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Best Way To Deal With Servers?


annajazz

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annajazz Rookie

 So it begins, learning how to eat out.

 

So the other day I went to this local Mexican restaurant that I LOVE. 

So I, before becoming a Celiac, always got a platter of a shredded Beef Burrito, Mexican rice, re-fried beans, and, of course, chips and salsa.  

 

I went their last night and had a talk with the server asking her to talk to the cook to see if their was any flour in the re-fried bean, rice, or the shredded beef in the burrito (I was planning on just getting the innards and not the tortilla).

She became really hostile to me, like I was trying to find out their recipes or something and trying to change they way they cooked o.o . I explained to her that I could not have Wheat etc... that, for my safety, I was inquiring about a specific ingredient not all of them. 

 

Basically got to where I did not trust that she would make a point of asking so I requested to be served by someone else. The new server was very understanding (she told me how her child has a peanut allergy). So I found out that I just had to skip the Mexican rice, but got some creative rice w/other spices in it that the cook dished up :)

 

My main point is how do people deal with this? People who know someone with an allergy tend to be more understanding( I have concluded this because I also have 10 other food allergies, though easier to avoid), but why can't other people get it?

 

I just don't want to have a waiter/server not check or etc...when its very important. 

 

I guess the run in just kinda shocked me. Has anyone else had similar experiences, or was my server a rarity ? 

 

Thanks!

 

 

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GF Lover Rising Star

I feel I must remind Celiac's that cooks, servers, chefs or anyone else in the food industry is not responsible for what we choose to eat.  If someone chooses to eat in a facility that is not entirely free of gluten then you are taking a chance that you will cc yourself.  It really doesn't matter is the server is well informed or nice or indifferent.  For instance, you order a baked potato, it is inherently gluten free, the cook cuts the potato in half and dumps butter on it.  Two things happen, a knife that may be contaminated and butter that may be contaminated.  Do you take the chance?  It is your choice.

 

Colleen

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annajazz Rookie

I feel I must remind Celiac's that cooks, servers, chefs or anyone else in the food industry is not responsible for what we choose to eat.  If someone chooses to eat in a facility that is not entirely free of gluten then you are taking a chance that you will cc yourself.  It really doesn't matter is the server is well informed or nice or indifferent.  For instance, you order a baked potato, it is inherently gluten free, the cook cuts the potato in half and dumps butter on it.  Two things happen, a knife that may be contaminated and butter that may be contaminated.  Do you take the chance?  It is your choice.

 

Colleen

 

Well, I hardly believe they have to be responsible for our well being, but on the other hand I can't understand why it is so hard for them to ask the cook if they add wheat to any of their dishes. I'm talking about a mom and pop restaurant, not a chain restaurant where no one know whats really in anything. I chose a Mexican reason solely because this one does not serve a lot of flour containing anything other then tortillas.

I mainly posted here to ask how people cope with these instances of having people not believe/indifferent to something that would make one very sick.

 

It's coping, I'm trying to cope. I really did not post intending for people to give me a lecture on how I'm leading myself open to cc, I understand the risk. But I refuse to allow this intolerance to keep me lock inside at my own kitchen for the rest of my life. I just want some advise on dealing with this. I'm very shy and hate having to tell people I can't have gluten as is. Your reply was very insensitive. :'( 

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SkyBlue4 Apprentice

I'm too new to have any tips about eating out but this issue is addressed today at theglutensummit.com.

Listen to the presentation by Melinda Dennis. She is speaking on this very topic and has some suggestions.

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NoGlutenCooties Contributor

I am relatively new at this too, having been gluten-free for only 6 weeks and I've been intimidated by the idea of eating out.  But I have done it a few times now, starting with breakfast.  I wait to order last so that I have the waitress' full attention and less chance that they will forget about my request while they're taking additional orders.  I start with, "I hate to be a pain, but I am very allergic to wheat.  Could you please make sure that no bread comes anywhere near my plate?" - I know Celiac is different than an allergy, but most people understand the concept of an allergy.  Once they realize that you realize you're asking them to do a little extra work, I have found that they are more receptive.  Yes, it should be part of their job - but it's all part of managing people and their perceptions.

 

The one time I ate at a buffet I waited until one of the wait staff was not busy and just standing to one side and went up to her to explain my situation - "I hate to be a pain, but I'm gluten intolerent" - then I pause to see if they seem to know what that is or if they look at me like I just started speaking to them in a foreign language.  If they seem to understand what I'm saying I keep going, "Could you please tell me if the sauce on the chicken was thickened with anything?" - in this case the waitress could not have been nicer and went into the kitchen and grilled the chef.  She even brought the jar of BBQ sauce out to me so I could read the label for myself to know that the ribs were safe - and she double-checked with the chef to make sure he hadn't augmented the recipe with anything.  (I know many Celiacs avoid buffets like the plague and going forward I will try to as well - but in this particular case it was a small group of people and the restaurant was not that busy.)

 

I suggest trying to get to the restaurant when they aren't as busy - do dinner a little earlier than the usual dinner rush crowd.  If they aren't as busy, they'll have more time to pay attention and will be more likely not to mind doing something a little extra on the side for you.  If you know where you're going ahead of time, check their website and/or call ahead.  They'll appreciate that you gave them a little extra time to do what they need to do.

 

I went out to an Irish Pub just last night for a drink with friends.  I ate ahead of time "knowing" an Irish Pub was not likely to have any snacks that I could eat.  To my surprise the waitress overheard me tell someone that I was gluten-free and she brought me their new gluten-free menu and explained how the entire staff had to go through training recently to learn what it meant to be gluten-free.  They even had gluten-free rolls for their burgers!  And the waitress made it a point to tell me that they keep their gluten-free rolls separate from their regular ones.  I didn't try them, because I had already eaten... but if an Irish Pub can get with the program it gives me hope for others.

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IrishHeart Veteran

I'm too new to have any tips about eating out but this issue is addressed today at theglutensummit.com.

Listen to the presentation by Melinda Dennis. She is speaking on this very topic and has some suggestions.

 

I was just going to post this exact same suggestions and you beat me to it!   ;) so I will just say "do this".

Melinda Dennis  is wonderful ---as is her book Real Life with Celiac Disease.

I highly recommend it to all celiacs and gluten- intolerants alike.

 

Colleen's reply raises an important point. 

 

I recently got hit at a nice little breakfast/lunch place where they offered me many G F options, told me they had dedicated space in the kitchen,

used UDI's bread, knew what cross contamination was, etc. etc...They even offer meals in individual skillets...and yet, over the course of a few weeks, I had a plethora of symptoms return because I trusted them several times. My own fault and I paid for it and now, I have to go back in there and tell them what happened and hope they make some changes. But I don't expect them to do it for me. I just want to keep future

G F diners that go in there safe. If you say we have gluten free meals, then make sure they are really gluten free.

 

Using the same spatula to butter everyone's toast, using a shared grill, the same big jar of salsa or mayo......these are things

that may be overlooked by someone--even though they mean well and even if they understand "wheat allergy" over "I have celiac".

Dining out is a crap shoot, I am afraid.

 

I have been able to do it successfully many times at more upscale places where they make things from scratch,  at a wedding where the caterer understood what I needed  or at places like Bonefish Grill where the staff has been trained by people from GIG.

I got burned at a "vegan/gluten-free" place in NYC last summer because they had "gluten free items" yes, but their prep area must have been

a cesspool of cross-contamination.

It's risky business, either way.  :unsure:

 

I usually ask if they have dedicated kitchen space and if they can prepare anything gluten free. If they say yes, or tell me how they do it

(separate pan, ingredients, etc) then I'm comfortable. Otherwise, I find somewhere else to dine.

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bartfull Rising Star

I don't think Colleen's answer was insensitive. It's just the truth. I have only eaten in restaurants a few times in the past two and a half years. Twice it was at a place that my "son" worked, so I knew he would take care of me. Once was at Outback (they have a gluten-free menu and good ratings from the celiac crowd.)

 

My son doesn't work at the first restaurant anymore (off to college), so I won't be going there anymore. And Outback was OK. I din't get sick, but the food was nothing to write home about. So now the only place I would risk is a pizza place about 50 miles up the road where one of the family members is celiac, so they do it right. I know several celiacs in my area and they have all eaten there many times without getting sick. I haven't had a chance to get up there yet because I work so many hours, but one of these days I will.

 

Other than that, I only eat what I cook at home. I still go out and enjoy the company of my friends, I just eat first. (Then have ice cream when I get home. :lol: )

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notme Experienced

I mainly posted here to ask how people cope with these instances of having people not believe/indifferent to something that would make one very sick.

 

that is the main problem:  most people don't even know what gluten is (or why we are asking all these crazy questions lolz) - to *us*, 'do you have a dedicated gluten free fryer?' is an important question - to them,( unless, as you pointed out, they are allergy savvy) it's over the top.  most of the time they don't know the answer or they may tell you the wrong thing - like, sure, the fryer is dedicated.....  it's too late to find out after you are sick that it was dedicated to frying things (what?)

 

my sister is the office manager of a pretty nice restaurant - i can't eat there, even though they have a gluten-free menu - they do not have separate prep areas, they use the same grill to cook everything, and there is no regard to cc, as bread is 'harmless' if they just take it off the plate.  BUT they still tell their customers that their food is gluten-free, they *assure* them.  i would be sick as a dog if i ate there.  the only reason my sister knows that (and complains loudly to them ) the food isn't safe for celiacs is because i have it.  but most people don't know any celiacs  :(  or even know what it is :( or what gluten is, for that matter.

 

you don't have to hide in your kitchen, but you might be stuck in the bathroom  :o  because you do take a chance if you eat out.  i am speaking from a dumb point of view confession that i not only got hit once (last month) (and i quizzed servers and they told me what i wanted to hear = you can eat here, no worries. but they were wrong and guess who had to pay the piper?  not the server!)   as soon as i got over the first one (14 days of misery) i went right out and ate at a place that i had eaten safely before, only to get hit again (another 14 days) it's gonna be awhile before i get my nerve up again!  as a former 'restaurant snob foodie' i say to you:  good luck  :) 

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ItchyAbby Enthusiast

How do I deal with servers? I don't*. It's not worth the risk to me. If I get glutened, I will be covered in blistering hives for at least two weeks and be battling overwhelming anxiety that disrupts my ability to do anything. I'd rather cook for myself and know it's safe, than try to guess as to whether a server is really "getting it". Colleen's response did not seem insensitive to me either - she is just telling it to you straight. There is no "magic formula" for speaking to servers that's going to keep you safe. We cannot make them understand if they do not already.

 

So, the issue is that you may need to re-orient yourself a bit, socially speaking. I had to and am still working on it. It's awkward, yes, but a small price to pay for not having my life completely disrupted. What are some other things you like to do with friends that do not involve food? Museums/galleries, hiking, music/performance, classes, lectures, farmer's markets... the list is endless. It's easy to think "Woe is me! I'll just have to hide in my house now that I cannot eat gluten" when first diagnosed. But you'll adjust and find new ways to enjoy yourself, safely. I started taking sewing classes and attending a Friday night Sew-cial at the studio where the classes are given - lots of people show up and work on their individual projects, there's wine for those who wish to imbibe and music playing. It's been a great way for me to feel less isolated and I get to bring home new garment I made! You are going to have to get a bit creative with your social activities. This can be good thing.

 

You'll also get really good at packing snacks to bring with you everywhere. Some of my favorites: pureed soups in a little mason jar with a good lid (squash soup!); gorp (nuts, seeds, dried fruit, a lil chocolate); jerky or I even just pack a little jar of cooked bacon to snack on; fruit; tortillas or naan (gluten-free of course. this is my fave recipe: Open Original Shared Link).

 

And in the event that you do go out, you don't have to eat. Just have a drink and enjoy your companions (eat beforehand and bring snacks)

 

*Edited to add: Meaning, I do not have to "deal" with servers because I do not go to restaurants that aren't 100% gluten free (My city has a few dedicated gluten-free restaurants, thankfully). Maybe see if your town or city has any such options?

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love2travel Mentor

When I go out to eat (almost never as the nearest safe place to eat is three hours away), I call ahead to speak with the chef. As you are shy, this may help. It is understandable not to desire unwanted attention but you will need to become more assertive out of necessity. If the place does not feel right, don't do it. I would recommend not going to fast food places or chains, either. By no means ever give in to something that sends you warning signals because this is your life.

Eventually, this will become second nature and you will be telling us what works for you!

BTW, if a server is rude, the manager needs to know about it.

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w8in4dave Community Regular

I went to a restaurant one time, got their gluten-free menu Ordered the Steak and Potato. I did tell the waitress I was Celiac. And when my steak came, there was a nice slice of bread across the top of the steak. I just looked at her and said " I am so sorry!" I cannot even have a piece of bread touching my plate let alone my steak" So she took it back and they re cooked me a steak and a new potato. Yes it was a different steak. I made sure to get a good look at it to make sure!! So some waitresses and waiters get it some don't! Why would I order off the Gluten Free menu just to get a slice of bread across my steak? Some just do their job and "Forget" that the person at table 2 said she was Celiac. It's a chance I take every time I go out to eat. 

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luvs2eat Collaborator

How do I deal with servers? I don't either. I've had too many experiences where I've talked to the server and the manager only to have the cook/chef mess it all up... flour tortilla strips in a salad that isn't supposed to even have tortilla strips in it (like Malibu salad w/ fruit as opposed to taco salad)... assurances from the server that there is NO wheat/gluten in the salad only to find fried Chinese noodles covering the bottom of the bowl (after I'd eaten 1/2 of the salad) ... ordering rice pudding and having the server almost knock the spoon out of my hand as I was putting the first bite in my mouth to tell me the rice is really orzo pasta (and the server who took my order was supposedly a celiac). With the best of intentions, they will poison me. If I don't cook it, I don't eat it.

 

BUT... I love visiting my daughter in Portland, Oregon. I've had many delicious gluten-free meals in restaurants there. They totally "get it."

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Pegleg84 Collaborator

Yep, taking a risk wherever you go. However, if you DO decide to eat out (and many of us do), then a server who won't take you seriously is not a good thing. You are perfectly within your right to ask for another server, or ask to speak to the chef directly, or say you can't eat there and just leave. You are not trying to steal their recipe.

 

I've gotten into the habit of asking about what I can eat the moment I walk in the door, before I'm even seated (if I'm going out with some friends, then I do my interrogation when the wait staff first comes to the table). If they seem clueless, I walk out. If I've planned ahead where I want to eat, I email or call and find out what they can do. I also appreciate them being honest and saying no, we can't feed you safely.

 

If this place is somewhere you want to eat at frequently, then maybe it's a good idea to chat with the owner (when they're not busy), and find out if you really can eat there safely or not. A bit of awareness can go a long way.

 

Hope you got through your dinner safely!

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ItchyAbby Enthusiast

 

 

BUT... I love visiting my daughter in Portland, Oregon. I've had many delicious gluten-free meals in restaurants there. They totally "get it."

That's my city! Did you know that we had 4 totally gluten-free restaurants open up just this year? :)

 

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upsilamba Apprentice

That's my city! Did you know that we had 4 totally gluten-free restaurants open up just this year? :)

 

To quote my favorite sage on food, I want to go to there!!! But seriously, my boyfriend and I have been talking about moving to Portland since we went there on vacation last spring (right before i got dx'd, so I didn't sample any of the apparently glorious gluten free offerings...). I think i need to shift into hard-core lobbying mode now, haha.  :D

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squirmingitch Veteran

annajazz, Your question was how do we deal with the server? The first thing wrong with your question is that you seem to think the server is the only person you have to worry about. That's the first mistake. You have to worry about every single person who works at that restaurant & enters the kitchen. You not only have to worry about the chef & other cooks who are on duty while you're there but the chef & other cooks who took the shift prior or even the day prior. There are 1001 ways to get cc'd in a restaurant. 

gluten-free Lover (Colleen) was not being insensitive in the least! She was trying to help you & teach you. If helping & teaching is insensitive then count me insensitive also. Colleen was being caring & trying to protect you. It was insensitive of you to throw that back in her face!

 

I have worked in restaurants (some of them very upper crust) & been back there in the kitchen. I know what goes on back there & it isn't pretty! It is disgusting even when one does not have to be gluten-free or does not have severe allergies to foods. Employees putting their fingers in foods & taking bites b/c they are hungry & don't have time to eat or just "feel" like tasting this or that. I have seen butter come back from tables that got scraped into a big bowl & then used in the mashed potatoes or to fry eggs in. No, they aren't supposed to do these things but sister, if you think for 1 minute that stuff doesn't go on then you need to think again. Spoons or spatulas dropped on the floor, picked up & used; maybe they got wiped off on a filthy apron. I could go on & on with what goes on in the kitchen alone.

And then there's what goes on outside the kitchen that you can see if you observe long enough. Wait staff putting their fingers in drink glasses to pick them up 4 or 5 at the time to clear a table & then turn around & come right back out of the kitchen with their fingers on the rim of YOUR drink. How many times pre gluten-free did my hubs & I find lipstick on our glasses? It may have gone through the dishwasher but there was still lipstick on them when we got our drinks served in them. Silverware with fingerprints on it or dried food particles on it. What is laying on my plate beneath the food that is piled on it? I can't see it so I don't know.

Your life changed forever the day you were dx'd with celiac disease. Please wake up & realize that fact. You can not safely do the things you used to do. None of us are happy about that but we deal with it & are thankful we don't have some disease there is no treatment for. Annajazz, please realize I'm truly only saying this for your good. Eating out now is very serious business & you need to realize just how serious it is & how easily you can get cc'd. Eating out is playing Russian Roulette every single time. 

The others have given you great tips for dealing with the eating out thing. Call ahead & explain you have to bring your own food & you will find most restaurants agreeable. Eat before you go. Have a drink & enjoy the company. Treat yourself with something special to eat when you get home. Carry snacks always!!!!! But please don't think you only have to worry about the server or the ingredients list on a particular BBQ sauce. There are 1001 ways to get cc'd.

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JustCricket Newbie

I was a server, and occasionally got asked questions like this. We served an international population, too, and needed to be mindful of vegetarianism, and such. 

 

This is how I normally handle it, where ever I go. I will ask the server or cashier, when they have a moment, something like, "I'm sorry, I know you're busy, but I was wondering if you could help me figure out if I can have ___. You see, I can no longer eat anything with wheat or gluten." You might also call the manager or ask to speak with the manager, who would have access to their ingredients lists. 

 

However, if you use an approach like that, and still get a bad response, it's the server, not you and not your dietary restrictions, that are the problem.

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NoGlutenCooties Contributor

I think the bottom line is that you can never be 100% safe eating out at a restaurant.  But there are many, relatively simple things you can do to make it much safer.  Should you eat out all the time, no - but anyone who gives a hoot about their health shouldn't eat out all the time - celiac or no celiac.  But the reality is, is that sometimes it can't be avoided and sometimes it's just something you want to do on occasion.  There are ways to make it a safer, enjoyable experience.

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CK1901 Explorer

I got diagnosed with celiac disease about two years ago. In the beginning, it's difficult to give up basic things like going out to eat on a regular basis. The truth is that eating in most restaurants can be an unpleasant experience if you just show up expecting the staff to competent & accommodating. I hate to say it, but my general rule of thumb is to give people very little credit. I used to waitress for several years before I was diagnosed. From my experience, the opportunity for cross contamination and mixing up plates/orders is extremely high in most restaurant kitchens. It's generally a busy, fast paced environment. People are often operating in a mode that's just "go go go" without a lot of thought or consideration happening. Additionally, they aren't necessarily educated about the ingredients included in each dish since half the time it comes pre-made, frozen, or out of a giant bucket. (Nasty I know.)

 

 

 I generally try to avoid eating in restaurants that do not have gluten free menus WITH separate prep areas. Occasionally I end up making a concession (usually at the behest of some work, family, or social obligation.) In those instances, I would recommend calling ahead and asking to speak with a manager. When you arrive at the restaurant, ask for the manager again and explain that you called ahead. They will usually hook you up with a good server if you've already proven yourself a high-maintenance patron. On top of that, make it known that you are a GOOD tipper if there is a specific place that you like to frequent. We can't spend all our time worrying about coming off as neurotic or difficult, though I admit it's hard. My best advice is to make the extra work worth their while. 

 

Chain restaurants can sometimes be the safest option. I've had really good experiences at Uno's, Outback, and so-so experiences at PF Changs. (I can't tell if I got sick from Changs because it's just kind of gross or because it was glutened. Other times it's been fine.) I've had several good experiences at high-end restaurants WITHOUT gluten free menus. I believe this is because there tends to be less traffic and the chefs will sometimes come out and talk to you directly.

 

Avoid the Green Turtle and any other restaurant that has a "gluten free" menu with a clause about their staff "not knowing the intricacies of celiac disease." (That clause is down right offensive, IMO and those types of menus are deceptive/should probably be outlawed.)

 

I know it's a bummer because it becomes automatic as time goes on. I've learned to love cooking at home!

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Coconutkris Newbie

Well, I hardly believe they have to be responsible for our well being, but on the other hand I can't understand why it is so hard for them to ask the cook if they add wheat to any of their dishes. I'm talking about a mom and pop restaurant, not a chain restaurant where no one know whats really in anything. I chose a Mexican reason solely because this one does not serve a lot of flour containing anything other then tortillas.

I mainly posted here to ask how people cope with these instances of having people not believe/indifferent to something that would make one very sick.

 

It's coping, I'm trying to cope. I really did not post intending for people to give me a lecture on how I'm leading myself open to cc, I understand the risk. But I refuse to allow this intolerance to keep me lock inside at my own kitchen for the rest of my life. I just want some advise on dealing with this. I'm very shy and hate having to tell people I can't have gluten as is. Your reply was very insensitive. :'( 

Hi Anna,

 

I'm extremely sensitive too, but I just think they were trying to explain that eating out is risky, regardless of what the server does...

 

I just was recently diagnosed with Celiac, though I've been wheat free for years, and am dealing with this issue too.  I have eaten out almost daily for the last 4 years because I am always on the go... I live in a pretty upscale area with lots of health-conscious people and organic healthy restaurants but even at these places people give me looks when I ask-  I feel like most people just do not understand what Celiac Disease is- it isn't the same as someone with a sensitivity- one crumb and you could be screwed!  I am trying to sort out what I am going to do for food/eating...it seems like the only safe thing is to make all your food in your own safe gluten free kitchen.  Getting a smoothie or a juice seems like it is likely safe...but anything else worries me.  I recently got lunch from a place that has a gluten-free menu. I was very clear with the server.  Well- a few bites into my food and I realize it isn't the typical gluten-free crust I get when I eat at this place...I call back the server- yep, they made a mistake and I just was glutened..lesson, it isn't even safe to eat at a place that has a specified gluten-free menu!

Another less from another restaurant- they have a separate gluten-free menu with things like gluten free pasta and gluten-free pizza. I ask, are your gluten-free pizzas cooked on the same surface as the wheat ones?  They went to find out and the answer was yes. So, that pizza is NOT gluten-free, it is wheat-free and there is a BIG difference.  Sigh. 

 

Such a bummer.  Being social is seeming incredibly tricky...people just don't get that you can't eat anything and everything like they can.  People think it is a choice, or you are being picky....ugh...hello, my life and well-being are determined by every meal!

 

I don't have much advice, but you are definitely not alone in this whole eating-out dilemma.  

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squirmingitch Veteran

Hi Anna,

 

I'm extremely sensitive too, but I just think they were trying to explain that eating out is risky, regardless of what the server does...

 

I just was recently diagnosed with Celiac, though I've been wheat free for years, and am dealing with this issue too.  I have eaten out almost daily for the last 4 years because I am always on the go... I live in a pretty upscale area with lots of health-conscious people and organic healthy restaurants but even at these places people give me looks when I ask-  I feel like most people just do not understand what Celiac Disease is- it isn't the same as someone with a sensitivity- one crumb and you could be screwed!  I am trying to sort out what I am going to do for food/eating...it seems like the only safe thing is to make all your food in your own safe gluten free kitchen.  Getting a smoothie or a juice seems like it is likely safe...but anything else worries me.  I recently got lunch from a place that has a gluten-free menu. I was very clear with the server.  Well- a few bites into my food and I realize it isn't the typical gluten-free crust I get when I eat at this place...I call back the server- yep, they made a mistake and I just was glutened..lesson, it isn't even safe to eat at a place that has a specified gluten-free menu!

Another less from another restaurant- they have a separate gluten-free menu with things like gluten free pasta and gluten-free pizza. I ask, are your gluten-free pizzas cooked on the same surface as the wheat ones?  They went to find out and the answer was yes. So, that pizza is NOT gluten-free, it is wheat-free and there is a BIG difference.  Sigh. 

 

Such a bummer.  Being social is seeming incredibly tricky...people just don't get that you can't eat anything and everything like they can.  People think it is a choice, or you are being picky....ugh...hello, my life and well-being are determined by every meal!

 

I don't have much advice, but you are definitely not alone in this whole eating-out dilemma.  

I am sooooo glad you "get it" Coconutkris! We are responsible for our own health & can't rely on anyone else to take care of it for us. We have to protect ourselves! As to social; take it as an opportunity to gently educate those who have no clue. You actually might save a life by alerting someone to the possibility they may have celiac disease but were clueless as to the symptoms. Most of all, we have to learn to be strong & self advocate. Stand your ground & you'll be fine. 

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IrishHeart Veteran

.  I recently got lunch from a place that has a gluten-free menu. I was very clear with the server.  Well- a few bites into my food and I realize it isn't the typical gluten-free crust I get when I eat at this place...I call back the server- yep, they made a mistake and I just was glutened..lesson, it isn't even safe to eat at a place that has a specified gluten-free menu!

Another less from another restaurant- they have a separate gluten-free menu with things like gluten free pasta and gluten-free pizza. I ask, are your gluten-free pizzas cooked on the same surface as the wheat ones?  They went to find out and the answer was yes. So, that pizza is NOT gluten-free, it is wheat-free and there is a BIG difference.  Sigh. 

 

 

 

Just posted this on another thread, but it seems to be relevant to this one, too. Forgive the old "cut and paste" ...I'm lazy today. :D

Here goes.

 

A restaurant that boasts a "gluten free menu" does not guarantee safety for people with diagnosed celiac disease.

 

Once I see HOW and WHERE the food is being prepped in some kitchens and the surly/dismissive attitude of the waitstaff regarding gluten free items,

 

I have determined many times that the only safe gluten free thing I could eat in the place....is the menu itself.  <_< 

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powerofpositivethinking Community Regular

I can't remember exact wording, and someone please jump in if you do, but it was something to the effect of, "I'm on a medically necessary or doctor directed diet, and I am unable to have gluten because of celiac disease."

 

Dennis said that using those words tends to make others take it seriously rather than thinking you're just a picky eater.

 

 

I'm too new to have any tips about eating out but this issue is addressed today at theglutensummit.com.

Listen to the presentation by Melinda Dennis. She is speaking on this very topic and has some suggestions.

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IrishHeart Veteran

I can't remember exact wording, and someone please jump in if you do, but it was something to the effect of, "I'm on a medically necessary or doctor directed diet, and I am unable to have gluten because of celiac disease."

 

 

 

 It's almost what I say.

 

"I have Celiac disease and I cannot have any gluten. Not a speck It makes me very sick and almost killed me.  Do you know what gluten is, hon?"

 

is s/he says OH yes!....we go from there.

 

I never say "gluten allergy" because that is not what we suffer.

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      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
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    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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