Lynayah

'Ohana (Polynesian Resort)

Chef TJ was outstanding! He has a great knowledge of gluten-free needs and is well-known for going out of his way to create special gluten-free meals. My meal was as wonderful as I hoped it would be.\

For those who are new to

Kouzzina by Cat Cora (Boardwalk)

My husband loved his meal. He had the slow-cooked Lamb Shank served with Oven-baked Gigantes Beans and Pepper Sauce. Dessert: Chocolate Budino Cake

LeCellier (Epcot, Canada)

We dined there twice and enjoyed it equally well both times.

Frankly, I wasn't sure what to expect. There's been so much hype about this restaurant, that I thought it might disappoint us. We're from the Chicago area and used to some great steaks here.

I am happy to report that Le Cellier was excellent!

The first time, I had the Le Cellier Mushroom Filet Mignon, - Served wild mushroom risotto and white truffle-herb butter sauce. As I recall, this dish is fine as is and did not need to be adjusted for gluten-free. I ordered rare and it was cooked perfectly. The steak was tender and very flavorful. The risotto was perfect with the meat.

Hubby had cheddar cheese soup the first time. He said it was okay but not a huge wow to him. He enjoyed the bread sticks. I had the usual Glutano roll substitute.

The first time, he ordered a Kansas City strip steak with coffee rub. He ordered rare, and it was cooked perfectly. He liked it, but after tasting my filet, he vowed to order the filet the next time around, which he did, and loved it. He is not a filet person. He thinks that filet mignon lack flavor, so he usually wants a larger steak with more

Citricos (Grand Floridian Resort, two dining credits)

DH and I split a salad for openers: Goat Cheese Truffle Salad - Tomato, Cracked Pepper, and Sesame "Truffles" with Arugula, Frisee, Nueske Applewood Smoked Bacon, and Peaches

We weren't thrilled with this salad. Hubby liked it more than I did. The greens were dry and lacked flavor. I expected more. The goat cheese truffles were good, but anyone can roll goat cheese into a ball, and I wasn't impressed for the $9 price. I would not order the salad again.

Braised Veal Shank - Carrot-Potato Puree, Roasted Vegetables. This was the best entree we had at Disney. The veal shank was succulent, rich, and cooked to perfection. Marrow forks were included, thankfully, because we didn't want to miss a bite. The portion was large -- more than I could eat, but I ate it anyway!

It would be very easy for us to go to Citricos again and again (as we most definitely will) and order the veal shank over and over, without ever trying another entree. It's just that good, and the potatoes and veggies were equally perfect.

DH had warm chocolate banana tart for dessert, served with vanilla ice cream. He loved it.

I had cr

Time out for a word about gluten-free breads at Disney

Most of the rolls, buns, etc. are Glutano or similar. The problem is, the chefs have no idea how to successfully prepare them. They either put them in a dedicated revolving toaster or in the oven, and the darn things come out like hockey pucks. Warning: You might break a tooth or shoot your eyes out . . . or whatever.

I found that if I asked the chef to please microwave the bread for 10-15 seconds instead of toasting or heating it in another way, the bread came out much, much better - actually edible.

Try it and let me know if you agree.

For more, see Kouzzina, below. They served a wonderful, gluten-free lavash!

Included here are general dining plan reviews on behalf of my husband (does not need gluten-free dining) and gluten-free specific dining reviews from me (I'm the gluten-free'er):

Table Service:

Sanaa (Animal Kingdom Lodge, Kidani side)

Jiko (Animal Kingdom Lodge, Jambo side, two dining credits)

Boma (Animal Kingdom Lodge, Jambo side)

Citricos (Grand Floridian Resort, two dining credits)

LeCellier (Epcot, Canada)

Kouzzina by Cat Cora (Boardwalk)

'Ohana (Polynesian Resort)

Had pressed pot coffee at: Sanaa, Jiko, Boma, Citricos, and Kouzzina. All pressed-pot coffee was outstanding -- highly recommend. Hint: DH had soda with his meals, but I saved my beverage credit for coffee. Because the pressed-pot coffee is usually a large serving (Sanaa smaller), they brought two cups just in case DH wanted some, too, which he did, but even though it served us both, it counted as a single beverage for me and was no additional charge for him.

Quick Service:

Sunshine Seasons (Epcot Future World, The Land Pavilion)

Flame Tree BBQ (Animal Kingdom Park, Discovery Island)

The Mara (Animal Kingdom Lodge, Jambo side)

Captain Cook's (Polynesian Resort)

Snacks:

Plaza Ice Cream Parlor, Main Street Magic Kingdom

Popcorn and Mickey Ice Cream Bar, various vendor carts at Hollywood Studios

Also a word about gluten free breads at Disney.

I will begin by saying that all the chefs at every table service restaurant were knowledgeable, accommodating and caring.

Often, the food I ordered was exactly as on the menu because the dish was already gluten-free. Where adjustments were needed, they were often a step up. More as I continue . . .

As suggested by Disney, I always let the server know I needed gluten-free dining. Every chef came out to speak with me and treated me as though I was the most important guest in the world. The service was outstanding.

Quick service varied, as I'll explain.

Snacks: Watch ingredients carefully, as I'll explain.

I'll begin with table service restaurants:

Sanaa (Animal Kingdom Lodge, Kidani side)

This was one of my favorite meals. The portion sizes were small, though, so I'd recommend going to Sanaa after you've had at least a few days of Disney Dining -- those of you who have done the dining plan know what I mean, I'm sure! You get to the point where there's been SO MUCH FOOD that a smaller portion size is a welcome relief!

We split the Mustard Seed Crusted Scallops - With a Coconut Cream Sauce -- it was excellent with a light touch of coconut. Three large scallops.

I had the combo of short ribs and Tandoori chicken with basmati rice. The spices and flavors were sooooo rich and delicious. Again, the portions were quite small -- the short ribs were two large bits-size pieces that I cut into smaller bites. My husband said he would have been disappointed had he ordered it, but I loved it. It was enough food for me though, and very satisfying.

DESSERT WAS AMAZING, and the portion was large. Chai Cream -- oh my gosh, it was my favorite dessert of the trip. It comes in a tall, V-shaped glass. As I watched it being served to others, I thought it was a dessert drink, but it is not.

What it IS is a Cr

Hi,

Does anyone know if Wal-Mart's Raw Chicken Leg & Thigh Pieces are Gluten-Free -- the large bag they carry in the meat section? There are flavoring additives in the meat, and I saw on the web that the meat may not be gluten-free. Does anyone know for sure? Where did you get the information?

Which store brands of raw chicken are safe? Does anyone have a source for a list they might share?

I no longer have the packaging and plan to check the next time I'm at Wal-Mart. The family member who made the chicken for me said he checked the package it it seemed okay, but without my looking at it, I'm not sure.

I'm still learning where to go to research all this stuff on my own, so if anyone has links, etc., they'd be welcome.

Thank you so much!

Could you please tell me if they do any follow up and treatment, look at related disorders, or do they just diagnose? Thank you.

They tested me for vitamin absorption and I believe they also did a CBC. I'm in the initial weeks of all this and have another appointment scheduled for November. I would guess that if they are going to look into other things, they would do so at that time.

I'll let you know.

I am so sorry that so many people suffer from this, yet I am very happy to hear I am not alone.

I just got back from a Disney World vacation -- a wonderful, healthy gluten free week (I'm going to post a gluten free review as soon as I can), except on my last day, I made a horrible mistake. I ate a Divvies choc. chip cookie thinking it was gluten free (a cast member told me they were), so I had one WITHOUT READING THE LABEL FIRST, which as we all know is a Bozo-no-no -- if there's a label, never take anyone's word without checking first. My fault.

I thought the cookie was not great, but pretty good, so I decided to check the calories and BAM, first ingredient is wheat. My heart sank.

I became symptomatic shortly thereafter. The next day, my lower back, kidney area, hips went right back to the way they used to be. Wow, I have no doubt now about gluten causing the problem.

I'm still having D and the pain. It's been six days and counting since getting glutened. Since I'm still new to all this, I guess the up side is that it will be a good lesson for me as well as a good learning in how long I remain symptomatic after blowing it.

It might not all be from the cookie. This week, I baked some Wal-Mart chicken legs that I am learning may not be gluten free. I'm going to post the question on the food board here. Anyway, if it is not gluten free, it may have furthered the symptoms.

Back pain, what a pain! But how wonderful that giving up gluten has helped all of us. It continually amazes me the problems that come from gluten -- things I (and my doctors for many years) NEVER suspected.

Again, I am sorry others have had to go through it, but it is soooo comforting to know I am not alone.

I have a call into Walt Disney World, but I have yet to hear back. Does anyone here know if the hot cocoa at WDW -- the cocoa served at the dispensing machines where the refillable mug is allowed -- is gluten-free?

Thank you so much! We go this Friday and I am trying sooooo hard to find out.

Don't quote me, but at some point, I distinctly remember someone (ravenwoodlass, maybe?) saying that other countries recognize other genes that can cause celiac. You might have one of those genes.

Yes, thank you for posting this!

In other threads a few people have told me the same. I will definitely ask my doctor about it at my next appointment in November.

ABSOLUTELY!!! My back pain used to be so bad prior to my diagnoses that my doctors were 100% certain I had some rare kidney condition but they just could not figure out what it was. I would get pains so bad in my lower back on both the right and left sides -- but mostly the right side -- that I could not walk, it hurt to sit. I felt sick to my stomach, dizzy, and I ended up having to take pain killers a lot to get rid of it.

Now, since I've been gluten free for 6 months now, I've noticed when I've made "mistakes" on my diet and accidently eaten something with gluten, my very first indications are I start to get a little twinge of pain in my back and then my joints hurt REALLY bad (like I have arthritis), then the stomach issues, and then I have a headache, irritability, and fatigue for a week and a half.

Yes! When I did my gluten challenge, there were a few days toward the end when I would experience horrible sharp pain in my kidney area. It would almost cripple me . . . and then it would subside a bit after a while. Thank you for sharing this.

Agreed.

Regarding the "floaters": it is my understanding (and someone please correct me if I'm wrong) that even though you tested negative for celiac, you can still be gluten intolerant, you can still have malabsorption, and this would account for the floaters. Likewise, since you've gone gluten-free you most likely are absorbing better and thus no floaters.

As far as the genes go.....I know there are people without DQ2 or 8 that definately have gluten issues. I don't think you have to have those two to be celiac, it's just that ninety some percent of diagnosed celiacs have one or both of those.......but there are many more undiagnosed, maybe they all have a different gene or cannot test positive on the currently available methods of testing? Or maybe those who are fortunate enough to be tested positive do so because of something on DQ2 or 8?? There is much more research to be done. Listen to your body.

That's a really good point -- I thought that only with true Celiac malabsorption was an issue. I hope someone here will know for sure. Thank you!

Oh wow this happens to ME! I was diagnosed in August and I have been gluten free until 2 days ago. My kids asked for cookies at the store. Normally I would make them myself but I said ok to the treat. Well of course the kids wanted one now. I put one in my mouth w/o thinking!! I had to RACE home to go to the bathroom, had back pain and shoulder pain for the remainder of the day. I NEVER thought that it could be from the gluten.

Yes, it is indeed surprising. I'm so grateful to finally finding a possible link between my pain and what I eat. Wow.

Hoping more will post here.

Hi, mistyping and running the wrong tests are not so uncommon.

By teh way, the person with the mistyping on DQ8 also ordered a gene test from Enterolab, since they tell you what gene you have, not just positive or negative. Enterolab found the DQ8 too.

They send their gene tests to the American red Cross.

But Enterolab does not test for the alpha chain, and misses all the 05* alpha chains. DQ7 often has a 05* alpha chain.

That is half a DQ2 celiac gene, and there is an increased risk for celiac.

Kimball tests for the alpha chain, but does not tell you what gene you have other than DQ2 or DQ8.

Dr. Hadjivassiliou found that 20% of his gluten ataxia patients were DQ1.

So, gene tests also have their limit.

If you do a search here, a person with the handle half full had access to the full versions of scientific papers, and posted all the other genes found in celiacs from a paper where they tested over 1000 european celiacs. There wer many with half genes, I think 6%, and 1-2% with other genes than the celiac genes.

Maybe you find it when checking my replies, as I replied in that thread.

They only contribute with about 40% of the risk for celiac.

nora

Wow -- I must admit that I do not have your understanding of tests, etc., but I most certainly understand the rest.

I am being beyond careful and treating myself as if I have Celiac, just to make sure all will be well. Thank you so much for your incredible information, and if you are ever willing to speak personally please email me through this website.

BIG HUG,

Lyn

I too have had "poop" questions, so I'm curious as to what people think about this. Mine float almost all the time and are hard and round too...but I don't know for sure if that means anything.

I'm curious if they told you what genes you do have? I've seen evidence (individuals on this forum and in articles) that those that don't possess DQ2 or DQ8 can sometimes still get celiac. I don't have these genes, and am self-diagnosed gluten intolerant, but my dad has celiac, and my brother and sister are both gluten intolerant (self-diagnosed as well - they just never went to the doctor to find out about it). While I'm the only one that has had gene testing, in my experience, it seems unlikely that we'd have so many intolerant people in our family without some genetic involvement of celiac disease here. Just my experience, for what it's worth. That, and I had low B12 levels prior to going gluten-free, in spite of a healthy diet with vitamin supplementation. That signals malabsorption, celiac disease or not.

My thoughts are - they don't definitely know how to diagnose celiac in all cases. You just have to listen to your body, and regardless of whether you're a celiac or not, you sound like you're on the right track, with a gluten-free diet, and it does sound as though you're healing, so that's great.

Great post, thank you. I believe you are absolutely correct, the medical community (even the more advanced part of the medical community) does not have all the answers. We here are in the forefront of what will eventually be a much greater understanding of Celiac.

It is so sad that without there being a drug so the drug companies can profit, there is no marketing and a horrible lack of info.

My gene test came back negative, but I not not yet have a copy of the lab results. I go to the doctor in November but will try to get copies faxed to me sooner.

Wow -- your case is particularly interesting, with all the family history you have.

This sure isn't easy.

I am beginning to realize that I should keep a notebook or spreadsheet of my dining experiences. I was thinking of going back to Golden Corral this weekend, and I almost forgot the manager's name.

If I keep everything noted, I can remember the names as well as tidbits about the experience so I can give additional thanks.

If I don't write it down, I'll forget it. I guess I still have brain fog!

Thanks for starting this topic!

Nasalady,

You're welcome! And thank you (and everyone here) for posting. This is going to be a fun thread.

PS: I see you will have your one year gluten-free anniversary next month. Congratulations on getting through the first year!

This is all so frustrating.

Googles,

Have you ever read about the stages of grief? All that stuff about denial, anger, etc., and you have to experience them all before you get better?

Well, from what I've learned so far, dealing with gluten-intolorance can be very similar, emotionally. Getting frustrated and mad as hell is a step in the right direction, so as odd as it may sound, the feelings you're having are going to help you to get to the other side of this!

SO, GO KICK A LOAF OF BREAD!

And then come back here, again and again, because folks around you might not always understand what you're going through, but we do.

What are your gene results?

There are many people here who are celiac or undiagnosed , and who do not have the DQ2 or DQ8 genes.

Some are mistyped.

One DQ8 was mistyped as negative, and then confronted the lab with teh fact that her son was DQ8 and celiac and that she was diagnosed years ago with viopsy and a highly positive blood tests, and they sent hte sample to another lab and it was positive for DQ8. the tests for DQ8 are not that sensitive.

The biopsy can just sample the wrong area, and miss celiac.

Have you by any chance taken any steroids recently? Those are famous for causing wrong negative biopsies.

Sometimes when your read the actual biopsy result, it says you are celiac but they did not spell it out and the doctor thiks that means it is negaive. Blunted villi is celiac, but the doctor miss that because the report did not spell out celiac. Increased Intraepitelial lymphocytes is celiac, but the doctor may miss that too. Did you see the actual report?

If you are DQ1, you can be extremely sensitive to gluten, and more sensitive than the DQ2's.

nora

Nora,

That is very interesting.

I haven't yet read the reports directly . . . but I will. I spoke with a nurse who gave me the results - she said my antibodies are high but the gene test (as well as the biopsy) came back negative.

I am going to the Celiac Center at the University of Chicago -- many, if not most, of the blood tests are sent to Mayo -- I would pray that they are reading them correctly since they specialize in Celiac, but it is DEFINITELY worth checking. Thank you!

No steriods so that's not a problem here, thank goodness . . . although I felt as though I were on the darn things when I had to do the gluten challenge -- increased hunger, bloating, weight gain. Augh. <Laughing>

It is frightening how easily a misdiagnosis can occur -- I hope many others read your post so they, too, take extra precaution to make sure they're being given the right information.

Case in point: A different doctor at a different clinic blood tested for Celiac last year, but -- as best I understand it -- the doctor did not properly check my antibodies and overlooked the gluten sensitivity. I was HORRIBLY sensitive to gluten, but because the initial Celiac blood work came back negative, he told me I was fine. It was quite a struggle until now because I kept becoming increasingly symptomatic.

I'm still healing -- only gluten free for a few weeks now with a couple set backs.

Last week I was glutened and the neurological twinges in my feet and ankles were strong. It's weird, in addition to the tops of my feet hurting and ankles swelling, I'll get a kink that comes and goes -- when it is present, it feels as though I have a light sprain in my ankle, and it can stop me cold. Sometimes it lasts for days, other times it comes and goes over the course of hours. During my gluten challenge, it became stronger over time.

Yep. And head, shoulder, joint, muscle, eye, tmj, and every other conceivable place pain. Evil Evil gluten.

My hip pain is particularly bad at night. So much so, that when I have a flair-up, I have to get out of bed extra early just to deal with the pain.

In the past the pain would come and go. In retrospect, I see that my worse problems might have been when eating gluten without knowing I was gluten-intolorant.

I did a many-week gluten challenge and oh my gosh, the symptoms!

I have only been gluten free for a few weeks, and I am praying that the hip and lower back pain will once again get better.

I also pray I'll be able to lose the 15 pounds that came on during the challenge. The first couple days I dropped some weight but have been stuck since. I think it is taking my body more time to adjust than I thought it would. The extra weight cannot help my pain, that's for sure. So maybe it is a combination of both.

So glad to be gluten-free again!

Here is the thread about being assertive with restaurants: https://www.celiac.com/gluten-free/index.php?showtopic=62129

This is a thread about being assertive and asking for what you need. This is where you can post your experiences when dealing with dining establishments OR when eating at work, parties, friends homes, etc.

If there is already a thread just like this, please let me know.

The purpose here is for all of us to work together to help each other learn to be more assertive in asking for what we need.

I posted this experience in another thread and will post it here to get things started. It was in response to a forum member complaining about the lack of assistance some restaurants will give:

I find it amazing how helpful some restaurants can be if you call and speak with a manger first -- not the chef but the owner or top manager (the person who would have to deal with libility).

It is interesting that some restaurants I would never have assumed would be helpful have indeed been very helpful.

A couple weeks ago, my husband and I went to a moderately-priced buffet (Golden Corral). I called and spoke with the head manager who was so incredibly kind! He listened to me, REALLY listened, and he promised me he would prepare a freshly butchered slice of sirloin steak on a dedicated grill, with no marinade or spices added whatsoever.

He also promised to prepare any fruits or veggies fresh if needed, in case I was worried about buffet cross-contamination.

And this was in a restaurant where they didn't even know what gluten-intolorance was until I spoke with them.

My meal was fine -- delicious and free of symptoms afterwards.

Other managers at other restaurants have been equally wonderful in telling me that, while they cannot guarantee that any food won't be cross-contaminated, I am welcome to bring my own food. This allows me to attend dining parties or club meetings with no problem, and with no burden on those booking the restaurant.

I guess the bottom line is to keep calling, keep trying. If enough restaurants get enough calls, they'll start to listen.

I'm very new to having to be gluten-assertive, although I've been very weight-loss assertive in the past, so I guess I have a lot of practice.

I've found that if you expect people to care, most often they will.

Here is one of my favorite ways to introduce the topic when I call a restaurant:

First, I always ask to speak to the head manager. I always tell the person who answers the phone exactly why I am calling -- this is important. I say that I am coming into dine -- and looking forward to it -- but I have serious dietary restrictions and need to speak to the head person in charge.

If you do not tell them why you are calling, the staff often assumes you're calling to complain about something, and they put you through to an assistant manager instead. Health concerns get you to the top very quickly, and you won't be put on hold a gazillion times!

Then, in my most friendly voice (smile as you talk, people WILL hear it), I say, "I have some extremely serious dietary restrictions, and I'm looking for a restaurant manager who's willing to be my hero (alternately I might say "who's willing to help make my life easier) -- I get very sick if I eat gluten . . . and I would like to dine in your restaurant tonight, might you have time to help me sort things out?"

Always get the manager's name so when you go in you can tell the wait staff that you talked to him/her.

Oh my gosh, this has worked so well that I almost feel like I'm best friends with managment by the time I am done! People are wonderful if you just give them half a chance.

What works for you?