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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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zus888

I'm So Bitter And Sick Of It

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I think you and I have been gluten-free for the same amount of time. I just hit 6 months last week. The stages of grief are absolutely true! When I first read that, I laughed a bit, and didn't take that part of going gluten-free seriously. But I went through all 5 stages of grief, including the anger. I have also made some mistakes along the way, been glutened, and been angry about being glutened. BUT you will get through this, I can assure you. Let yourself go through the grief stages. It's ok!!!! You're going through a massive lifestyle change, and it's natural for it not to be easy. Just keep hanging in there!

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I don't really know why someone would miss gluten. I bake and everything I've made tastes as good or better (I love the almondy flavor Pamela's has) as gluteny things. I've made banana bread, oatmeal muffins, coconut cupcakes, cheesecake, chocolate chip cookies, snickerdoodles, on and on. All gluten free, and nobody can tell the difference. I have recipes for all these if you're interested.

I don't especially care for bread, so you've got me there. I eat Udi's occasionally but if I lived alone I probably wouldn't bother- it's mostly for my pb&j-loving sweetie.

In fact (and maybe this isn't what you want to hear) I love being gluten free. I do. I had to make changes in my life, totally, but most of them were changes I wanted to make anyway but put off. More fruits and vegetables in my diet. No more icky over-processed, bleached, god-only-knows-what-else carbs. Nothing fried. More organics, making stuff from scratch instead of buying things full of preservatives and carcinogens. Much less eating out (we save so much money). More than all of those things, really, is that I appreciate what being gluten free has taught me: namely, how to cook and really love food. I've morphed into a foodie- what once was a picky bland eater now dwells longer each time in the spice aisle and grows her own herbs. I've churned ice cream and made peanut butter. I spend lazy afternoons simmering chicken stock and I dream of canning home-grown delights and maybe someday owning my own bakery. I have the energy, at long last, to do the things I want to do- being gluten free did all of this for me.

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I don't really know why someone would miss gluten.

I am a foodie and as such miss gluten like crazy! When you are as passionate about food as I am, you naturally miss it. The best food (and top quality ingredients) is a gigantic part of my life. I have eaten in some of the top restaurants on the planet so when you have had the ultimate you never forget it. You are right - it is very simple to do a lot of great gluten-free baking that can be superior to things containing gluten but that applies to quick breads, cookies, cakes, brownies, muffins, cupcakes, etc. and not yeast breads, phyllo and puff pastry, bagels, English muffins, choux pastry, and so on. I miss the aromas, texture and structure in addition to flavour. The act of kneading dough for bread or buns is (was) an integral part of the experience to me. Now those are the things I miss because they just cannot be replicated whereas the other stuff can. Yes, I admit I am a bit serious about food and am a food snob. There - I said it! :P

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Man, I miss bread. I miss bread something fierce. And, that's the rub. If I had a day to binge, I would first go to Golden Corral and get salad and their dinner rolls. Mostly, the dinner rolls. That would be my meal: soft, buttery dinner rolls that practically melt in your mouth. Really, above all else, THAT is what I think about. BREAD. Yeasty yummy bread. Warm and soft, and chewy. Then, I'd probably have a pizza with a thick crust. Not sure what I'd have for dessert, but I wouldn't waste my time on something that could be decently replicated. The other thing I miss (but not yet) are my holiday cookies. I'm pretty sure that I'm not going to be able to replicate one of them, which makes me terribly sad.

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Man, I miss bread. I miss bread something fierce. And, that's the rub. If I had a day to binge, I would first go to Golden Corral and get salad and their dinner rolls. Mostly, the dinner rolls. That would be my meal: soft, buttery dinner rolls that practically melt in your mouth. Really, above all else, THAT is what I think about. BREAD. Yeasty yummy bread. Warm and soft, and chewy. Then, I'd probably have a pizza with a thick crust. Not sure what I'd have for dessert, but I wouldn't waste my time on something that could be decently replicated. The other thing I miss (but not yet) are my holiday cookies. I'm pretty sure that I'm not going to be able to replicate one of them, which makes me terribly sad.

I hear ya, Suzanna. I think a lot of us miss our old gluteny bread...and that seems to be difficult to replicate, try as we may. I'm not sure I really recall exactly what it tastes like as it's been a long while. Have you tried making gluten-free pizza yet...that is one thing I've gotten pretty good at. The cookies will probably be easier than bread and come the holiday season, I have a feeling you'll find a lot of recipes here on the forum.

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I hear ya, Suzanna. I think a lot of us miss our old gluteny bread...and that seems to be difficult to replicate, try as we may. I'm not sure I really recall exactly what it tastes like as it's been a long while. Have you tried making gluten-free pizza yet...that is one thing I've gotten pretty good at. The cookies will probably be easier than bread and come the holiday season, I have a feeling you'll find a lot of recipes here on the forum.

I agree with Sylvia! Don't give up on making gluten-free things yet. Pizza is really easy if you can find King Arthur's multi-purpose gluten-free flour and use their recipe on their blog. On the box of flour they have a recipe for popovers that is great! The popovers taste like a small soft dinner roll to me. For your holiday cookies I suggest you post the original recipe in the recipe section here and ask for help converting it to gluten-free. There are some amazing gluten-free bakers here. Just look at what Simona has recently been able to make: (If you search for her posts specifically you will see a bunch of other faboulous treats such as dumplings and cakes, etc.)

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You are very lucky to have a gluten-free household. My family refuses.

My saviours are chocolate and an antidepressant (I was on it before I became Coeliac).

I have serious issues with food and see a therapist who has helped me throughout. I also have fructose malabsorption which really limits my food. I miss apples and pears.

So my advice is to see a therapist and consider an antidepressant. The ad helped me feel normal.

Hugs to you!!

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I have been waffling about seeing a therapist and maybe even the antidepressants. I hate the idea of adding more drugs to what I already take (17 total daily). Plus, depression is one of the big indicators for me that something is amiss (either thyroid or getting glutened), so masking it may be masking a valid medical issue.

I would qualify myself as depressed right now, though it's not really affecting my every day living - just tainting my general world-view. I meant to call the doc today to have my thyroid tested again - I can't seem to get is stabilized.

I do have a pizza crust recipe that I got from food.com and it's pretty good. I'd rank it up there with an ok frozen pizza. But I just can't get the dinner rolls out of my head. They haunt me.

Even today, I was talking to someone about the diet, and I really had not one good thing to say about it. I did tell her that some people will say that it's not that bad, but that I hadn't found that to be true at all. I won't lie: I think it sucks. I would love to get out of that mindset because it does nothing but sabotage my whole perspective.

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I have been waffling about seeing a therapist and maybe even the antidepressants. I hate the idea of adding more drugs to what I already take (17 total daily). Plus, depression is one of the big indicators for me that something is amiss (either thyroid or getting glutened), so masking it may be masking a valid medical issue.

I would qualify myself as depressed right now, though it's not really affecting my every day living - just tainting my general world-view. I meant to call the doc today to have my thyroid tested again - I can't seem to get is stabilized.

I do have a pizza crust recipe that I got from food.com and it's pretty good. I'd rank it up there with an ok frozen pizza. But I just can't get the dinner rolls out of my head. They haunt me.

Even today, I was talking to someone about the diet, and I really had not one good thing to say about it. I did tell her that some people will say that it's not that bad, but that I hadn't found that to be true at all. I won't lie: I think it sucks. I would love to get out of that mindset because it does nothing but sabotage my whole perspective.

17 different scripts a day! Yea I would be reluctant to add another into the mix also. Do have your doctor review all of the meds and make sure that your mood issues aren't being caused by a reaction to the mixture. Many drugs can have side effects that can cause irritability and other problems.

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Oh, No! Not 17 scripts, 17 pills. Actually it LOOKS worse than it is. I have 4 scripts: Rx fish oil (2 pills, 2x daily - supposed to provide anti-inflammatory effects), something to keep crohns in check (3 pills 2x daily), and another for my liver disease (2 pills 2x daily - although there are no studies to prove that it actually provides any true benefits for the liver disease), thyroid med (1x daily), OTC allergy, and OTC vitamins. So, it's a lot of pills to keep track of even though there's only 4 scripts.

I have a lot of issues going on, just like many of you. Unfortunately, none will be resolved by the gluten-free diet.

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Oh, No! Not 17 scripts, 17 pills. Actually it LOOKS worse than it is. I have 4 scripts: Rx fish oil (2 pills, 2x daily - supposed to provide anti-inflammatory effects), something to keep crohns in check (3 pills 2x daily), and another for my liver disease (2 pills 2x daily - although there are no studies to prove that it actually provides any true benefits for the liver disease), thyroid med (1x daily), OTC allergy, and OTC vitamins. So, it's a lot of pills to keep track of even though there's only 4 scripts.

I have a lot of issues going on, just like many of you. Unfortunately, none will be resolved by the gluten-free diet.

Whew, glad to hear that. Do be sure to have them do rechecks on your liver panels frequently. I don't know what liver issues you have but many of us to have liver panels that are off when we are diagnosed that resolve with no meds after we have been gluten free for a while. I had a problem finding fish oil tabs that were soy free. I don't know if you have issues with soy but if you do make sure they don't have soy in them. I finally found a cod liver oil cap that was just cod liver oil. I hope you are feeling better soon. Your allergies may also calm down. I showed allergies to 98 out of the 99 things I was tested for prediagnosis and felt like I needed to live in a bubble. Within a few months only 4 remained and they are not really severe at this point. Hopefully yours will resolve also. It can be amazing how much celiac impacts our systems and how much can resolve that doesn't seem to be related after we heal.

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That's actually quite interesting. It's ragweed season up here and normally (even with shots) I'm completely miserable, but I'm not having any more of a problem than a slightly runny nose. I don't know if the pollen isn't that bad or what. I thought it had more to do with the shots and my allergy meds, but maybe I'm wrong. I have tried going off the allergy meds, and have had no luck at all with it. But, in a normal year, I'm miserable with the shots AND the meds - that's how bad I reacted. So, maybe gluten-free IS actually making a noticeable effect?

Oh, and I have been diagnosed with Primary Sclerosing Cholangitis. A study showed no difference between those who went gluten-free and those who didn't. Apparently it has no effect on the progression of the disease. I try not to think about it, though.

Going to Outback tonight for my birthday dinner and then having an almond torte from Gluuteny. Man, I really hope it's good. If not, I'll just have to make my own cake for myself tomorrow. But today, I'm NOT cooking!

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I thought at first relief when I was told what was wrong, and the diet didn't bother me much other than it's so damn costly and there are close to no products in my country.. but at least you can make alternatives and some are better than the originals.

But gotta say, it depresses me so when I go downtown and I can't go to a restaurant with my boyfriend and he doesn't wanna be limited by me. I said before I went on the diet that I was worried how it'd bother him cause in a way it'd restrict him too, but he said it'd be no problem. It's just not how I felt lately. And when people make homebaked cakes at work and I gotta say no.. man, it kills you socially. Who knew food brought people together as much as it does. This diet basically restricts you in all sorts of food and makes you hypersensitive towards other food too .. No wonder it makes a lot of us bitter.

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Yeah, you have to develop a new outer skin that both makes you impervious to the dubious delights of gluten, and at the same time allows you to be super nice to people who offer it to you, and not bore them to death with why you can't eat it :lol: You also have to learn that it is the social part that counts, not the food, and focus on that, otherwise you run the risk of being ostracized. There's nothing that will turn you into a good cook more than a diagnosis of gluten intolerance. Blow them away with your gluten free goodies. Sorry I can't help with the boyfriend part. Either he gets it and will be supportive, or he doesn't and won't. :(

By the way, welcome to the forum :)

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That's actually quite interesting. It's ragweed season up here and normally (even with shots) I'm completely miserable, but I'm not having any more of a problem than a slightly runny nose. I don't know if the pollen isn't that bad or what. I thought it had more to do with the shots and my allergy meds, but maybe I'm wrong. I have tried going off the allergy meds, and have had no luck at all with it. But, in a normal year, I'm miserable with the shots AND the meds - that's how bad I reacted. So, maybe gluten-free IS actually making a noticeable effect?

Oh, and I have been diagnosed with Primary Sclerosing Cholangitis. A study showed no difference between those who went gluten-free and those who didn't. Apparently it has no effect on the progression of the disease. I try not to think about it, though.

Going to Outback tonight for my birthday dinner and then having an almond torte from Gluuteny. Man, I really hope it's good. If not, I'll just have to make my own cake for myself tomorrow. But today, I'm NOT cooking!

I used to get a serious cold or bronchitis twice a year. Now I haven't had a cold in almost two years. It used to be a big problem, because all of the OTC cold remedies make me break out in hives. So I just sufferred through the 1-2 weeks I had the cold with homemade remedies. (Chicken soup, Vick's Vaporub.)

You're going to get some weird blood tests if you have secondary food intolerances going on. I've been dx with Mixed Connective Tissue Disease and a weird lung disease. I insisted that they repeat my blood tests and they came back normal. My guess is that something else is bugging you, like soy. Soy's in everything, like mayo and all processed foods. I'm just guessing though... could be completely wrong.

The only reason I mention this is that I noticed from previous posts that we've shared quite a few symptoms.

Hope you have a really happy birthday, and wish you the very best. :D

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Yeah, you have to develop a new outer skin that both makes you impervious to the dubious delights of gluten, and at the same time allows you to be super nice to people who offer it to you, and not bore them to death with why you can't eat it :lol: You also have to learn that it is the social part that counts, not the food, and focus on that, otherwise you run the risk of being ostracized. There's nothing that will turn you into a good cook more than a diagnosis of gluten intolerance. Blow them away with your gluten free goodies. Sorry I can't help with the boyfriend part. Either he gets it and will be supportive, or he doesn't and won't. :(

By the way, welcome to the forum :)

Thank you =D! And good point with the social part which is what counts instead of the food. And I think you're right about becoming a good cook cause you learn to make everything from the bottom.

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    • Hey!  I also recently started a gluten free diet because of non Celiac's gluten sensitivity, and as a college student who can't really eat in the dining hall or participate in late night pizza runs, I totally understand where you're coming from. First things first: you probably aren't as much of a burden on people as you think you are. They most likely understand that this is a big transition period for you and will take time. If you are really worried about it,  just talk to them, explain your concern and try to come up with a plan. I have found that if I don't make a big deal about being gluten free, neither will anyone else. The first time or two matter of factly explain that you cannot eat gluten for medical reasons, after that, if someone offers you something you can't eat, I have found it to be best to just respond with a simple "no thanks!" As far as making sure you don't starve, nut based granola bars (such as kind bars) are your best friend. I always try to have one or two handy, especially on trips! ( I like to have savory ones, like Thai chili flavored, that way it feel more like eating real food than sweet flavored ones!) That way, if there is really nothing you can eat, you always have something. I also scoured celiac and gluten free blogs my first few weeks and figured out what fast food places have Celiac's and NCGS friendly options (Chick-fil-A is a good one, I usually get their fries and request that they fry them in their designated gluten free frier, and a side salad, Wendy's is also good, you can get any of their baked potatoes, chili, or side salad with no croutons, there are a lot of other places too, but there are my favorites) I have found that a lot of times there are things that we can eat places, but because Celiac's and especially NCGS is something that has just started to get more attention, most people, even those working at restaurants just aren't familiar with it, and most restaurants do not have a designated gluten free menu. Your smart phone and Google are also great, I am all the time in a  restaurant googling "does (restaurant's dish) have  gluten?" Usually we can eat salads, and burgers and such without buns, but it is always a good idea to just tell your waiter or the person taking your order something to the effect of " hey! I am unable to eat gluten for medical reasons, which means I can't have things made with wheat, rye , or barley, or anything that touches things made with it, I was hoping to have (dish), Which isn't made with any of these things, but was wondering if you could use clean utensils and preparing area, that way I don't get sick! Thank you!" Usually people are more than happy to help, they just don't understand your situation. As far as you feeling like less of an outcast, this transition period has been a great time for me to realize the importance of hanging out with people and enjoying their company, even if you can't fully participate. No one really cares if they are all eating pizza and you are eating a sandwich you brought on gluten free bread. People are going to express concern because they care about you and don't want you to be hungry or feel left out. Whenever someone says something like " oh will you be able to eat anything here?" Or "oh I'm sorry I'm eating (delicious gluten thing)" just not making a big deal out of it and saying something like "oh I'm good anywhere!" (Because you are with your granola bar! Also you can almost always eat salad) Or "no, you enjoy what you like!" Will make you and them feel better. For a while you will feel a little left out, and that is okay, but I have found that I am so much happier when I go on that pizza run with my friends and a granola bar, even if at first you have to fake it till you make it! Good luck! I know it isn't easy, but it does get better!💙💙
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    • Hi Gemma, Welcome to the very select, exclusive, super secret club of NCGS (or I if you like), where you get all the fun of living the gluten free diet with the added scepticism of half the medical establishment and most of the general public   If you're interested in learning more, there's some good resources collected here:  Feel free to add or just post there if you like.  It's great that the diet is working for you. The emotional side is difficult no doubt. It does get easier, trust me, for you and those around you also. You get better at planning, at coping, at working around it etc. The availability of safe foods and wider knowledge continues to improve year on year.  I've barely been back to Germany, one of my favourite countries, since going gluten-free but take some comfort in the fact that its always harder in a different country with a language barrier as well, but even so there's hope: https://foursquare.com/top-places/berlin/best-places-glutenfree-food https://www.tripadvisor.co.uk/Restaurants-g187323-zfz10992-Berlin.html You maybe need to accept there's a level of preplanning needed now that wasn't there before and if you do that you can still be spontaneous in other ways? Expect some setbacks, at times its ok to cry. Or, er happen to get something in your eye if you're a strapping bloke who should know better  Keep a good supply of nice safe snacks and treats at close hand. In your car/bag/pocket. Eat well before you go out. Have your freezer well stocked with nice safe food and your fridge too. Get to know what easy safe options are available, Are you in the UK? Join Coeliac.org and they'll send you the brilliant guide which will unlock so many safe, cheap foods, also available as an app. And post here, lots of good people with advice and support. Best of luck, Matt  
    • Hi All,  Recently (Nov 2017) I was diagnosed with NCGI by my consultant at hospital, this diagnosis has been after years of testing, colonoscopies, endoscopies and a 2 stone weight loss - it took the weight loss for me to finally be taken seriously by dr's. (I was tested for celiac around a year ago, all clear). I'm looking for advice to help me cope with this diagnosis, albeit I am thrilled that I potentially do not have anything life threatening (still undergoing tests, hosp visits etc.) but on the whole, I'm feeling hopeful that gluten may be the root cause to all my ailments and symptoms.  From diagnosis, I have cut out gluten completely, and apart from the odd slip up or cross contamination incident I have noticed a drastic improvement in my life quality and my time spent inside my bathroom walls has dramatically reduced. (TMI?)  The problem I am currently having is that I feel completely isolated from everyone in my life, I feel that me having to follow this strict diet is putting a burden on loved ones, especially when it comes to travel & eating out. (Was over in Berlin over the weekend, spent a good 5 hours over the weekend crying at being a burden to my BF restricting where we can eat, and also the fact that the majority of places we tried to dine, bar one or two, did not cater to the diet).  I thought I was coping with the diagnosis well, however the crying spell and fed up feeling with it proved I'm not. Does anyone have any good tips they followed and can recommend when they were newly diagnosed?    Xxx
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