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      Frequently Asked Questions About Celiac Disease   09/30/2015

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

How To Deal With Servers Who Don't Think Celiac Is Real
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30 posts in this topic

I just found out I have celiac a month ago. So far the diet hasn't been that difficult, except for when I go out to restaurants. I have seen a lot of articles and posts on Facebook about people saying gluten free eating is just a fad diet and that gluten sensitivity doesn't really exist. Obviously, this isn't true, but I seem to be treated like that when I go to restaurants. I actually had a waiter laugh at me the other day when I asked him if he was absolutely sure that the chips were 100% corn. He laughed and said sarcastically, "I love people who just found out they can't eat gluten! Don't worry, hun, you're fine."

I feel stupid for believing this waiter now, as the next 24 hours were not fun. I know I could have called the manager over and said my whole speech about celiac and CC and how they have to clean their prep areas and change gloves, etc. but I hate doing that. I have always been a quiet and well-mannered person in restaurants and I never complain. I hate the feeling I get when these servers are looking at me like the "bitchy" customer with too many demands who is just doing this for attention. 

So my question is this: How do you deal with servers who don't take celiac seriously?

 

Thanks for ideas!

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I say I have to eat gluten-free for medical reasons. Or I have celiac disease. I even said to a waiter ". I will get sick".

That said - you have been diagnosed for 1 month. You shouldn't be chancing all these places until you are more healed and know what is gluten-free and what isn't. For example - those chips were 100% corn but you didn't know that you can't have them because they are fried in the same oil that gluten is. That isn't gluten-free. Gluten from the gluten items can fall off and be in the oil . Haven't we all gotten an onion rings piece in our fries?

You will have to speak up and tell them its a medical need not a fad. But you might want to wait a few months before you take that on.

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We have actually had to walk out of many restaurants that have a "gluten free menu". Don't be afraid to. Yes, its frustrating, and disappointing, but If I can't talk with someone who understands, or they laugh it off as in your case, we don't chance it. I am sick for 2-3 days, and so is my daughter. I am extra careful because of my daughter. Good luck with this life long journey. It does get easier, and as you feel better, the more easier it is! You find out quickly you don't want to be sick~ We have a few restaurants that we trust that we go to when we travel or if we go out in our own town. We typically just don't eat out, but we travel, so its hard.  We have been doing this for years, and you will see all kinds of responses from people in restaurants, from those who really want to help you, and those who don't believe or laugh it off.  So sorry.

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If they insist without asking the kitchen/mamager-leave. It is not worth it.  There are some places that are better than others but there are also some servers who are better prepared than others!  

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I am deathly afraid of restaurants right now but if I was going to go I would do some research.

 

Do they offer gluten free items?  Have other's with celiac been there and not had problems with cross contamination? Ask if they use a premixed seasoning to flavor their food.

 

Call ahead if you can.  Explain your situation and ask them if they feel they can accommodate you and your needs.  If they can, ask if any of their servers are familiar with your needs and if they are working when you are going to be there and can request them. Don't go on busy nights, the kitchen is crazy. Never order anything fried. If they bring you a salad with croutons, keep the salad and ask for one without.

 

If you get a server that treats you that way maybe ask to speak to the manager. 

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That particular waiter, I would have walked out (or not eaten while everyone else did) and followed up with a letter or email to the manager afterwards. Walking out or not eating is not ideal, it's awkward (and hungry!) but it would make a point. 

I try to email the place in advance and explain that I am really looking forward to eating there but that I have coeliac so I need to check a few things out with them first - what can they provide and what do they do to prevent cross contamination? I've had some really good responses (and good meals!) this way - it means that staff and managers who do care can check things out for you rather than trying to do things as quickly as they do when they're waiting on you. 

Then, when we go somewhere, I always make the booking and ask them to note down that I have coeliac. I then order last and say that I have coeliac, I'm not a fad dieter (may as well confront that head on) and my meal has to be 100% gluten free. If they argue with that or disrespect you they don't deserve your business - don't give it to them. Mostly I find a smile and a bit of flattery ('it looks so good! Wish I could eat it all!') goes a long way. 

There are a few places where I eat regularly that I really do trust so I don't email ahead but every time I make sure the waiting staff understand at the table.

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I would have asked to speak to the manager immediately. The waiter's response was smug and condescending and there's no excuse for that.

 

I am always polite and I always get respectful responses, but the one time I didn't? well, let's just say that kiddo never made fun of anyone asking for a  G F menu again.  ^_^

 

If they cannot accommodate your dietary needs, fine...go elsewhere. I do not expect every place to do this for me.

And not every place that boasts a G F menu gets it right anyway. 

 

I say "I have celiac and I need to be very careful about gluten cross-contamination.  Can you ensure my meal

is G F?"  and after they  tell me their kitchen practices and I am okay with them, I  eat there.

I always vet the place beforehand anyway. I rely on other celiacs' recommendations.

 

but I also agree with Karen that maybe you should eat cleanly and prepare your own food for a the first few months so you can heal your gut a little bit.

before venturing out too much. 

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Yes yes yes to the calling and researching ahead!  If you call, be sure it isn't at a busy time!  I try for between 2-3 in the afternoon to catch between lunch and dinner!

 

I have to say that there are some places that are AMAZING!  I emailed Legal Seafood to ask if they could accommodate my DS who has a list of food allergies on top of Celiac disease.  I got an email back within hours asking for my phone number.  At 8:00 on a Friday night (could there be a busier time for a restaurant??) the manager CALLED me!  He asked what we needed, when we would be there and insisted on being there when we come and making the reservation for us that minute!  Now we haven't eaten there yet (the trip is in a few weeks) but if they are going to go to those lengths I feel MUCH better about even walking into the place!!

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I stopped eating out until getting in better control of this thing. I haven't been glutened this year *knock on wood* because, with two lucky exceptions, everything I ate, I prepared myself. It's getting easier to speak up for myself the more I've healed (and with experience). Currently, I let my husband go to battle for me once I begin stuttering but that's happening less and less as I become stronger. He is gluten intolerant and doesn't have as severe a reaction but, because of me, his reaction towards the restaurant is severe when they serve him gluten. As he goes to restaurants with friends and business associates, he educates along the way. Hopefully, he's clearing a path as he doesn't mince words ;)

Someone on here says she only goes to fine restaurants because the chains aren't always well-trained (or trained at all). Whenever someone gives me a cavalier attitude, I pass on the meal. I've eaten a little something a few hours before going out with others (with snacks in my purse for later). That way, I'm fed and, if it feels safe to eat in a restaurant, I still have room to make that decision too. I've also gone ahead of time to talk to the manager and can usually get a good sense from that. It's getting easier to tell who understands the seriousness and who doesn't.

Use the words "severe celiac" (it elicits a more serious consideration) and there are also restaurant cards to print: http://www.celiactravel.com/cards/english/

I haven't used the card. Like I said, but for a few exceptions, I stopped eating in restaurants until my gut has had more time to heal.

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Yes yes yes to the calling and researching ahead!  If you call, be sure it isn't at a busy time!  I try for between 2-3 in the afternoon to catch between lunch and dinner!

 

I have to say that there are some places that are AMAZING!  I emailed Legal Seafood to ask if they could accommodate my DS who has a list of food allergies on top of Celiac disease.  I got an email back within hours asking for my phone number.  At 8:00 on a Friday night (could there be a busier time for a restaurant??) the manager CALLED me!  He asked what we needed, when we would be there and insisted on being there when we come and making the reservation for us that minute!  Now we haven't eaten there yet (the trip is in a few weeks) but if they are going to go to those lengths I feel MUCH better about even walking into the place!!

New England is such a gluten-free friendly place, isn't it?  It may be crazy in other ways but food?  We take eating very seriously here and most restaurants worth their salt do a really good job of serving a safe meal.  Legal Seafoods gluten-free menu is top notch!

 

To the OP.......I would have just gotten up politely and, after speaking with the manager about the rudeness of his waitstaff, I would have walked out and never gone back.  I also would trash the restaurant (from a gluten-free point of view) on Celiac websites, to make sure no one else would be subjected to that kind of ignorant behavior. And if I didn't smack that smarmy moron up the side of the head on my way out, it would be his lucky day.  You need to learn to be more assertive and I know that is hard for some people to do. You always start out pleasant but if you get a lack of respect for your medical issues, it's time to speak up.  Once you do this, eating out becomes easier...and it will anyway, once you master the diet and how to dine out.  It takes time and practice.  :)

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I just found out I have celiac a month ago. So far the diet hasn't been that difficult, except for when I go out to restaurants. I have seen a lot of articles and posts on Facebook about people saying gluten free eating is just a fad diet and that gluten sensitivity doesn't really exist. Obviously, this isn't true, but I seem to be treated like that when I go to restaurants. I actually had a waiter laugh at me the other day when I asked him if he was absolutely sure that the chips were 100% corn. He laughed and said sarcastically, "I love people who just found out they can't eat gluten! Don't worry, hun, you're fine."

I feel stupid for believing this waiter now, as the next 24 hours were not fun. I know I could have called the manager over and said my whole speech about celiac and CC and how they have to clean their prep areas and change gloves, etc. but I hate doing that. I have always been a quiet and well-mannered person in restaurants and I never complain. I hate the feeling I get when these servers are looking at me like the "bitchy" customer with too many demands who is just doing this for attention. 

So my question is this: How do you deal with servers who don't take celiac seriously?

 

Thanks for ideas!

 

A lot of people don't know what Celiac is. And I can understand people who have that attitude. Non-Celiac gluten-sensitivity is not 100% proven yet in the medical science as far as how it harms the body goes. And gluten-free outside of Celiac is a fad because of the lack of scientific proof to back it up. So people think "Huh, what's celiac? Oh you are one of those fad people." Even Michael Savage recently ridiculed non-celiac gluten-sensitive people saying they make it all up in their minds, but I believe he is wrong.

 

I would never believe the waiter that corn chips are 100% corn. It's more like 50% white flour to 50% corn meal for all corn chips and cornbread and things like that. I am facing the same thing you are. Now I am "that guy" or "that girl" in the restaurant who has to make sure that everything is gluten-free. But here's the thing. I'm not going to be bitchy; I'm going to be factual and insistent. And if I am not taken seriously I will walk out. And here's why. More people are getting autoimmune diseases and food sensitivities. The rate of Celiac disease was proven back in 2000 to be 1 in 133. I believe it has probably gone up since that time.

 

This is not made up or in their heads. We have to teach these restaurants that if they want our service and the service of other customers who are also health-conscious and/or have real diagnoses that they need to take us seriously. And if they don't, they'll soon notice a bad review show up on their yelp / google listing.

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I have had some bad experiences , I have also had great experiences, One time I asked for a gluten-free menu and they said they didn't have a gluten-free lunch menu. So my minds starts to turn and thinking of what kind of salad to have, I asked if they had a separate fryer she said no but they cook them at 400º I said that won't kill Gluten. She said : is this just a diet or an allergy. I just stared at her and said an allergy.(knew she wouldn't understand) I had a plain salad nothing eles. Pffttt! Never go there again! LOL 

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To the OP, I spent 6+ years in restaurant management. If you tell a manager that you have an allergy, a well trained and intelligent manager will be jumping through hoops to accommodate you, or tell you straight up, "I'm sorry, I can't guarantee that dish is safe for you". Majority of servers (especially with the Hollywood gluten-free fad now) do think that gluten-free is a diet (like counting carbs) and not a medical need. Always when you go out use the word "allergy" and instead of asking for a gluten-free menu, ask for an "allergen menu" (normally gluten-free items will be there and on a separate gluten-free menu). With the allergen menu, you will still have to sift through, but the allergens (like wheat or gluten) will be listed.

*****I know celiac is not an allergy, but in restaurant lingo, it is an allergy, that is why I say to use the word allergy*****

If the manager blows it off as nothing, then by all means, get up and leave right then. I would also in that case contact the corporate office. Every restaurant I ever worked in had a very clear allergen policy that every effort was to be made to ensure a safe meal (all the say from diabetics, to vegans, to peanuts, to celiac) for 2 reasons: it's a loss of money from sales to not make every effort, and it can be a lawsuit if you fail after promising you can make it happen. Keep in mind though, a pronise they can make it happen is NOT 100%, it simply means they will do everything they can. When I was managing, I had numerous pictures of ingredient labels on my phone from taking pictures to show guests what was in the seasoning mixes, meats like bacon (kosher mainly), desserts (dairy mainly), etc. If the manager does that, then you can pretty much guarantee they are doing everything in their power. But your best option for "is this gluten-free?" on the menu would be from the corporate office since they have the full listings, and the legal department.

(Sorry this went on for a while)

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Yes, I use the word "allergy" too.  Or "I am allergic and can get very sick."  ALLERGY is a word that helps people understand the seriousness of my situation, and even though "allergy" is not the truth of it, it does more easily get the message across to food servers.  And lately I've even been using it in restaurants that have an official gluten free menu, since a lot of non-celiacs now use the gluten free menu.

 

I have found that even today, a lot of people don't know what "celiac" is until I explain it to them.  OHHHH, you mean "gluten free"!

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We just don't eat out anymore. I've talked the talk and ordered a plain salad only to find a random tortilla strip or fried Chinese noodle buried in there. Last month I did go to a Red Robin in Miami, FL where my daughter's been many times and always has a conversation with the manager... who told us just how gluten-free aware they are. The burger bun was so pretty and tasted so good, I was almost afraid to keep eating it and kept asking, "Do you SWEAR that this delicious bun is gluten-free??

 

I love PF Changs and know their gluten-free service is good but mistakes can be made with the very best of intentions and I don't EVER want to go thru a real glutening again.

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Hi, I just wanted to chime in.

 

I think it's BS that so many restaurants either try to sell themselves as having "gluten free" options (but we can't trust their spatulas, their re-used pans/griddles/knives)OR they know they can't and they try to disclaim liability as in Domino's Pizza (they cannot promise you a gluten-free experience because they know they do not have separate cutting boards, for example, so they sell you a gluten-free pizza that's been cross contaminated and that's supposed to be disclaimed or waived away).

 

Restaurants CANNOT maintain the same degree of control AGAINST cross-contamination you can at home.  You've surely started to look at ingredients now and maybe have thrown out your old spatulas and wooden spoons and tried your best to sanitize and clarify all your cuttings boards, knifes/forks, cookware... have those restaurants?  

 

Also, have you ever looked at the ingredients of a commercial hamburger (such as those served in your local hospitals and cafeterias and found they were full of "malt extract" or "caramel color" or "yeast extract" or "modified food starch" and realized you'd get sick?

 

Someone said you just got diagnosed, you should be 100% focused on getting your gut better.  That is true.  What happened to me was I failed my blood testing (serology) very badly and then after getting my FULL diagnosis (after pathology and genetics) I had to go back after 3 months post dx.  I AGAIN failed the serology!  WHY?  My doctor told me, because I didn't try harder not to cross contaminate, and she knew I had shared a toaster with my family (I have a toaster oven and use a separate shelf for my own toast than the rack they throw their toast on.

 

I do NOT buy any regular pasta.  I only buy gluten-free pasta but I rough it on their bread... I do not insist my family switch to gluten-free so I don't have to deal with the cross contamination, so I have to remember not to taint the cheese and knives and cutting board but I let them use a plate for their bread and HOPE LIKE HELL the washer cycle removes gluten to less than 20 ppm...

 

DO YOU THINK A RESTAURANT WOULD GO TO THE TROUBLE?  I have to say the LEAST of your concerns is a waiter that dismisses you.  The kitchen staff will not be able to accommodate you UNLESS they are gluten-free and they KNOW HOW TO DO THIS IN A COMMERCIAL KITCHEN.  If anyone disagrees with me who works in the kitchen or chef business I would challenge them to say they are not in the >0.000001% of the population who gives a rat's ass about YOUR medical needs.

 

So yeah, the chips may be 100% corn and good for you for asking but they probably do not specially reserve their oil or their friers for your gluten-free needs.  If ONE wheat-coated onion ring or fish N chip is fried in their, you will FLUNK your next serology check (and your doc should be on you like stink on a monkey and follow up with you on your bloodwork to make sure you're clean).

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Hi, I just wanted to chime in.

So yeah, the chips may be 100% corn and good for you for asking but they probably do not specially reserve their oil or their friers for your gluten-free needs. If ONE wheat-coated onion ring or fish N chip is fried in their, you will FLUNK your next serology check (and your doc should be on you like stink on a monkey and follow up with you on your bloodwork to make sure you're clean).

While I do appreciate your enthusiasm, one instance of gluten should not cause you to " flunk your next serology". It can take months or a year to get your antibody levels all the way down. 1 instance of glutening should not be enough to raise your blood antibodies if you are otherwise gluten-free.

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^I agree. If one glutening caused your antibody levels to raise that much, then nobody would need to do a 12 week gluten challenge for diagnosis.

 

Lots of good points about cross contamination though. That is exactly why the more aware I get, the less I eat out. 

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.

 

Restaurants CANNOT maintain the same degree of control AGAINST cross-contamination you can at home.  

 

YOU RAISED MANY POINTS SO MY REPLIES ARE IN CAPS AND UNDERLINED. HOPE YOU CAN FOLLOW IT OK.

THIS IS NOT EXACTLY TRUE. MANY PEOPLE CO-EXIST WITH GLUTEN EATERS AT HOME

AND MANY RESTAURANTS DO AN EXCELLENT JOB AT FOLLOWING THE GIG KITCHEN SAFETY PROTOCOL. 

 

Also, have you ever looked at the ingredients of a commercial hamburger (such as those served in your local hospitals and cafeterias and found they were full of "malt extract" or "caramel color" or "yeast extract" or "modified food starch" and realized you'd get sick?

 

i CANNOT IMAGINE A BEEF BURGER HAVING ANY OF THOSE INGREDIENTS. DO YOU KNOW OF ANY PARTICULAR BRAND THAT ADDS ALL THOSE?

 

 

, so I have to remember not to taint the cheese and knives and cutting board but I let them use a plate for their bread and HOPE LIKE HELL the washer cycle removes gluten to less than 20 ppm...

 

it does

 

 

.  The kitchen staff will not be able to accommodate you UNLESS they are gluten-free and they KNOW HOW TO DO THIS IN A COMMERCIAL KITCHEN.

 

 

I AM NOT REALLY SURE WHAT THIS MEANS, BUT IF YOU MEAN NO RESTAURANT CAN PROVIDE A SAFE MEAL UNLESS THEY ARE

AN ENTIRELY G F ESTABLISHMENT, 

 I RESPECTFULLY DISAGREE WITH YOU. I HAVE DINED IN SEVERAL PLACES AND THEY DID NOT MAKE ME SICK AND I AM VERY SENSITIVE TO CC.

 

 If anyone disagrees with me who works in the kitchen or chef business I would challenge them to say they are not in the >0.000001% of the population who gives a rat's ass about YOUR medical needs.

 

MANY PLACES ARE TRYING VERY HARD TO ACCOMMODATE EVERYONE WITH CELIAC, GLUTEN INTOLERANCE AND FOOD ALLERGIES.MY BEST FRIEND IS A CHEF AND CATERER AND SHE DOES A GREAT JOB HELPING OUT G F PEOPLE. I HAVE EVEN HAD THE DINNERS THAT WERE SET ASIDE FOR ME AT WEDDINGS --AFTER TALKING WITH THE CATERER--NO PROBLEM. YOU NEED TO GIVE SOME CREDIT TO THOSE WHO ARE WORKING WITH THE CELIAC COMMUNITY TO BE AWARE OF DIETARY NEEDS

 

So yeah, the chips may be 100% corn and good for you for asking but they probably do not specially reserve their oil or their friers for your gluten-free needs.  If ONE wheat-coated onion ring or fish N chip is fried in their, you will FLUNK your next serology check (and your doc should be on you like stink on a monkey and follow up with you on your bloodwork to make sure you're clean).

 

NO ONE "FLUNKS" A FOLLOW UP CELIAC PANELS BECAUSE OF ONE CHANCE GLUTENING, IT DOES NOT WORK THAT WAY.

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Yes, there are many places who specifically work to accomodate celiacs. Places like California Pizza Kitchen, PF Changs, etc.

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Hi MsQuel and Welcome to the Forum.

 

I found your post to be full of anger and resentment.  You seem to be very frustrated with restaurants, the medical profession, and hamburgers?  I think your views are very unrealistic.  I live with gluten eaters and do just fine.  Dominos states that the gluten-free pizza is not safe for Celiacs.  I don't know where you are getting your hamburger but ground beef is perfectly safe for Celiacs.  Dishwasher will remove gluten, it's not GLUE.  Some chef's actually do give a "Rats Ass" when serving their food.  Lastly, one onion ring crumb in the corn chip oil will not make you "flunk" your next serology check.  

 

I would recommend you read the "Newbie 101" thread under the Coping Section.

 

Good Luck.

 

Colleen

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The only place I have been told for certain around me meets the requirements for keeping a meal gluten-free is Ted's Montana Grill. From what I've been told they have an entirely separate part of the kitchen with it's own equipment for gluten-free prep. As for regular restaurants, those that have a gluten-free menu should be well aware of the requirements to advertise the menu as being gluten-free (I actually used to work in restaurant management, and still see my old health inspector. He has informed me that when he inspects a restaurant that has a gluten-free menu, he checks their methods for preventing CC---this is not a requirement, he just does it because his son has a peanut allergy so he is aware of the risks of CC). If a restaurant were to tell me they could accommodate my needs, I would ask them what their safety methods are, and if explained well enough, I would trust them until I get glutened. Most managers are notified by servers when an "allergy" request is made, and will oversee the food prep, or come explain that a certain dish cannot be safely made.

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I have to say I'm in the minority here - I don't think restaurants have an obligation to let me eat safely.  If I don't feel they know what they're doing, I don't eat there.  Either we leave, or I have a glass of wine while everyone else eats and get something else at home, but I don't get angry at them. IF a restaurant says they have a gluten-free menu, though, and then it's clear that it's not safe for Celiacs (and not labeled as such), I have a conversation with the manager on the side to let him or her know my concerns.  

 

I do think the waiter was WAY out of line, though, and I would have gotten up and left.

 

I'm lucky that I live in a place with high Celiac awareness and there are quite a few restaurants that seem to know what they're doing.  That said, I think I recently got glutened - probably at home!

 

I agree that you should be letting yourself heal before going out to so many restaurants, though.

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I just presume that restaurants are unable to serve a gluten free meal, no matter the ingredients, simply because their kitchens are contaminated. 

Though I don't doubt that it could be possible to cook a gluten-free meal in just about any kitchen if the proper precautions were taken, I don't presume that any chef has the knowledge to do it properly, or the time to devote to my single meal. 

Every time I've ever eaten out, from just a salad to items specifically labeled gluten-free on the menu, I have been glutened. The only exception is a sushi restaurant near me where there are very few gluten items on the menu, and they mainly come out of the frier rather than the main prep areas. Even then I get glutened one out of every three visits.

 

I do look forward to the day when a 100% gluten-free restaurant opens near me. For now, I just count myself lucky that there is a gluten-free bakery about 45 minutes away.

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There are places that can and do do it correctly.  I think the key is working with a chef and not a cook. BIG difference!  HUGE.  To suggest a chef doesn't have the knowledge to prep a meal that is gluten-free is silly. They go to school to learn how to cook and they do cover things like allergies and cross contact issues.  I am not saying ALL chefs get it or are willing to go the extra mile but many are and they are trained.

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