Eating At Restaurants

[LL04]

I just want to know if there are any other celiac's in this world who don't eat out ANYWHERE no matter what? I have such extreme reactions that I literally believe that I am going to die everytime it happens so I will NEVER EVER AGAIN eat anywhere other than my home and a home of a close friend who is probably more careful than me when it comes to preparing food. I have read posts of some celiac's telling others, they should "take chances" and "live a little". Even if I didn't have such severe reactions, I would NEVER eat out knowing that the restaurant business offers the lowest wages of almost any job available. I would never leave my health in the hands of a bunch of minimum wage earning 19 year olds. Do you really think that in a busy restaurant on a Friday night where the staff is having trouble getting a steak cooked properly, that your order will not somehow be contaminated between the 4 or 5 staff that have handled it. Do you really think you are eating "gluten free"???? I like to call it "no gluten intentionally added". How many of you who don't have noticable reactions have unknowingly, time after time, ingested gluten while eating out? Lots I bet. Aren't any of you scared of cancer at least? I will not risk my life for the sake of eating out.

By the way, my husband was a general manager of a restaurant for many years before becoming a sales manager for the largest food wholesale supplier in the world (next to McDonald's that is) and he has seen it all. He is not a celiac and says that given what he has seen and experienced throughout his many years in this industry, he says he would NEVER recommend that any celiac anywhere go out to eat at any restaurant if they were in least bit concerned about ingesting gluten. The exception being of course, gluten free dedicated cafe's or restaurants or those restaurants where you know the owner, management and staff personally.

I just want to know if I'm the only one who feels this way?

[pinkpei77]

i ONLY eat at the local thai resturant and indian resturant and they both know my condition.

i have never once gotten sick and im SUPER sensitive.

but i will never eat at restuarnts out of town and even when places say they can accomidate my needs , i still dont trust it.

all i can think of is the pain and it scares me right off!!!

it used to bother me alot more when i would think "man, im never going to be able to eat out again"

but i have become such a great cook that i dont mind!!

but i defintly miss the convience of resturants and also the "getting together" aspect of it.

ive just had to invest in more dishes and have everyone over!!

[CarlaB]

There are only two places locally I eat as well. Even then, it's not often. This avatar was not taken at a restaurant! It was in front of a furniture store that also sold coffee and ice cream ... I was sitting outside waiting for others to shop when hubby snapped my pic!

[jmengert]

I have not eaten out in a year and a half. I got very sick from a place that had a gluten-free menu, spoke with the staff, was very clear, and I still got sick (and I'm down for about 2 weeks when I'm glutened; I'm a teacher, so I just can't afford to be that ill). I decided that day that it's just not worth it. It's just food; I can cook myself just fine, and in fact, I've learned how to be a pretty good cook through having this illness. It just takes a lot more planning than it used to. I've even gone on vacation across the country, on airplanes, etc., all without eating out. It can be done, and until I find an exclusively gluten-free restaurant, I'm not going to eat out. You're not alone!

[jnclelland]

Okay - but what do you do when you're travelling and staying in a hotel? I don't travel all that often, but I do occasionally. (In fact, I have a business trip coming up in October, and I'm pretty anxious about how I'm going to find food.)

Jeanne

[tarnalberry]

Given that I don't eat out often (approx. once per month), that I choose my restaurants carefully (usually places with gluten free menus - Outback and PF Changs or thai foods, for instance), that I choose my items carefully (items that don't require great stretches to be gluten free - sometimes nothing more than a baked potato), that I don't eat out when it's busy, and that entirely eliminated eating out would have a dramatic impact on my life... Given all that, no, I don't feel that I can never ever ever eat out.

Everything in life is an issue of controlled risks. If I was extremely worried about so many controlled risks, I would be very unlikely to drive, which would greatly limit my job/leisure activities. If I was extremely worried about injuries and pain, I wouldn't ever go hiking over large rocks on tall mountains, which would have deprived me of many an pleasurable and scenic afternoon. If I was extremely worried about getting glutened despite taking significant precaution, then I wouldn't eat out either, which would deprive me of some tasty ideas for recipes at home and some valuable social interaction with my friends and family.

I agree with you that it's a risk, but I disagree that it's one that can't be mitigated or worked around. On the one hand, in the absolute worst cast scenario, assuming that you do get glutened each and every time you eat out, you may still have room in your diet to eat out two or three times a year without actually compromising your health (according to studies). But I don't think the case is that bad at all. You may have to be very careful about where you choose to eat out (and not all restaurants are that bad - a friend owned one and I was often in the back to experience a different story from what I have often seen on here), you may have to eat out at non-convenient times, and you may have a limited selection of where you can eat causing lots of repeats, and you may be stuck with one or two things you can have at some places, and you may have to do a lot of "uncomfortable" talking with the waitstaff and/or manager and/or chef in other places.

Risks can be mitigated in most situations, and eating out is no exception, but you're right that we have to keep in mind that we're only mitigating risks. In fact, if we're not keeping a totally gluten free kitchen, and cooking everything from scratch, or using companies that only produced gluten-free foods on dedicated lines, we're also taking risks there. But again, most of us find that mitigating those risks is sufficient. It's a question of whether or not you can mitigate risks to get them to a low enough level you're comfortable with. For some, the answer will be no. (You don't see me skydiving! ) And, like any other personal decision, that is ok!

[gfp]

This is always a difficult subject.

In one way I think I am just a regualr Joe with somethings I can't eat... in other ways I think I'm a celiac.

Whoah... what... am I defining who I am by a medical condition?

"Hi, my name's steve and I'm a celaic.... Ive been gluten free since ....."

What is this?

When ever I start thinking like this I start asking who's in charge, a couple of errant genes or the other 99.99999999999999999999999999% of my DNA...

At the same time eating out is ALWAYS a risk....

However, what I have found is that although the reaction itself can be more severe after gluten-free you are not so ill for so long. How can I put it.... yes you have D, brain fog but the longer term stuff seems to fix more easily once you have got back to healthy. In other words you don't plunge back allthe way to pre-gluten-free days from a single glutening in overall health.

I think it is very important that newly diagnosed celiacs go 100% gluten-free and take no risks but that's not usually the case. What is more normal is you start off beleiving the Dr's who don't really understand because on the whole they are not celaic themselves. It hasn't really crossed there mind that cornflakes are coated in horedin or a single bread crumb will make you ill etc. etc. because why would they ever think of this????

So its my belief that when we are at our most damaged a little glutening sets us back a long way but as we do a gluten-free diet although we become more sensitive to gluten we don't do as much long term damage as before.... and our body is soon readsorbing nutrients.

So in answer to resto's.... basically I think its a risk and we make our own luck.

The more time we spend educating the resto the better .... but at the end of the day we are taking a chance.

In the end I ask myself, does celiac control me or do I control the celiac?

So I do eat out but I take a lot of time to educate the resto... Yes, I do get caught out but that's life.

Most people seem to get colds and even flu once a year... but they still go to work/school or whereever where they can catch a cold or flu.

I don't get colds or flu (I used to think I did but in retrospect most of the symptoms were gluten induced long explanation).. so I think it balances out.

[RiceGuy]

I NEVER eat at any restaurant. Not only that, but I would not even trust food from my closest friends. This approach I've been taking long before I knew about the effect gluten was having on me. I would just always have some negative reaction when eating something I didn't prepare for myself from scratch. Of course everyone around me thought I was nuts (and most still do). I didn't care, and still don't. It's not fun, but it's even less fun to get sick. Now imagine going to a holiday feast like thanksgiving, with some 20 relatives all pigging out on stuff, and you literally haven't anything to eat. So I don't bother with those gatherings anymore, which brings on more criticism of course.

I had thought the symptoms were due to bacteria or something like that, and though I'm sure that was part of it, I now know of so many other reasons.

[debmidge]

hubby does not eat out - has no confidence that food will be gluten-free even if they say it is.

I guess he has trust issues.

[jkmunchkin]

I know I'm probably in the minority, but I eat out all the time. Eating out is part of life in NY, it's part of our culture. Granted there are certain restaurants I no longer will go to because I think the risk of getting sick is just to high; and on the other end of that spectrum there are now certain restaurants I frequent because of either a gluten free menu, or a relationship or comfort with the staff, that maybe I never went to or barely went to before. In fact DH and I were laughing about this the other night. Friday night, neither of us felt like cooking so we decided to go to Outback. I probably go to Outback atleast once a month now, it's like my all else fails place. Before being diagnosed with celiac I think I'd been to Outback twice in my life.

I'm not saying I don't take a risk eating out, but I am always very nice to the staff and let them know that I am not the crazy anorexic, narotic girl who doesn't want bread. I am allergic (easier term for people to understand than intolerant). I find once I say that they always are willing to help. I have only been glutened once in a restaurant.

Yeah I am taking a risk eating out, and granted that is a risk I can avoid. But yknow what; I'm also taking a risk every time I get in my car. Life can't stop because of this disease. I am extremely careful, and I think that shows in that in the just over a years time that I have been gluten free, I have only been glutened 3 times (edited to add - 2 of the times was at my parents house when we were all new to this). I am not asymptomatic and definately know if I react.

It is certainly a personal choice for each person as to whether or not they want to eat out, but as someone mentioned; what about traveling? Yes this is a serious thing, and yes it takes a lot of care and maintenance; but I am not willing to compromise my quality of life and limit my experiences because of it. I have changed and adapted my lifestyle for it, but life can not stop. Atleast not for me.

[RiceGuy]

...but I am not willing to compromise my quality of life and limit my experiences because of it. I have changed and adapted my lifestyle for it, but life can not stop. Atleast not for me.

Yeah I agree. I think that's a good attitude to take...when you have the option that is. I suppose if one slip-up didn't put me in recovery for a month. If the risk was just a day or so of feeling not-so-well. Then I'd enjoy eating out and taking that risk. I truly wish I could do that. Maybe if gluten was my only intolerance I'd have a far different approach. But just imagine what you'd do if 50% or 70% of the times you ate something prepared by someone else you got really really sick for days or weeks? I bet you'd think twice about repeating that!

[ArtGirl]

I haven't eaten at a restaurant for several weeks. Not just because of being gluten-free, but now that I have to be egg/milk/corn free, it makes eating restaurant food seem like just too great a challenge. Maybe I'll risk it some other time, but not right now.

My hubby and I are planning a 4-day trip and I'm a little nervous. But, I'm going to take a lot of my own food with me and we'll try to get a room with a kitchenette with it - I'm also thinking of purchasing an elecric skillet to use if we can't get the kitchenette. IF I decide to eat out, it'll be the last day of the trip - I'm not willing to risk ruining the weekend (my symptoms are delayed at least 15 hours so I will be able to get home in time!).

I understand those with severe and long-duration reactions to be MUCH less willing to risk a restaurant meal. If I were one of those, I wouldn't eat out, either. BUT, I'd still go out to a restaurant with others for the social aspect of the evening - bring my own food or eat before I went. Which is what I do now, actually. I don't deny my husband an evening out at a restaurant and I enjoy going with him (it is actually less work for me because I can just take along some defrosted previously prepared food and not have to cook, which is why I like going out to eat in the first place).

Life is full of compromises. My goal is to make the best of what I have and what I CAN do.

[Nancym]

jmengert said my new philosophy, "Its just food". If I got sick for days on end, I'd definintely not even try to eat out.

[queenofhearts]

I have to admit, eating out gives me the willies... but I'm fairly new to this game & still not really sure when I'm being glutened, so I'm taking the why-chance-it approach for the moment. That said, I'm eating out tonight! I'm going to an authentic Japanese place & will have the simplest forms of sushi, with my own soy of course. So far that seems to be my safest refuge. Even my beloved Vietnamese place uses Hoisin in their marinades, boo hoo! I'm hoping to be able to work something out with them, though, since I've been a loyal customer for 15 years.

When I go out with friends, I usually eat something beforehand, & then just have a beverage while they eat. It makes them a little uncomfortable, but I assure them that I am not "tempted" by their eating. I have no desire to poison myself! When I go to their houses, I bring my own food most of the time, or eat something whole & simple like olives or fruit.

Leah

[floridanative]

I'm with jkmunchkin with the exception that Outback is a place I won't eat out at since mine is terribly run and doen't even have current gluten-free menus...........go figure. We eat out once a week usually, sometimes twice. We use to eat four meals per week including take out. So we've cut our eating out by 50%. I sort of work for vacation and entertainment money and don't have kids. So as hard as it was to learn how to eat out, I did the work and am not anxious when eating out all. I'd be much more concerned if friends tried to feed me. I too found out that the word allergy works much better than intolerance, it's a lie which I feel bad about but I'd rather tell that kind of lie and stay healthy.

Life is so short and I'm not willing to give up one of my favorite hobbies of travel because I'm gluten free now. That said, I think the more you pay for your meal, the better off you are eating out gluten free. That at least has been my experience. I have some luck for cheaper places too, mostly local places, not chains where they don't know what's in the food that comes in a plastic pouch. However in London, they have a couple of really cheap chains and they offer safe gluten-free items like salads with hummus and gluten-free dressings, and soups - well it's like gluten-free heaven and $8 for lunch. You can't beat that with a stick! Maybe one day it will be like that here, maybe not. I tend to stay hopeful as miracles happen every day.

I'd never tell anyone they should eat out because I do it and no one should be telling others they shouldn't eat out because they don't. It's a matter of personal choice and if we can't have that in America then why live here? I figure if Kim Khoeller (with three allgergens who is highly reactive when glutened) eats out all over the world safely, then I can too. Sure it's harder in the US, but worth the effort to enjoy life!

[Nadtorious]

I haven't eaten out in 3 years. I've taken my own food into restaurants and enjoyed eating with friends and family, but I won't risk it. I've worked in a restaurant that had a "gluten free" menu (before I was diagnosed) and I know none of the people who prepared the food took it seriously. I'm too sensitive, and will be sick for days if I get any kind of contamination

Nadia

[key]

I was going to post this very question recently, but didn't. I started getting better gluten free almost right away, then a few weeks later, I started feeling bad again. Not as bad, but bad! This went on for over a year. Couldn't figure out what the heck was going on. Finally I just said, I would not eat out anymore! I finally started feeling better and getting back to normal. Tried eating out at Chipotle's and was sick again. Tried again, made me sick again. I think 90% of the time I am getting gluttened when out to eat.

I am finally feeling better. So I have to agree that sometimes some people must be extremely sensitive or something, because I can't eat out at even the "safe" restaurants. I have three little kids, homeschool, etc. and I have to feel well for my family. I was sick for 3-4 days everytime I ate out. For me, it was diarhea the first day, then C for the next three days. Along with fatigue, mild depression, stomach cramps, bloating, etc.

I wish someone would have told me how risky eating out was. I saw everyone on here doing it and feeling fine, so I though there must be something else causing me to get sick. I think if you are eating out three times a week, you are definitely getting glutened, but that is my opinion.

Glad you posted this and I am not alone! I thought I was the only freak out there! I have resorted to cooking my own food and eating very little processed food.

Monica

[kbtoyssni]

I eat out all the time. I'm young and my friends are always going out to eat so unless I want to be a hermit, I go to restaurants. My friends are very accomodating, though, and we often pick places that will have food options for me. Sometimes I will bring my own food, though, especially if it's an informal restaurant. I also invite people over for dinner a lot instead of going out to eat with them.

I'm lucky that I don't get *too* sick from gluten anymore. If I was someone who got really ill for a long period of time, I might think differently. But I'm willing to risk it. The worst that happens is that I do get sick and I spend a week not feeling the greatest. There are so many risky things in life, and I'm not willing to stay in and not do the things I want to do just because I'm scared of contamination. It's my life and after being sick for so long, I want to live it to the fullest.

[elonwy]

I eat out alot. Not as much as I used to, but still quite a bit. I have weeks of work where I'm on call 24 hours for 7 days straight, and I have neither the time or energy to cook, or even be home sometimes.

That being said, I'm really really picky about where I eat out. I eat alot of sushi, and have several sushi restaurants I'm a regular at where they know me and my issues. I don't do fast food ( except In-N-Out) and I don't do lower end chains (Denny's etc). I have dining cards with me at all times, and if I don't get a good response from a restaurant, I pull a Think Thin bar out of my purse and order a glass of water. I go to PF Changs quite a bit. The nearest Outback is about 30 minutes from where I usually am, so I haven't gotten there yet. There are alot of my favorite restaurants that I never go to anymore, most of them italian. I'm sensitive, and sometimes I get sick, but I refuse to not go out because of this disease. I tend to eat dinner earlier, before dinner rush if I can, I like to hit them not long after the shift change, the waiters are all fresh and bright eyed which helps, and the kitchen isn't in such a rush. And you don't have to wait as long for a table

There are restaurants I trust more than friends houses though. I have two friends who I know pay attention and I trust, and everyone else I'll bring my own food or whatever.

Its definitly a personal choice.

Elonwy

[jmengert]

As others have said, even though I don't eat out, I will go out to eat with my boyfriend and friends. I either eat beforehand or bring food with me. I don't think anything of it anymore.

When I travel (which I've done without ever eating out--Las Vegas, Boston, the beach, etc.), I get a room with a fridge and a microwave, and I eat about the same things I eat at home. I just prebake stuff and pack it in a suitcase, and off I go! This is coming from a girl who ate out 4-5 times a week, so I've had to retrain myself a lot, but it's doable, and to me, eating out isn't worth the risk at this point in my life. But, I understand it's completely a personal decision.

[LL04]

I want to thank you all for your replies. I can see there is a definite trend here-those who don't have a huge reaction or get very ill will risk eating out and those of us that are sensitive and get very ill, won't.

I'm just really relieved to find out that there are more celiac's like myself who don't. After I was first diagnosed and I was trying to find out everything I could about celiac disease I came to this site and read all the posts about all of the restaurants I could eat at and all of the mainstream food I could buy that was "gluten free". I was relieved to find out it wasn't going to be as bad as I thought...UNTIL it got worse. Before being diagnosed with celiac disease I went from a healthy-for-me 128 lbs to 98lbs in 1 month. I left the hospital in March/05 at 98lbs and now a year and a half later I manage to tip the scales at a whopping 105lbs. I contribute most of my continued illness to the fact that I bought many of these mainstream items and ate at one of these restaurants on occasion not realizing all the while that I continued to contaminate myself over and over again. I was so sick most of the time I didn't know what was causing it...that is until I stopped buying items that were not from dedicated gluten-free companies and making everything else I ate from scratch.

That restaurant I used to eat at...well to make my point here I will let you know that I was there with my kids the other day (no, I haven't stopped GOING to restaurants, I just don't eat at any of them) and I happened to be looking into the prep area of the kitchen. I saw an employee open a bag of powdered cheese sauce and proceed to dump it into a large measuring cup. She shook the bag vigourously and the cheese powder went EVERYWHERE including onto the hand cutter that cuts whole potatoes into fries which was on the counter DIRECTLY next to where she had the cup. She then added some water to the powder and mixed it together promptly spilling the mixture all over the counter and onto the potato press AGAIN. After finishing with the mixture she set it aside and immediately began to press potatoes all without ever having wiped the counter or the machine. The REAL KICKER here is that this restaurant states that it's french fries are "gluten free". Yeah, right.

I guess what I would like to see "seasoned" celiac's tell newbies like I was when I first came here a year and a half ago, is "look, you can eat at Outback or PF's and buy items that say they are gluten-free but you really have to know that these places and items could very well be contaminated. If you are just starting out gluten-free then you should stay away from them and you should especially stay away from them if you are very ill. These places and items cannot truly claim to be gluten free given the environment they are prepared in, they could be contaminated at any time". I know it sounds all doom and gloom to those of you who don't get very ill but if I would have read any posting like that on this board, I can tell you, it probably would have saved me ALOT of grief and I probably would have gained a heck of a lot more than 7 pounds in a year and a half! Of course, if more doctors knew what the heck they were doing, I probably wouldn't have went through this either.

Thanks to everyone again, I really appreciate your thoughts and opinions. By the way, our family is off to Disneyland for a week in October. I've got my "food suitcase" ready, my rolling cooler is ready and we've booked a suite with a kitchenette...should be interesting...

[jkmunchkin]

I want to thank you all for your replies. I can see there is a definite trend here-those who don't have a huge reaction or get very ill will risk eating out and those of us that are sensitive and get very ill, won't.

Actually if I get glutened I do get really sick. I just am very clear and upfront with my server during the entire meal to make sure everything is ok. I take a lot of precautions to make sure that I don't get sick when I eat out. I think if you approach it the right way the staff is more than happy to help you.

Based on my blood tests it shows that I am healing and not eating gluten, so I must be doing something right.

Ofcourse, it's a personal choice and if you're not comfortable with it, you certainly shouldn't eat out. But I think there is a safe way to do it, even for those that are sensitive or get very sick.

[penguin]

I had a whole big long post here yesterday that I lost before it posted, so I'll try to recreate it:

At the risk of sounding like a 20-something snob, but a lot of it I think has to do with age. I'm part of a generation that grew up on fast food and eats out ALL THE TIME. It's part of the culture now, that's why the food industry is booming so much right now, and why the boom is expected to continue. Cooking is a novelty for people my age, not the norm. Hell, my 30-something sister can't figure out a meal that's not microwaved. I cook and eat at home most of the time (even before celiac), but I'm one of the only people I know my age that does this. Part of it is the celiac, but most of it is that I like to cook, and I was actually taught how.

My friends would cook dinner for everyone every so often and again, it's novelty. I had one friend try to microwave a saucepan, one overestimate how much baking soda to put into cookies, one didn't have a grain of flour or cornstarch in her apartment but couldn't figure out why her sauce wasn't thickening...the list goes on. Of course, now that we've all graduated and most have gotten married, we're all cooking more, but most still eat out at least 4 times a week.

Generations before mine mostly cooked at home and ate at home except for the occasional treat (NYC is the obvious exception).

At any rate, in this thread, I imagine it doesn't have so much to do with reaction severity (I get pretty sick, too), but more with culture and age.

[tarnalberry]

LL04, I agree with you - it is a risk each and every time you eat out. And it's a risk that is both in our control (how often we eat out) and out of our control (the preparation of the food). And you're right - we should tell newbies about that. But we have to moderate our advice by not making them feel even more isolated from the world at a time when they already feel desparately, depressingly, devastatingly isolated. It's a psychological tightrope, is the thing. It's the right message, the question is how to convey that message without being "all doom and gloom".

[jkmunchkin]

I guess what I would like to see "seasoned" celiac's tell newbies like I was when I first came here a year and a half ago, is "look, you can eat at Outback or PF's and buy items that say they are gluten-free but you really have to know that these places and items could very well be contaminated.

By the way, our family is off to Disneyland for a week in October.

Isn't it kinda common sense that yes while these places offer gluten free menus, you are still taking a risk. I mean when i go to PF Chang's I've never gone in there with the dilusion that they are scrubbing down the whole kitchen for me back there. I realize they are simply making my food with other ingredients, pots, utensils, ect. and hopefully taking a little extra precaution while doing so.

I've seen other message boards where anytime the topic of eating out comes up people post in enormous letters, "EATING OUT IS RISKY.". I think that's ridiculous and is just advertising to live in fear. Yes, obviously we all have a disease that means we are taking a risk when we eat out. But like I said in an earlier post, I'm also taking a risk everytime I get in my car. When I suggest a product at Whole Foods, I don't say, "GETTING IN YOUR CAR TO GO TO THE STORE IS RISKY!" I think the great thing about this board is that so many people have such a great attitude about taking care of themselves, but not being afraid all the time.

Also, I know you've had very bad experiences eating out, and so you're scared. But I wanted to mention, I've read a lot of information and it seems like Disney is one of the most celiac friendly places on earth. If you contact them (call the restaurants you may be interested in going to), I've heard they go above and beyond for people with celiac - bringing in gluten free pasta, pancakes, waffles, ect.. and seem to be extremely knowledgeable and aware of cross contamination.

Maybe give it some thought....