Diabetics in need of Carbohydrate Info

[Alice2020]

After spending $100/day to get the dining plan for my family, I found out today that WDW will not give me information on carbohydrate counts in food so that I can give the right amount of insulin (The wrong insulin dose can result in death). Even if you personally are not diabetic, chances are you know someone who is. Please - read about my experiences today and then write or call Disney World and tell them to get their act together so that the millions of diabetics out there can have a good time at Disney without ending up in the hospital!

Letter sent to WDW Food & Beverage Operations today:

To whom it may concern:

I purchased the Disney Dining Plan for my upcoming WDW vacation (reservation ********). Today, I tried to contact dining services to request nutritional information. I have never had a problem going to a restaurant and requesting nutritional information at home. However, sometimes it takes the restaurant 5-10 minutes to locate the info and I thought I would avoid waiting for the info at WDW by requesting the info ahead of time. Guest Relations cast members tell me that carb counts can be made available when I show up to a restaurant service, but Dining cast members tell me that this information is not available. I am writing to try and get info AT LEAST for my table service reservations and to express my deep disbelief and anger that WDW will not provide this service for its guests without the hassle of 2 phone calls (totaling 45 minutes) and speaking with 7 cast members. I am still unable to be certain that any restaurant at WDW offers any sort of nutritional info.

I am insulin-dependent diabetic for the last 25 years. The last 9 years, I have used an insulin pump and counted my carbohydrates to control my blood sugar. It is imperative that I have a good idea of how many carbs I am eating to give the correct amount of insulin. If I can not get a close carbohydrate count my blood sugar can either drop low enough to cause seizures and/or death or rise high enough to put my body into a state of diabetic ketoacidosis that can result in a critical care hospitalization and/or death. Blood sugar is affected by activity level, other medical conditions (such as dehydration from heat or stress from dealing with large crowds), carbohydrate intake and insulin dosage. During a WDW vacation, there is usually greater activity level than normal and vacationers are constantly dealing with crowds and fighting dehydration. I have done my part to make sure that these factors will be minimized on my vacation (I have a touring plan to minimize being in crowds, a water bottle ready, I am going in October when the weather is cooler, and I purchased a $2000 continuous glucose monitoring system to help make sure I know when to adjust insulin for activity). All I need from WDW is a carbohydrate count of the food they prepare and serve. I attempted to call the 407 WDW DINE number and I was given the food service department for each of the 4 parks. The first park I reached was Disney Hollywood Studios where I was told that I could be placed on special diet for my reservation and I could receive a guide to portion sizes. I want to let you know that many people are unaware of how offensive it is to have someone come to the table and ask a diabetic with an insulin pump "What can you eat?" I am 34 years old and I am able to put ANYTHING I want into my mouth as long as I have information on how many carbs the item contains. I have been measuring my food for 25 years- a "guide" to portion sizes does me no good. I can look at a plate and tell that there is 1 1/2 cups of pasta, 1/2 cup of mashed potatoes, etc. I only need to know the total number of carbohydrates. I am going to be on vacation- I wouldn't normally eat something like the Zebra bomb dessert at Boma, but on vacation I might want to. I don't want a special sugar-free or low-carb dessert prepared if I am in the mood for chocolate and ice-cream. However, if staff is unable to give me a carbohydrate count, I will be unable to try this dessert of my dreams. There are many computer programs available that will give carb estimates if all ingredients and portion size are entered. It is not impossible for WDW to calculate an estimated carb count of an entree if it was deemed necessary. I am highly offended that Disney has not already deemed available nutritional information as necessary, ESPECIALLY given Disney's recent focus on "healthier options" being available in the parks.

While I understand that a written guide is out of the question for my vacation due to time, WDW should make available a guide similar to the ADA's "Life in the Fast Lane" This guide is purse sized and lists nutritional info for all signature and regular menu items in dozens of fast-food restaurants. There are more than 1 million insulin-dependent diabetics and millions more non-insulin dependent diabetics in the U.S. alone, and they all desperately need information on the food they are eating. I ask that I be provided with two things for my upcoming trip:

1) A definite answer as to the availability of nutritional information at Disney restaurants.
2) If nutritional information is available, a copy of info for the following restaurants:
Boma
Cinderella's Royal Table Breakfast
Crystal Palace Dinner Buffet
Hollywood & Vine Dinner Buffet
Coral Reef Lunch
Akershus Dinner Buffet
Donald's Safari Breakfast
Liberty Tree Tavern Dinner
Garden Grill Dinner
Pecos Bill's
Dole Whip info
Flame Tree Barbecue
ABC commissary

Thank you very much for your time and attention to this matter. I want to have the vacation of a lifetime with my family at Walt Disney World. If I am unable to eat any restaurant prepared food on my vacation, there will be a very, very disappointing area of my vacation.

Sincerely,
-Kelly Skaggs-Feschyn

 

[Cheshire Figment]

Hi and to both DisBoards and disABILITIES!

As you can see, I have edited out your reservation number.

When you call Walt Disney World, unless you really know a direct number, you will get one of two offices.

The Disney Reservations Center (DRC) includes Walt Disney Travel Company (WDTC), Central Reservations Office (CRO), Disney Dining, and some other lesser known information lines. To the best of my knowledge the DRC locations are in the International Drive area, Tampa, Kansas City and Houston and Salt Lake City. There may be more. Some of the people working at the DRC call centers may never have been to either WDW or DL (or both).

The Main Switchboard (407-824-2222) is also where all calls to Disney Resorts go if you are dialing the phone number on the back of your reservations form. Also that is where calls go if you dial the Operator from your room, and possibly even calls to the Front Desk. The Main Switchboard people will, if asked, also identify themselves as Guest Services. They can put you through to any number on WDW.

At both DRC and MS they have access to a computer which has lots of Guest Information and it is very well organized. Actually, all CMs who have access to a terminal, or who even can access the "Cast Portal" from off-site, have access to this Guest Services information. I will often open an extra window when I am responding to people and go into the Portal for the latest official information.

I would not say that someone you talked to on the phone lied to you, but just they were attempting to answer a question when they really did not have an answer.

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information, look at Post #3. There is a large section in that post dealing with special dietary needs, as well as many related links. You can get directly to the disABILITIES FAQs by following the link in my signature.

This is a very common topic of discussion in the disABILITIES Forum.

 

[zurgswife]

We have been dealing with Disney with regards to the lack of carb counts for 4 years now. I have 2 type 1 kids. We have been to the top of the ladder and down again. There hard line is that they can not give you carb counts due to legal reasons. What if they gave you the wrong number.

Disney does a fabulous job with lots of other disabilities but as far as Diabetics are concerned they are totally oblivious to the issues we face and what our needs are. It floors me that John Lassiters son is also Type 1 and nothing has ever been address.

We have a website WWW.disneywithdiabetes.com It has very few carb counts because the will not give them too you. The Carb king book is your best bet. We have spent many many trips estimating and trying to fix the problems (highs and lows) that estimating everything causes.

 

[Talking Hands]

I have to agree with Zurgswife. I have been an insulin dependent diabetic for 30 years and carb count. At Disney they seem to be clueless. Therefore I tend to avoid carbs except for those that are very plain and make specific requests such as 1/3 c cooked rice, 6 strawberries, etc. Since carb counting is now pretty much standard Disney needs to step up to the plate and give this information to those of us who need the information. I even had one chef suggest they get me a rice krispie treat for dessert on day. DUH!

 

[Hook's Girl]

It will take Guest Communications approximately two weeks to respond to your letter! Good Luck!


Perhaps info cannot be provided in advance because menus are not set and constantly changing? I know that in my work location we tell Guests that menus are subject to chance at any time.

 

[SueM in MN]

I can see that they might have some problem giving out carb information for the table service restaurants because the chef may do something a little different each time he makes he recipe. (My gut feeling is that they don't though because it could mess up ordering of supplies and quality control).

I don't see why they could not give a figure for the counter service restaurants though. Yes, they do change the menus from time to time, but they could have a handout on request that is changed with the menu items. Most of the portion sizes are quite consistent and they probably could already have carb information from the supplier for premade things like buns, hotdogs, hamburgers, etc.
I know the counter service desserts used to be made on WDW property, but since the advent of Dining pacakages, the counter service desserts are prepackaged manufactured desserts, so they could certainly get numbers for those.

You would think the legal problem could be solved by putting some kind of disclaimer that says the numbers provided are accurate as much as possible. What do other restaurants do?

 

[zurgswife]

I can see that they might have some problem giving out carb information for the table service restaurants because the chef may do something a little different each time he makes he recipe. (My gut feeling is that they don't though because it could mess up ordering of supplies and quality control).

I don't see why they could not give a figure for the counter service restaurants though. Yes, they do change the menus from time to time, but they could have a handout on request that is changed with the menu items. Most of the portion sizes are quite consistent and they probably could already have carb information from the supplier for premade things like buns, hotdogs, hamburgers, etc.
I know the counter service desserts used to be made on WDW property, but since the advent of Dining pacakages, the counter service desserts are prepackaged manufactured desserts, so they could certainly get numbers for those.

You would think the legal problem could be solved by putting some kind of disclaimer that says the numbers provided are accurate as much as possible. What do other restaurants do?

Exactly our thoughts. But the Disney rhetoric it that this info is not available because these items are supplied by so many other companies and they can't be responsible for the fact that their supplies might change their recipes. It is a crock. Fast food restaurants all over the country can do this but Disney flat out refuses.

The items that they make on property ie cakes, pastries, ect. there is a computer program that will make it easy for Disney to provide carb counts. I know this because before he was forced to stop, the Head chef at the Boardwalk bakery would calculate what the carbs were for the stuff my kids wanted to eat. Then the lawyers found out and made him stop.

 

[SueM in MN]

Exactly our thoughts. But the Disney rhetoric it that this info is not available because these items are supplied by so many other companies and they can't be responsible for the fact that their supplies might change their recipes. It is a crock. Fast food restaurants all over the country can do this but Disney flat out refuses.

So, you wonder how many different companies they can have providing all these items?
They could probably order the prepackaged items with the carb information printed on the package. I have seen items meant to be sold as part of a package that have the information only on the package itself, but the same item in the same size is also available with the information printed on the individual item.

For other products, it doesn't sound like it would be that difficult to have a database with the information and one of the steps when a new product comes in is to enter it into the database.
If they are concerned with having out of date printed information, they could set up a small computer terminal that has read only access to the database. A big company like Disney should be able to figure out how to make access to the database information in a way it would not be confusing and would show only the items coded as available at that restaurant. There would probably be some way to 'populate' menu choices with the ingredients pulled from the database that are used to make that item.

It's not rocket science.

 

[Alice2020]

I can not even think what kind of LAW (other than the cover your own toosh law) would prevent a restaurant from providing nutritional information. It is much more of a legal precedent for there to be forthcoming with info due to potential health risks. For example, in New York City it is now MANDATORY for any restaurant with multiple locations to list a detailed nutritional summary of all items without a customer needing to request the info. This info is usually posted directly on the menu. This is unacceptable for Disney to play the legal liability game. I have called the American Diabetes Association and the Juvenille Diabetes Research Foundation to request legal advice on how to proceed. I did not spend thousands of dollars on getting my insulin pump, continuous glucose monitor and this vacation only to BE FORCED to avoid the treats I want to try. Like I said in my letter- if I have a carb count I can eat anything. I have worked as a certified diabetes educator, and one of the things that endocrinologists and CDE's in the country are encouraging is to stop telling people "Don't eat this". This sort of direction encourages NON-compliance with the complicated diabetic diet. The recommendation is to give people "allowances" or goals for daily carb intake and then educate patients on the healthiest ways to eat.

 

[Talking Hands]

Even without a pump one can eat what they want and control their blood sugar if they are insulin as long as they have carb information. I am the poor man's pump (multiple injections with sliding scale to cover carbs) It works. I shouldn't have to forego treats just because I can't get carb information.

 

[Cheshire Figment]

Even without a pump one can eat what they want and control their blood sugar if they are insulin as long as they have carb information. I am the poor man's pump (multiple injections with sliding scale to cover carbs) It works. I shouldn't have to forego treats just because I can't get carb information.

I agree with this completely. Several years ago when I first started using insulin my doctor told me: "You can control your diabetes, don't let the diabetes control you".

 

[zurgswife]

I can not even think what kind of LAW (other than the cover your own toosh law) would prevent a restaurant from providing nutritional information. It is much more of a legal precedent for there to be forthcoming with info due to potential health risks. For example, in New York City it is now MANDATORY for any restaurant with multiple locations to list a detailed nutritional summary of all items without a customer needing to request the info. This info is usually posted directly on the menu. This is unacceptable for Disney to play the legal liability game. I have called the American Diabetes Association and the Juvenille Diabetes Research Foundation to request legal advice on how to proceed. I did not spend thousands of dollars on getting my insulin pump, continuous glucose monitor and this vacation only to BE FORCED to avoid the treats I want to try. Like I said in my letter- if I have a carb count I can eat anything. I have worked as a certified diabetes educator, and one of the things that endocrinologists and CDE's in the country are encouraging is to stop telling people "Don't eat this". This sort of direction encourages NON-compliance with the complicated diabetic diet. The recommendation is to give people "allowances" or goals for daily carb intake and then educate patients on the healthiest ways to eat.

Good luck with your fight. If you find anything out please let me know. We have literally been fighting this fight for 4 yrs. We have had the heads of many departments promise to look into it until they run into Disney legal and then they turn and run. Their arguments are non sense. At one put about 2yrs ago they had the nerve to tell us that this was the first time anybody had asked for such info. Well, we had spent the 2 previous years talking to anybody that we could get emails or phone numbers for to listen to us. So, it definitely wasn't the first time we had ever requested the info.

What your trip will come down to is estimating on the fly. I'm sure there are times you have to do it at home and you will have to do it at Disney. There are people that bring scales and carb factors down to try to get a better estimate. For my kids that just takes too much time; we just estimate on the fly.

PS wait until the offer you the info on where to find sugar free items...I about blow a gasket each time they offer that as a solution for my T1 kids.

 

[RascalRabbit]

Hi, my first time speaking! I've been reading for months now and have learned a lot! I too have type 1 diabetes for 23 years and just got my pump this past March. Will be in Disney this Oct with my Carb King book but it would be easier to have the carb information from the restaurants. The pump has really changed my life, no more, I should have eaten 1/2 hour ago. I will also send a letter to Disney, thank you so much, you are not alone!

 

[Alice2020]

Just a quick note to all- Thanks for the support. It really helps me to be inspired to keep up this fight knowing that I am not fighting for me- until there is a cure, diabetics need info!

-Kelly

PS will be speaking with JDRF tommorrow- if I get a chance I will post what they say.

 

[Selket]

My younger son is type 1 and I can understand the frustration. It would seem that they could at least do the carb counts for the CS stuff.

My son with type 1 also has a serious peanut allergy so when we eat in restaurants the peanut allergy is by far the bigger issue. Disney does such a wonderful job accommodating his allergy that I am more than happy to WAG his food. We let him eat whatever he likes that is safe and we've had some wonderful meals. He pumps so I'll add that it is much easier (I would think) to WAG with a pump.

That being said, it seems to me that they know the ingredients of their items and the suppliers must not change uber often (at least CS) because the allergen info has remained fairly consistent over the years (not always but usually). I would guess if the company has the ingredients that likely have all the nutritional info including the carb count for items like pudding cups, buns, etc.

The legal dept at Disney doesn't seem to hamper the chef's ability to make an allergen free meal - so the "we can't guarantee" doesn't fly. Seems like they could put a warning on it or something. I mean it is infinitely worse to be given a meal with hidden peanut when they told me it was safe than to be off on the carbs - a slip on the peanut info and it could kill him. Why do they take the one risk and not the other.

 

[mechurchlady]

Just a quick note to all- Thanks for the support. It really helps me to be inspired to keep up this fight knowing that I am not fighting for me- until there is a cure, diabetics need info!

-Kelly

PS will be speaking with JDRF tommorrow- if I get a chance I will post what they say.

Keep fighting as for each fighter is 1 to 1000 people who do not fight. Right now your fight may help someone who cannot fight or does not know how to get the information.

Also from your original post a great link was posted which might help others including people who are not diabetic. I learned some new things to help me with my celiac. I like the part that said roller coasters have only a teeny tiny affect on sugar levels that it is neglible.
http://allears.net/pl/diabetes.htm#14

I found on my last trip that some restaurants went out of their way to help me with my diet while some would not know wheat if I smacked them up side the head with a bag of flour and a stalk of wheat. They seem to think diabetes means no sweets like pies and candy but do not realize that bread, pasta, ice cream cones, potatos, corn and berries have carbs.

Hugs and good luck.

 

[DisneyCDE]

I have had Type 1 DM for 33 years and a pumper for 9 years as well as CGMS system for 1 year. At WDW I usually just make an educated guess and go from there. The sensor will help in that area. I agree that they should be more helpful at WDW. On DCL, however, I had a very positive experience with getting carb info. The wait staff checked with the chef and were able to give me a ballpark idea of which foods I was asking about, which were usually desserts. It worked out well and I was appreciative that they took the time to help me indulge safely. Perhaps if you ask at each individual restaurant the individual chefs may be a little more willing to help out like they did for me at DCL. Will be on DCL again in Jan. 09 and cant wait for some creme brulee.

Have you started on your CGMS system yet?

 

[bopper]

My DH has a pump and the internal BG sensor...but by now he too can make educated guesses as to Carb values.

 

[Alice2020]

I have been using the CGMS for the last 2 months, but I still feel like a bit of a novice with it- I am still getting used to the system's limitations. That being said, the CGMS was the best $1200 I ever spent. I have also started on Symlin this week and I am trying very very very hard to get my A1C closer to goal.

As an update, the ADA has referred me to the Florida Dept of Agriculture Food Safety Division to discuss the legality of Disney withholding nutrition info. I have also written a letter to a company that Disney partnered with to start it's "healthier choice" kids food letting them know about Disney's practices in the park. Disney tried to call me back, I tried to call them back on Tuesday and they still have not returned my call. I'm pretty stuborn- I'll keep trying until I can get a satisfactory answer as to why Disney refuses to even give estimates of carb counts.

-Kelly

 

[zumbergc]

I just wanted to chime in and say, "Keep Fighting". Its long and hard to fight a big corporation, so keep plugging along. Getting this important info out to diabetics could make wdw a happier and safer place.

Connie