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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

DownWithGluten

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  1. I don't date much at all ...like, really, next to 0. But if/when I ever do, I almost want to require that they have celiac or gluten intolerance too because I just don't want to deal with the BS. Haha. Or maybe at least some kind of chronic condition so they can be sympathetic and non judgemental jerks. They should make a celiac dating site (or maybe they do). I mean eating really IS such a huge part of life, and we unfortunate souls face daily challenges with eating, so if the person is not game for that, it's going to suck. Getting to be on the same page with someone about that would be SUCH a refreshing relief.
  2. Hello, I understand! People have given you good advice about the roommate thing. Yes you have to go kind of leper-mode when it comes to your food, and you will begin to feel like a leper too (this whole thing can be isolating, sorry to say. Ive been doing it for 10 years and sometimes the heartache of that last part you mentioned...knowing how much I'm inconveniencing everyone, confounded by the underlying fact that they don't really think what I'm doing is actually completely necessary, that I'm somehow choosing to make it more difficult than it has to be....all that sometimes has just made me decide it's easier to do a lot of things on my own. Particularly travel....) So, I send you a huge hug and tears of kinship and understanding. The world outside of us truly does not understand and I'm sorry that you have to be part of this leper island club of secret woe, endless frustration...etc ad infinitum. Stay strong, keep safe, keep healthy, and keep coming on here and venting because we all do actually understand on here...unlike most of the rest of the world.
  3. It is difficult! And cristiana, I know what you mean about other celiacs or gluten intolerants poking holes in our credibility. They'll claim to need to be gluten free but then will go and eat some cookies occasionally. I mean ...I know one who was gluten intolerant (lots of food intolerances actually) and she'd still eat gluten in front of me sometimes. On the one hand I liked being around her since at least she tolerated/understood my problem, but still, it made me cringe. Then even last year (shoot, two years ago now) in Paris I was with someone who supposedly is gluten intolerant who went ahead and ate a whole basket of bread...I was like...uuuh. She said she had some muscle soreness after but...yeah. I was inwardly horrified, I would NEVER do that for my own self! That would be horrific. It'd be like consciously choosing to eat meat with salmonella or e.coli. So I suppose you're right. She didn't even seem to get my paranoia over cross contamination in their tiny kitchens. But for me, those people...it's their funerals. I don't get it for myself, I would never do that, I'm still in pain from my accidental glutening this past Wednesday...I feel like my intestines have been beat up and eating anything is like gently swallowing teensy bits of glass along with it. I hope it gets better soon. But anyway...to me, that's their business, their bodies. So it's still unfortunate to me that the people who have NO experience, personally, with this ailment are quick, so quick to jump on those outliers who fudge the rules as the "real" ones and we (the serious ones) as the ones who are overreacting or faking. So, because some people "cheat"....that automatically must mean the entire thing is a farce. Riight. I just wish people would give other people the benefit of the doubt. Is that so hard? If someone says "I have a problem. I can not do xyz." LEAVE IT ALONE. JUST GO WITH IT. ARGHGHGHGH. NO ONE WANTS YOUR DAMN OPINIONS OR THOUGHTS OR LECTURES ON SOMETHING YOU KNOW NOTHING ABOUT, BUT I LIVE WITH DAILLLLY. ok OMG cutting the gluten free cake with a gluten covered knife. You see, this, this is the reason we have to be so "paranoid" all the time, which people sometimes regard as attention-seeking behavior. It's not, though. For the millionth time, I'd be MORE than happy if I didn't have to do ANY of this. But we know the truth...if we're not hyper-vigilant....if we let our guard down even a little....a disaster is waiting to happen.
  4. I don't have much encouragement, but at least I can say I know how you feel and I would like to go smack all those people at your party. Lol. I actually experience a lot of anger over the way other people react. My intestinal reactions to gluten ingestion are pretty severe (as are most people's on this thread). It was bad enough in college that I felt like I didn't want to keep living if it was going to keep happening. The gluten free diet stopped all those symptoms and "intestinal/digestive attacks" for me, and yet it's constantly being mocked in the (American) media, which trickles down in the way people around you act. Like we're just these self-indulgent whackos. And people...yeah I don't even want to get into it right now. Unfortunately I was "glutened" recently (on Wednesday) and I still feel awful physically so I think it just makes me more sad how people like to put it down, or act like you're overreacting, or act like they know better, or act like you could just "eat a little" instead of being so strict, as if you're choosing to make your life WAY more difficult for fun and not out of medical necessity. Following the gluten free diet, trying to avoid cross contamination, makes something most people take for granted (eating) a daily challenge! As far as when it comes to eating outside your own kitchen (where you can make your own food)...but even then, you have to be stressed about grocery stores, buying ingredients. Even getting prescription medications can be a challenge, have to watch for gluten in medicine, too....anyway, all that is no easy (or cheap) task. It's time consuming and frustrating to say the least. I guess, to me, enduring the ever-present challenge of eating gluten free is of course worth it given the alternative. But it's difficult, and we don't have a choice. Trust us, we'd rather not have to live this way, either. But the alternative is getting really, really, sick and increasing the risk for other illness...etc ad infinitum. I already have another autoimmune disorder and recently low b12 was added to my list of magic. So for me, to have to deal with people's BS on top of all that gets me very angry. Verrrry angry. I need anger management on it or something, I think. I wish I had a better way of letting the BS of others regarding this roll off my back. I guess we just have to accept that people will not understand and will judge you and make jokes or think they know better and that you're choosing to be difficult....just accept that's a reality, even though it's completely wrong, and they're being diminutive, patronizing, ignorant, narrow-minded, arrogant, stubborn and rude. I don't think you're skin thinned. And, I just "celebrated" my 10 year "anniversary" of being gluten free this January. 10 years! So uh, i can't say it's gotten easier in my experience. I started before it was considered a whole "fad" thing, so that added anger about it for me over the five years. It just causes so much frustration and is nothing any of us would VOLUNTARILY want to deal with. So why do people need to give us s**t on top of that, like it's our choice?? How does that even make sense? What has really grated on me over the past 10 years IS other people's reactions, more than the whole difficult challenge of staying completely gluten free itself. Anyway I need to go take my wailing, wrecked, inflamed intestines off to bed now...
  5. Hanshotfirst, unfortunately I have no solutions. I just want to offer another voice of support to show that I know what you feel like. In some twisted sense it might be "easier" for me in that the pain/sickness was so bad beforehand that I kinda wanted to just jump out a window, so being on the diet at least eliminates that and gives me a sense of control that I didn't have before. (Since before, I didn't know what was causing it). And I was a loner anyway, not the life of the party and spend a lot of time alone by choice. But, good Lord, I know what you feel and how you mean. I've been gluten free for nine years now. It is hard being on the diet. People don't understand. You have to deal with a lot of attitudes from people, on top of all the difficulties of just being "paranoid" all the time about getting glutened, not knowing when you'll be able to eat next (if on a trip, etc.) It's like you're offending other people, or putting them out , or bothering them...nevermind how you feel, right? Haha. I find that it's just way easier to travel and do things alone because food is inevitably such a big part of life and socializing. And it causes such problems there. And so if I'm starving and thus feeling irritable, or am getting "paranoid" over a food or at a restaurant or whatever, better that I'm alone than with someone else rolling their eyes or feeling put out or judging me for overreacting. and of course those people want to eat, too, "real" food you know...and being around us might damper that some. Sigh, I don't know. Sorry that you weren't as bad before (sickness wise) so that you don't even see the payoff so much now. The diet is hard, socially, for sure. I do feel kind of angry/defensive/bitter about it a lot. But I agree with the others though, if diagnosed with celiac, you really need to stick to it, though, for your own well-being and health in the long run. :/ Hang in there and, just know ...even though it DEFINITELY FEELS LIKE IT DAY TO DAY...in this big wide world, you're not really alone in your struggles.
  6. Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect. I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member). I still simper and grovel and cringe and apologetically turn things away. People still put dishes in my face and say "This should be gluten free..." and I have to awkwardly not eat it and then seem rude. I've done the whole...checking the bottles thing too. I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others. Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be. A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels. Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do. Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned. I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh. It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
  7. ah I remember you too. I don't post on here as much either. Nice of you to give encouragement to the newbs. It's been 7.5 years for me now. Within that time, I've only been "glutened" three times....and each of those times reminds me exactly what all this extra work and frustration is worth. I air on the strict side, and for me, 7.5 years of having to deal with other people's reactions, lack of understanding, eye rolling, confusion, lack of cooperation, backtalk... from friends, family, coworkers, waiters...well, it has taken a toll on me but....it is still worth it in the end for your health. You just have to stand up for yourself, and your own health, even though people will judge you for it and not understand. Definitely, 100%, body-wise I am better. For me it was an overnight change the moment I eliminated gluten. From daily pain, full blown 'gluten attacks' every 3-6 weeks, or more...and increasing...occurring with the slightest triggers like getting up early, stress. I still don't know how I would have kept a full time job if I hadn't gone gluten free. So frm that...to just evaporating overnight. No more daily pain, random sickness attacks...it was really depressing me before to be at the mercy of the illness. So, now, I control it. That's what the diet does for me. Another plus is there are a LOT more options out there now...and awareness...than even when I started 7 years ago. A lot more products labeled as gluten free, more gluten free food even in non specialty stores...etc. So, that's a plus Not that I'm saying "oh it's so easy to be gluten free now"...just that, I've seen awareness build over the years and it gives me hope it will get better over time, too.
  8. Interesting topic! All these people telling her not to go ...clearly don't get it. Anyway...it's interesting because I've actually wondered this before. What if I were to get stuck somewhere where bread was the only option...prison, kidnapped...etc. I guess I'd have to eat it, but I've realized how much more miserable it would make the situation than someone without gluten intolerance.
  9. Bonjour...I don't live in France but I've thought about it, so I've looked this up a little before. I would say...no, you can't eat the baguettes. If you want to be gluten free, for real...you can't eat any gluten...not even a little. Sad, I know, because the baguettes are so good. I was in Paris before I figured out gluten was my problem...and I'd always have a baguette for lunch! But, won't be able to if/when I go back. I'm like you in that I was diagnosed with IBS...but nothing was helping. As a last resort, I eliminated all gluten and magically the problems stopped. Anyway...this article might have some good resources for you. She says to look for magasins bio....which are like health food stores that would carry gluten free brands. Probably just schar and whatnot..tastes nothing like a true baguette....but hey, that's what we get. http://www.celiac.com/articles/21485/1/France-sans-Pain-How-to-Travel-Gluten-Free-in-France/Page1.html Also they have a French gluten intolerant website, which I'm sure has tons of resources... http://www.afdiag.fr/ Although it looks like right now the site is having some problems. But, when it's back in full force...should be helpful. Je souhaite que ça était utile.
  10. Oh and, just more on this...as far as restaurants. Probably the best and most consistent one I've found to work is Outback Steakhouse. I know, you don't eat meat! But I have a vegan sister and she can find things there. As well, P.F. Changs is good, they even bring their gluten free dishes out on a different kind of plate and the staff always seem to remember to warn you not to eat the regular sauces and offer to bring out gluten-free soy sauce. I've had success with Uno's as well. Depending on where you live, some areas have a lot more cute little non-chain places that offer gluten free items, more than others. (mine is one of the 'others' but I've travelled to places with better options haha). Chipotle has always worked for me, too, however some more sensitive people may advise against it. Do not eat the flour tortillas. I avoid the salad dressing and the hottest salsa as well. Always, you have to give them the song and dance about your diet and double check that they know what you mean and that they will avoid cross contamination. I get all whip-cracking on them, and usually have to witness with my own eyes that they write down 'gluten free' next to my order. I stress it to them probably at least five times. It's very annoying but better safe than sorry. You can usually size up how comfortable the waiter is by how they respond. For example, If they ask you "well you tell me what you can eat" it's not a good sign. I've seen many a face fall, a bead of sweat drip, a tremor of nervousness when I mention to them that I'm gluten free and will get sick if I consume it. lol. I will be stubborn and resort to "can you ask the chef? the chef should know.." b/c sometimes the waiters are just ignorant. I had one guy who was sarcastic and rude when I asked to double check about their broccoli dish, he was all "uum it's broccoli" (but of course, what about the seasoning?) and then he came back basically groveling and apologetic so I assume the chef put him in his place. Anyway...it is definitely a song and dance. For new and unfamiliar places (still, I try to stick to ones that I've found have gluten free options online)...it's ALWAYS recommended to call them ahead of time and go through the whole song and dance. Being honest, this is all a huge pain the butt. There will be heartbreak and frustration and anger navigating "eating out." Your friends and family are going ot have to get used to eating at the same 2-3 places a million times, or just eat out less...or on occasion you'll have to eat beforehand and just sit and drink some Coke while they eat. Awkward but I've done to at least still go out and socialize. I feel I've struck a balance. But I do so long for the days when I could just eat out on a whim, without having to plan it beforehand, stress about it all day...etc. there's an art to the gluten free restaurant dining experience. Let me know if you have any more questions. I feel I air on the more strident, "paranoid" side. Then again, there are people more strident than me who wouldn't recommend ever eating out. So...you'll find your level of comfort. again, in time!
  11. Hey, hope you're feeling less overwhelmed. I think we can all relate to that initial disappointment and despair. Even the rice cakes...haha, for the first few months all I ate were random rice chips and like chicken broth. But don't despair, it's not as bleak as it seems. I've been gluten free for six years now and can pretty much eat whatever I want...however, yes, the eating out thing will not be the same. I'm reduced to about 3 or 4 options and don't have the freedom to just eat out on the fly. Before I go on any trip, I still take about 3-4 hours researching restaurants in the area. Etc. But my main point is, even as a vegetarian, I can say with confidance that you'll be able to eat practically as much as you did before. Restricted to certain brands, will take a lot of Googling and callin companies...but once you find your "safe" go to brands and items, you'll be set. I don't feel at all deprived eating at home. (Again, yes the freedom to eat out or eat at work functions or parties etc...indeed not the same. But as far as cravings, eating what I want on a regular basis...no problem!) My friend I love pasta and bread, too. I used to just go to bakeries and eat bread for lunch, and pasta is one of my favorite things. they're beginning to make better tasting gluten free bread. And the brown rice gluten free pasta, to me, tastes the same as "real" pasta. I swear to you I don't miss "real" pasta in the slightest. The texture is more obnoxious and doesn't hold as well -- but the taste is perfect. I was afraid to try it the first time but was so pleasantly surprised. It's not like whole wheat pasta which does have a drastic taste difference. You can still have all your veggies. With some research, you can find salad dressings and dips that are gluten free. And regular brands, too. Like Kraft and Newmann's. Not everything has to be organic or "healthy" brands. Although sometimes those are more convinient b/c they take the time to label products as gluten free. But I'm sayin,' you can go grab a bag of Cheetos and pop in some M&Ms and be fine. All is not lost...it's just a matter of finding substitutes to the main things like pasta, cookies, bread...and a matter of doing the grunt work of calling brands and research brands online,... (pretty much, don't eat anything unless you have checked beforehand or unless it's labelled as gluten free. that's my rule). I don't know how much cooking you've done, but you will likely have to rely on preparing your own ingredients and less on pre-made things (like hamburger helper types). Anyway, once you have your safe brands, you're good to go. (Though good to check ingredients from time to time as products can change). Conveniently for you, as far as frozen meals and that sorta thing... gluten free and vegeterian often get lumped together so you should be able to find variety there too. Usually only healthy and organic brands do the 'frozen food's' though. (A note with the vegetarian thing __ one hindrance to look out for is 'vegetarian' meat. They almost always have wheat in them. So, those occasional bites of real chicken you mentioned might have to suffice instead.) And like someone else said, hard cider is a great non-strong "fun" beverage to have instead of beer. And more and more varities of gluten-free beer seem to be cropping up. Hope that helps. Don't feel you have to resign yourself to rice cakes and carrots forever. With research (and give yourself time ) you can still have flavor and fun and eat just as much as you used to.
  12. Okay! Wanted to close the loop for those who are curious and for future individuals who may Google "swiss miss gluten free" in hope of answers. I called them today and she confirmed that, yes, ALL varieties of Swiss Miss hot cocoa are gluten free. This includes the dark chocolate variety I was asking about, and any of the others. Mint, marshmallow, you name it. She said they are still in the process of getting all the boxes labelled as gluten free. So circa Jan. 2, 2013, Swiss Miss hot chocolate, all varities, is gluten free.
  13. Oh my friend I'm the quintessential "whimpering chick." I've been on the gluten free diet since 2007 and have only gotten glutened twice, both in 2008. The price of this success is being the whimpering chick, the doubter, the annoying person who doesn't eat what people offer, who looks rude or possible hypochondriac or attention-seeker, that high maintenance person who has to call restaurants and venues themselves every time. I loathe being high maintenance but it's the price I've had to pay, and my intestines thank me. This includes at workplace functions, workplace outings...those are often the hardest. And then parties with friends, etc. It's especially difficult when they THINK they're doing it right and are at least considerate enough to think of me...but I still have to be the whimpering chick and not take them at face value. They usually endure 20 questions, indicate some doubt over an ingredient or reveal something they hadn't thought of that they forgot to check for gluten... enough for me to be afraid and not eat it anyway. And then everyone feels awkward and bad. So what's my point? I've fared very well physically...will be exactly Six Years Gluten Free come tomorrow (New Year's Day), and only two times, within the first two years, have I gotten sick from accidental glutening. But to do so, yes, I have HAD to be the whimpering chick. The choice is yours. Sadly, those are our options. However, there are more gluten free options nowadays even from when I started! getting off my soapbox...As for the OP and fast food...the only thing I ever get from Wendy's is the Frosty, as others have mentioned. Fast food frightens me. I believe I got a baked potato at Arby's another time, with no butter or anything, but that's it.
  14. Okay I called. Since it's new years they didn't have any live people. But the automated robot gave me a bunch of rigamarole that basically said if there is barley, rye or wheat in any ingredient, then they will list that in parentheses next to it. I don't see any of that on mine so I'm thinking it is probably safe. The said other stuff about distilling and possible exposure to wheat, so maybe that's why they don't label them as 'gluten free'...but basically I don't think there are any gluten ingredients in it. hmm
  15. Thanks. I think I will call them just to be sure. There isn't barley or wheat or rye listed but it does have 'natural flavors' kinda stuff.