Unusual Food Allergy - Should we request table for 2 rather than share?

[Starwind]

Curious how you handle the airborne seafood one since even at a private table there will be tables around yours. Are those people informed that they cannot order seafood? I'd be pretty livid if I paid money for a cruise and was told "Sorry, because you got the luck of the draw to be at a table next to someone with an allergy, you cannot order anything from this food group." (Seafood would not be an issue for me because I find it disgusting anyway. But a lot of people would want it.)

No, the tables around us can have whatever they want.

When we work with Special Services i n advance of the cruise, we ask for a table away from others/that has better ventilation, and try to sit at the table in a way so we are as far away from others as possible. An example on our last cruise -- in Royal Court we had a round table that backed to a wall and to one side a pillar, so there was actually several feet to the table to the left and a few feet to the table to the right, the wall behind, and no table directly in front (it was the "right of way" walking path to get to the left hand table and to the serving station). I sat against the wall as far from each table as possible - we moved the chairs a bit. In Enchanted Garden we have been put in tables along walkways and in corners. So, tables with "natural" buffers to others. Not seated next to the serving station.

Also, the airborne reaction doesn't get noticeable or severe enough until some (unknown) threshold gets hit -- so a Red Lobster restaurant is a no go (can't even get past the front door), but an Outback is usually manageable. Most of the time in the MDRs we are mostly ok, but I have had to leave once mid-meal due to a reaction and our serving team recommended we skip the MDR one night because it would be worse than the night I had to leave (it was 2 nights later - lobster night, when "everyone gets the lobster"). Our serving team arranged for our meal to be brought to our room for that night. Most of our cruises have been on the Dream so it has not been as much as a problem as on the Fantasy.

SW

 

[Dug720]

No, the tables around us can have whatever they want.

When we work with Special Services i n advance of the cruise, we ask for a table away from others/that has better ventilation, and try to sit at the table in a way so we are as far away from others as possible. An example on our last cruise -- in Royal Court we had a round table that backed to a wall and to one side a pillar, so there was actually several feet to the table to the left and a few feet to the table to the right, the wall behind, and no table directly in front (it was the "right of way" walking path to get to the left hand table and to the serving station). I sat against the wall as far from each table as possible - we moved the chairs a bit. In Enchanted Garden we have been put in tables along walkways and in corners. So, tables with "natural" buffers to others. Not seated next to the serving station.

Also, the airborne reaction doesn't get noticeable or severe enough until some (unknown) threshold gets hit -- so a Red Lobster restaurant is a no go (can't even get past the front door), but an Outback is usually manageable. Most of the time in the MDRs we are mostly ok, but I have had to leave once mid-meal due to a reaction and our serving team recommended we skip the MDR one night because it would be worse than the night I had to leave (it was 2 nights later - lobster night, when "everyone gets the lobster"). Our serving team arranged for our meal to be brought to our room for that night. Most of our cruises have been on the Dream so it has not been as much as a problem as on the Fantasy.

SW

Gotcha. Thanks for answering!

 

[Starwind]

Gotcha. Thanks for answering!

Welcome.

Needless to say, it isn't foolproof, it is a risk, but we try to live our life as much as possible. Mostly it works out ok, sometimes not so much. But after living with that specific allergy for >30 years, you kind of get used to it and adapt as best you can.

SW

 

[lozzypop]

Secondly, my DS16 has noticed that raw celery causes his tongue and mouth to go numb. Did your daughter start with similar symptoms? I asked him to stop eating it, this is very new to him.

It didn't happen quite that way for my DD. Her first reaction (although we didn't know it at the time) presented symptoms not dissimilar to someone coming down with a cold. We had eaten at a mall food court and were shopping at Sephora when DD complained of not feeling well. We cut short what we were doing and went home - that immediate cessation of activity probably cut short the reaction. First full-blown reaction was after DD had emergency surgery (unrelated to her allergy) - she was due to be released to go home when she had an anaphylactic reaction (about an hour after lunch) That was the single most frightening thing that happened to me as a parent. My DD was gasping for breath, freaking out because she didn't know what was happening, and we were surrounded by nurses and doctors who also did not know what was happening. She spent the night in ICU and went home the next day. ICU doctor prescribed Epi-pens and we spent the next 18 months trying to figure out what she was allergic too.

I definitely would follow up on your son's tongue going numb, either with your family doctor or an immunologist. Anaphylaxis is scary - DD's reaction is so severe (only 2nd worst her Doctor had seen in 10 years practice as a pediatric specialist) that she has to carry and use 2 Epi-pens, not just one.

Also I would mention that celery lurks in foods that you wouldn't think of - my DD's gym teacher mentioned that food companies use celery fiber as filler after my DD had mild reaction to fruit gummy snacks.

 

[lozzypop]

In your case, you'll have to consider if it would just be safer for her to avoid the list of allergens outright for the whole cruises, then you don't have to be as concerned with matching/timing heartrate and eating, etc. Anaphylaxsis is not something you want to experience out at sea, though they do have a well-equiped medical centre on board with very nice staff !

SW

I think this is good advice. On land, I want to balance my DD requests not to be singled out at the dinner table when her allergy does give her the choice as to whether she consumes or not, given the second exercise factor. But as I have already said to her, the cruise ship is a whole new ball game and we have to be extra cautious.

So I expect we will notify DCL ahead and time, obtain as many ingredient lists as we can ahead of time, and speak to the chefs about the dishes she will be ordering. We won't worry about a separate table though!

 

[cheshie6]

I'm an allergy mom, my son is allergic to milk/dairy (from all animals), and eggs. There's only 3 of us, but DH and I love the shared tables. Would they automatically give us our own table due to his allergies? His milk allergy is a contact allergy as well, so if someone spills milk on him, he will break out in hives. Our next cruise is our first with LO, so the allergies thing is a whole new experience. And I'm a planner type A person.

 

[Starwind]

I'm an allergy mom, my son is allergic to milk/dairy (from all animals), and eggs. There's only 3 of us, but DH and I love the shared tables. Would they automatically give us our own table due to his allergies? His milk allergy is a contact allergy as well, so if someone spills milk on him, he will break out in hives. Our next cruise is our first with LO, so the allergies thing is a whole new experience. And I'm a planner type A person.

They may or may not. We have always asked for a private table.

SW

 

[Starwind]

I think this is good advice. On land, I want to balance my DD requests not to be singled out at the dinner table when her allergy does give her the choice as to whether she consumes or not, given the second exercise factor. But as I have already said to her, the cruise ship is a whole new ball game and we have to be extra cautious.

So I expect we will notify DCL ahead and time, obtain as many ingredient lists as we can ahead of time, and speak to the chefs about the dishes she will be ordering. We won't worry about a separate table though!

You definitely should notify DCL Special Services ahead of time and have a conversation with them about your concerns and how they will manage the allergies a nd ensure they have the allergies noted in the reservation. https://disneycruise.disney.go.com/guest-services/special-dietary-requests/

A heads up that I don't know how successful you will be with getting many ingredient lists, though you may be. We were given thee ingredient list of the gingerbread kits head of our Merrytime cruise, so it isn't impossible. Plus, ingredients can change based on suppliers.

But things work differently on the ship than on land. With food allergies you are strongly encouraged to eat in the main dining rooms as they have full kitchens and raw ingredients and are able to best accommodate allergies. The "quick service" restaurants on the pool deck have VERY VERY limited prep areas and are not working entirely from raw ingredients -- though depending on one's allergies they MAY be able to do some safe things [you need to speak to a supervisor or chef to see what is possible].

Buffets are usually NOT a good idea with food allergies. And I would caution against them. My sister has a seafood allergy and decided to eat lunch at the buffet one day. She carefully chose her food to NOT have any seafood. She reacted and we got a trip to the medical centre. Clearly something she ate was cross contaminated. No more buffets for her.

At the end of dinner each night your serving team will give you the menu for dinner the next night and you will place the allergy order. You can also place an allergy order for breakfast and lunch the next day. You tell them what you want and they do their best to make it happen. If it just can't happen then they do their closest approximation.

*YOU* don't need to worry about the ingredients, the chefs preparing the food do. You want butternut squash soup ? They will make it safely [well, as long as you are not allergic to butternut squash, in which case your serving team will politely let you know they can't do it and suggest an alternative, perhaps the tomato soup? ;-) ]. You want the chicken schnitzel ? they will find a way to make it or an approximation of it... and if they can't, you get a safe chicken breast. Sometimes something may just not be possible -- if the non-dairy ice creams they have on board are ones I can't have because of tree non CC risk, then that is just not happening, BUT they have sorbets they make from scratch and fruit and Namaste cake mix so dessert is still a possibility...

This is a great video someone took of a Galley Tour on the Disney Dream. I found it quite enlightening and they spend a bit of time talking about allergy orders. I recommend watching it.

What you do need is to have a clear list of what specifc items are not safe and provide that to DCL. I also carry a Chef's Card with me that has the same info on it, though I usually don't need to use it on board ship [I do use it on the pool deck because it is VERY VERY loud up there and hard to hear when having the conversation with the supervisor]. For a more complicated/long list it may be useful to have a card for each meal that they can attach to the pink order form they use [we haven't had to do that, for mine they are able to just write them down on the pink form -- perhaps someone with a complicated/long list can chime in on if they just write it out on the pink form or if attaching a list is helpful/done].

SW

 

[Luv2Diz]

Curious how you handle the airborne seafood one since even at a private table there will be tables around yours. Are those people informed that they cannot order seafood? I'd be pretty livid if I paid money for a cruise and was told "Sorry, because you got the luck of the draw to be at a table next to someone with an allergy, you cannot order anything from this food group." (Seafood would not be an issue for me because I find it disgusting anyway. But a lot of people would want it.)

I can’t see Disney telling people that they can’t order certain foods. Like you said, we all paid for the cruise and have the right to order what we like. I do order seafood almost every dinner. If it was a problem, I would think Disney would do some re-seating rather than say you can’t order something.

 

[Plaid Princess]

My DS16 has noticed that raw celery causes his tongue and mouth to go numb. Did your daughter start with similar symptoms? I asked him to stop eating it, this is very new to him.

That’s how my Anise/Liquorice and Cantaloupe allergies started. I’d noticed it periodically, but never really connected it with a particular food until I had bad reaction that turned into the pneumonia (I have asthma and always have respiratory reactions to my allergies). Probably worth a visit to the allergist.

 

[lozzypop]

Just an update everyone!

Our May 11 - 18 Fantasy cruise was wonderful and we had a fantastic time! We shared a table with two other single mom/kid pairs and had a great time with them - glad we decided to share instead of requesting a solo table.

Unfortunately however, our server definitely had some "issues" understanding my daughter's allergy. The Head Server seemed to get it, but I spent a lot of time the first night trying to explain it to the Server. And that threw our dinner service off completely. Plus the server hinted that the confusion over the allergy discussion was to blame for the lackluster service. Which I did not appreciate. Service improved somewhat after that, but it definitely did not reach the "excellent" standard the server was pushing for. The practical solution was that following each night's dinner, my DD ordered from the next night's menu, which worked out OK. The chefs made my daughter's food to order while excluding as many allergens as possible.

The upshot is that this is the last time I am going to try and explain my DD's allergy at Disney (or at any restaurant really) which is not ideal. It's just too complicated for some people and it doesn't help that most people have never heard of this type of allergy - I think they think that I am making it up! I wish I was. I am only too aware that the allergy has the potential to kill DD, but I guess we should count ourselves lucky that exposure is not automatically an issue. We will just have to manage as best we can while carefully looking at menus.

 

[Cruising Engineer]

Glad you wrote the up date to your cruise and how things worked or didn't work out. This is good knowledge for other cruisers with allergies to know. I have egg allergies and 8 DCL cruises completed without an incident. Thank you.

 

[daedelus]

Just an update everyone!

Our May 11 - 18 Fantasy cruise was wonderful and we had a fantastic time! We shared a table with two other single mom/kid pairs and had a great time with them - glad we decided to share instead of requesting a solo table.

Unfortunately however, our server definitely had some "issues" understanding my daughter's allergy. The Head Server seemed to get it, but I spent a lot of time the first night trying to explain it to the Server. And that threw our dinner service off completely. Plus the server hinted that the confusion over the allergy discussion was to blame for the lackluster service. Which I did not appreciate. Service improved somewhat after that, but it definitely did not reach the "excellent" standard the server was pushing for. The practical solution was that following each night's dinner, my DD ordered from the next night's menu, which worked out OK. The chefs made my daughter's food to order while excluding as many allergens as possible.

The upshot is that this is the last time I am going to try and explain my DD's allergy at Disney (or at any restaurant really) which is not ideal. It's just too complicated for some people and it doesn't help that most people have never heard of this type of allergy - I think they think that I am making it up! I wish I was. I am only too aware that the allergy has the potential to kill DD, but I guess we should count ourselves lucky that exposure is not automatically an issue. We will just have to manage as best we can while carefully looking at menus.

Hey lozzypop,

Thanks for updating the thread and I'm also sorry to hear about your less than excellent experience. I think a lot of it comes down to who you get as a server, head server, etc. We've had completely stellar servers on all but one cruise (out of 7) and we mentioned that to the head server and he swapped us for the next cruise (it was a back to back).

As a former paramedic, I'd also recommend to anyone in this situation that you also speak with Guest Services and the onboard Medical Services staff. If you have an Epi-Pen or other remedy, make sure Med Services knows that. Tell your server (assuming they understand) that A) I have this allergy and B) if I'm blue and on the floor, look in my right pocket and follow the instruction, etc.

As your daughter is 16 and is still eligible for Vibe, I'd make sure the counselors there know as well and are informed about a remedy (assuming she has one?) and how to administer it, as that's usually where youth are in those hours after dinner that are critical for her.

And ounce of prevention and all that. Best to you and her as she learns to cope with this!

Cheers!

 

[Dug720]

Hey lozzypop,

Thanks for updating the thread and I'm also sorry to hear about your less than excellent experience. I think a lot of it comes down to who you get as a server, head server, etc. We've had completely stellar servers on all but one cruise (out of 7) and we mentioned that to the head server and he swapped us for the next cruise (it was a back to back).

As a former paramedic, I'd also recommend to anyone in this situation that you also speak with Guest Services and the onboard Medical Services staff. If you have an Epi-Pen or other remedy, make sure Med Services knows that. Tell your server (assuming they understand) that A) I have this allergy and B) if I'm blue and on the floor, look in my right pocket and follow the instruction, etc.

As your daughter is 16 and is still eligible for Vibe, I'd make sure the counselors there know as well and are informed about a remedy (assuming she has one?) and how to administer it, as that's usually where youth are in those hours after dinner that are critical for her.

And ounce of prevention and all that. Best to you and her as she learns to cope with this!

Cheers!

Agree with this!

To be honest, my guess is a lot of the confusion came in with the “she can eat it, but she cannot exercise after” thing. Probably easier in the future to just list the allergens and avoid the explanation.

I say that because I have a peanut allergy, but ONLY if I directly ingest a peanut or peanut product. I am fine with “produced in a facility with...” stuff. I developed this at 40. Insane. Our first DCL Cruise I had noted it, and when we went to the Concierge Lounge, the host asked the severity, and when I explained it and said “I normally just ask if something has peanuts” he asked if I was comfortable with that and when I said yes, he said he would take it off my file. But apparently it only came off for that cruise as in February following the first cruise I was back on the Dream. I ordered the rum-soaked chocolate cake on Pirate Night (this was pre-gluten-free) and it was rounds about if I could have it because my account was tagged allergy and it is made in the facility with. Finally my sister (who works on the line and had gotten permisson to eat with me) said “I will take responsibility if anything happens. She knows her body.” And after dinner we went to Guest Services and she made sure it was removed from my account - I have not had that issue since. So yeah - sometimes explanations we think are helpful just confuse things more.

 

[Starwind]

I agree that the explanation is likely what lead to the confusion and resulting service issues.

Just going off the menu is tricky because there are hidden allergens in things which may not be obvious , plus the potential CC risk. Outright avoiding is the easiest option, particularly since it allows Disney to invoke their allergen protocols without confusing anyone. But it also limits what one can eat.

For normal restaurants, it is easy: if the allergy isn't relevant for that particular meal [because there wasn't/won't be exercise] then you could choose to not state the allergy. If it is going to be relevant, state the allergy as simply anaphylaxsis to XYZ -- they don't need the rest of the explanation, just to know what foods are forbidden *for that meal*.

On the ship it is more complicated because your servers are the same and the allergy is noted on the reservation so every time you eat in an MDR it shows up.

One thing we have found helpful is when we board the ship, we go to the "dining changes" session that they hold usually in one of the MDR. it is usually from around 1230 to 1500, and is a first come first served drop in session. At it you get to speak with a Head Server, confirm the allergies are listed correctly, discuss how to manage the allergy [this could be a good time to explain the reality of it and seek their advice on how to handle it with your serving team], and usually pre-order dinner for that night. When they haven't had us pre-order it there, they have had us go to the MDR that is open and pre-order it there. Either way, it gets pre-ordered. This gives the chefs a few hours anyways to come up with safe options. Makes dinner that night go fairly smoothly, IME. Note your options are more limited than in later nights since there is less time for chef preparing/magic. But you are ordering through a Head Server who will be able to help with that.

Glad you enjoyed the cruise and that although service had issues the cruise itself was uneventful !!

SW

 

[Bonnie1222]

I am so glad you guys had a good time.

Can I ask, do you explain the entire allergy situation (exercise etc) to the server or just say "She is allergic to...." Sometimes more information is not the way to go. Many of the servers as you know speakEnglish as a second (or third) language and they do their best. But when you tell them too much they get confused. I agree explain to guest services, the medical team and I personally might consider going to the head server before dinner (show up early or go late during the first seating if you have the second seating) and ask for 5 minutes to explain a difficult allergy situation. Explain it all if need be but the bottom line is to the chef's... She CANNOT eat these items.

I'm allergic to Sage - I won't get deathly ill, but I will have a reaction. If I eat is I'll be sick but it isn't life or death. I don't tell them anything except I cannot have anything that contains Sage. They get it right every time.

 

[cruisehopeful]

The upshot is that this is the last time I am going to try and explain my DD's allergy at Disney (or at any restaurant really) which is not ideal. It's just too complicated for some people and it doesn't help that most people have never heard of this type of allergy - I think they think that I am making it up! I wish I was. I am only too aware that the allergy has the potential to kill DD, but I guess we should count ourselves lucky that exposure is not automatically an issue. We will just have to manage as best we can while carefully looking at menus.

Thanks for the update! While I know you are done with explaining the allergy, I would still recommend carrying a card with listed allergens. You don't need to explain anything. Just say she is allergic to these and leave it at that.

I, too, have a daughter with exercise induced anaphalaxis. It was never tied to a food, but likely is gluten as so many other family members are gluten intolerant. My daughter is literally allergic to running. It was the craziest thing when we got the diagnosis, but also a relief because now we had "proof" that she couldn't do things like that. My poor kid had to go through a lot to get to the diagnosis and I'm sure yours did, too.

I'm surprised by how many people who work in the food industry don't know what foods really are. My husband can't eat nightshades. We still have to explain exactly what everything in that family is when we eat out most of the time. At this point, we've met a lot of people who can't eat nightshades, so I know it isn't as unusual as it was 10 years ago.

 

[kiford]

My daughter has a sunflower allergy, so we also have difficulty in restaurants, etc, because sunflower oil is used so often.

So glad to hear that someone else has this allergy (well, not glad that she has this allergy, but glad I'm not alone). Most people think I'm making it up. Sunflower is part of the Aster family as is ragweed. 35% of people allergic to ragweed (to which I have a very strong allergy to) are allergic to sunflower and everything else in the Aster family including marigold and chamomile. Both of these often appear in herbal teas and they, and sunflower, are in virtually every "natural" skin care product. I've also found that any skin product that lists Vitamin E (aka tocopherol) is likely to have that sourced from sunflower oils, sometimes from very concentrated oil. I originally switched years ago from overly chemical based skin products to natural products because of skin sensitivity but the irony is that I'm now forced to switch back to a limited selection of purely chemical-based ones to prevent rashes and eye swelling.

Sunflower is also, unfortunately, becoming nearly ubiquitous in snack foods (snack cakes, potato chips, pretzels, popcorn, granola bars), crackers, tortillas, candies, chocolates and breads as it is frequently replacing soy (soy oil and soy lethicin) because so many people are allergic to that. Many fast food places that serve anything with a bun are using sunflower. Even products I've eaten for years have suddenly switched to sunflower. I've recently discovered that picking up products which list "vegetable" oil are not safe because although sunflower is not a vegetable, "vegetable oil" either simply means not animal based or is subject to cross contamination with sunflower and is not disclosed since it's not viewed as a problem. I now have to make sure that the type of oil is specified - soy, palm, coconut, etc. If it just says vegetable, I avoid it. It's not life-threatening but I've spent way too many nights throwing up after eating something I thought was safe. It's becoming more and more difficult to navigate eating out.

I suppose the only upside is that I've had to cut out snack foods and most fast foods but I worry that it's only a matter of time before it replaces any kind of vegetable oil and then it will get harder.