New To Board And Newly Dx

[Allysmommy]

HI there everyone!! My name is MacKenzie and I have a dd who was diagnosed with celiac disease after a year long battle. Really!! Long story but our battle started in October of 07 right after my dd turned one. She was given wheat and gluten containing products because....well your supposed to try new things and see how your child reacts. Litteraly, after two weeks she got sick and remaind sick for 6 months...loosing weight, dark circles, extended belly, vomiting, etc etc etc....classic celiac disease! But my iddot Ped keep saying "stomach flu"!. Now I am not saying I know everything, I don't , but I am a nurse and I did work on a Ped's floor for five years prior to my current job as a school nurse. So neadless to say, I know something. Anyway...changed Doctors...and accidentally found a doctor who specalizes in celiac disease. He took one look and said "classic celiac disease". I think what frustrated me the most, wasn't the false neg blood tests (there were two) or the fact that she has be gluten-free since June of 08 and Dec 08 is when I finally got a pos blood test. It was not being listened to. But we have a proper DX and I am at least at ease with it. It was awful that my dd had to break out in a rash (gluten-free related) and loose more weight before the positive blood work came back pos. I know the next step is to test my husband and I. After surfing this website for a few weeks I thinking more and more that it is me. I have a similar story to some of the ladies on here (way to long for this time).

Okay, so that's the background info....here's my question. Every year in January, my husband and I start to plan our family vacation. In 09 we are looking at going to Disney World (FL). My dd is just getting into Princess and Tinkerbell and watching movies. So we figured that next year, she'll be three and it will be a good age to go. She can ride some rides and really enjoy the park itself. Have any of you been to Disney (FL) with your celiac disease family and had a positive experiance? My girlfriend who goes every year with her children, said she noticed this time, that at least at one meal, there was a gluten free protion of the buffet. If you have been and had a positive experiance, please let me know. Did you have to let them know ahead of time, register somewhere that you are celiac disease, have to wear a special tag or braclet or shirt (LOL) that states you are celiac disease? Any answers to these questions....is so appreciated.

Thank you all for reading and I hope to get to know you all a little better!

MacKenzie

[Allysmommy]

Hello,

Everyone, new here and have a newly dx 2 year old dd. She was dx in December but we have been a gluten-free house since June 08. Just wondering if anyone has gone on a family vaction to Disney World (FL) with their celiac disease child/family. We are planning a trip for next Christmas 09, and was wondering how we would go about this. This is all new to us so any information would be helpful. We were wondering if we had to register that we are celiac disease. We are looking at buying a meal plan, so we were wondering if we needed to let them know this ahead of time. If you have had a positive experiance with your celiac disease children and Disney world...please let me know!

I am so excited to find a group like this! I can't wait to get to know you all!

Thanks,

MacKenzie

[zero]

Disney World is likely the most celiac friendly place to visit. Try sending an email to

WDW.MK.Special.Diets@disney.com

requesting information on dining with celiac or a gluten allergy and you should get a ton of information. Also try these links

Open Original Shared Link

Open Original Shared Link

I especially liked having a list of things which I could eat at the counter service places. Also try searching for disney on this forum and you should see lots of threads discussing this. Have fun.

rob

[shayesmom]

Hello,

Everyone, new here and have a newly dx 2 year old dd. She was dx in December but we have been a gluten-free house since June 08. Just wondering if anyone has gone on a family vaction to Disney World (FL) with their celiac disease child/family. We are planning a trip for next Christmas 09, and was wondering how we would go about this. This is all new to us so any information would be helpful. We were wondering if we had to register that we are celiac disease. We are looking at buying a meal plan, so we were wondering if we needed to let them know this ahead of time. If you have had a positive experiance with your celiac disease children and Disney world...please let me know!

I am so excited to find a group like this! I can't wait to get to know you all!

Thanks,

MacKenzie

Disney is by far one of the best places to go when on a "special" diet. We took my dd there when she was 3 and had no problems being accomodated. And we are not only gluten-free, but soy, egg and dairy-free as well.

Pretty much every restaurant in the park can accomodate your dd. The only thing that they ask is that you give them a head's up as to when and where you want to dine. Generally, they like to have 24 hours notice, but we had no problems finding places to eat within an hour or two (I kept the meal service phone number in my cell phone so we could call if we needed to).

The website a pp mentioned helps. You can also call Disney and ask what options they have. They'll gladly send a list to you and work out a menu plan. I was totally impressed at each restaurant we went to because not only did they have an allergen-friendly menu....but the chef always came out to our table to speak to us first. And in several places, he whipped up things that weren't even on the menu! It was a great experience and one that I'd repeat without any reservation.

We also packed plenty of snack food items for dd to have in between meals. Lockers can be hard to get, so pack lightly. You may have to carry your items all day. Otherwise, I believe that all the "fast food" places make french fries in dedicated fryers. So that's always an option in all of the parks.

We toured Animal Kingdom, MGM, Epcot, and The Magic Kingdom. We didn't do any of the Princess breakfasts or meals...but I do know that they have gluten-free pancakes/waffles, pizzas, etc. that are available.

Welcome to the boards!

[CeliacMom2008]

We just celebrated our one year anniversary as a Celiac family. We've been to Disney World twice in that time. After our first visit we became Disney Vacation Club members - yeah, it's that great! We're going back again next spring.

Our experiences have ranged from great to supercalifragilistic! When we were there in November we discovered that if you stop by the information center near the entrance of any of the parks and ask for their gluten free dining guide they'll give you several pages of listings of what you can eat where - however, the list is not complete. There are way more gluten-free options than on those sheets. In fact, Main Street Bakery at the Magic Kingdom now sells gluten-free cookies and crispy rice treats (AKA Rice Krispy Treats in the gluten world).

If you Google gluten free disney world you will get some great reviews on different people's experiences at different restaurants.

There are many walk up dinig options - we got pulled pork at Animal Kingdom and Disney Studios and rotissere chicken, green beans, and fries at Magic Kingdom (at Cosmic Rays).

Spoodles at the Boardwalk is wonderful. Chef Bruce was our first restaurant chef to ever serve our son last spring. When we returned last fall he remembered us from the first trip. We had our son's picture taken with Chef Karen who made him amazing breakfasts every morning and who went out and got us 100% pure maple syrup after our first day when we she couldn't confirm with the manufacturer that their syrup was gluten-free.

On the Boardwalk we also had a fantastic experience at their signature restaurant. We had been directed to go there by the ice cream shop next door that had nothing gluten-free. They said the chef there should be able to tell us where on the Boardwalk we could get a quick dessert for our son. Well the chef did more than that. They couldn't seat us (3 hour wait) - which was fine, because we were just there for directions, but they insisted on making him a very fancy dessert to go and then they refused to let us pay for it. They apologized for him not having other options. Just as a side note, the dessert they made was a fancy cheesecake with pears with an almond crust. It was so fantastic that we now toast almonds, run them through the food processor, mix with melted butter and make cheesecake crusts out of it!

50s Prime Time Cafe was a fun restaurant with good "home" cooking. I think my son had steak there - I remember he LOVED their green beans.

The sit down place at the Land at Epcot is a great character dining experience with lots of food. It's served family style for everyone except that Celiac. The Celiac gets their own plates of food.

At the buffets, the chef will walk through the lines with you and tell you what is gluten-free. You tell him what you want and he delivers it fresh from the back - you don't take the food from the buffet lines to avoid cross contamination.

If you don't find anything on the menu you like, the chefs will work with you to "create" something. At one buffet my son didn't like the food options (a place in Africa at Animal Kingdom), so the chef made up a fruit plate with PB&J and mashed potatoes. You know, your typical African meal!

With only 2 exceptions, every meal was served to our son by the head chef. The chef takes the order, the head chef makes the food, and then the head chef delivers it to the table. These people really get cross contamination and peace of mind!

Our first trip we packed all sorts of foods in case the dining experience wasn't so good - including a loaf of homemade bread that we froze. On our second trip I only took snacks for the room.

One piece of advice, make reservations as early as you can. Even in this so-called down economy, Disney is booming. We tried to book places for last fall 2 months in advance and some places were already booked.

As you can see, I can't say enough good about Disney World gluten-free dining. We don't eat out (haven't figured that part of gluten-free living out yet) at all except at Disney. It's the two weeks a year that we eat out!! In fact, when we go over spring break we don't plan to visit a single park - we're just there for the food and restaurants outside of the parks will keep us fed very well!

Have a great trip and welcome to the gluten-free family!

[Allysmommy]

Okay!! Now I AM excited!!

We aren't going until Dec 09...so booking early is not a problem. We are going on our time share as well. We have to book the trip by March, so that is why I am asking so early. I am not one of those that likes to wait. I was also concerned that my dd at age three, wouldn't have enough to do...but after seeing your post and going on the websites....there is a ton to do. I am truly getting excited now. I have NEVER been to DW and my husband went once when he was 10.....so it's been a while.

We are going to do the princess breakfast....only so my dd can dress up. (She would wear fairy wings and tiara every day is I let her ) And are planning one more character dinner with our meal package. If you have any other suggestions...places, rides, food, shows....I would love to hear them. I have been talking to a girlfriend of mine about her yearly trips to Disney but she has boys, so princess, dress-up, tinkerbell...it all gets lost in translation.

I am so very excited!!!

MacKenzie

[CeliacMom2008]

I have a 9 year old boy, so my advice in the girlie department is that when we were at the Mickey store at Downtown Disney I walked past a room full of little girls that had enough hairspray to ignite all of Orlando if anyone lit a match!! It was some sort of beauty salon/princess do up place. I went straigh tot my hubby and said, "Thank heaven we have a boy!!" I was a tomboy, so this sort of thing is really lost on me! I'm sure others will have lots of advice though!

I would advice with a 3 year old to decide right now that you won't do everything you'd like and that's OK. You'll go back someday if you like it. I see so many parents with strung out kids. The kids are crying, the parents are yelling and you want to walk us and say, "This is supposed to be the HAPPIEST PLACE ON EARTH!!" Try to feed them healthy food and give them enough rest. Too much sugar, not enough sleep and all that stimulation doesn't mix well for a memorable vacation - at least not the good kind of memorable!

Now if your little one gets a nap and can stay up a little later, the light parades at Magic Kingdom are wonderful. Not worth keeping her up and miserable, but if it works into her schedule by all means do it. Also, the Magic Kingdom has a Very Merry Christmas Party that was nice. Less crowds (it requires an extra ticket to do it), snow on Main Street, hot chocolate and cookies, special character visits, very neat fireworks, parade (not a light parade, but a very cool Christmas parade), and more that I'm sure I'm forgetting.

If it is just the three of you and there are grown up rides that you want to go on, you can do this parent swap thing. You all wait in line, but only one of you gets on. When that parent returns the other one gets on the ride and you swap parenting duties. You have to ride it alone, but if you want to go on something she can't it's an option that saves a lot of line time. Soarin' at Epcot is one ride that I'd recommend doing this for. It's a very neat ride.

Judge your daughter's reaction to big characters before booking too many pre-paid character events. My son was terrified of Santa at that age and Mickey and the gang were not anything he would've enjoyed. There are many places that have neat dining and the characters are there - vs. a place where you buy tickets for a character experience. It sounds like she'd love the princess dinners though!!

My son LOVED the monorail at that age - and the Disney busses. Thousands of dollars on a vacation and I could've just taken him on the busses!!

Have a great time! If you can't tell I even get excited for other people's Disney vacations!

[Guhlia]

I don't have much to add... We try to go to Disney once a year because it's the ONLY place I feel safe eating out. I've never EVER gotten sick there. They are truly wonderful, just be really careful at the counter service places or you could have some big oopsies. We almost did (3 times at one place). The sit down places are great. My favorite is the 50's PrimeTime Cafe at Epcot (Chef Nelson is wonderful). The fried chicken there is excellent and so close to the real thing that you'd never know the difference. I would, however, avoid the meatloaf. It's okay, but not fantastic like everything else we had.

Make sure you check out the bakery (I don't remember which one) in Magic Kingdom. They sell gluten free brownies, chocolate chip cookies, and rice crisp treats. None are fabulous, but they're premade making them worthwhile for the little ones.

Also, make sure you get the 2009 list of gluten free foods. You will need to call consumer relations for this. I spoke with Brenda Bennett, but I don't know if she's there anymore. They should be happy to e-mail you a list of all the gluten free foods that are served in every Disney park. This made our vacations SO much more enjoyable.

Outside of the Disney parks, Downtown Disney has free parking and TINKYADA pasta at the Portabella Yacht Club. They'll make buttered noodles for the little one, spaghetti (not fantastic), or anything else on or off the menu except for the pizzas. They are incredibly accomodating and probably our favorite restaurant ever. Pricey, but well worth it.

Anyway, enjoy your trip. I feel relatively confident saying that inside Disney you shouldn't have any problems. They are absolutely wonderful!

One last thing, make sure you catch the parades... They're well worth it, especially if your little one is a little scared of close encounters with the characters. It'll give her a chance to see them all without being TOO close. Plus, they're fun for mom and dad too.