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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.

Did I Do A Bad Thing?
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23 posts in this topic

I was in germany for 3 weeks and paid very little attention to what i was eating and where i was eating. last time i was in europe i was so obsessed with the food issue that i had a minor breakdown and it really ruined my trip and i lost a lot of weight. this time i threw caution into the wind and ate whatever i wanted (except things that obviously had gluten)...i had french fries and brat's from street vendors, ate chocolate in belgium and went to a german restaurant and ate a huge plate of fried pork, fries and sauerkraut. for the most part i felt fine but i am now a few days back in the states and my stomach feels a bit off. is it possible i really messed myself up?

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It's hard to tell if gluten was a factor, some people find that their stomach will be off in response to traveling alone. You are eating different foods than normal, possibly at different times than normal. Lots of factors can come into play. I would just go back to basics for a few weeks until everything feels normal again.

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What symptoms do you usually experience? You might be feeling off because you're worried you did a bad thing. Honestly.. and it's just what I think.. you go on vacations to have a good time, and not experience nervous breakdowns.. so even if you did get yourself mildly glutened, you still lived, enjoyed, and experienced so many things, and it's not like you can change anything about it now. Besides, you don't do this every other month or anything.. it's just this time right? If your off-ish-ness gets worse you'll know there was contamination, otherwise, I think you should just enjoy the memories you've gained :-)

I heard from board members that when glutened, the best you can do is drink lots of water and double up on probiotics for a week. I hope you don't get worse though!

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Jason,

Maybe you don't actually have Celiac? You have had some nasty intestinal critters. Perhaps you have finally healed from them? :o

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I second what Dani said. You survived- and most likely haven't done lasting damage. And you didn't intentionally eat gluten. In the same situation, I would probably do the same rather than trying to explain to street vendors who speak a different language what gluten is!

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yeah i really enjoyed myself and it was great to just sit down and eat without making a big stink :)

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good point Kareng! ANd if by chance you really do have celiac (from being celiac for a long time) I would say you were playing Russian Roulette with your health...

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im playing russian roulette by getting in my car and driving 5 hrs too ;)

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If you have celiac, you can't eat gluten, period! You must ALWAYS be on guard and make sure what you are eating is not CCed! With the right planning and preparation, you can travel anywhere and eat gluten free. It may cost you more time in preparing, searching for things to bring with you, and doing research. but just bring your own food that won't perish and a frying pan. When you arrive at a destination, pick up some chicken, veggies, and fruit to supplement what you've brought. It can be done, and your health is worth it! Cheating is a big no-no for people with celiac! Not trying to be harsh, just telling you the truth:) heal up quickly :)

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well i dont know if i have true celiac cause i was never diagnosed. i went on the gluten-free diet before i had a biopsy and pillcam and decided to not do the challenge since a world renowned celiac dr told me its barbaric. my blood test and biopsy were negative while on a "gluten light" diet - only positive i ever had was on the stool gliadin test but that can also indicate an intolerance which is what my mother has - so i live my life gluten-free but refuse to not eat out and enjoy myself and if i get an occasional cc so be it

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Gluten intolerance is the most likely diagnosis- celiacs are the minority on this board. In that case- you need to listen to your body. If you continually get cross contaminated, you are going to start feeling like crap, all of the time.

On the other hand, some with gluten intolerance are able to tolerate smmall amounts of gluten without issue. You may be one of them.

It is going to be trial and error for you, since you are undx. I just hope you will pay attention to your body's signals and recognize when there is a problem, because long term damage from gluten is not fun!

Also, since you are not dx celiac, please do not refer to yourself as celiac around others. Celiacs must be extremely cautious about cross contamination, and when people observe a "celiac" who can "handle a little bit of gluten" they assume that we can too, and they are less understanding of our needs and often careless in our food preparation.

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thanks for the great input :)

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Gluten intolerance is the most likely diagnosis- celiacs are the minority on this board. In that case- you need to listen to your body. If you continually get cross contaminated, you are going to start feeling like crap, all of the time.

On the other hand, some with gluten intolerance are able to tolerate smmall amounts of gluten without issue. You may be one of them.

It is going to be trial and error for you, since you are undx. I just hope you will pay attention to your body's signals and recognize when there is a problem, because long term damage from gluten is not fun!

Also, since you are not dx celiac, please do not refer to yourself as celiac around others. Celiacs must be extremely cautious about cross contamination, and when people observe a "celiac" who can "handle a little bit of gluten" they assume that we can too, and they are less understanding of our needs and often careless in our food preparation.

AMEN! It drives me crazy to observe those who say they are celiac but then laughingly proceed to eat a gluten-laden cookie. I treat my celiac diagnosis as a potential life-threatening illness (not imminent but it has potential to kill later on) and take it very seriously. This does not mean that I talk about it with others or draw attention to it (I despise that). It just means that it is a very serious thing.

BTW, I have traveled to Europe a few times now since my diagnosis and it can be done without cheating. All it takes is great planning.

Hopefully you do not have celiac but if you find out that you do, also know it is not the end of the world. Even when traveling to different countries/cultures/continents. :)

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BTW, I have traveled to Europe a few times now since my diagnosis and it can be done without cheating. All it takes is great planning.

Since you're an experienced traveler, can you give an example scenario for educational purposes. Let's say (for example) you're going to Italy in a month. What would your planning involve, and how do you do it. My last trip to London involved a lot of starvation. I came back feeling, acting and looking like a hungry bunny, and I think I did manage some CC in the end.

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Since you're an experienced traveler, can you give an example scenario for educational purposes. Let's say (for example) you're going to Italy in a month. What would your planning involve, and how do you do it. My last trip to London involved a lot of starvation. I came back feeling, acting and looking like a hungry bunny, and I think I did manage some CC in the end.

I've been to Rome and Athens since my diagnosis. Both times I made sure to have the proper translation cards (I ordered the ones from Triumph Dining -- they are great!), and I did some online research about possibilities of buying gluten-free food (do they have it, where to get it, e.g. natural food shops, pharmacies, etc.), any possible gluten-free restaurants, general country awareness. You really have to look at the cuisine of where you are going to see how much explanation you might have to endure with servers or chefs. Both trips I brought food with me -- canned tuna, Kind bars, peanut butter, beef jerky, etc., and my family stayed in apartments versus hotels so that I knew that preparing my own food was an option if necessary.

In Greece they weren't as aware of Celiac but they were very very good about paying close attention to the cards and having Chefs make suggestions about food. Luckily it was easy to stick to grilled meat and lots of veg which were naturally gluten-free. We even went on a day-long tour to Delphi and the tour operator called ahead to the restaurant to make sure they could prepare something gluten-free for me -- I ended up with a gorgeous salad, a grilled pork chop and the offer of fresh fruit for dessert. I had no trouble in restaurants but we did stick to "nice" places that were more expensive but it paid off and I didn't get sick.

Italy was absolute gluten-free heaven. All I had to do was say I had Celiac and every single server (even the young guys in the gelato shops!) knew exactly what it was, what I could eat off the menu, and what to avoid. We ate out for lunch and dinner every day and while it did start to get expensive by the end it was such a treat to be able to go out and get a great meal and not have to worry about being sick. I basically brought back all the food I had taken with me except for one can of tuna and some beef jerky that I ate on the plane.

As for the plane trips I took along a ridiculous amount of food because there was no gluten-free meal option. I had no trouble with the food in my carry-on.

I think the best way to approach traveling is to gather as much information as you can before you depart, have those dining cards in the local language and don't be shy about using them, plan/prepare for having trouble finding food so you've got back-up whether it is food you bring with you or having to stay in a place where you can prepare your own food, know you may end up spending more money on eating out than you did pre-diagnosis (in Rome it wasn't like I could pop into one of the little pizza stalls and grab a slice for a couple euro) and then just hope for the best. So far that has worked for me.

Hopefully it will work on our long flights back to the States and the travel I have to do there before getting back to our house!

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Since you're an experienced traveler, can you give an example scenario for educational purposes. Let's say (for example) you're going to Italy in a month. What would your planning involve, and how do you do it. My last trip to London involved a lot of starvation. I came back feeling, acting and looking like a hungry bunny, and I think I did manage some CC in the end.

We have spent each May and October in Europe for several years (we own a house in Croatia). Before that we traveled all over to many countries. We just returned from Italy less than two weeks ago (have been there about 10-12 times now) and it is an incredibly easy place to eat and find food. My biggest concern when traveling to Europe always is the long-haul flights (I have severe chronic pain), flight delays, eating at airports. We've experienced so many delays that it's not even funny. We have a small daypack that contains:

- Kind bars

- dried fruit and nuts (so far they have allowed it)

- Skittles

- homemade protein-type bars

Some airports have zero options except for the odd sad-looking brown banana or wilted salads that are not filling. The odd time I have even resorted to purchasing potato chips. And I drink a LOT of water.

Sometimes my husband and I eat at very refined restaurants for several reasons; first of all, we love experiencing superb food. Second, it is often safe - at least far more safe than fast-food joints and chains (which I have not been to in about ten years). Thirdly, it is an excellent way to enjoy that particular culture's food. I'm a food person so know the top restaurants in the world. For good restaurants I call far in advance and speak with the chef or manager (many speak English).

However, we do not always eat like this as it is obviously impractical. We also love the ma and pa local authentic places in tiny villages. We try to contact them in advance as well and sometimes find it difficult with the language thing. And you cannot always plan where you will be at any given time when on holiday. So, each time we go to a restaurant I take along restaurant cards in that language explaining I have celiac and cannot have such and such. If the people have no clue what I am talking about we will not eat there. But if they smile knowingly and can assure me that indeed they are very familiar we feel safe. Thankfully in Croatia most places do not have deep fryers like here - instead, they grill most of their food (i.e. fresh fish, seafood, veg). Easy.

I've been to London but not since my diagnosis so cannot comment on it specifically. We are going to Paris in September which will be tricky as the dinners are already arranged (my husband's got meetings there and spouses must attend - what a hardship!). But I told them I have celiac already - the organizers are professionals and know what they are doing. But walking by all the bread and croissants - ouch!

After returning from our most recent trip I did not feel like I missed out at all (except for gelato - many places in Italy it is NOT gluten free I found out). I was satiated and satisfied. gluten-free products are so easy to purchase there and people are far more aware than here (although that is also improving). In restaurants I just order naturally gluten free stuff and enjoy (after speaking with the chef, of course). In fact, in Italy celiac was a non issue. It was not problematic whatsoever.

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I still don't get it. Even if you ask them about being gluten-free or explain it to them.. what if they don't get the idea about CC from the pans and you get glutened. How do you the waiters don't understand that if they touch bread or whatever they can't handle your food after.. or am I just taking CC too seriously?

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I still don't get it. Even if you ask them about being gluten-free or explain it to them.. what if they don't get the idea about CC from the pans and you get glutened. How do you the waiters don't understand that if they touch bread or whatever they can't handle your food after.. or am I just taking CC too seriously?

If I have to explain it to them I cannot eat there. Only if they can assure me in their own words (i.e. offer to describe how they handle CC) do I eat there. High-end places train their staff far better than most places. But you are right - there is always a risk. I so rarely eat out other than travel (there are no places safe within a 3-hour radius of here). No, you are not taking CC too seriously. You should! ;) Believe me - I am extremely picky when eating out - my questions can be exhaustive. But I do it anyway and am sure to tip extra! :)

In Italy they truly get it. In fact, it is mandatory that each child gets tested for celiac by age 6! Many restaurants there have separate stations, designated pots for pasta, they wear gloves... By now many places even remember us (i.e. in Venice) that they automatically bring out an amuse bouche that was created gluten free just for me before even asking. Then they carefully explain yet again what they do for safety. There's one place we go to where they do not even serve bread - just grilled fish, meat and veg. It is a lovely spot and refined and delicious. The grill master is out where you can watch. Not that there is any CC on the grill but still. In Italy they rarely use things like Worcestershire sauce or soy sauce for marinades - it is often simply olive oil, garlic and herbs. Their ingredients and use of them are far different.

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If I have to explain it to them I cannot eat there. Only if they can assure me in their own words (i.e. offer to describe how they handle CC) do I eat there. High-end places train their staff far better than most places. But you are right - there is always a risk. I so rarely eat out other than travel (there are no places safe within a 3-hour radius of here). No, you are not taking CC too seriously. You should! ;) Believe me - I am extremely picky when eating out - my questions can be exhaustive. But I do it anyway and am sure to tip extra! :)

In Italy they truly get it. In fact, it is mandatory that each child gets tested for celiac by age 6! Many restaurants there have separate stations, designated pots for pasta, they wear gloves... By now many places even remember us (i.e. in Venice) that they automatically bring out an amuse bouche that was created gluten free just for me before even asking. Then they carefully explain yet again what they do for safety. There's one place we go to where they do not even serve bread - just grilled fish, meat and veg. It is a lovely spot and refined and delicious. The grill master is out where you can watch. Not that there is any CC on the grill but still. In Italy they rarely use things like Worcestershire sauce or soy sauce for marinades - it is often simply olive oil, garlic and herbs. Their ingredients and use of them are far different.

Thanks for your input. Did you ever compose a travel 101 thread by the way? If you have I should read it, and if you haven't.. perhaps it wouldn't be a bad idea to make one for us noobs who want to get out :-)

Italy sounds like celiac-haven. I just stated italy as a random example but didn't really expect they would be even safer than sweden!

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Thanks for your input. Did you ever compose a travel 101 thread by the way? If you have I should read it, and if you haven't.. perhaps it wouldn't be a bad idea to make one for us noobs who want to get out :-)

Italy sounds like celiac-haven. I just stated italy as a random example but didn't really expect they would be even safer than sweden!

You are most welcome, Dani. Believe me - our first trip since my diagnosis I was terrified! All that worry for nothing. ;) Travel in countries other than Italy may prove to be more difficult, of course. For example, I have not been back to Germany, the UK, Austria, Switzerland, etc. since I was diagnosed 15 months ago. Croatia had its moments (they have far less gluten-free products but they do have more than our trip in October) of uncertainty but if not satisfied we chose to move on. One off-the-beaten-path place was so quaint and utterly beautiful but the owners/cooks did not speak a lick of English. So, we moved on...

Italy is known to be one of the best countries on the planet (in addition to Sweden) as far as awareness goes. Great place to travel. I know you were only using it as an example, but if you (or others) decide to travel, it is a great place to start. :)

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Jason, I'm glad you had a good trip! It sounds like heaps of fun :)

Dani, London is great, if you are there again, M&S food have lots of things you can have on the go and they are labelled really well. I found wait staff in the UK pretty knowlegable. I'm sorry you had a hard time.

To add to the others, I research locations of gluten free restaurants, supermarkets where I can get fresh food, public transport to get me to those supermarkets if I'm on my own, and I try to get hotels with a fridge. I carry food with me so I can eat before or after if the place isn't suitable. If I'm meeting up with friends i like to have a choice of a few restaurants I know I can eat at so they can choose from one of them. I ask where we'll be eating out if someone else is picking so that I can research it in advance.

Once you're on the ground somewhere, if you haven't done this research in advance it's tough because it can take hours and if you're posting the question to forums you have to wait for replies, and you don't have that kind of time when someone is nagging at you to go find somewhere to eat right now. But if you have done the research, you can be all 'oh for sure, there's a nice little place just down the street from our hotel....'. Picking a place in a strange town is hard at the best of times and I've found people are just happy if someone will make a decision :)

If I have to explain it to them I cannot eat there. Only if they can assure me in their own words (i.e. offer to describe how they handle CC) do I eat there

And yes, this is my standard too. I wouldn't usually go somewhere I hadn't investigated in advance, but if I did and say "I need to get something gluten free" and the reply is "huh" then I'll say cheerfully "oh, not to worry, I'll just have a drink" and leave it at that. Depending on the situation, I'll either not eat and my companions will or we'll all leave and eat elsewhere. But I am so not going to get into it with them because to keep your custom they will likely try and re-assure you that it's fine and that can lead to naught but pain and anguish :)

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Jason, I'm glad you had a good trip! It sounds like heaps of fun :)

Dani, London is great, if you are there again, M&S food have lots of things you can have on the go and they are labelled really well. I found wait staff in the UK pretty knowlegable. I'm sorry you had a hard time.

To add to the others, I research locations of gluten free restaurants, supermarkets where I can get fresh food, public transport to get me to those supermarkets if I'm on my own, and I try to get hotels with a fridge. I carry food with me so I can eat before or after if the place isn't suitable. If I'm meeting up with friends i like to have a choice of a few restaurants I know I can eat at so they can choose from one of them. I ask where we'll be eating out if someone else is picking so that I can research it in advance.

Once you're on the ground somewhere, if you haven't done this research in advance it's tough because it can take hours and if you're posting the question to forums you have to wait for replies, and you don't have that kind of time when someone is nagging at you to go find somewhere to eat right now. But if you have done the research, you can be all 'oh for sure, there's a nice little place just down the street from our hotel....'. Picking a place in a strange town is hard at the best of times and I've found people are just happy if someone will make a decision :)

And yes, this is my standard too. I wouldn't usually go somewhere I hadn't investigated in advance, but if I did and say "I need to get something gluten free" and the reply is "huh" then I'll say cheerfully "oh, not to worry, I'll just have a drink" and leave it at that. Depending on the situation, I'll either not eat and my companions will or we'll all leave and eat elsewhere. But I am so not going to get into it with them because to keep your custom they will likely try and re-assure you that it's fine and that can lead to naught but pain and anguish :)

....and I neglected to mention fresh markets. When we travel I head to the main square where there are often fresh markets with wonderful produce. We did that nearly daily on our last trip. Great place to learn more about what grows there, food culture and get something delicious to eat as well.

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