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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.

I Dread Eating Out, Please Help
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22 posts in this topic

Having celiac disease has ruined the restaurant experience for me. i try to be clear about my condition to wait staff, and they are dismissive, resentful and always confused. Then i get to read down a long list of foods i can never eat again. I end up getting something plain like a salad. later i am asked if i got enough to eat. i lie. Sometimes i have to send my food back and this makes me feel like people think im high mantenence! im sorry if i sound bitter. but its an awful exp . need tips to make it easier :) thanks :)

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Your experience is rather different from mine. While there are a few ugly cases in the dozen years I have been doing this, I have found that the majority of restaurants listen and at least try to meet my needs. You are likely to do better with chains, where there may be a corporate awareness, and with upscale independents. Try asking to speak to the manager on duty. They will be more aware, and will understand the basic rule of business, which is that they want yours. The manager would rather see a bit of extra effort spent than see you walk out the door.

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Oddly enough, salads are rarely a safe food for me! Can't tell you how many I've gotten with croutons on them. Or they put them on and then pick them off. Or I'll get towards the bottom of the plate or bowl and there is the lone crouton. Gluten isn't an issue for me but eggs, dairy and other things are so bread and pasta usually isn't safe for me.

Daughter and I do best if we find a place that cooks from scratch and frequent it often. Get to know the staff. Tip well if they do your food right. Heck I even tip well if they don't. For the first time anyway... People who don't have food issues often don't understand.

Try ordering side dishes even if they aren't exciting. Applesauce, canned pears or peaches and usually even fresh fruit are usually good choices and free from cross contamination. Chili is usually safe (but ask to make sure). Soup is often not safe. Baked potatoes are usually safe. Mashed potatoes may or may not be. They might mess up and put gravy on there. The butter or margarine could have had a knife in there that had previously cut bread. Chicken breast may or may not be safe. Some contains wheat. Cottage cheese should be safe. And bacon. Or ham. You can usually ask for something like a sliced tomato.

Or you could try dining at places that offer a gluten-free menu. We have had problems with Olive Garden bringing us bread and putting croutons on the salad but others have had a good experience there.

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I hear you loud and clear and sympathize with you. when I first went gluten, dairy and soy free around Thanksgiving, eating out was too difficult for me because of the fear. now, I have been eating out maybe once a week at restaurants with gluten-free dedicated menus. so far so good. I still go through my instructions, explanations, letting them know I am not on the latest trendy diet, but will get sick if it's not right. sometimes the manager comes over to make sure it's all done right.

I won't lie and say it's not still scary, but I have been fine so far and it's nice. last night we went to Outback, and I had the best ribs.

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I'm right there with you. I've been avoiding eating out and the one time I did I got accidentally Glutened. Next week I'm out of town for work and I'm concerned about it but I'm staying somewhere where I should be able to get groceries instead. I just feel for me it's not worth it right now.

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I have had good luck at some of the chain restaurants like Oiutback, P.F, Changs, Texas Roadhouse, red Robin but they seem to be more aware and do offer a gluten free menu. When i go to a new place I usually ask for the kitchen manager and that seems to help. That's no to say that I haven't been served a salad witgh bread but returning it and reminding them it's gluten free or I get sick works.

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I find that the bulk of being able to eat out reasonable is VERY careful selection of the restaurants.

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You should also order some Triumph dining cards. The cards explain what the cook needs to know, and the wait staff can take it back to the kitchen. I think this site sells them.

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I understand as well. Eating out can be a crap shoot for me...sometimes I have no problems and other times it can be a nightmare...and sometimes, yes, I am forced to order something small in order to stay safe from a reaction but then I leave hungry. The other night, my husband and I went to Champps for the Super Bowl - I ordered a French onion soup sans bread and within an hour was in the bathroom (apparently even the presence of cheese was enough to cause a reaction), then later, I ordered something I thought was safe - a steak, white rice and steamed broccoli - and less than an hour later, I was back in the bathroom. It can be very frustrating sometimes!

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I understand as well. Eating out can be a crap shoot for me...sometimes I have no problems and other times it can be a nightmare...and sometimes, yes, I am forced to order something small in order to stay safe from a reaction but then I leave hungry. The other night, my husband and I went to Champps for the Super Bowl - I ordered a French onion soup sans bread and within an hour was in the bathroom (apparently even the presence of cheese was enough to cause a reaction), then later, I ordered something I thought was safe - a steak, white rice and steamed broccoli - and less than an hour later, I was back in the bathroom. It can be very frustrating sometimes!

Same here. I ordered a plain grilled fish at at restaurant, nauseated for hours until i finally threw it all up :unsure:

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I'm scared to eat out now too. The last time I was in the bathroom on and off for hours and for days afterward I was in extreme pain. I don't think it's worth the risk.

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I find that the bulk of being able to eat out reasonable is VERY careful selection of the restaurants.

True but once in a while you dont get to choose. Once I was visiting my parents and they really wanted to go out to this restaurant that specializes in pot pies and was really close by. So I was dragged along

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True but once in a while you dont get to choose. Once I was visiting my parents and they really wanted to go out to this restaurant that specializes in pot pies and was really close by. So I was dragged along

Order a glass of water (or wine, or coffee) and some ice cream. Let them sit and feel uncomfortable because you can't eat, rather than you be uncomfortable because you must eat. (And always have something in your purse :ph34r: )

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Order a glass of water (or wine, or coffee) and some ice cream. Let them sit and feel uncomfortable because you can't eat, rather than you be uncomfortable because you must eat. (And always have something in your purse :ph34r: )

This.

But also, people actually cannot "drag" you somewhere against your will (legally, anyway, since if they did, it would be kidnapping). I'm not trying to be pedantic; I feel it is an important distinction to realize that you are agreeing to go somewhere you otherwise would not go for the feelings of other people, not that you are being forced to go somewhere against your will. There are two reasons I find this distinction important: 1) it gives you back the power of the decision in your own mind, which mentally can make all the difference in the world and 2) it helps you realize what you are *actually* doing - enjoying a social activity with people you care about. If that means, in order to eat, you have to stop by a grocery store and buy a couple apples and a fresh jar of peanut butter so you have some food, so be it.

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I agree, it is really important you understand that you can choose.

I made all my family come to me for the holidays so I could be in control. I am off to visit 3 different sets of friends soon, and have confirmed with each that I will prepare my own food while there, taking my own utensils. All are fine with it.

Good luck, it can take a while to realize you do need to stand up for you health.

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True but once in a while you dont get to choose. Once I was visiting my parents and they really wanted to go out to this restaurant that specializes in pot pies and was really close by. So I was dragged along

My suggestion for that situation is to say something like, if you really want to try one of those pot pies then I'll be happy to keep you company but I'll just get a drink. And I'll say that we need to organise it so I can eat either before or afterwards. I don't want to deny someone the opportunity to try something they couldn't usually have (if they lived close by to this place I'd be annoyed!) but I'm not going to risk my health.

For any advance planned eating out my friends and family always let me pick (or I give them a choice of places safe for me and they pick from them). Spur of the moment stuff I see if there's anything I can have and if not, I have a drink and grab something later. On a family trip recently I couldn't eat much at all at my step brother's place but my brother would stop by McDonalds on the way so I could get fries and a drink which felt like a treat (plus I had food in the fridge in the hotel) and so I could be all "oh, it looks delicious but I'm really full" with all the family members I didn't know well and didn't want to get into it with.

it helps you realize what you are *actually* doing - enjoying a social activity with people you care about. If that means, in order to eat, you have to stop by a grocery store and buy a couple apples and a fresh jar of peanut butter so you have some food, so be it.

I really agree with this. Rather than feeling like you have no choice to be somewhere, or that you'd be better off missing out at home, you meet your physical needs and social needs but in a different way to how you might be used to. Now I eat out with friends to enjoy their company, not to have a great meal. I can eat well at home another time.

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Some good tips on these replies. I guess I would double upon on saying you would be very safe if the place met all of these criterias:

-Has a gluten free menu (shows they want our business, some places don't want to be bothered with it)

-Serves mostly homemade or unprocessed foods (steak houses are great, fast food is not a good idea)

-Has been recommended on this site by other users.

-Order safe options like baked potato over french fries.

-Test your waiter/waitresses knowledge. I always start the ordering process by telling them I am gluten free and asking them menu questions. Do your cooks change gloves, do you use separate fries, does this contain gluten, etc. If they don't appear knowledgeable, just tell them you have a severe food allergy and would feel better speaking with the manager to make sure everything will be ok. I try to be apologetic about it and have never had anyone be un-receptive.

I can't imagine not eating out! This is hard enough, so I hope this will help you.

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We went to Chipotle's last night. They are gluten free except for flour tortillas and they were so nice They made certain to change their gloves before fixing mine without me even asking! :D

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After three bad restaurant experiences while on vacation a year ago, I could not recover. I lost 15 pounds,and it has taken me the full year to gain it back. I was totally scared of restaurants. Although I had never had a bad experience at Outback, I wouldn't even eat there. I developed a fear of eating out - period! I still want to be a part of celebrations, etc., so I eat before we go and just have a glass of wine. I'm surprised at how enjoyable this can be. I pay no attention to what others are eating and can enjoy the conversation. We've done two vacations this way. I also carry cheese and pepperoni in my purse.

However, I wanted to celebrate Valentines Day and I got up the nerve to eat at Outback. I had a very good experience. The manager and server both reassured me. The meal was great and I had no repercussions.

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Also, just because you had one good experience at a restaurant, doesn't mean every experience there will be the same. Never let your guard down, even in seemingly safe restaurants that you trust.

 

I'd been going to this great pizza place.They have delicious and inexpensive gluten-free pizzas, and I never had a reaction...until last week. One more place to scratch off the list :(

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Used to eat out lots (pre-gluten-free) - love eating out :( .

Since gluten free, not so keen on going out to eat - just more reluctant.

Have yet to eat out and not be glutened :( . The restaurants are very helpful and I have plain grilled meat/fish and plain salad, no dressing.

No starter or dessert. Coffee to finish.

Never right the next day - but then again, I'm super sensitive.

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It wasn't like that though lol. Somebody thought it was a restaurant where you order ahead of time and just run inside and pick up the bags of food. It turned out to be a sit down place. Much to my dismay!


This.

But also, people actually cannot "drag" you somewhere against your will (legally, anyway, since if they did, it would be kidnapping). I'm not trying to be pedantic; I feel it is an important distinction to realize that you are agreeing to go somewhere you otherwise would not go for the feelings of other people, not that you are being forced to go somewhere against your will. There are two reasons I find this distinction important: 1) it gives you back the power of the decision in your own mind, which mentally can make all the difference in the world and 2) it helps you realize what you are *actually* doing - enjoying a social activity with people you care about. If that means, in order to eat, you have to stop by a grocery store and buy a couple apples and a fresh jar of peanut butter so you have some food, so be it.

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JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. 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This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. 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If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. 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