Gluten free the Westerdam is not!!

[vbmom87]

I wanted to let some of you know that have been following this thread, I DID GET A RESPONSE FROM HOLLAND AMERICA!! My letter has been send to the Office of the President for review.

 

After some review, they have assigned me a case number and have told me they will respond in a few weeks from the Office of the President.

 

So, time will tell, but maybe they will educate some of the servers!! :)

 

Thanks for all for your consideration!!

 

Mardi :)

 

Thank you so much for letting us know about your response from HAL. We will look forward to hearing the final outcome.

[AWorldCruise4Me]

Michelle~

 

Thank you so much for your responses!

 

Where do you purchase Gluten Ease? I am definitely going to add it to my tools for fighting my Celiac Disease!!

 

Where do you purchase it from? I have found it on line, but wanted to know if you have been able to find it anywhere else, so I don't have to purchase on line~

 

THANKS again,

Mardi

 

Hi Mardi,

 

So glad you got a response from Holland America. I get GlutenEase at my local health foods store called Vitamin Cottage. Our local Sprouts, Sunflower Market and Whole Foods also carry it I believe. I'm not sure about King Sooper (Kroger). They have a good gluten free product selection but they are generally more expensive than Vitamin Cottage so I haven't looked for it.

 

I don't know if you have these stores in your area.

 

Cheers!

Michelle

[kanitter]

Is that standard on all the cruiselines? I mean, to some degree I can understand having to control portions and costs, but seriously? "our records indicate you had GF pancakes for breakfast, and a GF sandwich, AND a GF pizza as a snack, AND extra GF dessert yesterday. You've hit your "21" so here's your $2 bun for dinner?"

 

Do all the midmarket lines do this, the limited # permitted, then charge for additional? Again, as I say, I can see wanting to limit opportunities for abuse, but still ....

 

No, this is not standard. At least not on NCL. I'm not a "cheerleader" I don't work for them. In fact I've only had 1 cruise with them but I was highly impressed with how they treated my dd. She has celiac. I let them know when I made our reservations, they sent me a sheet to fill out with food items circled that she might like. Breads, pastas, cereals, waffles, etc. We also spoke with the maitre d' when we boarded. He told us there would be no problem with her getting her food choices and just let the server know before we left each time to bring her the next days menu so she could make her choices. At first she was just picking out what she thought would be gf from the regular menu. The maitr d' finally told her, "no, no. You tell us what you want. We will make it gf for you. If it's something we can't make gf I will let you know. So she had pretty much the same choices for meals as we did. They also had pizza late at night for room delivery. Gf toast in the mornings with coffee with room service. Things like that. Now that's what I call taking care of your passengers!:D

And there was no limit, and no extra charge. Oh, and I can't forget, she loved their flourless molten chocolate cake!;)

[NitaBcruising]

Hi Mardi,

 

I take GlutenEase at the start of any potentially suspect meal. I addition I take the Digest Gold product at the same time. I usually skip it when home or at a restaurant that I've had tons of good experiences with.

 

When I was first diagnosed I found I got sick 4 out of 5 times when eating out. Granted I didn't know how to order and hadn't yet widdled my list of safe places down so that was part of it. However, it was so discouraging. I became like a hermit and only ate my own food, carrying a cooler in the car etc. When GlutenEase came out I read the reviews and decided to try it. The instructions said to take it with Digest Gold for best results so that it what I did. I then started going out to eat again. 10 out of 10 times I was safe! I almost never got glutened any more. In fact I thought maybe somehow I had gotten better. But then I stopped taking it and wham, got glutened so went right back on.

 

The best thing to do is to take it at the beginning of your meal with your first couple of bites but I find I can still take it afterwards and get rid of the symptoms. Sometimes when I try a new product at home or forget to take it at a restaurant and get glutened (which for me is 20 min. after I eat I get diarrhea) I can take one or two doses and it stops. If I don't then 10 min. later I have diarrhea again and/or a stomach pain. Also I feel like my whole body is poisoned.

 

From what I've read it isn't meant to allow you to eat gluten but it does seem to do a marvelous job keeping me from experiencing episodes of cross contamination. Sometimes if it is a bad glutening I take two after the fact. Usually it eliminates the symptoms very quickly. Once I ran out of Digest Gold and found GlutenEase worked on its own but I still take them together as I don't really want to mess with success.

 

Cheers!

Michelle

 

I have been following this thread, having Celiac. I haven't heard of GlutenEase. But, you say it relieves your symptoms,if you get cross contamination. However, it doesn't prevent damage to your small intentine, right? Or, are you just glad to have it not make you sick?

[NitaBcruising]

I wanted to let some of you know that have been following this thread, I DID GET A RESPONSE FROM HOLLAND AMERICA!! My letter has been send to the Office of the President for review.

 

After some review, they have assigned me a case number and have told me they will respond in a few weeks from the Office of the President.

 

So, time will tell, but maybe they will educate some of the servers!! :)

 

Thanks for all for your consideration!!

 

Mardi :)

 

Glad to hear you got a reply. Good luck! Sounds like they need some educating! :)

 

I am so surprised about a lot of this. I have cruised about 18 times, since my Celiac diagnosis. I've always said I needed GF, when filling out the online form. But, I have never been offered a list of foods I'd like for ANY sailing! I have always just had meat, potatoes, salads, things off the regular menu, that they could say was GF, like without sauces. They will bring me bread. And ONE time, I was offered GF pasta, on Italian night. I have never asked for pizza, buns, desserts, absolutely nothing special made GF. Wow, it looks like I can have more choices in the future!

 

Thanks!!!! :D

[kanitter]

Excuse me for showing my ignorance of a rare disease that doesn't affect me, I just thought it a waste of a pizza, that's all. Lots of people in the world suffer for hunger and that pizza could have been their medicine.

 

Much diabetes is fully or partially regulated through diet, not just insulin injections, and the ship doesn't provide insulin or hypodermic needles. The ships provided sugar-free desserts, but few diabetics will keel over and die if they eat one of these that was accidentally prepared with real sugar. If they offered a lo-carb pizza for diabetics, using the same pizza cutter to regular pizzas wouldn't hurt the lo-carb pizza by any significant means.

 

The reason why I am ignorant is because I still can't understand why people who risk death or at least serious distress in case of the slightest bit of "cross-contamination" would put themselves in the hands of kitchens that normally serve thousands of regular meals a day. If room service is notorious for screwing up orders (such as the ham they put in my cheese-only omelet once, even though I don't eat ham), I can't believe all of you have faith that there won't be similar mistakes with the gluten-free orders.

 

And Michelle: I know you say you can often tell the difference, say if regular instead of rice pasta was used, but if that pizza in question was sliced back in the kitchen, how would you have known whether it was sliced with a clean or a contaminated slicer?

 

 

I'm sorry, I've bitten my tongue until it's just about to fall off. First it was how you seemed to be more concerned about the waste of a pizza than the health of a human. Maybe it wouldn't hurt if you checked up a little on some of the medical problems and how it affects people who still want to cruise. Not trying to be nasty, just saying it wouldn't hurt. And by the way, I'm diabetic. No, it wouldn't kill me if they gave the the dessert with the real sugar instead of the sugar-free, but it will make my sugar levels go high to the point where I would need to take extra insulin. And in the meantime since I ordered a sugar-free dessert that wouldn't be the first thing I might look at when I was trying to figure out why my blood glucose level was so much higher than it should be. And yes, it's a crap shoot for a celiac to go out to eat. One of my dd's favorite restaurants just changed their menus and no longer have a gluten free menu. The new menus are really hard to figure out if the food is safe for her to eat so now instead of being worried about if the food is ok for her we just won't be going there anymore.

[lifeizgr8]

Hi Mardi,

 

So glad you got a response from Holland America. I get GlutenEase at my local health foods store called Vitamin Cottage. Our local Sprouts, Sunflower Market and Whole Foods also carry it I believe. I'm not sure about King Sooper (Kroger). They have a good gluten free product selection but they are generally more expensive than Vitamin Cottage so I haven't looked for it.

 

I don't know if you have these stores in your area.

 

Cheers!

Michelle

 

Thank you so much!! We have a Whole Foods nearby, so I will go there tomorrow!!

 

I really appreciate your help! Anything that can help me NOT have an attack or make them less painful, is very welcomed!!!!!! :D :)

 

Mardi:)

[lifeizgr8]

I'm sorry, I've bitten my tongue until it's just about to fall off. First it was how you seemed to be more concerned about the waste of a pizza than the health of a human. Maybe it wouldn't hurt if you checked up a little on some of the medical problems and how it affects people who still want to cruise. Not trying to be nasty, just saying it wouldn't hurt. And by the way, I'm diabetic. No, it wouldn't kill me if they gave the the dessert with the real sugar instead of the sugar-free, but it will make my sugar levels go high to the point where I would need to take extra insulin. And in the meantime since I ordered a sugar-free dessert that wouldn't be the first thing I might look at when I was trying to figure out why my blood glucose level was so much higher than it should be. And yes, it's a crap shoot for a celiac to go out to eat. One of my dd's favorite restaurants just changed their menus and no longer have a gluten free menu. The new menus are really hard to figure out if the food is safe for her to eat so now instead of being worried about if the food is ok for her we just won't be going there anymore.

 

Thanks Sue!!

 

When I read this I was really surprised! This poster just was not educated, I am guessing~!!! If I would have eaten that Pizza I would have gotten very ill!!

 

I had checked and re-checked with Holland and I was told there would be no problem, so when I experienced so many problems, I thought it was important to let other travelers know, so they could be very watchful of how their food was prepared and be diligent for their safety!!

 

Eating out is hard, but I live in Portland Oregon, and there are many restaurants that have gluten free, and I check with them before we go to see how careful they actually are!

 

This, like anything today, is MY responsibility to watch out for, but when you check and call and do what they ask and you still get very ill, something needs to change!

 

Mardi

[lifeizgr8]

No, this is not standard. At least not on NCL. I'm not a "cheerleader" I don't work for them. In fact I've only had 1 cruise with them but I was highly impressed with how they treated my dd. She has celiac. I let them know when I made our reservations, they sent me a sheet to fill out with food items circled that she might like. Breads, pastas, cereals, waffles, etc. We also spoke with the maitre d' when we boarded. He told us there would be no problem with her getting her food choices and just let the server know before we left each time to bring her the next days menu so she could make her choices. At first she was just picking out what she thought would be gf from the regular menu. The maitr d' finally told her, "no, no. You tell us what you want. We will make it gf for you. If it's something we can't make gf I will let you know. So she had pretty much the same choices for meals as we did. They also had pizza late at night for room delivery. Gf toast in the mornings with coffee with room service. Things like that. Now that's what I call taking care of your passengers!:D

And there was no limit, and no extra charge. Oh, and I can't forget, she loved their flourless molten chocolate cake!;)

 

NOW THAT WAS A GREAT EXPERIENCE!!

 

I was not so lucky this time! I had complications for a week when I got home, so that made me post on CC!

 

In the Pinnacle I had the most fabulous desserts too, but I had to pay for them! At least I didn't get sick!!

 

I really like the idea that they tried to fix your DD all the same foods as you were eating, but they were GF! Now that was SERVICE!! I sure hope I have that kind of luck on the TA we are taking in November on Celebrity!!

 

Here's to good service!!

mardi

[kanitter]

Thanks Sue!!

 

When I read this I was really surprised! This poster just was not educated, I am guessing~!!! If I would have eaten that Pizza I would have gotten very ill!!

 

I had checked and re-checked with Holland and I was told there would be no problem, so when I experienced so many problems, I thought it was important to let other travelers know, so they could be very watchful of how their food was prepared and be diligent for their safety!!

 

Eating out is hard, but I live in Portland Oregon, and there are many restaurants that have gluten free, and I check with them before we go to see how careful they actually are!

 

This, like anything today, is MY responsibility to watch out for, but when you check and call and do what they ask and you still get very ill, something needs to change!

 

Mardi

 

I usually don't let idiots bother me, but he really made me see red. I agree that there are more restaurants that are becoming more aware of allergies and that's great. I don't blame you for being upset while on your cruise.

If you can, you should check out NCL. I wrote another post on this board about the treatment of my dd who has celiac. They were great. Hope your next cruise is better.

[dylan63]

For those who are, or who are considering, using Glutenease I found an article just today about it which I would recommend reading.

http://www.latimes.com/health/la-he-skeptic-gluten-supplements-20110926,0,2998711.story

[NitaBcruising]

For those who are, or who are considering, using Glutenease I found an article just today about it which I would recommend reading.

http://www.latimes.com/health/la-he-skeptic-gluten-supplements-20110926,0,2998711.story

 

Thanks for that link. But, either I am being dense, or it still doesn't answer my question. Does it break down gluten to the point of not doing internal damage? Or, does it just break it down so you don't feel ill?

 

For me, cross contamination doesn't make me all that unwell. However, had I pretty bad damage to my duodenum before my diagnosis. After 6 mo. gluten free, it had repaired a LOT! I've been told that even small amounts of gluten will damage those villi, so I try to be very careful, even though I don't feel all that unwell with cross contamination. My oldest DB died of colon cancer, long before my diagnosis, and my gastroenterologist said it was very possible he was undiagnosed Celiac, as it runs in families. No one else in my family yet even suspects they might have it. But, cancer is a real scare for me, so I do try to be very cautious!

 

OP, thanks for bringing up this important subject! At times, there will be a post on the "cruise foodies" thread.

[RuthC]

I'm sorry, I've bitten my tongue until it's just about to fall off. First it was how you seemed to be more concerned about the waste of a pizza than the health of a human. Maybe it wouldn't hurt if you checked up a little on some of the medical problems and how it affects people who still want to cruise. Not trying to be nasty, just saying it wouldn't hurt.

I read the poster as someone who truly did not know about the problem, and was sincerely asking questions in an attempt to be educated somewhat on this condition.

I know I, for one, learned a great deal about the condition, and the range of problems it involves, through the discussion in this thread.

The facts presented in a non-emotional manner shed much more light than heat. They have helped sensitize me to something I had only passing knowledge of, and for that I am grateful.

 

And yes, your reply did come across as "nasty" (your word).

[AWorldCruise4Me]

I have been following this thread, having Celiac. I haven't heard of GlutenEase. But, you say it relieves your symptoms,if you get cross contamination. However, it doesn't prevent damage to your small intentine, right? Or, are you just glad to have it not make you sick?

 

Hi Nita,

 

I honestly have no idea whether it prevents damage or not. However if I have inadvertently been affected by cross contamination it does alleviate the symptoms.

 

I did read the article that was posted above saying Celiacs should stay away from it. I think this is a bit of irresponsible journalism. If you do your best to avoid gluten and get cross contaminated anyways why should you suffer all day just because this product doesn't allow you to eat a full gluten meal? The logic just isn't there. The product is for people like me who get a tiny amount through cross contamination and want to avoid symptoms.

 

If GlutenEase hadn't been developed I would never have had the confidence to go on a world cruise with many long excursion days with no access to a bathroom. With it I did just fine and had no emergencies.

 

Hi Mardi,

You will definitely have a better experience on Celebrity. I did the eastern Med. and transatlantic with them. In the main dining room you could order anything off the menu gluten free and they would make it. There was no limit on gluten free items. The buffet manager was very helpful and their buffet set-up facilitates gluten free eating due to the way it is set up with different areas that are physically isolated from each other. There was one gluten free desert in the desert bar associated with the coffee bar. These were free so worth checking out.

 

However, in the main dining room the gluten free table bread needs to be heated up to taste decent so remind your server if they deliver it cold.

 

Cheers!

Michelle

[Lizzie1213]

I think your statement and review were very fair.

[lifeizgr8]

i think your statement and review were very fair.

 

thanks so very much!! :)

[lifeizgr8]

Hi Nita,

 

I honestly have no idea whether it prevents damage or not. However if I have inadvertently been affected by cross contamination it does alleviate the symptoms.

 

I did read the article that was posted above saying Celiacs should stay away from it. I think this is a bit of irresponsible journalism. If you do your best to avoid gluten and get cross contaminated anyways why should you suffer all day just because this product doesn't allow you to eat a full gluten meal? The logic just isn't there. The product is for people like me who get a tiny amount through cross contamination and want to avoid symptoms.

 

If GlutenEase hadn't been developed I would never have had the confidence to go on a world cruise with many long excursion days with no access to a bathroom. With it I did just fine and had no emergencies.

 

Hi Mardi,

You will definitely have a better experience on Celebrity. I did the eastern Med. and transatlantic with them. In the main dining room you could order anything off the menu gluten free and they would make it. There was no limit on gluten free items. The buffet manager was very helpful and their buffet set-up facilitates gluten free eating due to the way it is set up with different areas that are physically isolated from each other. There was one gluten free desert in the desert bar associated with the coffee bar. These were free so worth checking out.

 

However, in the main dining room the gluten free table bread needs to be heated up to taste decent so remind your server if they deliver it cold.

 

Cheers!

Michelle

 

THANKS MICHELE!!

 

I am going to get Gluten-Ease today for the exact reasons you listed! I try to be very careful, even asking for the exact recipes sometimes, and ask where the food is prepared. Even with diligence, I have had terrible experiences. I have fainted more than once, during my "episodes". YIPPIE! During the years I was told by the medical world to, get rid of stress, or I had IBS, or Chrone's or Menopause or one doctor told me it was all in my head!!!! So, now that I have been diagnosed, I try to do anything and everything not to have more damage, besides the obvious, to stay away from the restroom as much as possible!!

 

I really appreciated your kind words and your help, very much!!

 

Mardi :)

[NitaBcruising]

Hi Nita,

 

I honestly have no idea whether it prevents damage or not. However if I have inadvertently been affected by cross contamination it does alleviate the symptoms.

 

I did read the article that was posted above saying Celiacs should stay away from it. I think this is a bit of irresponsible journalism. If you do your best to avoid gluten and get cross contaminated anyways why should you suffer all day just because this product doesn't allow you to eat a full gluten meal? The logic just isn't there. The product is for people like me who get a tiny amount through cross contamination and want to avoid symptoms.

 

If GlutenEase hadn't been developed I would never have had the confidence to go on a world cruise with many long excursion days with no access to a bathroom. With it I did just fine and had no emergencies.

 

Cheers!

Michelle

 

Thanks for your honest answer! And yes, even though we are very careful, sometimes it doesn't work 100%. I will also look into getting GlutenEase. So, beings it may be a newer product, it shows me I should read those emails I get, from Celiac sites, rather than disregard them! :o

[kanitter]

I read the poster as someone who truly did not know about the problem, and was sincerely asking questions in an attempt to be educated somewhat on this condition.

 

I know I, for one, learned a great deal about the condition, and the range of problems it involves, through the discussion in this thread.

The facts presented in a non-emotional manner shed much more light than heat. They have helped sensitize me to something I had only passing knowledge of, and for that I am grateful.

 

And yes, your reply did come across as "nasty" (your word).

 

 

If my statements did sound nasty then I do apologize to the poster that I was talking about. But I still stand behind what I said. I was not upset that the poster didn't know about what can happen to a celiac if they ingest gluten. Not everyone knows what it is and what the side affects can be if gluten is consumed. I was mainly upset that this person was so concerned about the fact that a pizza got thrown away but didn't seem to give a darn that a person's health was in jeopardy. Yes, there are people starving in different places but that doesn't mean that the op should have eaten the pizza anyway. Besides I've tasted gluten free pizza, it's not all that great.

[dylan63]

Just thought I'd drop back into this thread to expand on my link to the article about GlutenEase. This product is relatively new and appears to be only available in US. There does seem to be some confusion on various celiac forums about whether this product whilst alleviating the obvious symptoms, such as pain and diarrhea, associated with celiac disease, may or may not prevent the less obvious symptoms, such as intestinal damage.

 

However, if you have a look at Enzymedica's own website - they're the one's who produce GlutenEase - they specifically state that "Enzymedica GlutenEase™;supports people suffering with gluten or casein intolerance. GlutenEase is not formulated to prevent celiac symptoms." (Their emphasis).

 

Therefore, because GlutenEase does not claim to "prevent celiac symptoms", which would include both obvious and less obvious symptoms, and, because I have celiac disease not a gluten intolerance I would not use this product simply because it has not been formulated for use by people,such as myself, who have medically diagnosed celiac disease, however, if I had gluten intolerance I would certainly give it a try.

 

As a post script, I also don't think this product would be suitable for the very small minority of people who have a gluten allergy which is a somewhat different problem again to celiac disease and gluten intolerance.

 

http://www.enzymedica.com/products/GlutenEase

[RuthC]

I was mainly upset that this person was so concerned about the fact that a pizza got thrown away but didn't seem to give a darn that a person's health was in jeopardy. Yes, there are people starving in different places but that doesn't mean that the op should have eaten the pizza anyway.

That's part of my point, though. To those of us brought up with the idea that you don't waste food the idea of throwing "good" food away is horrifying. It would never occur to us that it wasn't "good" food (because of the possibility of gluten, not the taste).

It's not so much that they "didn't give a darn" as that they didn't know there was something to give a darn about.

 

A slight difference, maybe, but it's not just splitting hairs.

Anyway, this thread has allowed those of us outside the glutten problem group to learn something, even some with the problem have learned, too. And that's great!

[AWorldCruise4Me]

Hi Dylan,

 

I'm the one who reported good results with it. Here is another link to a FAQ on the Enzymatic web site.

 

http://www.enzymedica.com/faq.php#faq43

 

43. Is GlutenEase for Celiac?

 

No. GlutenEase was designed for individuals who have gluten allergy or intolerance. We have found that some individuals who have celiac disease may benefit from the use of GlutenEase along with other digestive enzymes added to their diet if used as a safety net. GlutenEase the product was never intended to “cure” celiac or any other known disease.

 

I think the problem is that when GlutenEase came out some people used it with great success and said that it enabled them to eat gluten. Others said they were still doing damage. As a result some folks on the Celiac boards consider it a 'dangerous' product because it allowed people to eat Gluten. Enzymatic then started wording their information a bit differently to make sure that they weren't accused of advertising a 'cure' for celiac.

 

While the debate rages on, I'm happy to take it along with their Digest Gold product and get rid of the symptoms so I can enjoy my day.

 

Edit: I was just trying to think of what the down side could be to taking it. The only one I could come up with is that I don't always know if I've gotten gluten through cross contamination. But if I'm really curious about a product (and I do this at home) I don't take it when eating something new. Then if I get a reaction I know it isn't a safe product and eliminate it from my safe items.

 

Cheers!

Michelle

[nordski]

Our DD must eat gluten free, so I want to thank all of those who have posted re: their on-board experiences.

 

Since HAL claims it can offer a gluten free diet, I have encouraged her to consider cruising.

 

I'll rethink that advice.

[igraf]

In that case these people should avoid cruising where typically 10,000 meals a day per are prepared in very tight cooking areas. It is unrealistic to expect the GF food to not have so much as 0.1mg (seriously??) of cross contamination.

 

igraf

 

 

 

..For your information, even .1mg of Gluten can elicit a response in Celiac sufferers. Wikipedia probably didn't inform you that Gluten can can cause Hepatiform dermatitis, a painful blistering rash that can last for weeks. It can cause an exfoliation of the villae of the small intestine which can cause malnutrition and significant high incidence of carcinoma of the small bowel. At best ingestion of Gluten will cause diarrhea and flatulance. This disease is not simply an annoyance but a life threatening illness.

[Willsot]

Very informative. I too appreciate learning more about this disease. While I agree that some posters were less-informed, I am sorry that others resort to name-calling in replies. "Haters, idiots, ugly people, Archie Bunker, total ignorance, ignorant posts" seem a bit harsh.