Is It Really Best To Just Avoid Restaurants?

[jasonD2]

Is eating out too much of a risk? How do you guys do it? You can nag the waiter to death, hand out allergy cards but it seems like gluten will still somehow wind up in your food.

I still dont know how obsessive & strict I need to be and am hoping someone can shed some light.

Also is there an actual cutoff in terms of how much gluten is needed to trigger a reaction? in other words will lower PPM or PPT quantities still cause damage for most celiacs? if thats the case there really is no choice but to eat at home and live in a box for the rest of your life

[mushroom]

  jasonD2 said:

Is eating out too much of a risk? How do you guys do it? You can nag the waiter to death, hand out allergy cards but it seems like gluten will still somehow wind up in your food.

I still dont know how obsessive & strict I need to be and am hoping someone can shed some light.

Also is there an actual cutoff in terms of how much gluten is needed to trigger a reaction? in other words will lower PPM or PPT quantities still cause damage for most celiacs? if thats the case there really is no choice but to eat at home and live in a box for the rest of your life

Jason, I am not one who eats out a lot, but all the times I have, I have never been glutened, and most of these occasions were not at restaurants that had special gluten free menus. I am always very careful, and I have found the wait staff very considerate (only once did I end up with a salad with croutons on it). Of course, I would not consider myself to be one of the extremely sensitive types either; e.g., I eat foods that are "processed on the same lines as". So no, I do not feel I have to live in a box although I do eat mostly at home because I enjoy what we cook more than what I can get out :P

[sixtytwo]

I have a gluten intolerance and eat completely gluten-free. I eat out all the time. I know what I can eat at most restaurants and when I go to a strange one the safest thing is either baked fish or a steak on the char-grill with a baked potato and salad minus croutons. I get along just fine. One of my favorite restaurants is Noodles, they gluten-free rice noodles and I had grilled chicken, broccoli and fresh tomatoes. It is awesome. I like Applebees too, I get the chicken salad with grilled chicken and no Chinese noodles, I wing it on the dressing, it looks like it is thickened with cornstarch. They also have a nice salmon/minus the sauce with a rice pilaf and veggies, completely gluten-free. Go on the internet and see if the place you want to go cooks gluten-free or call or stop in ahead of your meal and talk to the manager, places are becoming very aware of gluten and are being pretty good about it. The local restaurants near where I live all have something I can eat, it gets a bit monotmos at times, but I won't stay home and not live a good life. Also look at your visit to a restaurant as a learning experience for you and perhaps for them too. You can educate the staff so that the next time they come upon someone with a gluten problem, they will know what it is.

Barbara

[tarnalberry]

Completely a personal choice. And, at the least, I would say that you absolutely do not have to avoid going into a restaurant, though you may want to avoid eating at them, if that is your decision. (It is completely possible to get comfortable with the idea of going to a meal to socialize, and not to eat (I'll eat before or after). In fact, I've had some people express envy that I do that, which kinda surprises me...)

Yes, there is a risk of contamination. The risk varies from restaurant to restaurant, depending on the type of food and the kitchen staff. Some examples:

* A good sushi place, imho, generally has a lower risk of contamination because they are careful about what is in each item. My experience has been that the language barrier is often higher, however, making it tricky to clarify "no sauce". So, very careful item selection (rolls with no sauce, for instance) from a clear menu (that actually lists the sauce) is important.

* Vegan/raw-food restaurants (no, this does not mean raw meat) often have so many items that are naturally gluten free and that need to be prepared so far in advance, that the risks of contamination are much lower. (And they really can have some tasty food, too. )

* A restaurant with a well known, dedicated gluten free menu. This can still be hit or miss, as we're generally talking about chains, and management varies with each one. But you have a better chance than a restaurant that doesn't do this. (I happen to like PF Changs better than Outback on this front, for instance, but it appears to most definitely vary regionally - both in my own experience, and based on what others have said here.)

For some, the risks, minimizable though they may be, are always too great. But they are minimizable. (For instance, my choice is that I will never eat at a sandwich shop. They might have a salad that can be made gluten free, but there's so much bread (and hence crumbs) flying around the place, that it's just not worth the anxiety.)

In the end, it comes down to personal decision, and discriminating judgement.

[angieInCA]

I eat out quite a bit (at least once during the weekend and a couple of lunches during the week with business associates for meetings) I actually do pretty well eating out even at smaller privately owned resturants without an actual gluten-free menu. I always smile nicely to the waiter or waitress and tell them that I'm going to be a bit difficult. I ask if they know what Gluten is (if not I give them a bit of a run down) and then proceed to give them my order with my specific instructions. So far I have never been glutened in this situation and the server is usually extremely careful and helpful (if they are not sure about something they ask the manager or cook). WHere I have been glutened or had server mistakes is at the larger resturants with gluten-free menus.

I am always cautious and I never get angry. I'm a true believer in killing them with kindness and humor. The only place I actually got upset was at Claim Jumpers where when my Gluten Free Menu steak was delivered to my table with a big fat fried onion ring sitting on top and I asked to speak to the Manager and he said "here let me take that off of there for you" and started to just remove the onion ring. Both my husband and I went into a tirade about how wrong that was and how ill informed and trained he and his staff were. We have never been back.

My best experience has been at Outback. Our local one has a manager who has Celiac Disease. SHe came by our table one night when we were there after the hostess told her we had asked for a gluten-free menu. SHe wanted to assure me that the staff is very informed and make every effort to be careful of any cross contact.

We also have a local Italian resturant that my business associates just love. I eat there at least twice a month. When I first found out I had celiac disease I visited with the manager and discussed what was safe and what was not. Now when I know we are eating there I call ahead and order a special eggplant chicken lasagna they make just for me (chicken breat, eggplant, sauce, a little hard cheese baked). Alot of my associates are so intrigued they want to try it. THe manager has told me last week he is thinking about puting it on the regular menu as a healthy choice

I think part of my success is that I am a pretty experiencded cook and know where alot of hidden gluten might be so I ask a ton of questions when I'm not sure about something. Also I have gotten over being embarassed about it. I realized they get a ton of requests from people on special diets and I'm really not all that special. I just handle it matter of fact and make no apologizes about my needs. I'm always firm in my requests but polite at the same time.

[Lisa16]

Perhaps it is a question of how sensitive you are.

I do not eat out anymore because I get glutened over 50% of the time. Sometimes it was slight, from cc, and sometimes it has been full blown bad in the b-room for 3 hours. The reactions are different for me, which is how I know- slight cc only produces painful burps which last for 5 hours or so.

I seem to be very sensitive and have trouble where outher people don't-- for example, I have been slightly glutened 3 times at PF Changs (two different ones). I have a "three strikes and they are out" rule. I think this is because it took me a long time to get diagnosed and there is some damage. I hope it will get better with time.

The safest places for me were independent asian restaurants-- like Thai, Indian or Japanese-- but then I am usually with somebody who can speak the language, which helps. I usually get to talk to the chef. I also find I do better when I eat out in Canada than in the US and in larger cities or resort areas rather than small towns.

As for the part per million question, the usual/ international standard for something to be labeled gluten-free is 20pmm. Many people here feel this is too high. In some countries, like Australia, the ppm is zero.

[mysecretcurse]

I don't personally eat at restaurants. One tiny exposure and I'm sick for weeks. I just don't trust the people at the restaurant to not make any mistakes. I don't think they'd do it on purpose but stuff happens and it's just not worth it for me. If I did go out I'd probably spend the whole time worrying about it anyway. I'm extremely sensitive, I swear.. maybe it's partly in my head but the cook could just be THINKING about wheat and gluten me hahaha.

[oceangirl]

I am a super sensitive and never eat out, although I have on 2 occasions in the last year at a restaurant my daughter works at and where she watched them prepare my food. I always end up sick and there are just too many variables. So, it will depend on your discovery of how sensitive you are. If you can eat things made on shared lines I would think you'd be okay.

lisa

[ang1e0251]

I think it all depends on whether you are a super sensitive or not and whether you are able to express yourself to the staff. I'm not a super sensitive and although I don't eat out that often, I haven't had a problem doing it. I usually make sure I have a Lara bar with me in case and certain functions I take my own food. I wouldn't have a problem eating before I go and just socialize. I'm not going to let a little crumb make me "live in a box".

You have to make tough choices but once you've made the choice, embrace your life and be at peace with it.

[ranger]

I'm pretty sensitive, but still manage to eat out on occasion. There are several restaurants in my area that I feel safe with so I tend to stick to them. My pet peeve is a restaurant that has a gluten free menue that has things like " The Blah- Blah Burger _ order with no blah, no blah, no blah, and no blah"! Whats left is a hamburger patty. To me, That's not a gluten free meal. One place had no mashed potatoes in one offering. How do you even glutinize mashed potatoes? And no catsup. Is it so hard to have gluten free catsup? I don't eat out often, so I don't have to worry about being bored with so few choices. And, occasionally, I do try something new. But, I'm such a darn good cook, it doesn't make sense for me to eat out often. Enjoy - just be cautious.

[merry0709]

For me, I try to be as careful as possible without coming off as crazy anal. It`s hard. Usually the mom and pop non chains are better at helping you out. Things you really need to avoid are the same things you would be careful at home. Sauces, salad dressings, taco chips ( that one has gotten me a few times), anything that you think might be pre made and shipped in etc. Sometimes you just have to ask. I get sick of it because you never know what kind of server you are going to get. Some waitstaff is really nice and some are jerky and impatient. I asked a waitress at Cheesecake Factory for help in selecting a chicken dish without coating on because of my gluten probelm. She answered " Honey, everything on this menu has flour in it, just order a salad." She was short and nasty, after just one little question. I called the manager and turned her in.

I`ve had my best luck at independant Asian places and Mexican places. I stay away from Italian. I figure the air is probably saturated with gluten. LOL. I just do better at home so normally cook for myself and not take the risk. If I am going with a group socially, I look at it more as a social event and put the food on the back burner, eating before or after, just in case the menu isn`t gluten friendly. I was a baby about going out at first until I got used to it. Now I go, and worst case scenario, a salad with vinegar and oil or lemon. What are you going to do, become a hermit?

[RESO]

I didn't eat out at all at first, except once in a while I would eat tacos at real Mexican food places because they only use corn tortillas. I basically came up with a spiel that I use for waitstaff, etc. As soon as they come to the table, I explain that I have a severe allergy to gluten, which means I cannot have wheat, rye, barley or oats (yes, I know it isn't technically an allergy, but that's the easiest way to explain it). I tell them I can't even eat something that has been touched by or on the same grill space by things like {insert example here: pancakes if breakfast, bread, whatever, depending on the meal}. I usually ask if the cook can clean the grill. Once I have explained this, the server is almost always very sympathetic. Last night, I went to a place with my band members and the host said there was nothing on the menu I could eat, but the waitress tried to find me something. I ended up with a bland salad but at least she found something. She also brought out the dressing bottle for me to read the ingredients.

Here's a story that might make all of you chuckle, I went for breakfast the other day with some friends at a nice hotel, explained I couldn't do the buffet, gave my spiel about what I couldn't eat, etc... I ordered eggs, bacon and home fries and asked if the cook could clean the grill. My eggs, bacon and home fries each came out on a separate plate! :-) I think when I said everything has to be cooked separate", they took that literally, lol. I felt like the main character in the TV show Monk :-D Well, better safe than sorry though...

[pupok]

  RESO said:

My eggs, bacon and home fries each came out on a separate plate! :-) I think when I said everything has to be cooked separate", they took that literally, lol. I felt like the main character in the TV show Monk :-D Well, better safe than sorry though...

Hah, the same exact thing just happened to me last weekend! I thought it was funny. Each item on a different plate. I sure hope they still cleaned the grill!

I was diagnosed with celiac in January (positive blood and biopsy). In the blood test my levels for the things they test for were all really high, some of them off the range for celiac. I thought I was being very careful about not eating gluten, despite eating out in restaurants a fair bit. I always ask the waiter to be super careful and I will only go to places where I've heard others have had good experiences.

However, I just had a follow-up blood test (it's been a bit over 7 months), and the doctor said my levels have improved from where they were but I'm still in the positive range, so I must be getting gluten somehow. She suggested I see a dietitian which I will do, but I have also decided to stop eating in restaurants full stop. It's frustrating because I have so little time to cook, but I'm learning to fit it in.

I guess I'm still learning how sensitive I am, and I seem to be quite sensitive.

[ang1e0251]

However, I just had a follow-up blood test (it's been a bit over 7 months), and the doctor said my levels have improved from where they were but I'm still in the positive range, so I must be getting gluten somehow. She suggested I see a dietitian which I will do, but I have also decided to stop eating in restaurants full stop. It's frustrating because I have so little time to cook, but I'm learning to fit it in.

I'm not saying you might not be getting gluten somewhere but I've seen other posters here report it took a couple of years for their levels to get close to normal. I think the fact that you've seen improvement means you are on the right track. I don't think I've heard anyone report their levels were normal in 7 months.

Can anyone else report how long it took to normalize their bloodwork numbers? Maybe you want to start another thread and ask that question.

[pupok]

Thanks for that information, I will start a new thread. I was getting all worried so it would be good to know what others experienced.

Also, I need to call my doctor back and get the results sent to me. The woman on the phone didn't tell me the exact numbers, just said that I wasn't down to normal yet.

[Karrin]

I'm one of those that gets severely ill for weeks after even the smallest single crumb of gluten, but I've still been able to eat out!! The trick is to be extra careful and do your research. I believe there is even a website online where you can look for local places that have gluten free menus. I'm sure a google search would bring it up.

I love mexican food and Qdoba's naked burritos are gluten free (plain chicken, black beans, rice, guacamole, salsa, sour cream - and I believe other menu items are as well). Just make sure to let them know you need them to change their gloves etc. I've also found going out to restaurants (not fast food, they seem oblivious and could care less so far) most have gone out of their way to prepare me something special - even if nothing on their menu is edible to me. I ended up with the most amazing garlic/cripsy asparagus and baked chicken at this one restuarant. *drool* In fact, I find going out more fun with all the special treatment.

[oceangirl]

It took 2 years for my bloodwork to get into normal range and I cooked everything myself from whole foods and never ate out. So, I think it can take some time. That said, I was still filtering out sneaky areas of gluten contamination. Still am...sigh.

lisa

[RESO]

  Karrin said:

I love mexican food and Qdoba's naked burritos are gluten free (plain chicken, black beans, rice, guacamole, salsa, sour cream - and I believe other menu items are as well). Just make sure to let them know you need them to change their gloves etc.

I keep hearing that about Qdoba but that was not my experience. I think it depends on the franchise. I looked on their website and they said they had soft corn tortillas, and that the hard shell corn ones could be cc'd from the fryer. When I went to the Qdoba (downtown Boston), they said the only corn tortillas were the hard shells, all of their soft tortillas were made from flour. This has been my experience at pretty much every "americanized" Mexican restaurant. Sigh.....

[Karrin]

  RESO said:

I keep hearing that about Qdoba but that was not my experience. I think it depends on the franchise. I looked on their website and they said they had soft corn tortillas, and that the hard shell corn ones could be cc'd from the fryer. When I went to the Qdoba (downtown Boston), they said the only corn tortillas were the hard shells, all of their soft tortillas were made from flour. This has been my experience at pretty much every "americanized" Mexican restaurant. Sigh.....

I've gone to a few different Qdobas and haven't been glutened yet, even though all but the one with a fellow celiac working there gave me the 'your what' look when I told them I couldn't have gluten. I'm so addicted to mexican food I don't know what I'd do without them as I absolutely despise cooking. Maybe my success is in that I always get the naked burrito (almost always vegetarian) with the above ingredients?

I have seen their soft corn torillas, but I'm not a fan of them so I haven't ordered any. The girl with celiac disease working their attested that she never had gotten ill from them though, but to avoid the items with barbecue sauce, even though it is stated by Qdoba as being gluten free it has made her ill.

[RESO]

  Karrin said:

I've gone to a few different Qdobas and haven't been glutened yet, even though all but the one with a fellow celiac working there gave me the 'your what' look when I told them I couldn't have gluten. I'm so addicted to mexican food I don't know what I'd do without them as I absolutely despise cooking. Maybe my success is in that I always get the naked burrito (almost always vegetarian) with the above ingredients?

I have seen their soft corn torillas, but I'm not a fan of them so I haven't ordered any. The girl with celiac disease working their attested that she never had gotten ill from them though, but to avoid the items with barbecue sauce, even though it is stated by Qdoba as being gluten free it has made her ill.

Thanks for the info. By "naked" do you mean just the filling and no tortilla? R

[Crayons574]

I agree with everyone else--it all depends on how sensitive you are. For instance, some people can use products that are "manufactured in the same facility as gluten." However, I cannot, but I am extremely sensitive. I think if you are on vacation or something for a short period of time, where you really don't have any other option than eating out, then you should be fine. I try to make going out to eat a rare occasion--like once a month, if that. Most of the time I am fine if I talk to the waiter, but just know you are always taking chances when you go out to eat, but you never know if they use the same spatula or any other means of cross-contamination.

[Karrin]

  RESO said:

Thanks for the info. By "naked" do you mean just the filling and no tortilla? R

Yes, they give you a big plastic container with everything minus the tortilla - in fact I think you tend to get more without because the bowl is quite large. I always have enough for at least two meals! I've gotten so I don't even miss the tortilla anymore.