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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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


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About celiacshawn

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  1. Sushi Rice... Again

    Instead of soaking the rice in rice vinegar and then fanning it dry (the more traditional way) there's now a faster way of making sushi rice that involves these little seasoning packet things. I can't think of what it is called right now. Anyway I would bet they are using that method and the stuff probably contains gluten. If I could eat gluten I wouldn't go to a place that makes their sushi rice that way anyway... Kind of a cheap/fast method.
  2. Pho

    One thing that's nice about Vietnamese restaurants is that they usually have several dishes that are not made with any soy sauce and are pretty light, steamed, fresh dishes. A lot of them will have a grilled chicken and rice dish that is prety plain but still tasty. So maybe that could be an option. I'd probably find out ahead of time if they marinate the meat of their grilled dishes and if so in what. I have not had problems with a similar dish at my local Vietnamese restaurant.
  3. Mayo Clinic -- Symptoms

    I probably was not as focused in my statement as I should have been. We were discussing Starbucks and their caramel syrup. If you take a look at the bottles the next time you are in their store you will see that they use Torani caramel syrup. Torani's website says that their caramel syrup contains gluten. It may or may not have to do with the color, but it does contain gluten. My experience has been that often times caramel and gluten go hand in hand, although that might not be a direct result of the color itself. Confirmation here: Which Torani syrups contain gluten? There is an interesting discussion on this website about 'gluten free' not necessarily being the same thing as 'does not contain gluten.' It will be nice when the day comes that the FDA decides to regulate what the words 'gluten free' mean right down to the parts per billion: Gluten Free Club - Article Well, when I ask is it really 100% beef what I mean is, is it entirely beef or does it contain gluten in some form, which is probably not the same way in which you are looking at the 100% beef statement. I mean that is really the point of this whole forum right... are we going to have a reaction. I am not 100% sure what to believe, but I will explain my logic of how I got to this point. I checked McDonald's corporate website and they say their beef patties are 100% beef, and there is no "contains" line next to that (other items like their buns have a "Contains: Wheat" line). But on the flip side of this as of January 2011, Livestrong.com was reporting that their beef patties contained soy and the seasonings used on the patty may contain wheat. My iPhone app "Is that Gluten Free? - Eating Out" has information on several restaurants but for McDonald's it says "Unverifiable." It then lists a letter of disclaimer received from McDonald's Corporation that basically says that they provide ingredient lists, they do not provide allergen lists. So that is basically CYA legalese if you ask me. I agree that there is a lot of confusion out there with fast food restaurants, but a lot of that is caused by them. I guess my viewpoint is that if a company is not willing to stand by a clear, direct statement that their product is gluten free then I don't consider it gluten free. Personally I've gotten sick too many times from restaurants that on first blush appeared to be claiming an item had a gluten-free status, when in reality they did not know that for sure and there was at least some degree of risk that it might. The last time I ate at McDonald's I got sick and so I have avoided the place, but it could have just been the food itself (I am just not a fan of fast food). If you have had more luck with them that's great to hear, maybe I am too cautious in this respect.
  4. Mayo Clinic -- Symptoms

    Hi Tim, well I'm a dude and I am almost positive I have Celiacs. It is interesting, I don't know that the disease is more prevalent in women or if it is just that most guys refuse to go to the doctor or talk about medical problems. After I started having my issues and told friends what I was avoiding and why, it was really interesting to hear the number of guys I knew who actually thought they might have similar problems but just never really pursued it. I sometimes think women in general are much better at putting 2 and 2 together and asking for help when needed, and we as guys have kind of been told our whole lives not to do that. You know, I have been to I don't know how many doctors, at one point really seeking out being scoped, and the thing is when you are young, in your 20s or 30s, a lot of doctors just won't sign off on doing it. I am not a doctor but having talked to many I think that they generally think that statistically it is just too unlikely for a younger person to have something severe enough to warrant it. Now that being said, if it is something you want done just keep pursuing it, maybe go directly to a GI specialist. I have been gluten free for over a year now and I feel great. I am able to eat lots of great food that is quite tasty, and I eat out often enough too. A couple of things about your post caught my attention. If you are still eating breakfast sandwiches, lots of food items from regular grocery stores, and drinking beer, you are almost certainly getting glutenized daily. The whole gluten-free thing doesn't work very well unless you are really hard core about it. In my case, how I am able to keep eating good food, and 'bad' food too like TV dinners, hot wings, etc., is I shop a lot at a natural food store that has lots of certified-gluten-free products. If you have a Whole Foods in your area, or a Natural Grocer, or CentralMarket, or any number of other similar type stores start shopping there. When eating out go to places that either have a gluten-free menu or are known to be fairly accommodating to people with gluten allergies, such as Outback. If you have an iPhone there's an app called "Is that Gluten Free? - Eating Out" that is sometimes helpful. You pretty much have to give up beer. You know my favorite beers are heffeweizens... German wheat beers. How ironic. But it just isn't worth it. There are some gluten-free beers out there but they are hard to find and generally taste like crap. Redbridge is a gluten-free beer made by... Busch I think? It's actually not bad. Since it is made by a major brewer you can usually find it in stores and a lot of restaurants are carrying it now. Liquor can be hit and miss. Generally I stay away from whiskeys/scotch's/etc. because I am not 100% sure that they are not gluten free. I have never had any problems with good clear liquors like Grey Goose vodka, Bacardi rum, etc. Watch out for mixers... sometimes the flavorings can contain gluten. Anything brown/with caramel coloring could contain gluten. That sadly even includes caramel lattes at Starbucks. I ended up buying my own espresso machine and buy the Starbucks espresso pods and make my own lattes now. I was finding that it was just too risky in the store because those guys never clean out the mixer cups thoroughly enough. Last thing you want is to be good and order a really plain drink only to have the last guys drink cross-contaminate yours and end up making you sick. I would ditch all fast food. Even just a "meat patty" at most of the major burger joints isn't really meat... it's like 50% beef and 50% wheat, soy, and other fillers. Besides if you're running and working out you don't want to be eating fast food. You're 24, time to upgrade your lifestyle anyway. Seriously though I have found that the 'fast casual' places like Qdoba generally offer better food and actually have gluten-free options. I haven't found many other safe Mexican restaurants yet... seems like even the corn based products are fried up on a grill right next to or on top of flour products. Ugh. If I eat Mexican I usually get something like pollo verde since it's just chicken and chile sauces and cheese. That has been fairly safe for me in the past. I usually avoid the chips. Margarita mix in my home town is usually gluten-free, but it isn't always a sure thing to be. Also you know at one point I thought eating Asian food would be a good way to get gluten-free foods, but you have to be careful with that. Almost all soy sauce contains wheat. San-J and the gluten-free version of Kikoman don't, but almost all the others are loaded up with it. So the bad thing is if you get something that isn't breaded and seems healthy at a Chinese place it could still make you sick because most likely it was cooked in wheat-containing soy sauce. Pei Wei and PF Changs have gluten-free menus and gluten-free soy sauce. Japanese food like sushi is usually okay if you avoid soy, but even the vinegar they use could contain malt/barley, but my experience has been that usually it doesn't or it isn't enough to make me react. Vietnamese food is usually pretty safe because it is one of the few Asian varieties that don't tend to use soy sauce. On the flip side, sadly, Italian food is almost never a possibility with me anymore... they use flour in everything. In general I avoid soups too because you never know when a chef has added some flour to thicken a soup up. After six months of going gluten-free you should be feeling a lot better, so maybe you are still getting too much gluten in your daily diet, or maybe the problem is something else, I don't know. Definitely keep after it. What you said about your family is similar to my situation... I have a great aunt who had colon cancer in her 50s. After talking about all of my Celiac issues, I come to find out that half my family hasn't eaten any kind of bread since they were in their 20s because it always makes them sick. How did that never come up before?? We all kind of talked about it and started to wonder if that wasn't the cause of all the older folks' in my families digestive issues, and if left untreated for decades if that wasn't maybe the cause of my great aunt's cancer. So keep pursuing it. Also you know there are lots of drugs out there that treat reflux, I had it a while before I figured out the gluten thing and was taking Nexium... it helped that particular problem quite a bit. But going gluten-free seemed to resolve all my issues entirely. You know something you said about all food making you sick reminded me of what they say about IBS, which is basically that. The bad thing about IBS is that you have to be tested for basically everything, and once they eliminate everything doctors throw their hands up and say 'must be IBS.' Try going really, really gluten free for a month or two and see how you feel. Like seriously do not eat anything unless you make it yourself and know what you are adding into your food, or just eat prepackaged things from a natural food store that is labeled gluten-free. That is eventually what I had to do. When it really worked I knew that had to be it. I've backed off from being that hard core now, but it was useful doing that at first just to really get a good handle on the 'control environment' if you will. I hear you about the boring food thing though. But keep looking into your options and reading up on it and actually once you start knowing exactly what to look for it suddenly gets a whole lot better.
  5. I don't go to Chipotle that often, I just happen to like Qdoba better, but you know with Qdoba that steamer that they throw the corn tortilla in to make it nice and soft is the same one they have been tossing flour tortillas in all day for their burritos. I stopped getting any of their tortillas or their chips just out of fear of cross-contamination of some sort. I gained this fear after a bad experience there once similar to yours. Now I just always get a 'naked' burrito, basically just the guts of a burrito in a bowl, without the wrap, and have been fine going on dozens of visits there now. Anyway just something to consider when out at any build-your-own-burrito place! Yeah I think what you said about your stool sounds accurate, at least that is what happens with me when I have been lightly glutenized. This is so gross... but my stools had been so soft or just liquid for so long that when I finally went gluten-free that the first poop I had after avoiding wheat was so huge and solid I thought I might die of a heart attack it hurt so bad, hahahaha. I guess I didn't realize how puny my prior bowel movements had become until that moment. If I accidentally eat a small amount of gluten it might start looking like weird shapes or fluffy again and I might have a bit of a rumbly stomach for a day or two, then all that goes back to normal. A large amount of gluten and I'll be in pain and rushing to the bathroom about 10 times in one day and then feel weak and want to sleep the rest of the day. Sometimes I get a headache too. A severe attack like that usually hits me as soon as 8 hours after eating gluten, or as much as 2-3 days after. 24 hours is probably about the norm for me though. I usually know right away that it is not going to be a fun day though, my intestines start making this 'popping' feeling... hard to describe.
  6. Thanks everyone for your posts, they were really helpful. I have to admit that I am a bit of a worrier-type personality, and the main reason I was wanting some sort of definitive "you are x" from a doctor is because part of me worries I have something horribly wrong with me and that somehow what I have done to fix it is just too simple to be true. You know how it is, getting ready for work in the morning I'll have the news on and they are just constantly trying to scare the living daylights out of everyone with these horrific medical warnings... I guess I just let it get to me too much and was hoping for a really black and white diagnosis to remove other possibilities from my mind and put me more at ease. But hearing everyone's remarks on the tests that are out there, and that many have done just what I did to conclude my situation makes me feel better.
  7. Hi there. Over a year ago I was having terrible stomach problems, pretty much what everyone describes here so I will spare you all the gruesome details. Basically, I started keeping a food log and realized that gluten kept turning up around the times I would get sick. For several months I went completely gluten-free, eating only things I prepared myself or only things from the health food store that were stamped gluten-free and were from reputable companies. I completely recovered and went back to feeling good like I hadn't in years. Then to complete my own personal self test I ate a pretty hefty amount of gluten... and got so sick. So in my mind I am 99% sure that I am a Celiac. For about the last year I have been completely gluten-free and feel fine. Occasionally I have problems, usually when I get caught off-guard having to eat out someplace unfamiliar. When this happens I have had less of a problem than in the past simply because I am better at knowing what to eat and what might be too risky. Prior to me doing the above on my own I saw several doctors who all had various theories and medicines they wanted me to try, which mostly didn't do anything. After my experiment above I relayed all of this information to my current doctor. He basically said that what I did is what he would have recommended. That there is a blood test, which is very unreliable, and there is a scope/biopsy test which is very reliable if you happen to be reacting at the time of the test (so it is still a bit of a crap shoot, no pun intended haha). So in the end he didn't recommend any tests and told me to just keep eating gluten-free. All this being said, it still bothers me that I have never 'officially' been diagnosed. Are there any decent tests available? I was reading online about a genetic/DNA test that looks at certain alleles/HLAs. Would that be a test worth getting? Does it really prove anything other than having the certain markers? I asked my doctor about it but he said he was unfamiliar with it. If a DNA test is worth it, which ones would you recommend? Thanks for any thoughts you may provide.
  8. Weird Thing

    This exact thing happened to me too. Back when whole wheat was the big health kick I just overloaded with it... have never felt so bad in my life. It has always made me wonder if doing that didn't push me over the edge into complete Celiac-dom. Interestingly enough, I too used to be able to eat really white/processed bread, but haven't risked it in a few years.