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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.

Social Implications
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19 posts in this topic

I found out earlier this week that I have celiac disease. At first, removing gluten from my diet sounded difficult but doable. As I learn more, I'm realizing that pretty much everything that I come in contact with needs to be evaluated for gluten content or contamination. For someone who is 28 years old, who eats out with friends/family almost exclusively, it seems like becoming gluten-free is going to be nearly impossible without making significant changes to my social life.

If you were diagnosed as an adult, how did you handle the transition?

Thanks!

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I think the older you are at diagnosis, and the longer you have suffered, the more willing you are to buckle down and live with the restrictions. Yes, at first they can be very isolating until you learn how to handle social situations and be assertive. I think, for males particularly, there is a certain sense of machnismo associated with having to be different :) They are less comfortable with standing out from the crowd and making their needs known, so it is tougher for them. Women are used to having men roll their eyes about things they say or do, so it is more like water off a duck's back. You are going to have to develop some waterproofing :lol:

Yes, it does require some changes to one's social life. The old days of going out anywhere to eat anything are gone :( That great little bistro that just opened on the corner may, or may not, be able to accommodate you safely. Your buddies will want to go places that you 'know' are inherently unsafe for you to eat at. You will either have to go with them for their company and bring something for yourself, or ask them if you could go somewhere else. When it comes to social entertaining in the home, it is most likely going to be your home so you can control what's in the food. When you are going to catered functions, you will need to contact the caterer ahead of time and see if something can be worked out, or else take your own food to be safe. Oftentimes, there are some things that will be inherently safe, vegetable and fruit platters and the like at a buffet, undressed salad and baked potato. But generally in a restaurant you are going to have to make a special order, either by talking to the chef or manager beforehand, or the waiter at the table and asking him if you can talk to the chef. You will learn ways to do this discreetly. More and more restaurants are getting used to such requests and are happy to accommodate. You tell the chef how you want your food prepared, either directly or through the waitperson.

But right now, you need to learn where gluten lurks and I would give up the eating out for a bit, if I were you. Get comfortable with the diet first, then you will handle yourself confidently when you go out.

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I just found out today although I suspected for awhile that my testing was going to come out positive. I posted earlier that I'm Italian and so much of our social life and culture is built around food. I'm struggling with this myself and grieving the losses involved with it.

The good thing is people on here have posted so many places that will accomodate. I figure there's always grilled meat without any sauces on it, salad, veggies and fruit at nearly every restaurant. Baked potatoes will be a possibility. Mexican food will have tacos on corn tortillas or just order the meat with a salad. I need to find out if they put gluten in beans at mexican restaurants. Salad dressings are a problem often, but I can deal with olive oil and lemons when I'm out.

Potlucks make me sad. I am in MOPS at my church and we have the best potlucks at our meetins. I am so sad not to be able to eat all the yummy stuff the girls make. I'll be the one with a plate of cut up fruit at my table.

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Potlucks make me sad. I am in MOPS at my church and we have the best potlucks at our meetins. I am so sad not to be able to eat all the yummy stuff the girls make. I'll be the one with a plate of cut up fruit at my table.

But not for long. I used to feel that way too, sometimes still do get a bit miffed that nobody cares particularly, but I got my revenge last week at a neighborhood get together when the one person there who is "the" acknowledged baker in the group, sells her stuff at the local farmers market, said "OMG, who made this delicious cake?"

:lol:

I said I did.

"Is it GLUTEN FREE?!!!"

:lol:

Yep. And I know it was the best thing there because it was the only thing I ate :D .. :rolleyes:

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But not for long. I used to feel that way too, sometimes still do get a bit miffed that nobody cares particularly, but I got my revenge last week at a neighborhood get together when the one person there who is "the" acknowledged baker in the group, sells her stuff at the local farmers market, said "OMG, who made this delicious cake?"

:lol:

I said I did.

"Is it GLUTEN FREE?!!!"

:lol:

Yep. And I know it was the best thing there because it was the only thing I ate :D .. :rolleyes:

That's great and so funny!! I think I'll have to make things to bring to potlucks more often. We take turns bringing food but maybe I'll be bringing every time so I can eat something. We have my first potluck at church this Sunday and part of me is dreading it but I want to go and deal with this sooner than later. I hope nobody makes anything too amazing looking.

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As we say here Down Under, "Good on ya mate!" Way to go.

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But not for long. I used to feel that way too, sometimes still do get a bit miffed that nobody cares particularly, but I got my revenge last week at a neighborhood get together when the one person there who is "the" acknowledged baker in the group, sells her stuff at the local farmers market, said "OMG, who made this delicious cake?"

:lol:

I said I did.

"Is it GLUTEN FREE?!!!"

:lol:

Yep. And I know it was the best thing there because it was the only thing I ate :D .. :rolleyes:

Okay, do tell...what did you make!?

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It's difficult. Good luck with it. I have a small social life as it is, which has probably worked in my favor. But it will be a drastic change, as far as restaurants. Be prepared to perhaps do a lot of sitting around and sipping on coke while others eat, if you still want to be able to hang out with friends.

I've been lucky to be surrounded by people who are willing to accommodate (family mostly) and then friends, have gone out of their way several times to eat at a place where they know I can (which is maybe 1 or 2). But again, while I appreciate them being nice, I also feel bad that they'd have to be put out all the time...so would be willing to go along and just drink coke if I had to. I did that once...I wolfed down some safe food at home and then met up with them at the restaurant and got some vodka/coke (lol) so I could still enjoy the socialization.

It's unavoidable that you'll stand out. and I'm sure there will be those people out there who will suspect you of being high maintenance/eating disorder/annoyingly finicky etc. But, eh, they just don't understand. At work, a few times earlier on I could feel people sometimes being slightly insulted if I didn't accept their food, or kept bringing up the fact that I couldn't eat something, etc. Or, initially they didn't take it seriously or believe it was restricting as I was saying. But now pretty much everyone there knows (and believes) my deal and leave me alone about it,and/or make efforts to accommodate.

And hey, for better or worse, you will get some attention from it. Many times people at work and friends will strike up a conversation with me because they heard something about 'gluten' on the radio, or saw a gluten free menu somewhere and make an effort to come tell me about it...it's kinda sweet. So, there's a ray of light at the end of the tunnel. I ain't gonna lie, it IS a drastic change. You have to change your thinking. You no longer are just free to eat food, period. But...slowly it turns around...

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Am I being a naive newbie in thinking that restaurants can't be that bad? I just got diagnosed as I said earlier but I'm thinking of restaurants around me and I can't think of any, except chinese, that I won't go to for fear of being glutened.

I can order a burger or grilled chicken breast sandwich without the bun. A baked potato and salad if I'm really desperate and there's nothing on the menu. Do olive oil and lemons for dressing if I'm unsure. At mexican restaurants I can get tacos on corn tortillas and a side of beans. Or I can just get the meat and some veggies. I know I have to ask questions of the waiter to be sure, but am I missing something? Why are people going out and not eating anything at all? I mean even in a chinese restaurant I might order some steamed rice and a small salad. Heck they might even make fried rice with no soy sauce if you ask, but maybe that's dangerous for contamination. Even in Italian restaurants they have chicken dishes and veggies that you can get without sauce or whatever you have to do.

I do live in So Cal near the beach where everyone is on some sort of diet fad, LOL, so waitstaff is used to odd requests and everybody offers low carb something or other.

Is it that the restaurants in your areas aren't accomodating or is it not trusting them to do what you ask? I'm just curious and wondering if my thinking is wrong.

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It's not the obvious gluten you have to worry about, it's the hidden gluten and the cross-contamination. A kitchen grill that has grilled gluten needs to be thoroughly cleaned before your food touches it. There is flour often flying around in kitchens. Staff handle gluten and then handle your food without washing their hands. The meat in the Mexican restaurant has had flour added to it. The tortillas have been prevented from sticking together by a sprinkle of flour when they could have used cornmeal. The chicken in another restaurant has all been pre-breaded. The steak has all been marinaded with something with soy sauce (yeah, I had it happen). The possibilities, unfortunately, are endless unless you have a restaurant that understands gluten.

I went to a high-price golf resort to have brunch at their clubhouse. My gluten free sister was also with the group. We both decided to have the breakfast, eggs, bacon, mushrooms, hashbrowns (I omitted the tomatoes) as the safest choice. When the plates appeared the hashbrowns were formed into triangular shapes. I asked the waiter if they had gluten because I had never seen hashbrowns like that (looked they came out of a box), he had to go back and check with either the chef or the box they came out of, and informed me yes, they did. That is a sampling of why restaurants are hard and recommended for experienced gluten free diners.

I am sure you will get lots of other responses to this question :)

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You know... there are some good social implications, too. For example, I always knew my friends were kind and compassionate people (they wouldn't be my friends otherwise!), but I didn't know just how much they would go out of their way to help me feel comfortable eating with them. They give me the last word on restaurants when we go out to make sure I can eat something. When we eat in (usually potluck style), they share the ingredients and exactly how they made something so I can decide if I want to eat it -- there's no pressure. No one will be miffed if I hear something that makes me not want to take the risk. Often they'll be grateful so that they know for next time. I've yet to be glutened by my friends because they're SO careful about being honest and thorough with me about preparation and ingredients (down to things like "we used a jar of mayo that had already been opened" -- I know right there I can't eat it).

They've also gotten nearly as obsessive as me in finding new gluten-free products and places to eat. I get calls that such-and-such place has a gluten-free menu, or how they just tried a gluten-free cookie that they saw at the store and they LOVED it, so I have to try it.

The transition was still tough, but if I didn't have such good friends, I'm sure it would have been much, much tougher.

There are times when we go out that things don't work. For example, I got glutened with some Mexican food that I thought was safe (I'm guessing CC), so the next time we went out I tried to be extra careful with how and what I ordered, especially since I was still feeling the GI effects of that recent glutening. The wait staff and cooks didn't seem helpful -- in fact, they seemed downright angry about my requests, and when the food came out wrong I sent it back and decided not to trust any food that came from them at all. I had had a snack before we went out, so I wasn't starving, and despite not having a plate of food in front of me, I still had an excellent time socializing. My friends showed some concern that I wasn't eating at first, but I assured them I was fine (and I honestly was) and everything was normal. Then when we left my husband and I grabbed some food from a place where I know the people that work there and I know my food is safe. I ate in the car on the way back to the house we were going to be hanging out in the rest of the evening, so despite the evening having some hitches in it, everything worked out fine. I didn't get glutened, I didn't starve, and I did have a great time with friends.

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Thanks for the advice and insight, it's nice to hear from those who have already gone through this and from those who are also starting a new journey.

As my knowledge of the disease has increased over the last few days, my thoughts on how to become gluten-free have evolved as follows:

Stage 1 - This is when I left the GI with the diagnosis. Thought simply removing certain ingredients from foods would be sufficient.

Stage 2 - Learned about gluten in non-food products, and that absorption by means other than ingestion could cause problems. Realized that at least a few products that I use contain gluten and that I would need to investigate further.

Stage 3 - Read about cross contamination of food, utensils, toasters, etc.. Started to become paranoid about eating out, and wondering how to coexist with my girlfriend who is not gluten-free.

So I think that's where I am for now. My birthday is next week and I plan to hit all of my favorite spots one last time between now and then. After my birthday, I'll lay low for a while and go 100% gluten-free. Hopefully I'll be able to start feeling better. Once feeling better, I'll be able to carefully go out again and see what happens. My concern is still with cross contamination, both out of the home and at home, since it sounds like even a trace amount of contamination is all it takes.

Thanks again for all of the input! Oh, and I think I'll need to try that cake!

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Hey there, sorry about your diagnosis, but you know what? its really not bad at all. Once you eliminate whats making you sick you will feel like you have your life back. I want everyone to know that if you stop eating gluten and your symptoms DO NOT disappear rapidly... as was the case for me, please, please pickup the book "Life Without Bread" your answers lie in that book.

I had the genetic test done and sure enough had all the genetic markers for Celiacs and had all the wretched symptoms associated with it. Going Gluten-free DID NOT help me! What did help me was applying the theory from "Life Without Bread" by Wolfgang Lutz and Christian Allen. Its truly a life saver, and is clinically proven to work. Google it!

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It's not the obvious gluten you have to worry about, it's the hidden gluten and the cross-contamination. A kitchen grill that has grilled gluten needs to be thoroughly cleaned before your food touches it. There is flour often flying around in kitchens. Staff handle gluten and then handle your food without washing their hands. The meat in the Mexican restaurant has had flour added to it. The tortillas have been prevented from sticking together by a sprinkle of flour when they could have used cornmeal. The chicken in another restaurant has all been pre-breaded. The steak has all been marinaded with something with soy sauce (yeah, I had it happen). The possibilities, unfortunately, are endless unless you have a restaurant that understands gluten.

I went to a high-price golf resort to have brunch at their clubhouse. My gluten free sister was also with the group. We both decided to have the breakfast, eggs, bacon, mushrooms, hashbrowns (I omitted the tomatoes) as the safest choice. When the plates appeared the hashbrowns were formed into triangular shapes. I asked the waiter if they had gluten because I had never seen hashbrowns like that (looked they came out of a box), he had to go back and check with either the chef or the box they came out of, and informed me yes, they did. That is a sampling of why restaurants are hard and recommended for experienced gluten free diners.

I am sure you will get lots of other responses to this question :)

Thanks so much for explaining that to me. I've only been diagnosed for 4 days so I have a lot to learn!!! I felt like it was such a dumb question but I had to ask.

I haven't gone out to eat all week but I will tomorrow. It's a restaurant we frequent a lot so they know me and hopefully they will be careful with my food. I will have to train them because we go there every Sunday after church and I don't want to give it up if they can accomodate me.

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Thanks so much for explaining that to me. I've only been diagnosed for 4 days so I have a lot to learn!!! I felt like it was such a dumb question but I had to ask.

I haven't gone out to eat all week but I will tomorrow. It's a restaurant we frequent a lot so they know me and hopefully they will be careful with my food. I will have to train them because we go there every Sunday after church and I don't want to give it up if they can accomodate me.

I had a nightmare dream last night that I was out with a friend I hadn't seen since gluten-eating days. She went off and came back with a plate of food for me. A hamburger with a bun, garlic bread, a slice of pizza, the gluten works. :lol: I spent a long time explaining to her that I couldn't eat it, and next thing I know someone from the restaurant comes out with a lovely looking plate of food for me with avocados and asparagus and other goodies. I was about to eat it when my fork lifted out a strand of spaghetti dripping in tomato sauce :unsure: Further investigation revealed that everything was sitting on a bed of spaghetti and french fries :lol: See, you got me thinking about restaurant food :rolleyes:

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Oh my God, I hate those gluten type of dreams! I have at least a few a month, I'd say. Where I put something in my mouth, only to realize with horror later that it had gluten. I've had it be pizza, mini-muffins on ice cream...it's like in the dream, for a moment I forget. And eat it. And then it's like "oh my GOD WHAT HAVE I DONE!" Recently I've had two where, as soon as I realize what I've eaten, I tried immediately to throw it up. :huh: But it didn't work. then for the rest of my other dreams those nights, I am still waiting for the 'gluten attack' to come. Then I wake up, still waiting for the attack to come...then realize with relief that it was only a dream.

Damn those dreams.

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:ph34r:I also have those dreams where I eat a huge amount of gluten food (seem to forget about celiac at the time) and then realize in horror what I have done. What a relief to wake up!

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I guess those gluten dreams show how much it really is on our minds, constantly. And that's like our worst fears that we deal with daily coming true. I actually had a good one, once. I was amazed. I went to some party with a bunch of people I didn't know. Some dude who was the host offered me cake. I started to refuse, because of gluten, and he assured me that the cake WAS gluten free. I was like " :huh: " ...because who in their right mind would voluntarily buy gluten free cake, if they didn't have to?? I was skeptical. But I felt like I would have been very rude to turn it down after the guy said what he did...which would show I didn't trust him. So I basically threw in the towel and ate it, just to be a polite guest. (Which I wouldn't do in real life, not without looking at the box). Then later in the dream, some other creepy dude was hitting on me so I wanted to get out fast, still mentally prepared to be 'glutened' later. On my way out, I saw the box for the cake. And sure enough, in big letters, it said "GLUTEN FREE." I was so relieved. I couldn't believe it.

I woke up and thought "Oh my God, that's the first time I've had one of those dreams and had it actually work out in my favor in the end!"

Anyway sorry for hijacking this thread about this :ph34r:

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