Disney Dining with Interstitial Cystitis

[sleepingbe]

I have just recently been diagnosed with IC and I am so scared of what to eat on our upcoming Disney trip. I know there are other members here with this condition because I saw a board once where they were sharing their stories. I know we are all a little different, but I would like to ask fellow ICers a few questions?

What foods are the safest bets in the parks? I would like to do both sit down and quick service meals. Also, what about desserts? Any tips/ feedback would be greatly appreciated. Thanks

 

[Pixiedust74]

I keep chickening out of my cystoscopy, but I very possibly have IC myself. I've been trying the IC diet and it has helped somewhat. But it's no picnic.

I can't comment much on the table service places because I normally just do CS. All the menus are on here, so you can review those and see what strikes your fancy. You should be fine with most CS. Disney pizza normally STINKS. Therefore, you won't be super tempted to eat most pizza. Auntie Gravity's has some decent caramel sundaes and vanilla soft serve, although I do break down and eat a Ghiradelli's hot fudge sundae every trip. A lot of CS offers apple slices, and if you are on the diet, that's one of the better fruits.

Bottle water isn't cheap there, so you might want to pack one you fill yourself with a filter.

Have a good time! I hope you find a treatment regimen that works well for you, I know how disruptive IC can be on a daily basis.

 

[CoolDisneyCat]

Has your doctor giving you info on the IC diet? It really helps me a lot!

Using the diet, with time, you can figure out what foods make your IC worse. Best bet is to stay away from anything with a lot of acid, like coffee, soft drinks, tomatoes. Once you've got a handle on what you can eat, just check the restaurant menus.

Also ask your doctor about an OTC product called Prelief. It can help cut the acid.

What's gonna kill me during our trip in Dec. is trying to stay away from chocolate! it gives me problems every time!

 

[sleepingbe]

I never did the cystoscope either, Pixie. The doctors diagnosed me on symptoms alone. I have been doing the diet, but like you said, its no picnic. I don't want to end up eating the wrong thing and spending the trip in the hotel. I know we're eating at Le Cellier one day, and I was going to get my steak plain just to be on the safe side, but I'm not sure about the side dishes and I'm always worried about bread.

Coolcat,
I tried prelief and it gave me crazy frequency. I couldn't handle it. I was so disappointed The vanilla w/caramel sounds delicious. I should be OK with that.

I usually go to Boma, but I'm staying clear away from there out of extreme fear. I'm looking forward to my trip, but it will be so sad to watch my husband eat all the things I can't.

How do y'all do with the hamburger buns? I can do Five Guys and Wendy's with no problem, but I haven't tried any others. I'm thinking I'm going to have to stick w/salads and meat the whole time.

 

[GadgetTheInventor]

I don't have any experience with IC, but I do have lots of food allergies.

Generally speaking though,

1. The menus are posted online at different sites...some even have pictures. See what strikes your fancy.

2. CS restaurants will have a big binder or binders that list the ingredients for each food item/entree. You can really get a good idea if there are too many "bad" ingredients for you. Many of the food items are the same from place to place so you don't necessarily have to search the binder each time. The binder search can take anywhere from 5 to 45 minutes though so just be prepared if you are traveling with others.

3. TS restaurants can get kinda messy in the back with lots of sauces and ingredients. It will probably be quite difficult or impossible to get a list of every ingredient for the meal you want. They really aren't set up to deal with exclusions of 10 or 15 ingredients. Just be prepared to eat lightly and supplement later.

4. Put any requests in print and give a disposable copy to the server. Restaurants are noisy when you are giving your order and the servers and cooks are juggling dozens of orders. Giving them an easy-to-read cheat sheet lets them know that you want to help them succeed with your order.

As with any dietary restriction, flexibility and a positive attitude is key. The food staff is often undertrained, underpaid, and overworked and your special meal request is just one more complication in an already complicated job.

Don't forget to tip well to help encourage positive accommodations in the future. They don't have to bend over backwards for our special food requests. WDW is already expensive and I figure a few extra bucks to be accommodated at a meal is money well spent.

 

[clanmcculloch]

We treat cranberries and citrus fruit as allergies for my 13 year old as these are major IC triggers for her IC. Even a tiny bit of cranberry is 100% guaranteed to trigger a flare. She can handle a tiny bit of lemon or lime juice (it has to be one of the last couple of ingredients on the list and cross contamination isn't a concern but she can't handle more than this though over a couple of days we try to avoid doing this more than once) but even a tiny bit of orange and she's guaranteed a flare.

She is entirely diet controlled. She is also off a bunch of other foods but those are for true IgE allergies or to treat GI issues. We treat each and every one of these food as allergies, especially when talking to chefs and restaurant managers who prepare our food.

I assume you're on some kind of elimination diet or else you wouldn't be asking how people handle dining. What do you avoid? What are your triggers?

 

[clanmcculloch]

I don't have any experience with IC, but I do have lots of food allergies.

Generally speaking though,

1. The menus are posted online at different sites...some even have pictures. See what strikes your fancy.

2. CS restaurants will have a big binder or binders that list the ingredients for each food item/entree. You can really get a good idea if there are too many "bad" ingredients for you. Many of the food items are the same from place to place so you don't necessarily have to search the binder each time. The binder search can take anywhere from 5 to 45 minutes though so just be prepared if you are traveling with others.

3. TS restaurants can get kinda messy in the back with lots of sauces and ingredients. It will probably be quite difficult or impossible to get a list of every ingredient for the meal you want. They really aren't set up to deal with exclusions of 10 or 15 ingredients. Just be prepared to eat lightly and supplement later.

4. Put any requests in print and give a disposable copy to the server. Restaurants are noisy when you are giving your order and the servers and cooks are juggling dozens of orders. Giving them an easy-to-read cheat sheet lets them know that you want to help them succeed with your order.

As with any dietary restriction, flexibility and a positive attitude is key. The food staff is often undertrained, underpaid, and overworked and your special meal request is just one more complication in an already complicated job.

Don't forget to tip well to help encourage positive accommodations in the future. They don't have to bend over backwards for our special food requests. WDW is already expensive and I figure a few extra bucks to be accommodated at a meal is money well spent.

I think we've been vacationing at different places. This is completely different than my experiences at WDW.

3. 100% innacurate. There is an area of the kitchen specifically for preparing allergy meals and the chefs take LOTS of precautions to ensure no cross contamination. We go every trip with 3 people who all have lists of allergies and chefs are very good at handling it. This is exactly what they're set up for.

4. I do always hand printed lists to the chef and I think that's a really great idea if you're dealing with several allergies and/or obscure allergies. But, I give it to the chef. I do not place my order with a server and I do not give the list to the server and the server does not act as an intermediary in any way. At WDW you should be working with a chef.

Flexibility is absolutely VERY important but boy do I take issue with your statement about them being undertrained. WDW chefs are probably some of the best trained chefs in the country when it comes to food allergies. This is one area where WDW truely excells.

Frankly, our servers really don't do a lot for us. Chefs take our orders and carry our food to us. I do tip well for the most part since we're at our table longer than most people therefore their turnover rate has dropped but honestly they do not do extra for us. All I expect in return is keeping our drinks filled, clearing our dishes and being friendly and they a good tip (that really is all they end up doing for us). There have been times where I can't track down my server for things like refills on water but the chef sure does come out to check on us. At times I've wished I could tip the chef instead of the server and I most definitely do NOT tip well in those kinds of situations. I do the next best thing as far as the chef goes though by sending Guest Services a note explaining how great a job the chef did.

 

[sleepingbe]

Clan McCulloch,
I just started with the symptoms in December, so I am still learning what bothers me. I know anything citrus IMHO is the devil. Lol Spicy seasonings also get me. I haven't experimented with all bread because I'm concerned about the having a flare. What I've pretty much been doing is eating most things plain or with just cheese and using salt, pepper and butter for flavoring, unless I'm making it at home. I stay away from all boxed foods in fear of a flare. I'm just so scared I'll mess up on vacay and be stuck in bed which is the last thing I want. There are so many different sauces and marinades, if I don't get it plain, I'm probably taking a huge risk.

Gadget,
Thanks for the info on the binder and menu info. I'll check it out and see what my best bets are for eats. If I'm in doubt, I'll just get it plain. Fortunately, my bladder seems to like French fries so I can always survive on that and vanilla ice cream. Lol

Thanks guys for your input.

 

[clanmcculloch]

Clan McCulloch,
I just started with the symptoms in December, so I am still learning what bothers me. I know anything citrus IMHO is the devil. Lol Spicy seasonings also get me. I haven't experimented with all bread because I'm concerned about the having a flare. What I've pretty much been doing is eating most things plain or with just cheese and using salt, pepper and butter for flavoring, unless I'm making it at home. I stay away from all boxed foods in fear of a flare. I'm just so scared I'll mess up on vacay and be stuck in bed which is the last thing I want. There are so many different sauces and marinades, if I don't get it plain, I'm probably taking a huge risk.

Gadget,
Thanks for the info on the binder and menu info. I'll check it out and see what my best bets are for eats. If I'm in doubt, I'll just get it plain. Fortunately, my bladder seems to like French fries so I can always survive on that and vanilla ice cream. Lol

Thanks guys for your input.

Yup, citrus is the devil. I'd recommend avoiding cranberry and blueberry as well since those are a couple of the other really common trigger foods. Oh, and tomotoes. My DD is lucky that she can eat tomato sauces without any problems but tomatoes (raw or cooked) are among the most common trigger foods. I don't actually know if blueberries trigger my DD because they showed up on her allergy tests before we figured out IC so she was already avoiding them.

It is very easy to order your food without sauce or seasoning. VERY easy. TS restaurants typically will have some kind of pasta and some kind of protein, vegetables and other starch that can be prepared plain. If you're avoiding citrus fruit to the degree that you're treating it the same as those who have allergies meaning you avoid all traces then I suggest you actually call it an allergy when speaking with servers (I list DD's cranberry and citrus issues with her allergies though I do clarify that she can handle trace amounts of lemon since she can). If you just avoid obvious citrus and asking for your food plain then it's probably not worth the trouble since it does take extra time to order with allergies. At CS restaurants, for the most part the food at MK and DHS is pretty simple and basic foods. At Epcot and AK you'll find some more exotic types of foods that are more seasoned but you can easily find foods that are plain right on the menu. I'd still ask questions though to be sure that seasonings aren't being put on the food so you can be sure it's plain.