HELP!!!! I may be gluten intolerant - testing starts Monday

[figmentswife]

UGG - long story short - sick gallbladder taken out 5 years ago, after being very sick for about 6 months and tons of tests and 2 Dr.'s telling my DH that I was making it up, and there was nothing wrong with me......My Dr. (whom is awesome) finally sent me to a surgeon and he agreed he thought it was my gallbladder and took it out - YEP, my gallbladder had chronic inflammation. So ever since I feel sick 3-5 days a week, I have thought it was a processing issues since no longer have gallbladder, now my Dr. is thinking it may be a gluten intolerance. I am having some testing done Monday afternoon for Celiacs, but from what I have read, you can get false negatives - how frustrating.

I am so excited (I know that is weird) that this could be what it is, and that I might, just might get to start feeling good again, and not have to take zofran all the time (I call it my miracle drug)

How long after diet change does it take to feel good again?? I went gluten free yesterday (don't yell at me, I will eat gluten sunday and monday so the test will be accurate) and I felt GREAT!!!!! I want to feel that good all the time, everyday. I am so sick of feeling like crap, and not knowing if something I eat is going to make me sick....

Also, I have seen some post about places to eat at Disney and gluten free options, and that makes me feel better about our trip next month, but does anyone have more details about counter service - I got a pin for Free QSDP for our trip, but I think it will be our last trip using the QSDP if I have to become GF.

Please tell me your experience from the beginning and being diagnosed to dining to Disney.

Thanks for your help.

 

[SDSorority]

UGG - long story short - sick gallbladder taken out 5 years ago, after being very sick for about 6 months and tons of tests and 2 Dr.'s telling my DH that I was making it up, and there was nothing wrong with me......My Dr. (whom is awesome) finally sent me to a surgeon and he agreed he thought it was my gallbladder and took it out - YEP, my gallbladder had chronic inflammation. So ever since I feel sick 3-5 days a week, I have thought it was a processing issues since no longer have gallbladder, now my Dr. is thinking it may be a gluten intolerance. I am having some testing done Monday afternoon for Celiacs, but from what I have read, you can get false negatives - how frustrating.

I am so excited (I know that is weird) that this could be what it is, and that I might, just might get to start feeling good again, and not have to take zofran all the time (I call it my miracle drug)

How long after diet change does it take to feel good again?? I went gluten free yesterday (don't yell at me, I will eat gluten sunday and monday so the test will be accurate) and I felt GREAT!!!!! I want to feel that good all the time, everyday. I am so sick of feeling like crap, and not knowing if something I eat is going to make me sick....

Also, I have seen some post about places to eat at Disney and gluten free options, and that makes me feel better about our trip next month, but does anyone have more details about counter service - I got a pin for Free QSDP for our trip, but I think it will be our last trip using the QSDP if I have to become GF.

Please tell me your experience from the beginning and being diagnosed to dining to Disney.

Thanks for your help.

Hopefully gluten coming out of your diet takes care of it!!! Good luck!

Eating GF at Disney isn't difficult at all. They have Amy's mac and cheese (SO.GOOD.) at many of the CS places, as well as GF pizza some places, salads, fruit, etc. We tend to bring in a lot of snack items since those can be difficult to find. Enjoy Life, Glutino, Larabars, etc. all travel in the backpack really well. When you get to the CS place, tell the cashier that you need a gluten-free or the term "allergen meal" and a manager will come out and help you. There is a list floating around that shows what different places provide allergen meals, and what TYPE of allergen meals are available for GF folks- email specialdiets@disneyworld.com and request this list. It's good to have with you.

Babycakes is a godsend. We LOVE their GF brownie cupcakes- get them each time we go. They are sooooo yummy, and Emily (their GM) is AWESOME.

As far as feeling better going GF- you betcha we are. DH and I are both GF, as is my sister and her husband and a few random cousins in my family. My sister is celiac, so she gets super sick if she has gluten. Her hubby isn't celiac, and DH and I tested negative for the celiac gene, but positive for the gliadin antibodies. I bloat up like a baloon if I get 'glutened', but nothing PHYSICALLY happens to DH if he does. Yet, his gliadin antibody numbers are so much higher than mine... crazy. But I honestly, think that EVERYONE is gluten-intolerant to some degree, even if they don't show symptoms. Great book called Wheat Belly- check it out at the library.

Being GF is certainly overwhelming at first. Restaurants are slowly starting to come out with GF menus, or modifications to cater to GF diets. 1 in 100-ish people in the US are said to be gluten-intolerant. That's a LOT.

When we travel, we always google "Gluten Free (insert name of place we're traveling to)" and stick to the restaurants that have GF menus. We also do a lot of grocery shopping and try to stay at places with a fridge and a micro (or even a whole kitchen). For example, we're going to Calgary in a few months (see the ticker! So excited.) We purposefully picked places to stay that are close to grocery stores, have a fridge and micro, or have a full kitchen. It costs a little more money, but that's TOTALLY worth it for our peace of mind. When we go to WDW, we will always and forever rent DVC points from one of the awesome Dis'ers and stay at a studio or 1 bedroom so that we can have a good size fridge and a way to make some of our own meals.

Check out my dining review link in my siggie- last trip was the first time going to WDW GF. At the time we were also soy free, nut free, and practically everything else in the world free, so it was pretty stressful. If you're just GF and eat meat and other things, you will have NO problem at all. We don't eat meat, so our options tend to be a little more limited. But the chefs were still mostly awesome and we didn't feel sick once.

This is so long, I'm sorry! Hopefully you find out you need to be GF! It's not a bad place to be at all! We feel great.

 

[figmentswife]

Thanks for responding - it looks like tons of people looked but you were the only person to respond......

I ended up not being able to test last week - DH got tummy bug Sunday night, I started feeling bad Monday, so I called Dr. office and changed my appt to Thursday, but I called back on Wed to let them know I had not eaten for 3 days, and they said it wasn't worth it to come in b\c the test would be wrong. I did tell them that I had gone gluten free for 4 days before that all started and I felt GREAT, and Dr. said for me to stick to it - that was better then testing. So I can tell you that as of today, I have had no gluten for about 10 days (3 of them no food at all) and I feel better then I have in about 5 years. My tummy is no longer "swollen" and I don't wake up in fear of feeling sick. Only time will tell, but I think I have figured it out - Gluten.

I have been looking up info about eating gluten free at Disney and now I am going to go check out your report in your siggy.

Thanks again.

 

[queenof3]

My 2 daughters, husband and sister all eat gluten free and Disney is the best place for it! The chefs are amazing and very helpful at most restaurants! Send me a PM if you want any specific details. Glad you are feeling better. One of my daughters had many symptoms and only took 2 weeks on the diet to feel so much better. The blood test can give a false positive and the only way to know for sure is to have an endoscopy. Good luck with everything!

 

[SueM in MN]

My niece is gluten intolerant and was with us at WDW for 5 days last Spring.
She had very little trouble getting food she could eat that also tasted good.

I had suggested he contact the special dietary department before going, which she did. You can find more information in post 3 of the disABILITIES FAQs thread. That thread is near the top of this board or you can follow the link in my signature.
Gluten intolerance/allergy I actually a pretty common situation that they del oth at WDW. My niece found they were well able to del with it and he got lots of good food.

For the full service restaurants or buffets, the chef will come talk to you nd go over your choices. For the counter service restaurants, a manager will go thru the choices for you. WDW has a list of counter service restaurants that are better able to deal with allergies on their website ( link in the disABILITIES FAQs thread, post 3).
It sometimes did take a little longer, but my niece felt she was dealt with very well. One of the food court managers in The Land even got some gluten free beer for her - she is an adult, so no worries about age.

She spent quite a bit at Babycakes. Their stuff is not inexpensive, but, she said it was worth it after not having had a donut or sweet roll in 3 years!

 

[SDSorority]

Thanks for responding - it looks like tons of people looked but you were the only person to respond......

I ended up not being able to test last week - DH got tummy bug Sunday night, I started feeling bad Monday, so I called Dr. office and changed my appt to Thursday, but I called back on Wed to let them know I had not eaten for 3 days, and they said it wasn't worth it to come in b\c the test would be wrong. I did tell them that I had gone gluten free for 4 days before that all started and I felt GREAT, and Dr. said for me to stick to it - that was better then testing. So I can tell you that as of today, I have had no gluten for about 10 days (3 of them no food at all) and I feel better then I have in about 5 years. My tummy is no longer "swollen" and I don't wake up in fear of feeling sick. Only time will tell, but I think I have figured it out - Gluten.

I have been looking up info about eating gluten free at Disney and now I am going to go check out your report in your siggy.

Thanks again.

Yeah... any time I get glutened my belly swells up and I look like I'm preggo- not.fun.

I agree with the doctor... if you're feeling a difference, that IS better than any test!

 

[Donaldcp98]

Good luck with finding out whether you are Gluten intolerant or not. We just figured it out in January. I was having lots of digestive issues, bloating, etc and my doctor suggested I try it and see if it helped. He didn't even ask me to test. Let me tell you it made a huge difference. I also have Fibromyalgia and I was surprised that Gluten Free has helped out with those symptoms as well.

I have eaten at a couple of different places in Disney and each time it has been a wonderful experience. I have eaten at Columbia Harbour House, Cosmic Rays, Brown Derby and the Living Seas. At Columbia Harbour house I was able to get Chicken tenders and fries. Both delicious. At Cosmic Rays I had a burger on a Gluten Free bun and fries. Also good. At Brown Derby I had the Cobb salad and a deconstructed Crab spring roll. Amazing. At the Living Seas I had a salad, a fish dish and gluten free bread to start (my dining companions liked my bread better then their regular rolls). Also amazing. And the chocolate Wave is Gluten Free!!! I highly reccomend it. I have asked at Le Cellier in Canada and they can offer a Gluten Free Cheddar Cheese Soup if you give them a day or two advance notice. I have not tried it yet but I love their Cheddar Cheese Soup so I am hoping to get a chance to try it in the near future.

All this to say that you will not have much of a problem with being able to find Gluten free items throughout Disney. I worry less about going there then to regular restaurants.

Enjoy your time in Disney and let us know how it goes. If you want to read a really good book about going Gluten Free then I highly reccomend Gluten Free for Dummies. It is a funny and educational book.

 

[figmentswife]

Good luck with finding out whether you are Gluten intolerant or not. We just figured it out in January. I was having lots of digestive issues, bloating, etc and my doctor suggested I try it and see if it helped. He didn't even ask me to test. Let me tell you it made a huge difference. I also have Fibromyalgia and I was surprised that Gluten Free has helped out with those symptoms as well.

I have eaten at a couple of different places in Disney and each time it has been a wonderful experience. I have eaten at Columbia Harbour House, Cosmic Rays, Brown Derby and the Living Seas. At Columbia Harbour house I was able to get Chicken tenders and fries. Both delicious. At Cosmic Rays I had a burger on a Gluten Free bun and fries. Also good. At Brown Derby I had the Cobb salad and a deconstructed Crab spring roll. Amazing. At the Living Seas I had a salad, a fish dish and gluten free bread to start (my dining companions liked my bread better then their regular rolls). Also amazing. And the chocolate Wave is Gluten Free!!! I highly reccomend it. I have asked at Le Cellier in Canada and they can offer a Gluten Free Cheddar Cheese Soup if you give them a day or two advance notice. I have not tried it yet but I love their Cheddar Cheese Soup so I am hoping to get a chance to try it in the near future.

All this to say that you will not have much of a problem with being able to find Gluten free items throughout Disney. I worry less about going there then to regular restaurants.

Enjoy your time in Disney and let us know how it goes. If you want to read a really good book about going Gluten Free then I highly reccomend Gluten Free for Dummies. It is a funny and educational book.

Thanks for the info. I am making a "cheat sheet" to take in with me based on places others have been able to get gluten free food from.
I am making the cheat sheet on half a sheet of paper, when I finish getting all of my info together I thought I would post it to help others - My plan is to print (again, half sheet) one for each park, laminate them and have that parks info in my fanny pak each day (I will only take the cheat sheet for the park we are going to that day) I feel like this will make it much easier on me and maybe others.

I have been able to get TONS of great info from the Dis, and it has been very helpful in making me feel great about eating while on vacation. My travel Agent has already called and spoken to the Chef at POP to have them ready - and I have had 2 people that stayed at POP private message me about their experience, so I feel good about that also (one said she ate at the resort the most b\c they were so wonderful and the food was AWESOME)

 

[figmentswife]

 

[clanmcculloch]

Unfortunately, you're using outdated information on your cheat sheets. I used to carry something similar back when Special Diets actually provided useful information. It's become a lot harder to get info though meaning that the cheat sheets can't be nearly as detailed any longer if they're going to be accurate.

Actually, taking a look over your lists, you're missing a lot of stuff. Here are some changes I'd recommend:

• I think the only thinks at the frozen carts that isn't gluten free is the ice cream sandwiches. Those pineapple bars are delicious, though if I was able to eat the Mickey ice creams I'd most likely get those more often than the pineapple just because they're Mickey.
• I don't see the gluten free pizzas at Pizza Planet in DHS.
• Everywhere you've got EnerG bun written, replace it with Udi's bun.
• Are the Crispy rice treats gluten free? I really haven't paid attention since I know they're not dairy free but I would have thought that they use regular old Rice Krispies which DO have gluten in them. Hopefully somebody else will chime in.
• I don't believe that the hot dog cart at Epcot has buns; I believe that you have to get the dog bunless and personally I'm not sure how they avoid cross contamination with the tongs which place dogs in buns.
• In Epcot, the World Showcase has some gluten free options. I know that in Mexico you can get soft tacos (the hard shells are deep fried in the same frier as gluten), beef or chicken though you have to get them without the chips (they gave us grapes instead). You can get a side of spanish rice to go with them. I believe there are gluten free options in Morocco as well. This is something else I hope otheres will chime in about.
• In MK I believe Caseys has some safe hot dogs as well as GF buns.
• In MK, you completely left off Cosmic Ray's. They have bacon cheeseburgers with buns and they also have rotisserie chicken and maybe ribs (not sure if they still have the gluten free ribs or not; anybody know?).
• In Epcot, Sunshine Seasons has SO much more than what you listed. My personal favourite there is the cold seared tuna steak over salad (the menu shows it over pasta but for gluten free folks we get the salad which IMO is SO yummy). My kids like the half rotisserie chicken. There are quite a few sides that are gluten free though my kids just like plain rice. They do have gluten free soy sauce if you ask for it. The pork chop and salmon I believe are also gluten free. There's no extra wait for any of these items to be cooked unlike the rice pasta which you would have to wait for. I love that we can get our food at Sunshine Seasons without a long wait; we only wait for a chef so he can grab food without risk of cross contamination as the food itself that I've listed is already made gluten free for everybody. There are also more dessert options such as chocolate chip cookies and krispie rice chocolate bars by Enjoy Life plus ice cream.

I can't think of other things to mention off hand. I do understand having these kinds of list and as I said I used to always carry them myself so that I'd know whether I'd be able to find safe food when walking in rather than waiting in line only to find out that there's nothing. The first few trips this really is a great way to go. Over time, I've found I use them less and less because I've got so much of it committed to memory. It is extremely helpful to have in this kind of detail the first few trips.

 

[figmentswife]

Unfortunately, you're using outdated information on your cheat sheets. I used to carry something similar back when Special Diets actually provided useful information. It's become a lot harder to get info though meaning that the cheat sheets can't be nearly as detailed any longer if they're going to be accurate.

Actually, taking a look over your lists, you're missing a lot of stuff. Here are some changes I'd recommend:

• I think the only thinks at the frozen carts that isn't gluten free is the ice cream sandwiches. Those pineapple bars are delicious, though if I was able to eat the Mickey ice creams I'd most likely get those more often than the pineapple just because they're Mickey.
• I don't see the gluten free pizzas at Pizza Planet in DHS.
• Everywhere you've got EnerG bun written, replace it with Udi's bun.
• Are the Crispy rice treats gluten free? I really haven't paid attention since I know they're not dairy free but I would have thought that they use regular old Rice Krispies which DO have gluten in them. Hopefully somebody else will chime in.
• I don't believe that the hot dog cart at Epcot has buns; I believe that you have to get the dog bunless and personally I'm not sure how they avoid cross contamination with the tongs which place dogs in buns.
• In Epcot, the World Showcase has some gluten free options. I know that in Mexico you can get soft tacos (the hard shells are deep fried in the same frier as gluten), beef or chicken though you have to get them without the chips (they gave us grapes instead). You can get a side of spanish rice to go with them. I believe there are gluten free options in Morocco as well. This is something else I hope otheres will chime in about.
• In MK I believe Caseys has some safe hot dogs as well as GF buns.
• In MK, you completely left off Cosmic Ray's. They have bacon cheeseburgers with buns and they also have rotisserie chicken and maybe ribs (not sure if they still have the gluten free ribs or not; anybody know?).
• In Epcot, Sunshine Seasons has SO much more than what you listed. My personal favourite there is the cold seared tuna steak over salad (the menu shows it over pasta but for gluten free folks we get the salad which IMO is SO yummy). My kids like the half rotisserie chicken. There are quite a few sides that are gluten free though my kids just like plain rice. They do have gluten free soy sauce if you ask for it. The pork chop and salmon I believe are also gluten free. There's no extra wait for any of these items to be cooked unlike the rice pasta which you would have to wait for. I love that we can get our food at Sunshine Seasons without a long wait; we only wait for a chef so he can grab food without risk of cross contamination as the food itself that I've listed is already made gluten free for everybody. There are also more dessert options such as chocolate chip cookies and krispie rice chocolate bars by Enjoy Life plus ice cream.

I can't think of other things to mention off hand. I do understand having these kinds of list and as I said I used to always carry them myself so that I'd know whether I'd be able to find safe food when walking in rather than waiting in line only to find out that there's nothing. The first few trips this really is a great way to go. Over time, I've found I use them less and less because I've got so much of it committed to memory. It is extremely helpful to have in this kind of detail the first few trips.

Thank to for more info. I got most of the info from others on the boards who recently were there and I know it can/will change by the time we go - it is more of a quick reference for me to have an idea of where/what i can eat. Also is more info on the other side of each card - so you can't see everything.
I am going to print your list and double check it to my cards to be sure i have as much info as I can.

 

[jenjenmouse]

I didn't read the whole post or all of the replies but I wanted to say my family has been GF for a year. I can't tell you enough about the positives of going gf. Everyone would feel better if they did it. All foods fall into 2 categories, inflammatory or anti-inflammatory. Gluten and foods that contain gluten falls under inflammatory. It is just throwing gas on a fire if you are having any issues ( sinuses to gi problems and everything in between). If you go gf you need to stick to it 100% for at least 6 months to get the full effects. Disney is the best place on the planet to go gf. Much easier even than home. We went in Dec. 2011 and it was so easy. Every place has options and all the sit down places have chefs that will come out and talk with you and figure out something to meet your needs. GF is taken very seriously there. Good luck. Also, it isn't enough to simply stop eating gluten, you also need to heal the damage done by eating it all the years with a good pro-biotic . Hope this helps.
Jen

 

[SDSorority]

I didn't read the whole post or all of the replies but I wanted to say my family has been GF for a year. I can't tell you enough about the positives of going gf. Everyone would feel better if they did it. All foods fall into 2 categories, inflammatory or anti-inflammatory. Gluten and foods that contain gluten falls under inflammatory. It is just throwing gas on a fire if you are having any issues ( sinuses to gi problems and everything in between). If you go gf you need to stick to it 100% for at least 6 months to get the full effects. Disney is the best place on the planet to go gf. Much easier even than home. We went in Dec. 2011 and it was so easy. Every place has options and all the sit down places have chefs that will come out and talk with you and figure out something to meet your needs. GF is taken very seriously there. Good luck. Also, it isn't enough to simply stop eating gluten, you also need to heal the damage done by eating it all the years with a good pro-biotic . Hope this helps.
Jen

What Probiotic do you use? We use PB8 and it works pretty well for us.

 

[BWV Dreamin]

I am gluten intolerant, no Celiac's. I've been GF since 2/22/12. The results have been dramatic!! I feel like a new person. I am also lactose intolerant so I drink almond milk in addition to avoiding wheat/ gluten. Once you start feeling better you can really tell when something doesn't agree with your stomach.

I had no idea vitamins weren't gluten free! Started to take Centrum 3 weeks after I went GF and wow did I feel it! So it's a constant education finding what's GF and what's not.

Disney was great with me and helping me get GF foods. They say to avoid buffet's due to cross contamination. Other than that they were able to accommodate me.

 

[figmentswife]

I am gluten intolerant, no Celiac's. I've been GF since 2/22/12. The results have been dramatic!! I feel like a new person. I am also lactose intolerant so I drink almond milk in addition to avoiding wheat/ gluten. Once you start feeling better you can really tell when something doesn't agree with your stomach.

I had no idea vitamins weren't gluten free! Started to take Centrum 3 weeks after I went GF and wow did I feel it! So it's a constant education finding what's GF and what's not.

Disney was great with me and helping me get GF foods. They say to avoid buffet's due to cross contamination. Other than that they were able to accommodate me.

I am feeling GREAT!!!! Amazing after 5 years of being sick. I am still a little paranoid about being sick most days, but I think with time it will get better. I have not had to take zofran since I started gluten free - that is a good thing.

 

[clanmcculloch]

There's no need to avoid buffets. The chef walk around with you going over your options and will get you fresh food from the kitchen to avoid the cross contamination issue. If the chef doesn't offer then just ask.

 

[Donaldcp98]

Please also keep in mind that when you go into a park you can go to guest relations who had a general print out of gluten free items that you can have. If I can find where I placed It I will try to scan you what they gave me when I asked for it a couple of weeks ago.

 

[figmentswife]

Please also keep in mind that when you go into a park you can go to guest relations who had a general print out of gluten free items that you can have. If I can find where I placed It I will try to scan you what they gave me when I asked for it a couple of weeks ago.

REALLY!!!! Cool, thanks for the tip.

 

[SDSorority]

Please also keep in mind that when you go into a park you can go to guest relations who had a general print out of gluten free items that you can have. If I can find where I placed It I will try to scan you what they gave me when I asked for it a couple of weeks ago.

WOAH. Really?!

I knew they did this at DL, but didn't know they did this at WDW!

 

[gshook]

We traveled last year with my father-in-law who eats a gluten free diet and my son who is allergic to whey protein and shellfish. We used the dining plan and alerted every restaurant of our special needs. The chefs came and talked with us before every meal and treated us like royalty. My father-in-law even ate special Mickey waffles at the Tusker House. No one felt like they were missing a thing. The company also emailed me documents about special quick service dining options. Happy eatting at WDW!