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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.

Oh The Joys Of Contamination
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A couple of days ago I was sitting in my room eating some chicken prepared for me by the kitchen staff at my college. They know I have to eat lactose/gluten free and for the most part have done pretty well, and they swore up and down that the chicken was gluten free. Little did I know that they had put some kind of sauce (which probably contained gluten) on the chicken, so I ate it, not noticing the sauce as it was a similar color to the chicken.

Within minutes of finishing the chicken I noticed my stomach was bloated and crampy, but I wrote it off as I had been laying on my stomach reading and my stomach is VERY sensitive to pressure. For several months in 2010 I couldn't even wear jeans because they were too tight and hurt my stomach.

An hour or so after I noticed the bloating, which wasn't very bad actually, my throat started hurting like I was getting sick so I drank some tea and went to bed a few hours later. It wasn't until I tried to fall asleep that I noticed to familiar ache in my joints. Almost all of them. Knees, ankles, wrists, fingers, elbows, and even my hips hurt a little. And then came the insomnia. I lay in bed for probably close to 4 hours before I finally managed to catch some sleep, which only lasted 4-5 hours with lots of waking up.

The next morning the bloating and joint pains were gone, but I still had a sore throat and was very congested. Actually I'm still congested and I'm sure people are sick of hearing me snuffling in the back of the classroom;)

Lucky for me the day after The Glutening I was finally able to see the nurse and explained everything to her. She said I didn't have a fever and my lymph nodes were fine, but that my pulse was elevated and she was very nice.

Now I have a couple of questions:

1. Gluten has never caused me to have a sore throat before, but I am wondering if my congestion and sore throat could have been caused by the sauce on the chicken? It's odd that I didn't have a sore throat until after eating that meal...

2. Do sauces contain gluten? I'm pretty sure that's what caused me to not feel well as I only ate that chicken for dinner. Nothing else, and only tea to drink.

3. Since then I have been avoiding the kitchen and everybody keeps bugging me to eat there, but they don't understand because they can tolerate gluten, so they don't get what the big deal is. The kitchen staff has been great to me, but they obviously don't read labels and don't know what contains gluten as they have given me other gluteny stuff as well (stuff that I didn't eat). So what should I tell everybody? How do I deal with the kitchen staff? I feel as if I have asked this before, but cannot remember.

Thanks in advance!

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A couple of days ago I was sitting in my room eating some chicken prepared for me by the kitchen staff at my college. They know I have to eat lactose/gluten free and for the most part have done pretty well, and they swore up and down that the chicken was gluten free. Little did I know that they had put some kind of sauce (which probably contained gluten) on the chicken, so I ate it, not noticing the sauce as it was a similar color to the chicken.

Within minutes of finishing the chicken I noticed my stomach was bloated and crampy, but I wrote it off as I had been laying on my stomach reading and my stomach is VERY sensitive to pressure. For several months in 2010 I couldn't even wear jeans because they were too tight and hurt my stomach.

An hour or so after I noticed the bloating, which wasn't very bad actually, my throat started hurting like I was getting sick so I drank some tea and went to bed a few hours later. It wasn't until I tried to fall asleep that I noticed to familiar ache in my joints. Almost all of them. Knees, ankles, wrists, fingers, elbows, and even my hips hurt a little. And then came the insomnia. I lay in bed for probably close to 4 hours before I finally managed to catch some sleep, which only lasted 4-5 hours with lots of waking up.

The next morning the bloating and joint pains were gone, but I still had a sore throat and was very congested. Actually I'm still congested and I'm sure people are sick of hearing me snuffling in the back of the classroom;)

Lucky for me the day after The Glutening I was finally able to see the nurse and explained everything to her. She said I didn't have a fever and my lymph nodes were fine, but that my pulse was elevated and she was very nice.

Now I have a couple of questions:

1. Gluten has never caused me to have a sore throat before, but I am wondering if my congestion and sore throat could have been caused by the sauce on the chicken? It's odd that I didn't have a sore throat until after eating that meal...

2. Do sauces contain gluten? I'm pretty sure that's what caused me to not feel well as I only ate that chicken for dinner. Nothing else, and only tea to drink.

3. Since then I have been avoiding the kitchen and everybody keeps bugging me to eat there, but they don't understand because they can tolerate gluten, so they don't get what the big deal is. The kitchen staff has been great to me, but they obviously don't read labels and don't know what contains gluten as they have given me other gluteny stuff as well (stuff that I didn't eat). So what should I tell everybody? How do I deal with the kitchen staff? I feel as if I have asked this before, but cannot remember.

Thanks in advance!

Hi. How disappointing to have your chicken dish make you ill!

I often get a sore throat and congestion after getting "glutened". Along with many times a migraine to boot as well as the achey joints.

It could well have been the sauce. And yes most do have gluten. I would in future ask for no sauces. Just plain chicken etc. if you decide to have them prepare your food again.

I have also gotten gluttened just from someone in a kitchen not washing their hands between preparing my meal and someone else's and/or putting food on the plate after handling some gluten dish or two.

The kitchen staff might be willing to go the extra mile for you, but maybe not, eh? Those moments of forgetting... Its a real learning process.

Are you the only truly gluten free student there? Maybe you should start a club and see if any one else joins it. That way you could have more clout in the kitchen for instance and make inroads in other areas as well. Maybe even get a separate room where your food was prepared and handled?? So mishaps might be less likely to happen.

Meanwhile it might be wise to invest in a small dorm refrigerator and a hot plate if you get my gist, and maybe a slow cooker and toaster oven. If you do end up buying your own food and making your own meals you should get money taken off since you'd then not be using the cafeteria--assuming you pay for the cafeteria ahead of time in your general fees.

Bea

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Meanwhile it might be wise to invest in a small dorm refrigerator and a hot plate if you get my gist, and maybe a slow cooker and toaster oven. If you do end up buying your own food and making your own meals you should get money taken off since you'd then not be using the cafeteria--assuming you pay for the cafeteria ahead of time in your general fees.

Bea

I'm not sure the last time you lived on a college campus, but most dorms FORBID hot plates, toaster ovens, crock pots, etc in normal dorms without a full kitchen. This includes george foreman grills. At my college we couldn't even have a normal coffee pot because of the heating unit on the bottom. At my school if you needed to make your own food, you had to get special housing and go through the housing office. At my school if we had multiple room inspections where they looked for items like that. IF found they confiscated them the first time you had to wait like two weeks and then find a way to get it off campus either drive home or send it home. The second time you didn't get it back until the end of the term AND you got a strike against your housing standing. We had a 3 strike policy 3 strikes and you could no longer live on campus and having one or two strikes against you meant a lowered housing status when you picked rooms for next semester. It's the difference of being 10th in line to pick a room and being 100th. Which means a really bad room assignment next year. Your suggestions could get the kid in trouble not only this semester but effect his future living arrangements at that college.

Present day, if you cannot eat on campus in the cafeteria due to dietary restrictions you must go through the schools housing office and file for medical accommodations. At my school it was a packet of information about your diagnosis and what accommodations are needed. Parts of this form must be completed by the individual's doctor. And my school heavily relied on the doctor's recommendations and a specific diagnosis to determine if special housing was needed. Even then it was almost impossible to get out of the meal plan completely. You generally still had to stay on the lowest meal plan. My room mate senior year had a very limited diet for medical reasons and fought all year to get off the meal plan and was still unable to even though her doctors fully supported her not ever eating anything from the school. This may be true at most schools that use dining dollars where you can buy items peice meal in a to go cafe or market. It's pretty hard to say that you can't buy any bottled drinks or whole fruit due to celiac.

Sorry to be a little off topic, but I have seen that advice before for college students from older adults who haven't been in a college dorm in years and have no clue how many new rules and restrictions they have for the safety of the students. So, it really bothers me because it's no longer practical advice. Especially if the person is to depend on that for the rest of the year and years to come.

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There's absolutely no way for any of us to tell you if the sauce had gluten. The only way to determine that is for you to go to the dining folks and find out. Until you do that, you're only guessing.

richard

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I'd definitely find out if it's within the rules to have some means of preparing food in your room. If not you're kind of stuck doing that whole medical accommodation thing or finding a place you can safely eat. It can't hurt to talk to the staff again, maybe print out some helpful info for them so they understand how serious it is as well as how they can help you. It's possible that they just lack the information they need to be able to safely prepare food for you. It's possible that they just don't know all of the different things that can contain gluten. It never occurred to me at first that I can't have Rice Krispies, they're rice! Sometimes knowing what is and isn't gluten free requires some detective work. Arming them with what they need to be able to be detectives is (in my opinion) probably the best course of action.

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Are you the only truly gluten free student there? Maybe you should start a club and see if any one else joins it. That way you could have more clout in the kitchen for instance and make inroads in other areas as well. Maybe even get a separate room where your food was prepared and handled?? So mishaps might be less likely to happen.

Meanwhile it might be wise to invest in a small dorm refrigerator and a hot plate if you get my gist, and maybe a slow cooker and toaster oven. If you do end up buying your own food and making your own meals you should get money taken off since you'd then not be using the cafeteria--assuming you pay for the cafeteria ahead of time in your general fees.

Bea

Actually one of my teachers is gluten intolerant, so we have talked about that a little. It's nice to know I'm not alone.

As for hot plates, toaster ovens, etc, I have asked and we are not allowed to have them in our rooms because they are a fire hazard. I have a small 'fridge and freezer and there is a community microwave as well as a community toaster, toaster oven, and something else that I still have yet to discover what it does. I've pretty much been cooking my own food with those appliances and avoiding that kitchen as I am still congested.

Somebody said to consider educating the kitchen staff, and at some point I probably will, but I can't think of a way to do so that doesn't sound...well...accusatory. I don't want to make them feel bad because they have to prepare meals for a lot of people and they don't really have the time to read every single ingredient on every single item everyday, and they probably haven't the slightest idea about CC, which would be hard to avoid in a big kitchen. I've been wanting to ask them about preparing perhaps one strictly gluten-free/LF (Lactose Free) meal once week for everybody, that way I can eat at least something there every once in awhile. Even just a big bowl of rice would be fine. But I don't want to seem like I am complaining because I have greatly appreciated all their hard work.

And thanks for reading this:)

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Actually one of my teachers is gluten intolerant, so we have talked about that a little. It's nice to know I'm not alone.

As for hot plates, toaster ovens, etc, I have asked and we are not allowed to have them in our rooms because they are a fire hazard. I have a small 'fridge and freezer and there is a community microwave as well as a community toaster, toaster oven, and something else that I still have yet to discover what it does. I've pretty much been cooking my own food with those appliances and avoiding that kitchen as I am still congested.

Somebody said to consider educating the kitchen staff, and at some point I probably will, but I can't think of a way to do so that doesn't sound...well...accusatory. I don't want to make them feel bad because they have to prepare meals for a lot of people and they don't really have the time to read every single ingredient on every single item everyday, and they probably haven't the slightest idea about CC, which would be hard to avoid in a big kitchen. I've been wanting to ask them about preparing perhaps one strictly gluten-free/LF (Lactose Free) meal once week for everybody, that way I can eat at least something there every once in awhile. Even just a big bowl of rice would be fine. But I don't want to seem like I am complaining because I have greatly appreciated all their hard work.

And thanks for reading this:)

Sorry about recommending you do cooking in y our room. It sounds like it is off limits these days. Perhaps in the future you could consider off campus housing??

Its really nice to hear they have a community kitchen. However the community toaster is likely hazardous for you given cross contamination problems from other folk's toast. You could buy your own toaster and bring it to the community kitchen. It still would be best if you could find and designate a safe gluten free space to put it into--like maybe a cupboard normally out of sight of most of the users there...

Maybe you could even keep some plain uncooked brown rice there in the gluten-free cupboard too?? As well as other possible dry goods that only you use.

Apparently a shared microwave isn't so bad for many (though it would be for the likes of me!). Nevertheless you might want to wash it out before use.

If you did start a gluten free club you might find more students coming out of the woodwork with similar issues to yours. Sometimes people are too shy to let anyone know about their dietary restrictions. You would have more clout in numbers. If it was seen that more of you are affected than just you you might get more action with getting a gluten free zone in the kitchen prep. area.

You could also write articles about gluten intolerance and celiac for the school newspaper. This would serve to educate more people--some of whom it could even help to figure out what all is going on with them. It would also help educate the staff concerning what is happening with you and what issues you are faced with. Public knowledge and support is generally a good thing politically to get some real action going. Who knows what you could garner doing so. Plus it might be a nice move career wise too.

Bea

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I know that people can get defensive pretty quickly and totally understand not wanting to come off badly to the kitchen staff. My recommendation would be to start off saying that you understand what a challenge it must be to have a student with special dietary needs on top of everything they already have to do. Explain that since you know there is already so much to worry about for them that you've gone ahead and gotten some information for them that may help make it easier for them to accommodate you. You could mention that you didn't feel well one day and maybe say you have no idea where the gluten came from but that you're covering all of your bases to ease your mind. The info I'd most recommend for them is a list of hidden gluten and CC. Since they work in a kitchen they know how important it is to avoid CC already with things like meat so it isn't a stretch to extend that to gluten. They may not know to watch for things like malt, to check the soy sauce and other similar things. The best thing I can think of to make it non-accusatory is to play it all off as helping them.

I also love the idea of writing articles for your school paper. On top of educating students and staff that will look great on a resume, as would being a driving force behind a new club or organization at the school.

The toaster idea is good. If you know and can trust your roommates not to use it. All it takes is one slice of bread and who knows how bad that could mess you up. I love the convenience of the steam in the bag frozen veggies and as long as you aren't so sensitive you can't share a microwave they're a great quick easy bite to eat. (I'm super weird and could eat a giant bowl of veggies and call it dinner.) I hate to recommend a boatload of prepackaged food but that's what you may be stuck with until you have a kitchen you can call your own. You could also grab a loaf of whatever gluten free bread flips your lid and keep some PB&J where no one else can get and contaminate them.

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Hello,

If you are not already registered with your school's dissability office you should register with them. It is their job to help you with situations like this. With providing the staff with the training they will need to feed you safely. This is especially true if you are forced to buy a meal plan. They will be able to help you contact the right people to get things done. They are there to help you navigate this stuff. Get the help you are entitled to. They will know the ins and outs of this stuff.

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Perhaps in the future you could consider off campus housing??

You could buy your own toaster and bring it to the community kitchen. It still would be best if you could find and designate a safe gluten free space to put it into--like maybe a cupboard normally out of sight of most of the users there...

You could also write articles about gluten intolerance and celiac for the school newspaper.

Bea

Someday, hopefully soon, I want to move into my own apartment, on or off campus, that way I would not only have my own kitchen, but I should also have a stove, oven, and dishwasher, which I do not have now. Though I hate cooking I would rather try making my own stuff every so often instead of having to buy everything prepackaged.

I'm not sure how well the toaster would work out as my school is kind of strict about that stuff and they may not allow me to have my own, especially in my room (even if I don't use there), not to mention I'm pretty low on funds right now, but I shall ask and maybe it will work out in the future. Also, I keep all my food in my room, and I have no roommates, so luckily I don't have to worry about others taking it:)

The writing articles idea is really cool and something I never thought of. I would love to major in Creative Writing, so it sounds right up my alley! And it's also been frustrating having students and staff ask if I want some of their food because then I have to explain that I can't eat it and blah, blah, blah, so writing an article would be nice so I don't have to keep repeating myself.

Also, on a side note, I was talking with another teacher yesterday and she said that either her husbands or her friends whole family has Celiac and are all gluten-free, so she knows how hard it is, and she thought it was really neat how I've been printing out lists of gluten-free foods and ingredients. She even asked if she could make some copies. This world keeps getting smaller and smaller!

And than you everybody for all your help:)

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