Gluten, you won't stop me from eating at Disney!!

[davebon23]

Do you mind me asking how you all were tested for the gluten allergy? It was very recently suggested that I may have this based on symptoms I have been experiencing. We have an upcoming Disney trip/cruise and i have already started worrying about not possibly getting to have some of my favorite wow meals/desserts. I am seeing a nutritionist this week to be tested but don't know if this is really the route I should be taking. Any advice would be greatly appreciated.

I was diagnosed by my Gastroenterologist. I had bloodwork that came back positive and then a positive result from an endoscopy. Some people have negative blood work and then come back positive with endoscopy. Either of these tests would definitely give you results. Hope this helps.

 

[clanmcculloch]

Actually, they won't definitely give a positive diagnosis. I tested positive via blood tests for a wide range of food intollerances (IgG reactions) and a few allergies (IgG reactions). My ttg blood test came in at around 13 with a positive being 17 (or something like that but I can't recall the numbers for sure any more since it was around 5 years ago). What I remember in hindsight is that there shouldn't be ANY antibodies in a healthy person and that medical science has no explaination for what a result above 0 yet below the clinical diagnosis means. My upper endoscopy and colonoscopy did not show celiac or even eosinophilic esophagus (a specific pathology that responds well to elimination of gluten and casein). My colonoscopy and some additional blood was was inconclusive for a form of microscopic colitis (didn't confirm it but didn't rule it out either) and peptic ulcers in the duodenum (yeah, not flattened villi but peptic ulcers in that exact area where flattened villi are normally seen with celiac). FYI MC also responds well to a gluten and casein free diet. Basically, I didn't have a single test that actually said I needed to eliminate gluten, at least based on how doctors read the tests. So I changed my diet to eliminate all the things that did show up in my tests and also did a rough round of Diflucan and mega probiotics. During this time, my oldest DD was diagnosed as autistic. I knew she had a couple food allergies and some unexplained GI issues so I figured it was worth trying her out on the GFCF diet that is so well reputed in autism circles. So that she would feel more comfortable, I agreed to not eat anything that she couldn't eat (I was already eliminating casein and I pretty much had to eat only freshly prepared food anyway so why not). Well, a few months in I was feeling quite a bit better and I attributed that to all the other things I was doing. Well, I made something for myself using a won ton wrapper (basically just wheat, salt and water if I recall) and nothing else that was off my diet. OMG did I pay. For the next 2 weeks I had a cycle of symptoms ranging from unpleasant GI stuff (this isn't a GI board so I won't go into details), migraines, skin problems and brain fog. I couldn't believe it but it turns out I am gluten intollerant despite all the inconclusive and negative tests.

 

[3prettyprincesses]

Do you mind me asking how you all were tested for the gluten allergy? It was very recently suggested that I may have this based on symptoms I have been experiencing. We have an upcoming Disney trip/cruise and i have already started worrying about not possibly getting to have some of my favorite wow meals/desserts. I am seeing a nutritionist this week to be tested but don't know if this is really the route I should be taking. Any advice would be greatly appreciated.

Hi there. I tested just below the cut off for the celiac blood test panel but tested positive for other food allergies (avocado, watermelon, fish). My doctor then told me I could opt for the intestinal biopsy but since I'd been eating gluten free for over six months, it would likely be negative as well. He advised me to continue eating gluten free and bascially consider myself as a healing celiac. Eating gluten really does a number on my digestive system and he said if I have all the signs and symptoms, then further testing is useless since the treatment would be the same anyway, a life long gluten free diet.

If you feel like getting tested, do not go gluten free first. It will skew your test results. (Which is the boat I am in) For me, there was no denying that I felt 100% better eating gluten free.

Try not to stress over Disney and your favorite meals being off limits. I understand your feeling this way, I did too. But Disney is phenomenal with gluten allergies and I honestly didn't feel like I was missing out, really truly. Whatever your results come back as, if you feel better not eating gluten, then don't. And you can email Disney at SpecialDiets@DisneyWorld.com They'll send you several forms with details about gluten and gluten free products they offer as well as an allergy form for you to fill in your dining reservations so the chefs will know you're coming.

Good luck with your testing and have a wonderful trip!

 

[3prettyprincesses]

Actually, they won't definitely give a positive diagnosis. I tested positive via blood tests for a wide range of food intollerances (IgG reactions) and a few allergies (IgG reactions). My ttg blood test came in at around 13 with a positive being 17 (or something like that but I can't recall the numbers for sure any more since it was around 5 years ago). What I remember in hindsight is that there shouldn't be ANY antibodies in a healthy person and that medical science has no explaination for what a result above 0 yet below the clinical diagnosis means. My upper endoscopy and colonoscopy did not show celiac or even eosinophilic esophagus (a specific pathology that responds well to elimination of gluten and casein). My colonoscopy and some additional blood was was inconclusive for a form of microscopic colitis (didn't confirm it but didn't rule it out either) and peptic ulcers in the duodenum (yeah, not flattened villi but peptic ulcers in that exact area where flattened villi are normally seen with celiac). FYI MC also responds well to a gluten and casein free diet. Basically, I didn't have a single test that actually said I needed to eliminate gluten, at least based on how doctors read the tests. So I changed my diet to eliminate all the things that did show up in my tests and also did a rough round of Diflucan and mega probiotics. During this time, my oldest DD was diagnosed as autistic. I knew she had a couple food allergies and some unexplained GI issues so I figured it was worth trying her out on the GFCF diet that is so well reputed in autism circles. So that she would feel more comfortable, I agreed to not eat anything that she couldn't eat (I was already eliminating casein and I pretty much had to eat only freshly prepared food anyway so why not). Well, a few months in I was feeling quite a bit better and I attributed that to all the other things I was doing. Well, I made something for myself using a won ton wrapper (basically just wheat, salt and water if I recall) and nothing else that was off my diet. OMG did I pay. For the next 2 weeks I had a cycle of symptoms ranging from unpleasant GI stuff (this isn't a GI board so I won't go into details), migraines, skin problems and brain fog. I couldn't believe it but it turns out I am gluten intollerant despite all the inconclusive and negative tests.

Ugh, I feel your pain! It's undeniable that eating gluten free has completely changed me and my digestive tract. If I accidentally get glutened, oh boy, my body lets me know it! I keep telling my DH that there isn't anything with gluten that would taste as good as not getting sick does.

A very good friend of mine has a son with Asperger's and she too knows about the link with gluten. Turns out that now she's thinking she might have gluten issues as well.

I suppose the bottom line is that even if all of your tests come back negative, if eating gluten free makes you feel better, then so be it.

Thanks for sharing, it's always helpful to hear other people's stories.

 

[Moonies]

Ugh, I feel your pain! It's undeniable that eating gluten free has completely changed me and my digestive tract. If I accidentally get glutened, oh boy, my body lets me know it! I keep telling my DH that there isn't anything with gluten that would taste as good as not getting sick does.

A very good friend of mine has a son with Asperger's and she too knows about the link with gluten. Turns out that now she's thinking she might have gluten issues as well.

I suppose the bottom line is that even if all of your tests come back negative, if eating gluten free makes you feel better, then so be it.

Thanks for sharing, it's always helpful to hear other people's stories.

Ditto to if it makes you feel better go for it. Two of our party are Gluten Intolerant and I believe both of us tested negative (at least I did). That being said, both of us lost lots of bloat and felt MUCH better after going GF even after a few days. And now eating gluten does make both of us feel ill. So no matter how you get tested and what the results are, if it makes you feel better, do it.

 

[davebon23]

I would also second the idea that if you are going to get tested DO NOT go gluten free first. If you go gluten free first, the test results will not be accurate. But also as previous posters said, some people don't always come out positive, but feel better when going gluten free anyway. Do what you feel is right for you. Good luck.

P.S. Oops! I forgot to quote

 

[dawgs4disney]

Thanks so much for all the great advice!!

 

[alicehatter]

Now, I figured that since I didn't get an appetizer (remember that pesky spinach dip had gluten), I treated myself to a classic hot fugde sundae! The chef promised it would be gluten free, making sure it was scooped from a new ice cream box as well. This was scrumptious!

Your reviews are going to be really helpful for me when we go next month! Do you know what kind of gluten free ice cream they use when making GF dessert options? When I went last year as a vegan, they offered Tofutti or Rice dream. Do they have different gluten free options?

 

[3prettyprincesses]

Your reviews are going to be really helpful for me when we go next month! Do you know what kind of gluten free ice cream they use when making GF dessert options? When I went last year as a vegan, they offered Tofutti or Rice dream. Do they have different gluten free options?

I'm so glad you found them helpful!

The ice cream I had at the restaurants was plain vanilla, not Tofutti or Rice Dream. The chefs opened a new container for me and my DD11 (she has tree nut/coconut allergies and we ended up with some of the same desserts)

Also, on Main Street at the MK, the ice cream parlor offered gluten free ice cream as well. They opened new cartons and freshly scooped it to avoid cross contamination (I stayed with plain vanilla/chocolate) I'm telling you, I've never been taken care of so well than I was at Disney being GF. It's hard for me to trust others to prepare my food because I get very ill just from slight cross contamination so this was a large experiment for me to eat at Disney. I'm sure you'll do great, there are many options and they go out of their way to make you feel comfortable and safe. I hope your trip is fabulous. Man, I'd love to be going back next month!

 

[3prettyprincesses]

Ditto to if it makes you feel better go for it. Two of our party are Gluten Intolerant and I believe both of us tested negative (at least I did). That being said, both of us lost lots of bloat and felt MUCH better after going GF even after a few days. And now eating gluten does make both of us feel ill. So no matter how you get tested and what the results are, if it makes you feel better, do it.

I agree! When I went GF, after just a few days I was feeling so much better than I had in years. It was crazy.

I would also second the idea that if you are going to get tested DO NOT go gluten free first. If you go gluten free first, the test results will not be accurate. But also as previous posters said, some people don't always come out positive, but feel better when going gluten free anyway. Do what you feel is right for you. Good luck.

P.S. Oops! I forgot to quote

That's what happened to me. My tests were technically negative since I'd been GF for over six months. Great point, you should do what is right for you. Some people don't need an actual diagnosis because they feel better eating GF. Others really need one to make it more real to them I guess. I'm kind of in the middle of both I'd say. Sure, I'd like to be certain but like you said, even if you are eating gluten and get tested, it still could come back negative.

Thanks so much for all the great advice!!

 

[DisneyMom5]

Thanks for the review! My ds11 is GF and also Peanut/Tree nut free. We've eaten at some of those restaurants, but not all, and not since Fall of '09. Always glad to see more recent reviews!

 

[4mama2]

Thank you for the wonderful information. Loved all the great pictures. GF will be a new twist for us on our next trip, appreciate all the reviews.

 

[jenbear123]

Am I imagining things? Or has your other TR disappeared? It's not on my subscribed threads and I can't find it over in the trip reports. Am I missing something???

 

[3prettyprincesses]

Am I imagining things? Or has your other TR disappeared? It's not on my subscribed threads and I can't find it over in the trip reports. Am I missing something???

Jen, I just pm'ed you.

 

[clanmcculloch]

Did I miss the conclusion of your dining TR? I was trying to find Plaza reviews but I couldn't find that in here even though I know you ate there. Your descriptions have been great to read for all the other restaurants.

 

[3prettyprincesses]

Thanks for the review! My ds11 is GF and also Peanut/Tree nut free. We've eaten at some of those restaurants, but not all, and not since Fall of '09. Always glad to see more recent reviews!

You're so very welcome! I love recent GF reviews too. When I was planning our Feb. trip, I really relied on those wonderful folks here who posted their experiences.

Thank you for the wonderful information. Loved all the great pictures. GF will be a new twist for us on our next trip, appreciate all the reviews.

You're very welcome! GF was a new twist for me too this past trip but it just couldn't have gone better. Disney really exceeded my expectations. Considering we spent 8 full days there X 3 meals a day, that's 24 meals!! And I didn't get ill apart from Yak & Yeti (which may have been more to do with the vinegar/soy sauce I had than gluten)

Did I miss the conclusion of your dining TR? I was trying to find Plaza reviews but I couldn't find that in here even though I know you ate there. Your descriptions have been great to read for all the other restaurants.

Ack! You're right! I forgot about The Plaza. Actually, I didn't take any pics of my Kona breakfast, The Plaza lunch or Boma dinner! That's probably why I thought I'd finished this review, I was going by the pictures I had. Oops! I'll rectify that shortly!

 

[3prettyprincesses]

I don't have a single picture from this meal. Sorry! Ok, on to the review.

We checked in early here, maybe 1/2 hour actually in the hopes of getting to the MK a bit earlier. After about a 5 minute wait, we were seated!

Our waitress was very sweet and poured us all the Polynesian juice that I was rapidly becoming addicted to! She saw my food allergy on our ADR and sent the chef over. It was the same lady who was at our Kona dinner, Chef Katrina! She is really personable, laid back and totally willing to make a good dining experience for her guests. We loved her! After some hemming and hawing over the menu (I wasn't sure what the heck I wanted) she suggested freshly made GF pancakes with butter, a side of scrambled eggs and a ham slice. I guess I looked hungry because that sounded like a ton of food! Which it was. Everything was soooo good! Serioulsy, I could NOT tell the difference between those GF pancakes and real ones. They were that delicious. I don't know how they do that at Disney!

Yet another incredible meal. Two enthusiastic thumbs up! The Polynesian has completely proven it's deliciousness for me! I'll always make ADR's here. Excellent experience.

 

[3prettyprincesses]

Again, no pics. Oops!

The Plaza was one of the restaurants I was looking forward to a lot since we'd never eaten here before. I'd heard amazing things about the food.

We checked in early again and were seated about 15 minutes later. Now here's where everything got confusing. Once our waitress came, I told her about my food allergies. She said fine and then dropped an enormous folder of information on the table. I looked at her blankly because I had no idea what the heck it was for! So I asked her. She told me that it was the allergy folder. Inside was every single menu item with the ingredients listed. Ok, this was very different from the table service meals we'd had so far. I proceeded to thumb through this ginormous thing which I really wished they'd organized better. I spent way too long flipping through it and the waitress seemed really annoyed with me for taking so long. But remember, I had to check not only gluten ingredients for me but also the tree nut/coconut allergies for DD11. It took forever! Finally we decided on something safe and the chef came out to ok our choices. Now I was confused again. So the chef normally comes out? I was so out of my element here.

Anyhow, I had the steak, cheese and peppers on a tapioca hot dog roll with GF chips that was amazing! I really couldn't believe how tasty it was. The chef came out to check on me and I told her how much I loved my meal. She was very friendly and said she was glad I was enjoying it. I didn't get dessert since I really didn't want to look through that folder again. Later on I got another dole whip at Aloha Isle though.

Overall, I liked the looks of this restaurant and the food was really, really good! But the process was so confusing and it didn't help that our waitress seemed put out by my taking too long to order. I'd eat here again since I now I know what to expect and like I said, I loved my meal! Actually my whole family loved the food here!

 

[3prettyprincesses]

Well, yet again (gulp!) no pics! I distinctly remember that I forgot camera for dinner here so that explains why.

We checked in right at our ADR time and waited about 15 minutes to be seated. The place was hopping busy!

Our waitress came promptly and sent the chef just as promptly. He was so fun! Very friendly and cool. He walked me through the buffet line and boy there were quite a few dishes that I would never have guessed had gluten in them! But I still managed to pile my plate full. The desserts were off limits but he promised to bring me a little something special from the kitchen that he'd prepare himself. I was secretly hoping it was those zebra domes I've heard so much about.

I'm trying to recall my food here...I know I had the carved meats, salad and some veggies. Everything was very, very good. But as I ate, I watched the people moving through the line and I saw some serious tong cross contimination. People were using tongs to pick up various things with the same pair rather than switching. It certainly made me pause and think over how easily buffet food can become contaminated.

After stuffing myself silly (this was our last meal at Disney) I waited patiently for my dessert and I was not disappointed! Zebra domes! Three of them. I'm not even embarrassed to say that I ate every single one. DH was like, hey those look good and I'm pretty sure I slapped his hand away! They were amazing! Is it sad that they were the highlight of my meal?? There was also a little mousse cup thing which was very good also but the zebra domes blew it out of the water!

Overall, excellent meal, excellent service and gorgeous restaurant. But the tongs use alarmed me a bit. I'd eat here again in a heartbeat though!

 

[clanmcculloch]

Thank you once again for sharing your dining experiences. I love reading allergy reviews.

I totally agree about Polynesian being an amazing resort for food allergies. I'm struggling with the fact that we're staying at an Epcot area resort for our upcoming trip so I didn't book a single Poly ADR as I want to take advantage of the restaurants around my resort. I'd love to go back and stay at Poly again in the future. The chefs there are AMAZING. Even at Captain Cook's, the chef went to the upstairs kitchen at Kona to prepare a stir fry dish for DD13 and grabbed some chicken noodle soup from Kona for DD11 (DD11 isn't gluten free but does have other allergies; she must have eaten that soup 3 or 4 times on our last trip). I can't say enough good things about those chefs.

What a weird experience at the Plaza. I think when we're there in August (just booked an ADR there), I'll ask for the chef right away if the server just plops the book down in front of me. We have way too many allergies for that. We're booking TS so we'd have an easier time. I definitely do have dessert planned as I saw a picture of a dairy free banana split one time and that's something my kids have asked about in the past but never had the pleasure of ever trying. I wonder if we should just skip the meals and go straight for dessert since we have a buffet booked for dinner that night? LOL I wonder if they carry soy cheese because that cheese steak sounds wonderful. Some places do. When I finally contact Special Diets, I'll definitely be asking specific questions about this place since it'll be our first time there and I'm nervous about eating at a place that serves primarily sandwiches when my kids can't eat the typical allergy breads (other allergies).

One of these years I need to make it over to Boma. I keep reading such great reviews. It sounds WONDERFUL!!

Just an FYI about buffets. Chefs will definitely get you fresh stuff from the back in order to avoid the cross contamination. Like you saw, lots of people use a singe set of tongs or spoons to get food from multiple dishes. Cross contamination is pretty much a guarantee.