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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Well, That Was Miserable
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23 posts in this topic

I just got back from a trip, and I'm not sure what all I should do about the experience - but I DO know I need to do something, because this was just beyond the pale.

My husband received a "mandatory corporate award" from his company, which boiled down to 2000 employees all stuck on a boat for 5 days being grateful for the company telling them they are spiffy workers. Usual corporate life stuff.

Royal Caribbean was the cruise line. I filled out their little forms online detailing my food allergies and celiac (they say no problem at ALL in handling it). My wonderful husband? The moment we got onto the boat, he hoofed it down to Guest Relations to make sure everything was hunky-dory and was told "No problem, just talk to the chefs at meal time."

Meal time rolls around, the boat has pushed off from the dock, and......

Problem.

BIG problem.

Actually... problem(s) - plural.

Not a d$%med thing on the ship to eat. Not safely. Breakfasts and lunches? Buffet-style. Potatoes - rolled in wheat flour "just to crisp it up... but you can scrape off the outside, right?" and same with the sausages. Fruit... sure. Too bad it's next to the toast - and covered in crumbs. (If you ask for something cut fresh, they smiled... and walked straight back to the buffet you just bypassed and pick up the fruit from the same area.)

Day 2 - A very sweet girl happily announces at the buffet table that of course she knows what celiac is, and how I can't have gluten. NO PROBLEM. She will walk me around the buffet and show me what I can have.

(Now, to be fair - I should explain, I'm also allergic to shellfish, bananas, treenuts & eggs. But all that was on the form, filled out, and told in advance - no problem. Except, as you might be able to guess by now.... problem.)

She pulled me to station after station - talking to her coworkers. No luck at the carvery - they buy everything on the corporate cruises premarinated and seasoned. And crusted. On to the salads... where I nearly got my hand smacked when she saw the croutons in the lettuce and the pasta salad mixing into the olives. "No, no. Will make you sick." I was told. Her shoulders starting to slump, she perked up at the Asian station. "Here. Here no problem, I'm sure. Cornstarch to thicken, no problem!" she chirped. Just about to load up my plate for me... she spoke to the coworker stationed there "Celiac" pointing at me. "Can't have wheat - this is all fine, yes?"

I'm not sure who was closer to crying when he shook his head and said "No! Can't eat THIS!"

As she led me (empty plate in hand) back to my husband and I's table... she told me "They make and sell gluten free pastas and breads - if you want to buy and bring them on board - along with gluten free flours, and other ingredients... we'd be happy to cook it for you!"

Ummm... not sure about all of ya'll, but I don't have the number of an air-delivery grocery service in my cell phone. And if I did, I don't have the $$$ to PAY for that!

Next day? My husband tried for me - he was cheerfully told "Hope she likes salad!" by the chef.

The one attempt at the sit down dinner? Even though I told the maitre de about the celiac and the shellfish - to the table comes a crusted steak... covered in shrimp. When I refused the plate - he turned around, plucked the shrimp OFF the plate, and handed it back to me.

~headdesk~ You Can't DO that! Gluten will make me sick but shellfish? That allergy can KILL someone!

Five blasted days. I had a single yogurt (in a sealed tub) and a small carton of semi-frozen skim milk. Some lettuce leaves, shredded carrots, and pineapple. (All CC'd. Got a lovely rash and sick as a dog - but it was in the 90's, 10+ UV, and HUMID. I had to have something, even if it WAS going to make me sick.) That's it. Total. Private island owned by the ship - they brought the food off the boat so it was all the same deal. The one day we stopped in Key West - it was in a private section and other than bar food - not a grocery store or meal to be found.

I'm sick. I'm tired. And I know Danged well (and if I wasn't trying like... heck to remember I'm on an open and family-friendly website, the language would be a LOT... firmer.) I wasn't the only one. I saw parents trying to find food for little kids with peanut allergies - all got met with a shrug and a "If you can't tell by looking, don't eat it." Folks with shellfish issues trying to figure out what "May contain seafood" meant on a sign.

Royal Caribbean (majesty of the sea, to be exact) rents out their two oldest and crappiest ships to the corporate world. On the public excursions - apparently they rock when dealing with this. On the corporate deals? They are floating... crap. My husband's company is pissed - we kept running into VP's who cheerily asked if we were having a wonderful time, and by day three neither my husband nor I were too into worrying about playing politics - so folks got an earful. To my ever-growing relief, instead of being annoyed WE weren't smiling, they were angry on our behalf. (One health-food junkie was angrier than I was! We had spoken on the bus ride in about different health issues, had talked about how we both had been getting healthier and losing weight, and I had told both he and his wife what a huge and wonderful difference in my life knowing about celiac had made. When I had to admit that the grand caloric amount I had managed that day - after 3 hours of snorkeling in the ocean.... cut short when I blacked out from heat stroke/hunger/cc - was a piece of pineapple and that I had found a candybar in the general store... eeesh. The last time I felt like THAT was when my mom found out in college I was dieting by living on diet Mt Dew and caffeine pills! He was.... not amused.)

I really am not sure what to do. The experience was MISERABLE. I'm sick and worn out - going 5 days without eating anything really, being CC'd, all while traveling... not a great thing health wise. I also have fibro and a slight heart issue (usually, the latter isn't a problem in my day to day life. I have to make sure to keep hydrated, consume enough salt to keep my blood pressure high enough, but beyond that - no real problem. But after this last week? I've blacked out almost SEVEN times! Flying was fun, let me tell you!

If it had just been me, I would likely just chalk it up to "Yeah, that sucked" and forget it - but this is just.... criminal. To claim they understand the issue, to make a BIG thing of how they train their staff... and than this? Acknowledging is NOT the same as Accommodating. KNOWING that celiac exists - and than not doing a danged thing about it to a trapped audience? It's like being told in advance someone is in a wheelchair, telling them no worries, but when they get there saying "Well, yeah. We can SEE you're in a wheelchair. Definitely, that's a wheelchair. Still, the stairs are over there. Have fun."

I think also, the fact that they HAVE trained their staff is a huge sticking point for me. If they didn't know, if they didn't understand... that would be one thing. A miserable thing, but one thing. But knowing - and choosing to willfully ignore it after? If you decide to not bother to check the boat and miss the hole and it sinks - that's bad. But KNOWING there is a huge hole in the boat and sail anyway.... is worse.

I know I need to write to the cruiseline. (I also know it's likely not gonna do jack - my husband's company bought the tickets and will be taking money out of his paycheck to cover mine and the taxes. No refunds forthcoming.) I've spoken to my husband's company and rather doubt they will be using the line again (there were a LOT of problems on EVERY level. Not just little ol' me.) But I feel like I need to do more - the blatant disregard of serious health issues is going to HURT someone... BADLY. Drop a tiny bit of peanut into a small child's food that is allergic... you have moments to get to an epi-pen. This kind of behavior could KILL.

I never thought I would consider myself lucky to work from home and have the ability to take time and recoup and just deal with being sick. Not everyone HAS that ability. I know I'm stuck with another week or two getting my health pulled back - but what would a single parent who worked full time out of the home DO? Just suffer?

This is wrong. So very very very wrong. And I am not sure how to try and make them fix this before someone gets really hurt.

Or worse.

Sorry about the novel - it's been a looong week and I'm still a tad bit pissy! And tired. And sick. And really hoping I've managed to write at least semi-coherently, because my brain is partially melted and I'm honestly not 100% sure I'm making any sense at all.

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I'm so scared to travel because of stories like this. It sounds absolutely miserable. :(

I would call and write Royal Caribbean for a refund. Your husband's company may have bought the tickets, but you are paying through the paycheck deduction. Fighting for your money back will make the point you are trying to make.

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OOOH I am SO sorry that was so awful!! That's my absolute worst fears brought to life. I would start at the top of the cruise line ladder- write a VERY strongly worded letter and detail your experiences. Give them an earful (when you feel up to it- right now recover!!).

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Be sure to send in writing your story to their main office. Remind them that you could have been killed because of their lack of concern. And cc it to the local newspapers. A little PR might wake them up. So sorry you had such a terrible time with the food.

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I'm so glad you gave a heads up on this. I agree, you should have been informed prior to the trip that they could not comply with your wishes. Ignorance on their part regarding celiac disease is no excuse, you asked ahead of time and accepted their word in good faith that they could accomodate your dietary issues.

I know you don't feel like fighting right now, but when you are better you should definitely at least call this to their attention. Sounds like it could save the life of someone with allergies severe enough to kill.

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I'm so sorry to hear of your experience...what a nightmare. They should have forwarned you so you could bring your own food. As you stated, I've been on two cruises on RC since going gluten-free, and they were beyond accomodating. What's up with their corporate trips? Both my sister and I went together on our trips and both times the wait staff is the dining halls would wait for us to enter, signal to all the other staff that the "gluten-free girls" were in and every meal was safe and tasty. I was so impressed. I'm so not impressed by your experience. I feel so bad for you!

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I think companies that expect the employees to bring family to things are extremely intrusive. My hubs company used to try this. I had babies at that time and didn't want to leave them to go to a boring work event. Fortunately, others felt this way and hub has gotten high enough in company to not require it of his employees.

Do you have a friend that is a lawyer? Doesn't matter what kind, not going to really sue at this point. If you can get her to help you with a letter on lawyer letterhead. You need some to the cruise line. Send to every department head you can think of. You also need one to the husbands company. By requiring your hub to bring his family and not able to provide a safe environment, they are negligent. If they had sent you to a country that is known for kidnapping Americans and didn't provide security, they would be liable.

Maybe the company will realize that employees would rather have the money as a bonus. This is probably a big company, should definitely go to Human Resources. Maybe the press if no one responds.

I am so pissed for you. Will run this by hub later. If he has any thoughts, will let you know.

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Wow, total bait and switch! I'm so sorry you had to endure that.

Go to the top. Write to the head honchos. Do it soon while it's all fresh in your mind and make sure to cite specific details. If you have anything in writing from your correspondence before the trip include it. Show them they assured you that you would be safe.

CC' a newspaper or two, a news station or two, food allergy groups such as (FAAN and Celiac.com and heck, ping Elizabeth H on the View.

No one likes a squeaky wheel and in this economy no one wants bad press.

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I am not a person who usually would say this but I would contact a lawyer. You should be compensated not only for the cost of the trip but also for your pain and suffering. What they did was not excusable and should never happen to anyone else.

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My gosh, how awful :( I'm so sorry you had to go through all that--if they had only been honest you could have brought things with you. Their attitude once on the ship was terrible--it's deplorable that you had to go that whole time without any real food.

I hope you feel better soon :)

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Oh, I hear you.

I don't react physically the same way as many of you do when cross contaminated- I get neuro symptoms, a bit of brain fuzz, some queasiness, and my arthritis flares instead. But I just won't do regular types of travel anymore where I am forced to depend on "others" feeding me, without packing gluten free backups, because they will either capture me in an airport with delays and they won't let you carry a lot of different food items past security, or they'll just plunk you down in the venue, consisting of a grocery store desert in a hotel situated miles from anywhere you could pick up gluten free items, and the food available for everyone else is hopelessly gluten heavy. Even though you have filled out the form that says "please specify diet restrictions." :angry::ph34r:<_<

I was so torqued off after the last time I tried it, I said to **** with it, I'll spend $ on other things. Or do self driven travel, where you are not treated like a terrorist criminal, for wanting to have a water bottle with you to wash down all the dry, dry trail mix you are surviving on, until you get back to food choice civilization.

Oddly enough, I did run into a waitress and staff at a well know Las Vegas casino that did totally "get it" ( I don't gamble, but I was food foraging with other people, and they had dinner specials) and when she brought me my plate of really uncontaminated plain stuff, I nearly wept with joy (and boy did they get a good tip.)

You should try cross posting this on different venues besides celiac / gluten free forums.

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Your post may have done more than you realize. I have a background in Web marketing, and these days companies pay more attention to what people say about them online than anything else. They actually track messages that appear online referencing their brand name. That's because a scathing review like yours can seriously impact a company's brand.

Think about how many people are going to see this post in the next few days - hundreds. Many more will see it over years to come. This site comes up in the top results for an internet search, so anytime someone types "Royal Carribean" and "gluten free" into google, it's likely they'll read your post.

No celiac or gluten intolerant person is going to risk taking a cruise with Royal Carribean after reading your message. Considering that at least 1% of Americans have celiac and a bigger percentage are gluten intolerant, that's potentially a big group of people. Royal Carribean has now lost the income from those individuals, and also from their spouses, siblings, and children who would have accompanied them on their cruise. These same people meanwhile will be recommending some other cruise line to their friends and coworkers.

:)

When you feel better, I'd still recommend writing to the company and requesting a refund. What a horrible ordeal!

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I emailed them but the email address on their site did not work. Or does not work for complaints.

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What a simply ghastly and unforgivable experience. You must certainly pursue this because a full refund is in order. I am so sorry you had to suffer through this.

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This site comes up in the top results for an internet search, so anytime someone types "Royal Carribean" and "gluten free" into google, it's likely they'll read your post.

True, that. This site has so many hits daily and so many links, that Google and other engines give it a very high ranking. (BTW, that is why we have the zero-tolerance policy for self-promotion.)

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What a horrific experience for you. And heartbreaking too.

Before dealing with Royal Carib. I would deal with your husband's company because they are the ultimate ones responsible. If the cruise was supposed to be truly allergy-safe, then it is up to the event organizer at hubby's company to call and complain about services not being rendered. I doubt very much that the cruise has actually been paid for in full...especially since most corporations have a 30-90 day invoicing and payment policy. I'm betting that they just put a down payment on the cruise, and are waiting for the invoice to arrive. I'm guessing the event organizer will want to demand an invoice reduction with the cruise company and maybe even a huge refund for endangering their guests. I would ask the organizer then to at least send messages out to the staff and their families that they are truly horrified about the food situation, and that they are working hard to remedy the situation.

This would be a great opportunity for you to talk to the corporate event planner(s) and tell them of your special needs, and get them to put you on their mailing list for all upcoming events to give you a chance to plan things to help yourself. Maybe even get the event organizer's contact info, and then call them up before events you will be attending, just to get the scoop on what's happening.

I sympathize with you completely on your awful experience...as it has happened to me so many times that it has turned me into a sort of walking-nervous-breakdown-about-to-happen whenever I travel.

Hope you are feeling better soon!

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Just wanted to join in and post another post that has 'royal carribean' and 'crappy' in the same post. So that when someone Googles Royal Carribean review, they see that they SUCK!

Reasons not to take a cruise......

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I forgot to say that the employees who had or family members had the allergies, should also send note to Royal Carribean and the company they work for.

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Thanks all. As my head clears (and my stomach settles - soon... I really really hope soon) I'll be taking all the advice and suggestions and putting them into effect.

My husband has already spoken to several folks at HR and they are moving things up the ladder on their end - I just need to tackle Royal Caribbean on my side next.

I think one of the hardest things to deal with on the ship was the "Eh, sucks to be you" attitude given by the staff higher up the chain. I have NO complaints about the cabin crews (the wonderful gentleman who cleaned the room was amazing for example. The little girl who tried to help me? She was as devastated as I was to send me back to my table without a meal.) but guest services, the maitre de, those higher up the chain of command where just TERRIBLE. Rude, snippy, and generally shrugged off any questions or requests. Telling me to just ask the kitchen crew to 'figure something out' doesn't work if you DON'T BUY THE GROCERIES BEFORE YOU LEAVE SHORE. Just WHAT the hard working crew was supposed to manage to find when they didn't bother to stock the stores like they do on non-corporate sail out was beyond me.

There came a point, round about the 4th day where honestly, if I had been given the options of A- a hearty meal, B- $5,000 in cash, or C- popping the head of guest services in the nose without worrying about being arrested.... it would be a hard call to make.

But I'd likely end up hungry, still broke, and soaking a sore hand!

It's also a little heartbreaking to have our one and only trip this summer be so royally screwed. I was seriously ill all winter and the plans my husband and I had made for this summer really was what got me through. We didn't plan for this trip, and while it is great for his future career.... it was a hardship to make it work. Both financial and time-wise. Essentially - all our plans for the summer got scrapped for this little piece of floating hell. That makes it a doubly bitter pill to swallow.

I'm also more than a little peeved to have made it for MONTHS without problems with the celiac - happily trit-trotting along (even found a few local restaurants to go to with friends, had company over who loved the gluten free meals I made, etc) but now I'm getting the joys of being sick, even almost a week out from the trip! It's like I can't SHAKE the dratted ship!

If I'm going to be THIS ill - I can't help the rather childish thought in the back of my addled brain that thinks that if I have to be sick, it should have been for something WORTH it. Like, a GOOD pizza, a slice of my mom's lasagna, or a thick slab of my dad's homemade bread. But NooooOooOo. This is from CC'd watery lettuce and dried out carrot shavings!

Humph. :P

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Just talked with hub. He's an HR exec. Doesn't think you have a real legal issue with the company. Its just a sj&&& y practice that is falling out of favor with most companies. Most people prefer cash.

However, he thinks you and the other ones with food issues may have an Americans with Disabilities Act case against the The Royal American Cruise Lines. Might mention that to HR. Also, put that in your letters to the cruise line, newspaper, etc. He said that by you filling out the allergy form and them accepting it, they have guaranteed some food. This does not mean if they have regular pasta they must make you gluten-free pasta. They still should offer rice and the marinara and cheese (as an example). Told him you weren't unreasonable. Good luck. Hope hubs company works with you. My hubs other thought was, "why do any of you want to work for this company that compensates you by costing you money and not caring about people's health? "

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kareng's hub :wub: :wub: :wub: :wub:

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kareng's hub :wub: :wub: :wub: :wub:

Yea. I kinda like him, too.

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Hi,

Try contacting someone in the media relations department at the cruise company. In my experience, the media/PR people are the ones who want this type of complaint handled properly. Send them an e-mail with this subject line: You have a customer service disaster on your hands. Contact me ASAP.

That ought to get their attention.

Best of luck with this.

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