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LL04

Eating At Restaurants

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Jillian,

Where do you eat out at?? What do you order? I don't eat meat, so therefore I would be eating mostly salad and baked potatoes. That would be it. I still go to restaurants with family at times, but I eat before I go. I was ordering gluten free lettuce wraps at a PF Chang's and requesting that they change the chicken to tofu. I never in a million years thought the tofu would have wheat in it. I kept getting sick there, but thought it should be fine. I moved and went to a different one in MD. The waiter came back and told me that the chef said he couldn't guarantee that the lettuce wraps were gluten free if I substituted tofu for chicken. I had never thought of this before. SO he came out and talked to me and then brought me the Prepackaged tofu. Right on the package it said "wheat". So even in a place like PF Chang's they aren't always aware. The chef at the PF Chang's in MD, made me a salad that wasn't on the menu. He was very nice.

I too think that some people on here remain sick, because of eating out and eating things that are supposedly gluten free. Amy's for example seems to have changed their statements recently to cover the fact that people have been getting gluttened by their products. Obviously people are getting sick from them, or they wouldn't be changing things!

I would LOVE to be able to eat out again. I would do anything to be able to go eat somewhere instead of cooking every meal, but then when I am sick, the 20 minutes it took me to "enjoy" a meal out to eat isn't worth the 3-4 days it takes to get back to normal again.

I try and think positive in that I am eating healthier at home, 100 years ago everyone made there own meals and there weren't any restaurants and I am saving money. For now this is my life, so I have to be happy with it.

Monica

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Jillian,

Where do you eat out at?? What do you order? I don't eat meat, so therefore I would be eating mostly salad and baked potatoes. That would be it. I still go to restaurants with family at times, but I eat before I go. I was ordering gluten free lettuce wraps at a PF Chang's and requesting that they change the chicken to tofu. I never in a million years thought the tofu would have wheat in it. I kept getting sick there, but thought it should be fine. I moved and went to a different one in MD. The waiter came back and told me that the chef said he couldn't guarantee that the lettuce wraps were gluten free if I substituted tofu for chicken. I had never thought of this before. SO he came out and talked to me and then brought me the Prepackaged tofu. Right on the package it said "wheat". So even in a place like PF Chang's they aren't always aware. The chef at the PF Chang's in MD, made me a salad that wasn't on the menu. He was very nice.

I too think that some people on here remain sick, because of eating out and eating things that are supposedly gluten free. Amy's for example seems to have changed their statements recently to cover the fact that people have been getting gluttened by their products. Obviously people are getting sick from them, or they wouldn't be changing things!

I would LOVE to be able to eat out again. I would do anything to be able to go eat somewhere instead of cooking every meal, but then when I am sick, the 20 minutes it took me to "enjoy" a meal out to eat isn't worth the 3-4 days it takes to get back to normal again.

I try and think positive in that I am eating healthier at home, 100 years ago everyone made there own meals and there weren't any restaurants and I am saving money. For now this is my life, so I have to be happy with it.

Monica

I gotta be honest, even though I love PF Chang's they do make me a bit wary. I try to go there when they aren't as busy.

I definately do favor restaurants that have gluten free menus. But if they don't have a gluten free menu I'm not afraid to be the neurotic, crazy girl (but very sweet and nice), who asks the same question 6 times and lets them know I'm doing this because I'm allergic.

There is a mexican restaurant by me that I love. They don't have a gluten free menu but after the 1st time I ate there, and I was crazy girl who checked 6 times that her tortilla was corn, asked if the chips on the table where fried in oil, checked the sauce that came on top of her enchiladas. I thought I was driving them crazy. Until the owner looked at me and sympathetically said, "Gluten intolerance?"

I'm picky about what restaurants I go to, but not overly picky. I just try and be smart about it. I'm obviously not gonna go to a pizza place and figure, oh well I'll just have a salad. That's just stupid. Ofcourse I'll get sick. But if I want a fairly quick, low maintenace meal, instead I'll go to a diner and order a cheese omlette. I'll explain to the waiter that I'm allergic to a lof of the other stuff they put on the grill and can he ask the cook to make my omlette in a clean pan instead of on the flat grill surface.

I should mention, my family owns restaurants; so obviously I eat there a lot. But I mostly help myself, and obviously everyone there knows the precautions to take for me.

From what I've learned it just about making smart choices and not being afraid to speak up. As much as I love to eat out there are certain places I just don't feel comfortable going. Loved Cheesecake Factory, but now I just think it's to risky to go there. I prefer to stick to places that are a bit more small scaled and less of a chain (unless they have a gluten free menu). I find a privately owned business is a lot more attentive to the individual customer and less of an assembly line.

Like I said, I think the key is making good decisions and don't be timid - but ALWAYS be very, very nice.

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I'd like to add that my family doesn't own any restaurants but I'm able to eat out regularly, but particularly, without getting sick. My recent Celiac check up bloodwork was so clean that my Dr. said it was unbelieveable. My antibodies are like <4 and <6. She says I'm doing a remarkable job on my strict gluten free diet and whatever I'm doing, I should stick to it. Oh and my PF Changs has no such thing as a 'slow time' so sadly I don't patronize them.

Everyone is different and it might be that my system is not reacting to tiny bits of gluten that Dr. Rudert says even eating at home in a mixed kitchen are impossible not to ingest. So maybe I'm just lucky that way and some others are not. My feeling is that some who get sick when eating out are getting into gluten, and some have other intolerances they have not explored yet. But if you have positive tests for Celiac and then you don't, well then you're doing something that's working and for me that's living my life to the fullest. I can assure you if I got sick when I ate out, I would not eat out either OR if my follow up bloodwork was suspect, I'd have to assume I was getting glutened without reacting. My numbers are now lower than my non Celiac sister's. Go figure B)

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Some real interesting replies on both sides of the

fence. I personally cannot eat out as I was already

limited by my food allergies and then dx'd with

celiac puts me in my current position.

I bring my food with me whenever I go out

with my friends and simply tell the waitstaff

that I do not want to ruin their day or the chef's

for that matter. Most places are pretty cool with

this.

Do I have friends/aquaintances that are embarrassed

by my bringing my own food? Yes, and I adopt the

"bite me" attitude because I cannot afford to be sick

and if they cared more for my well being than their

vanity - they would understand (or at least surpress

their ignorant attitude).

One point of interest- the younger generation and accessibility

of prepared foods.... I taught both of my sons to cook and they

can, but being on the go all the time they opt out for fast food.

Interestingly enough, my oldest is reconsidering the cooking option

in order to save money.

(Neither is dx'd celiac)

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Guest ~jules~

I was just dx, so I am still getting glutened left and right from lach of experience with all this. I haven't been eating out, I'm too freeked out right now to even try it. I think maybe after awhile I may warm up to it if I investigate the place well. But for now no way!

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Aren't any of you scared of cancer at least? I will not risk my life for the sake of eating out.

How I agree with this quote. Today I decided to give up most restaurants for this very reason. I have DH , and it is a fortunate thing for me , as I would not know that my gut was being damaged by about 80 % of restaurant meals.... no upset stomach, but my skin tells me I have been hit. You who do not have DH may take risks for which you may later pay a high price. Chinese restaurants seem worst as they cannot seem to grasp the concept. It is bad for me as my DH is Chinese & our life used to be greatly enhanced by Dim Sum and roast duck .. but no more. They kept telling us that most things were OK.. now I know it isn't so, 7 soem of the things I thought were made from pure rice pastry are held together with PURE gluten, extracted from a dough.. ( Cheung Fun , for instance !!)

As for Sushi.. I thought that would be OK.. BUT go & read the lables on the bottles of the stuff they pour on to the sushi.. many of them, even the vinegars, are laced with wheat contaminations. The best so far are the Turks , who take it all very seriously , and will kindly cook from scratch, beforre your eyes if you want...if you have a card in Turkish to show them, they are most helpful.

Eating out is a minefield, & hardly worth the risk. Even friends can operate on the ' a little bit won't hurt' basis, if you are not lucky. Very bad for me , as one who used to eat ANYTHING !

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I have Celiac, food allergies and I eat out. I am very sensitive to gluten and react at very little and get sick for a good week or so from it so I don't take too many chances, however do to the nature of my job and life style I have to eat out.

I've posted here before all the rigamarole I go through to eat out. I do internet research into restaurants and often e-mail them before I fly into that city explaining what I need and asking if they can do it. I usually only go to very upscale places where they don't have food that comes in partially "done". They make all the sauces, dressings ect.

Once I get there I talk to everyone and ask to speak to the chef, I've rarely had them say he can't come out, usually due to my e-mail and/or phone calls they already know about me. In very upscale places I've had almost no problems. I recently had a wonderful risotto at a great steak house, they made even the chicken stock from scratch and we went over all the ingredients, I ate it and was fine. I can almost always get steak, fish and baked potato in a good restaurant with no problems. But so many fine restaurants reduce their sauces they don't add flour. Most of the chefs in good places seem to know all about gluten already.

Just the other day I tried a new place and I always say i have very serious food allergies, it seems that makes more sense to a lot of people, the chef came out and said this is a gluten issue right? He knew all about spices, soy sauce, the whole 9 years.

I just refuse to give up a huge part of my social life that revolves around food and eating out.

Susan

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Guest alex j

My son was not symptomatic in any obvious or immediate way, but his biopsy showed major damage. So we get no sign that he's been glutened. I just don't feel like it is possible for us to determine whether food we haven't made is safe for him. I even have a lot of trouble finding basic ingredients (like flours) that I feel confident are safe. I've worked in restaurants, and my dh has worked in industrial food production, and we find it hard to imagine they can consistently manage the basics of avoiding cross contamination - so how the heck can I be sure they are sourcing all their ingredients properly?

He also has severe food allergies. Before celiac we did occasionally eat out. Sometimes, no matter how careful we were and how safe everything seemed, he would still break out in hives (luckily never anything worse at a restaurant). So I have seen how microscopic amounts of unforseeable contamination can affect him. How can I know whether that is happening with gluten? Just open a bag of flour in a kitchen and everything around is finely coated.

I guess if this was my body, I might feel differently and be willing to take a risk that it is impossible for us to accurately quantify. But this is his 6-year-old body and it has to last him another 80+ years.

This has had such a huge effect on our lifestyle that we are thinking of moving to the country. There is a lot less appeal to the city when you can't just drop by all those Asian and Mexican and Ethiopian (and everything else) cafes. We really miss eating out. But if we have to make everything at home from scratch, Ingalls-style, we might as well make a virtue of it.

Alex

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Aren't any of you scared of cancer at least? I will not risk my life for the sake of eating out.

Not really, most of the old studies on this are fundamentally flawed since their control population is presumed to have an insignificant number of celiacs (1:5000) when in reality it has 1:133

However the other reasin is in its simplest form cancer is caused by mutation in cell replication.

In other words the more cells replicate the larger the chance.

If you are celiac and eat gluten daily then the cells are constantly being attacked and hence forced top regenerate and the cells of the intestine are not "designed" to do that unlike for instance the stomach.

Hence if you eat out and are careful and say get caught out 1-2 a year its no big deal... compared to daily.

Sure its not nice etc. but the risk of cancer is correspondingly smaller....so I think if you keep eating out as a non regualr thing and are careful then the risks are controlable.

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I think if you keep eating out as a non regualr thing and are careful then the risks are controlable.

I take your point.. however, as you get older, there are more celebrations & oportunities to eat out !!!! Christmas, Birthdays, Fathers day, Mothers Day, New Baby, Marriage , Christening... even a special promotion Barbeque from my car providers.. seems to be every 3 weeks at least someone wants to put me in the firing line !! ROFL ! So I ma going to be ultra cautious. It has been so nice this week, with very few DH lesions. ( You have to have them to know how they feel !!)

But this is his 6-year-old body and it has to last him another 80+ years.

Alex

Alex, I so sympathise. My son Trevor was diagnosed at 6yrs old, when he was almost at deaths door. And tiny. It was very tricky, and the substitute foods in those days were few & horrid. Subsequently he became a strapping great man, he is now 42 yrs old... and amazingly takes many more risks than I do , even eats normal bread on a fairly regular basis ! ( bad boy) but seems to get away with it. Yet I who was diagnosed late in life.. amost too late... I am hypersensitive now. I hope your son also gets less sensitive as he gets older.

All the best ( & I can understand why you'd want to leave the city !)

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Eating out ..... it used to be a luxury now not so much I have been gluten free for almost two years. I am very careful at first I ate nothing but salads with vinegar and oil.I didnt want to be one of those customers who are really anal retannint. (that did not last long) I agree with the majority when you have a wheat or gluten allergy you have to go 100%. I am very sensitive as well. My boyfriend has bee awesome through all this. He has been my hero. Keeps me very grounded. I love food and espespecially sweets! I used to be a caterer. All this yapping is because it gets better.... Restaraunts I am always looking for. Outback is really good,P.F. Changs, Chilis, you really just have to research your area. Vegetarian places always are really good as well. When eating out remember you are the one who will get sick!! Go with your intuision if looks unsafe skip it!

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?

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Eating out ..... it used to be a luxury now not so much I have been gluten free for almost two years. I am very careful at first I ate nothing but salads with vinegar and oil.I didnt want to be one of those customers who are really anal retannint. (that did not last long) I agree with the majority when you have a wheat or gluten allergy you have to go 100%. I am very sensitive as well. My boyfriend has bee awesome through all this. He has been my hero. Keeps me very grounded. I love food and espespecially sweets! I used to be a caterer. All this yapping is because it gets better.... Restaraunts I am always looking for. Outback is really good,P.F. Changs, Chilis, you really just have to research your area. Vegetarian places always are really good as well. When eating out remember you are the one who will get sick!! Go with your intuision if looks unsafe skip it!

I agree with much you say. I think Veggies are most likely to understand as they also are used to ' problem eating' Are you in Australia ?

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I think everyone has made some equally good points both for and against the dining out issue. The main thing to remember for all of us, ESPECIALLY newbies, is that NO RESTAURANT excluding those that are dedicted gluten-free can claim and guarantee to have gluten-free menus or gluten-free items to offer their celiac clients. Actually I don't think that Outback or PF Changs or any restaurant or manufacturer for that matter, that is not dedicated gluten-free, should be allowed to make that claim with or without a disclaimer. Rather they should have to say "Gluten not intentionally added" then for all the newbies it would be a cinch to decide whether or not to eat there or buy their products based on the fact that they would understand immediately that they may unknowingly ingest gluten.

For those of you who were lucky enough to understand that from the beginning...well good for you. But I guess I was just one of those "stupid" new celiacs (as one of you so kindly put it) that did not understand the severe issue of cross contamination. I had all of 5 minutes with the specialist who diagnosed me, I was given a few pamphlets, told not to eat gluten and pushed out the door. I had NEVER heard of celiac's in my life before those 5 minutes and I had no idea what gluten was or where it came from. I had no clue about cross contamination and when I heard or read that something was "gluten-free" I BELIEVED it. So for all you 'smart' celiac's...please give us 'dumb' celiac's a break. Don't assume that every newly diagnosed celiac 'gets it' and knows everything there is to know right from the beginning. If that were the case, there would be no need for this message board would there???

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Actually I don't think that Outback or PF Changs or any restaurant or manufacturer for that matter, that is not dedicated gluten-free, should be allowed to make that claim with or without a disclaimer. Rather they should have to say "Gluten not intentionally added"( Quote)

Yes, it is really , I suppose, crucial that people do say there is a slight risk.. and yet, if we are too rigid then we end up with everyone coveriung their backs and saying the food MAY contain gluten, so they don't get sued.. then we will be unable to eat out at all. I truly pity those who are nut sensitive as there seems to be nothing on the market that they can eat. I think , legally, stuff can't be labled gluten free if it is produced in a factory where there are non- gluten-free foods produced, though I may be wrong.

Sorry if someone felt under attack or felt they were made to look silly.. My tag is.. everyone knows nothing about something. We are all here to learn, even if all they learn is compassion..

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Yes, it is really , I suppose, crucial that people do say there is a slight risk.. and yet, if we are too rigid then we end up with everyone coveriung their backs and saying the food MAY contain gluten, so they don't get sued.. then we will be unable to eat out at all.

But that is my point exactly, if you are eating in a restaurant that is not dedicated gluten-free then you must realize that their food MIGHT contain gluten so they should not be able to say in any way shape or form that they offer gluten-free items. So they should say that ALL their food MAY contain gluten because it MAY. They can can add to that however, that they did not INTENTIONALLY add gluten to your meal but it may happen accidentally.

So you see, you would still be able to dine out because you would still be taking the same risks in those "gluten-free" restaurants as before. That wouldn't change at all. Just the fact that newer people to this disease would realize that these menus, restaurants and manufacturers aren't really gluten-free.

That's all I'm trying to do here...Is help new, uninformed celiac's better understand the difference between what claims to be gluten-free and what REALLY is gluten-free...that's all.

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