Gluten question... long but please bear with me

[dimndgal1]

I probably know the answer to this, but thought I would ask the wonderfully helpful DISers and get more feedback. My question is if it's worth calling Disney and having them notate GF on my ADRs given I don't have anything 'official' to back up the need?

BACKSTORY
I recently underwent hip surgery and am slowly working through the recovery process. Around last Thanksgiving, I started having digestive and reflux issues that the doctors attributed to the pain meds I was taking for my hip. My doc put me on heartburn and reflux meds but didn't want to delve any deeper until after my hip surgery.

Fast forward to my surgery - while in the hospital, I was on a very limited diet (I don't respond to narcotic meds well and get really sick, so I was literally on broth and health shakes for the better part of a week), and I noticed my digestive symptoms disappeared. I began to suspect the cause wasn't medicines but maybe a food trigger. As I started to introduce real foods back in, I noticed that when I ate meals heavy in gluten, I felt worse.

Now that I am finally independently mobile post surgery, I tried to make an appointment with my PCM about the possibility of being gluten sensitive, but there is no availability until AFTER our Disney trip. Right now, I'm just eliminating gluten as much as possible and sort of winging the whole thing.

THE BOTTOM LINE...
My main reason for asking is I am concerned how limited I will be when we go to eat? I seem to do fine with some gluten - I can eat a flour tortilla around a burrito - I just can't seem to handle large quantities.

Right now, we have ADRs at CRT for breakfast and GG for dinner. I know CRT has a lot of gluten things for breakfast and I'm concerned there won't be a reasonable substitute if I notate GF. And, I can't imagine GG has an overload of gluten other than the rolls maybe.

Finally (and thanks for reading this long) my biggest question is snacks. I have read some of the GF food reviews but see very little in the way of snacks around the parks. Are there any good options to look out for other than fruit?

Thanks so much!!!

 

[stackyallred]

I think you should absolutely make a note on all ADRs that you need to avoid gluten. Going on vacation is not cheap and who wants to take a risk of feeling bad if you don't have to? I, too had a few months of testing how I felt when I gave up gluten. I eventually found out through blood tests that I am allergic to wheat (and about a billion other things). So, for months I had no "official" diagnosis but my body kept me informed on how it felt about gluten (bad acne, indigestion, bloating, stomach pain). Before I was tested, I had planned on marking that I was GF on all my ADRs even without a doctor's diagnosis. I just didn't want to take any risks of feeling yucky when in my favorite place! For the last several years, I always marked "other" on my ADRs in the food allergy section. This assured a chef would come speak to me. I had not been tested for a mushroom allergy by that point, but I knew how I would be sick in bed for hours if I ate any. I always explained that to the chef (I would say it was an intolerance that I had figured out over time) and they always were kind and helpful- they never seemed to think I was in the wrong for making sure I did all I could to avoid eating mushrooms. Good luck with your vacation and whatever you decide!

 

[clanmcculloch]

I think it'll all depend on how you want to handle your diet at WDW. Will you want to be compeletly gluten free or not? If you'll want to partake of things like cinnamon buns, delectable cupcakes, etc then I wouldn't make note of it and just make smart choices. If you'll want things like gluten free buns, waffles, brownies, etc then I would make note of it. Just be aware the chefs won't go half way for you. They'll either prepare you gluten free meals or they won't. If something has trace amounts of gluten in it, you'll get a lot of pushback from chefs if you ask for those items. Many meals are naturally low in gluten (obviously not sandwich or pasta types of meals; I'm talking about meals where there's a protein, starch and vegetable) but have small amounts of gluten maybe in sauces or bread crumb topping. Since you can handle things like a wrap for a burrito then you likely can handle this but if you're asking for a gluten free meals then the chefs won't serve you these. Again, I really think you basically want to think about the types of meals that you want. If you're eating somewhere like the Plaza that's mainly sandwiches then I can see asking for gluten free bread or a gluten free brownie for a sundae so maybe make a note of it there but as a place like Garden Grill I'd personally in your shoes just eat the regular meal since it's naturally lower in gluten though not gluten free; it does need modification to be completely gluten free. I hope I'm making sense in what I'm saying.

I'd likely do the same at CS locations. If you want a burger or something else that's served on bread I'd ask to speak with a manager to get them to put it on a gluten free bread but let them know that you're fine with the fries from the regular frier (I doubt they'll argue since it's easier for them) but if ordering a meal that's not on bread such as rotisserie chicken or ribs then don't even bother mentioning it since you're not concerned with cross contamination or handling and even if the meal is naturally gluten free they do take extra precautions to ensure lack of cross contamination resulting in extra wait time so no need to put yourself through the extra wait if you don't need to.

There are gluten free cookies and brownies available at most CS and snack locations that sell regular baked goods. If you don't see them, ask a CM. The frozen ice cream carts are mostly gluten free; I think the ice cream sandwiches are the only things with gluten. The popcorn and turkey legs are gluten free as are the cinnamon almonds. Since you're ok with things like burritos you're likely ok with egg rolls as well and those are available in MK near where Dole Whips are sold (these are also gluten free) and at Epcot in China. At MK, also check out the baked potatoes and baked sweet potatoes.

 

[buffettgirl]

^^ that's pretty much how I handle my own (mild) peanut allergy. I tend to be fine with anything that might be cross contaminated and things cooked with peanut oil, but it's super easy to just ask if an item has peanuts when I'm in doubt (like at Boma or Tusker house, where the food is unfamiliar to me). I don't really want, or need, to be prohibited from getting a cookie that might have been prepared in the same facility as peanut products or that "may contain traces...." or may have been sitting in the same kitchen, but I also can't eat something that actually has peanuts or peanut butter.

 

[dimndgal1]

Such awesome advice and helpful responses! Thanks so much!

I think I will definitely notate on CRT just to have the chance to discuss options. I agree that avoiding discomfort is worth potentially missing out on something. I do agree that GG is pretty much a minimal gluten meal, and I'm not worried about cross contamination... just will avoid the rolls and any dessert with crust or cake. ;-)

I didn't think about GF bread at Cs - yay for options! And, I am so glad there are GF snack items! I tend to be a snacker when at amusement parks but like to do something healthy and something sinful so cookies and cupcakes are a welcome treat.... not to mention how much I do love dole Whips!

One thing that does make me glum is that DD is looking so forward to having one of 'Tiana's' beignets at PO and I think I will just sit that one out. But, maybe a treat from Babycakes will compensate.

Thanks again for the helpful responses. It makes me much less anxious to have a better idea of what my options are going into the trip.

 

[SDSorority]

Check out my siggie.

It's super easy to be gluten-free at WDW. We bring our own snacks, but have not had any problem at the restaurants. Some restaurants were better than others, of course.

 

[dzorn]

I probably know the answer to this, but thought I would ask the wonderfully helpful DISers and get more feedback. My question is if it's worth calling Disney and having them notate GF on my ADRs given I don't have anything 'official' to back up the need?

BACKSTORY
I recently underwent hip surgery and am slowly working through the recovery process. Around last Thanksgiving, I started having digestive and reflux issues that the doctors attributed to the pain meds I was taking for my hip. My doc put me on heartburn and reflux meds but didn't want to delve any deeper until after my hip surgery.

Fast forward to my surgery - while in the hospital, I was on a very limited diet (I don't respond to narcotic meds well and get really sick, so I was literally on broth and health shakes for the better part of a week), and I noticed my digestive symptoms disappeared. I began to suspect the cause wasn't medicines but maybe a food trigger. As I started to introduce real foods back in, I noticed that when I ate meals heavy in gluten, I felt worse.

Now that I am finally independently mobile post surgery, I tried to make an appointment with my PCM about the possibility of being gluten sensitive, but there is no availability until AFTER our Disney trip. Right now, I'm just eliminating gluten as much as possible and sort of winging the whole thing.

THE BOTTOM LINE...
My main reason for asking is I am concerned how limited I will be when we go to eat? I seem to do fine with some gluten - I can eat a flour tortilla around a burrito - I just can't seem to handle large quantities.

Right now, we have ADRs at CRT for breakfast and GG for dinner. I know CRT has a lot of gluten things for breakfast and I'm concerned there won't be a reasonable substitute if I notate GF. And, I can't imagine GG has an overload of gluten other than the rolls maybe.

Finally (and thanks for reading this long) my biggest question is snacks. I have read some of the GF food reviews but see very little in the way of snacks around the parks. Are there any good options to look out for other than fruit?

Thanks so much!!!

I just wanted to make sure you realize that if you do have celiac you can still be damaging your intestines and not show the symptoms. So even though that little bit of gluten you don't think is bothering you may be causing damage.

We have not eaten in GG in a while but looking at the menu just about every item has a potential to contain gluten.

Denise in MI

 

[Elinor Dashwood]

I probably know the answer to this, but thought I would ask the wonderfully helpful DISers and get more feedback. My question is if it's worth calling Disney and having them notate GF on my ADRs given I don't have anything 'official' to back up the need?

I would absolutely have them make note on your ADR's for GF.

Right now, we have ADRs at CRT for breakfast and GG for dinner. I know CRT has a lot of gluten things for breakfast and I'm concerned there won't be a reasonable substitute if I notate GF. And, I can't imagine GG has an overload of gluten other than the rolls maybe.

I have read amazing reviews for GG and their GF food. Most of it is already GF, apart from the bread and dessert. I've read good things about CRT and eating GF. They'll probably offer you similar items like GF muffins, donuts, waffles, eggs, sausage and bacon.

Finally (and thanks for reading this long) my biggest question is snacks. I have read some of the GF food reviews but see very little in the way of snacks around the parks. Are there any good options to look out for other than fruit?

They used to give you a list of GF snack options for each park. Apparently they're revamping things over in Special Diets so there isn't a list to give out. But I was reassured that you could read the labels. Not a very smart option as gluten is NOT required by law to be listed in ingredient labels. But in the past, these are the things that "were" GF for me:

Frozen Pineapple Bars
Frozen Strawberry Bars
Frozen Mickey Bars
Popcorn
French Meadow Brownies (I think these and the cookies have been replaced by the OMG cookies)
Divvies Caramel Popcorn
Enjoy Life Cookies

I would definitely make note on your ADR's. If you feel better eating GF, then definitely continue to do so while on vacation. Nobody likes feeling crappy on vacation.

 

[Boiseboone]

I'd say it depends on if you feel best by simply going low gluten - then don't notate it, but make smart choices when you order - or if you want to truly go gluten free. If you want or need to be completely gluten free, then definitely put it on your ADRs. Gluten is in a lot of things (most soy sauce, for instance) and it can be hard to completely avoid without the guidance of a chef.

Also, I wanted to chime in that if you suspect you have celiac, then you should NOT cut out gluten until you are tested. I know, that's counter intuitive, but if you cut it out before your test you can get a false negative.

Of course, you don't want to feel lousy on vacation, either. Just make sure your doc knows that you've gone gluten free (or even low gluten) before he/she schedules your test so you can have enough time to get re-glutened first.

Good luck and have fun!

 

[buffettgirl]

I'd say it depends on if you feel best by simply going low gluten - then don't notate it, but make smart choices when you order - or if you want to truly go gluten free. If you want or need to be completely gluten free, then definitely put it on your ADRs. Gluten is in a lot of things (most soy sauce, for instance) and it can be hard to completely avoid without the guidance of a chef.

Also, I wanted to chime in that if you suspect you have celiac, then you should NOT cut out gluten until you are tested. I know, that's counter intuitive, but if you cut it out before your test you can get a false negative.

Of course, you don't want to feel lousy on vacation, either. Just make sure your doc knows that you've gone gluten free (or even low gluten) before he/she schedules your test so you can have enough time to get re-glutened first.

Good luck and have fun!

I was going to say the same thing, but I had hoped she knew it. It's what we tell parents who think their kids have celiac. The thinking is to get them off gluten so they feel better but often once they do that they start healing so any scoping might not come back conclusive.

 

[dimndgal1]

THanks so much for the great information! It's been one of THOSE weeks and it was so wonderful to come on and see more insight and great advice.

I definitely understand the need to refrain from gluten if it is Celiac's, but (as others have said) my friend mentioned not eliminating it entirely until testing -- she had cut it out entirely and the reintroduction after 5 months GF was brutal. It does stink that the very way to diagnose the ailment could potentially make it worse... bleh!

I am at the point where I am trying to eat wisely - I have switched to Quinoa for pastas, GF mixes for breads - but will still eat a flour tortilla or have a few bites of breaded items. It's mostly avoiding sandwiches or pizza with flour and anything else that is a surplus of gluten.

I do appreciate all the wonderful advice and the wonderful suggestions -- I think Dole Whips and the frozen fruit bars will be AWESOME in the late June Florida heat!

to all the awesome DISers!

 

[dimndgal1]

I called and added the GF to our two ADRs just so it's there. I had a bad experience with unexpected wheat out to eat this weekend and I just think it's better to know up front and make the decision with all the facts -- i.e. if I want to taste DH's french toast stick, I will know what I'm getting into rather than trying to order GF and being surprised.

Also, I called my PCM and she was able to schedule a blood test for next week so that I can have some results before we go - that way I will know yay or nay and can go from there.

I do want to thank everyone for the great information and wonderful insights. You all have been beyond helpful and also so informative in making sure people have all the information!!!

 

[clanmcculloch]

I just want to make sure that you understand that the blood test is not the be-all and end-all that too many doctors believe it to be. My 14yo and I both test negative for celiac according to the blood tests. We both react to trace amounts of gluten. If the test comes back negative, do what works for you; if gluten free helps your health then remain gluten free. The medical community just doesn't have a real grasp on how guten can impact people with health issues.

 

[buffettgirl]

I just want to make sure that you understand that the blood test is not the be-all and end-all that too many doctors believe it to be. My 14yo and I both test negative for celiac according to the blood tests. We both react to trace amounts of gluten. If the test comes back negative, do what works for you; if gluten free helps your health then remain gluten free. The medical community just doesn't have a real grasp on how guten can impact people with health issues.

ditto this. If your blood test comes back positive, then you know you have it, but if it comes back negative and you really feel like you react to gluten then you really should be scoped and biopsied in order to get a full picture of what's happening. On the other hand, if you know removing gluten makes you feel better and if you don't need a definitive dx, then there's no reason to do the endoscopy. But just having that negative blood test might not really be your answer.

 

[clanmcculloch]

Actually, the scope and biopsy isn't much better than the blood test. Both mine and DD14's biopsies are negative for celiac. We do both have pathological abnormalities in our duodenum (the area they biopsy for celiac) among other areas of our GI tracts but they are NOT consistent with a celiac pathology. I am absolutely not saying to not get a biopsy as scopes with lots of biopsies CAN tell you a lot. I'm just saying that a negative celiac intestinal biopsy does not rule out a gluten issue.

 

[buffettgirl]

Actually, the scope and biopsy isn't much better than the blood test. Both mine and DD14's biopsies are negative for celiac. We do both have pathological abnormalities in our duodenum (the area they biopsy for celiac) among other areas of our GI tracts but they are NOT consistent with a celiac pathology. I am absolutely not saying to not get a biopsy as scopes with lots of biopsies CAN tell you a lot. I'm just saying that a negative celiac intestinal biopsy does not rule out a gluten issue.

this is also true. We have many friends in the T1D community who's kids have celiac (it tends to go in combo) and probably half of them have never had a positive test - blood or otherwise. It's a screwy disease.

 

[dimndgal1]

It is amazing how intricate and involved the gluten issue is! I feel like the more I read on it, the less I really know.

I do know the blood test is even only a step in figuring things out and I have no real plans to go back to devouring bread regardless... I just want to try to make sure I am going through the right steps to see if gluten is just irritating or if it's potentially creating a bad situation in my digestive track. I'm also glad my doctor went ahead an put in an order for the blood test instead of making me wait to see her next month -- at least I feel like I'm taking a step in the right direction.

I've also cut back some on DD's gluten as we're wondering if some symptoms we chalked up to allergies/growing are actually gluten related - she's on allergy shots for external allergens and while many symptoms have improved, she still has some tummy trouble that hasn't changed (they said it was due to the medications she was taking and the drainage of her irritated sinuses).

If nothing else, I am definitely going to play it safe at Disney... I would rather be GF and maybe sneak a taste of DH's bread than go ahead and assume I can down the loaf. I'm just glad there are some great resources on how to be GF at the World and that I can seek advice from people who know!!

 

[SDSorority]

It is amazing how intricate and involved the gluten issue is! I feel like the more I read on it, the less I really know.

I do know the blood test is even only a step in figuring things out and I have no real plans to go back to devouring bread regardless... I just want to try to make sure I am going through the right steps to see if gluten is just irritating or if it's potentially creating a bad situation in my digestive track. I'm also glad my doctor went ahead an put in an order for the blood test instead of making me wait to see her next month -- at least I feel like I'm taking a step in the right direction.

I've also cut back some on DD's gluten as we're wondering if some symptoms we chalked up to allergies/growing are actually gluten related - she's on allergy shots for external allergens and while many symptoms have improved, she still has some tummy trouble that hasn't changed (they said it was due to the medications she was taking and the drainage of her irritated sinuses).

If nothing else, I am definitely going to play it safe at Disney... I would rather be GF and maybe sneak a taste of DH's bread than go ahead and assume I can down the loaf. I'm just glad there are some great resources on how to be GF at the World and that I can seek advice from people who know!!

Good luck! It really is easy to be GF at WDW, ESPECIALLY now that Babycakes is now in the mix.