but often the coating on foods can trap it there so it doesn't wash off all the way.

Manuka honey helps if the allergies cause a lot of sneezing/itchy irritated throat provided you’re not allergic to its ingredients. It worked when Claritin+Flonase+nasal spray wouldn’t stop a sneezing fit. I buy high grade Manuka 20 UMF+ from Costco (too expensive to use daily).

 

[WLWildlife]

In case anyone is interested, I did purchase this product. It was very helpful and informative. You can download to.your phone and carry it with you. It saved us a lot of time, ruled snacks and locations in or out, and helped DD enjoy some things she can't safely consume outside of WDW. We did look at the allergy binder before ordering at every location. I will gladly share where I purchased if you PM me, I don't believe it can be posted, but we found it to be very helpful. Thanks to everyone who posted.