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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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rymorg2

Depressed About Eating A Restricted Diet

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Hi all....today I'm feeling a bit under the weather. My diet is gluten free, dairy free, I try to eat soy free and I can't have eggs. I have to eat low purine foods which means even some meats are off limits! I know there are others out there with a severely restricted diet....how do you cope? I know that the less often I eat these foods the better off I will feel but I don't know how to handle it right now. I feel really good physically and I've only been eating this way for about a month but sometimes I get psychological cravings too. So far I've managed to tell myself that feeling better is more important. Any coping advice?

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I know exactly how ridiculous it is to not be able to eat perfectly healthy and normal food! I've had a lot longer to deal with it, it has been about 7 months for me and it also may or may not be permanent, I don't know yet. At this point I make jokes because I can either laugh about it or cry about it. I mean, I can't eat spinach and come on, how stupid is that? My husband will find something that he thinks is awesome for me and be like "can you eat this?" and I"ll read the label and hand it back "nope, it has blindness in it." I'm much happier having vision in my left eye, it doesn't make not being able to eat things like leafy greens, beans, for a long while nuts, or fermented foods (which meant not having a traditional New Year's with sauerkraut) suck any less. It just gives it reason and makes it bearable. Being able to make jokes, at this point because there is SO MUCH that I can't eat, makes the difference between it just being another part of my life or going crazy.

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Thank you Adelaide it helps to know I'm not alone in this. No one in my immediate family has these issues and my husband and I go through the same thing in the store. It means I'm surrounded by food that makes me feel like crap and the knowledge that it's the forbidden fruit so to speak. So far I've managed not to give in. But it's hard.

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Hi Rymorg,

Maybe you can look at it another way? You can eat as much of the non-forbidden foods as you want right? And you can combine them anyway you desire. Or modify them with various spices or flavorings or different combinations. Perhaps you can think up a special treat for yourself that you only eat when feeling deprived? Or once a year or so? For me my food cravings went away over time as I got used to eating differently. I really think a lot of it is habit. We are used to eating certain things as we grow up and get in the habit of thinking they are "the" food for us. But there are lots of other foods in the world to choose from. It may take some effort to find them and figure out which ones you like though.

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Thank you that's a very good idea. I have been trying to find substitutes for the things I have been craving which works to a certain extent. I will try this as well.

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Hi rymorg,

I'm also gluten/dairy/soy and mostly egg-free, and yep, it's tough. I miss cheese so much! And soy is the root of all evil. It's been really tough, not just because I can't eat what I want, but because it's so damn hard to avoid. A bit of soy-lectin and I'm screwed. I definitely get depressed about it sometimes, but think, well, it could be a lot worse.

Instead I have definitely found substitutes. I'm a popcorn addict (corn is still ok. fingers crossed), drink almond milk, get nice gluten-free/Vegan/soy free treats where I can. The best way is to appreciate the fact that you feel good by not eating those things, so best to keep it that way.

And yeah, I'm the same with the label reading: Oh, this is gluten free! but it has all the other things I'm not allowed to eat. Yey...

It's a tough slog, no doubt, but stick to it and you're body will feel better, and then Iikely you'll feel better about the whole thing and can simply adapt and live your life... vegan cake and all.

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I try to think of eating as a necessary bodily function. I try not to think of it as something pleasurable or non-pleasurable. Just necessary, like breathing or going to the bathroom. I get it out of the way and get on with the rest of my day.

That being said, I can NOW eat things I enjoy. For the first year it was just 11 foods (including butter and salt), and it was eating to stay alive, but I thought eating because it tastes good was never going to happen.

Eventually I was able to add a lot back. Maybe if you can think that way (necessary function but maybe in a year or so you can start eating treats again), it'll be easier.

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Hi all....today I'm feeling a bit under the weather. My diet is gluten free, dairy free, I try to eat soy free and I can't have eggs. I have to eat low purine foods which means even some meats are off limits! I know there are others out there with a severely restricted diet....how do you cope? I know that the less often I eat these foods the better off I will feel but I don't know how to handle it right now. I feel really good physically and I've only been eating this way for about a month but sometimes I get psychological cravings too. So far I've managed to tell myself that feeling better is more important. Any coping advice?

I was diagnosed with celiac disease and later reactions to dairy, soy, egg, cane sugar, vanilla and nutmeg. I know all those foods cause extreme pain and bloating, except cane sugar, which also causes nausea and tachycardia. I initially abstained to feel better. I eventually realized that all those restricted foods were 'ingredients', not just specific foods. So, when I changed the ingredients by finding substitutes for everything I can't eat, I learned to bake (with great allergy free baking books) and prepare almost anything I previously ate (before diagnoses). I'm lucky that most of my allergies are just ingredients which I can replaced in baked goods and other dishes. (I recently made gluten, dairy, soy free lasagne!) My husband has specific food allergies (blueberries, grapes, almonds, sesame), as well as some 'ingredient' foods. Nevetheless, even he learned to substitute other foods. We've discovered many new ethnic cuisines, which we previously would never have considered. He was rather 'picky' about what he ate, but allergy diagnoses forced him to try many new foods, most of which he likes. I was diagnosed later in life. So I figure that I spent enough years eating egg in various forms and cottage cheese, usually as part of 'diets'. Now i focus on all the foods I can eat, which I previously overlooked.

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I have a friend who's vegan, so when I make things to bring and share I always make it gluten free and vegan. If you start looking at all the (non soy based) vegan items and then just edit them to fit your other needs it makes it a lot easier to find other substitutes and food items so that you don't feel as restricted. If you keep forcing yourself to think that way and outside of the box eventually the cravings will lessen a lot. =]

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Thank you all that is great advice. I'm feeling a little better about the whole thing...and feeling a little better physically helps. Thinking about how bad I feel when I eat those things helps me to avoid eating them, even if I really want them. I've just had enough of being sick and worn out.

My husband is the cook in our family, and does a good job at making things we can all have, as well as keeping the utensils he uses when cooking gluten free seperate. We've experimented some, but I think we need to branch out some. He made me some fish yesterday....flounder....and while I'm not normally a fish eater I've found several types that I actually like.

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On top of Celiac, I can't have peanuts, and have now gone entirely grain and sugar free

in an attempt to control some pretty intense system-wide inflammation. Also, a lovely gift

from my ex-boyfriend before I broke up with him left me with cold sores, which I never got

before, so now I have to observe the herpes diet if I don't want outbreaks. Which means

no (or low) nuts, seeds, and chocolate. So much for that Paleo fudge made from almond

butter! Sigh..... I feel your pain darling. It really is worth it to feel good though. The longer

you feel that healthy, the easier it gets to tell yourself, "Yes, this is worth it."

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Thank you as well. I have found it getting a little easier again, but it's nice to know I'm not alone.

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Well I'm doing a but better now. It's getting easier even if my diet is still limited I feel so much better it's not worth it to cheat. I'm gluten free, dairy free and for the most part soy free as well. I'm traveling out of town next week for work so we will see how that goes.

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Many of us here understand where you are ,, we have been there. Try not to concentrate on what you can not consume , try to concentrate on what you can consume and how healthy your body will become .

** I am gluten,soy,corn, sugar/artificial sweetener and peanut free. I am grain free with the exception of rice ,which I strictly limit . I am mostly nightshade free and I am limited in the fruits and vegetables I can eat. I limit the amount of dairy and legumes in my diet . I can not eat chicken or beef. Most meats do not agree with me.

But I still find plenty to eat :D As someone already said , it takes changing the way we cook/ think about food but ...............

I feel better today than I have EVER in my entire life . THAT is soooooooooooooo very worth the limited diet .

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Oh yeah I forgot artificial sweeteners too, and nightshades. I'm not completely sugar free but I do limit it. I can't have eggs or turkey or beef either. Corn is ok. I think that's part of what's made it easier is changing how I think about it.

But it's certainly nice to know I'm not alone.

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Hi rymorg2,

I don't have much to add other than to echo what everyone else has said on here. I am in the same type of boat as you. Gluten-free vegetarian who just had a food intolerance test reveal that I now need to try going yeast-free, oat-free, dairy-free, peanut-free....and the list goes on. I try not to let it get me too down. I go back and forth between allowing myself to have a moment of "this sucks" and then turning around and saying "but in the grand scheme of things this aint that bad". I agree with all the recommendations on here - it's not about eliminating as much as replacing. I can't have peanuts, but I can have almonds! Etc. And the idea of a splurge, or highlight is a good idea too. I try to focus on the things I can have. Like when I find something good that is actually "everything-free" I really celebrate it. I'm hoping that'll I'll be able to reintroduce some foods back into my diet in a couple of months, so I've used that to cope mentally (thinking some things *may* be temporary).

Anyway, you are definitely not alone. Good luck. ;)

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WOW!!  7 days after changing my diet and lifestyle,  I have noticed a HUGE difference in how I feel to be gluten free.  I want to thank this forum for sharing all of their experiences and keepeing me positive through this.  I am seeing and feeling positive changes and could not be happier. :D  I have more energy, no more belly cramps, elevatet positive mood, am actually enjoying the foods that are available etc.

I do have one very strange thing happening now.  I crave salt. Onion salt, Garlic salt, not so much sea salt.  Any idea why this could be?

 

Once again, thank you all for your support. I will continue to post my progress along the way.  This week will be a test.  I am traveling and living in a hotel for a week. I have some gluten-free snacks with me but will have to search for gluten-free fre restaurants.

 

Wish me luck! ;)

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I hope it goes well Michael!  Look for fruits, nuts, and salads.  The usual problem with salads is they put croutons on them by default, or throw a chunk of bread on them.  Make sure they know you don't want that.  Sometimes restraunts can provide a couple of veggie side dishes.  I had those a few times without problems.

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WOW!!  7 days after changing my diet and lifestyle,  I have noticed a HUGE difference in how I feel to be gluten free.  I want to thank this forum for sharing all of their experiences and keepeing me positive through this.  I am seeing and feeling positive changes and could not be happier. :D  I have more energy, no more belly cramps, elevatet positive mood, am actually enjoying the foods that are available etc.

I do have one very strange thing happening now.  I crave salt. Onion salt, Garlic salt, not so much sea salt.  Any idea why this could be?

 

Once again, thank you all for your support. I will continue to post my progress along the way.  This week will be a test.  I am traveling and living in a hotel for a week. I have some gluten-free snacks with me but will have to search for gluten-free fre restaurants.

 

Wish me luck! ;)

Have you had your thyroid checked??

 

most onion salt and garlic salts  have  added iodine ,  most  sea salt does not ..

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I joined this forum for the first time in 2000 or 2001.  Have spent the past 12 years going through the same things as all of you in the posts above, I always think it will get easier, and, certainly, at times it does seem easier, but it seems that being intolerant of all grains, all milk & dairy, egg whites, yeast, casein, whey, maltodextrin, modified food starch and msg is definitely a daily challenge.  Learning to cook almost all foods at home and to be so diligent when eating out have been two concerns.  Reading those tiny ingredient labels always makes me wish I had a magnifying glass at the store, and figuring out new and appetizing recipes keeps my brain functioning continuously, but, I think, the greatest challenge is mixing with other people socially, because just about each and every social activity centers upon food.  "Oh, you can't eat that?' or "Can't you have just a little bit?" seem to be common responses, and then the lengthy explanations begin, but I must say that more and more people are now aware of their intolerances, and are living with the same challenges we do.  Today I read about the flak Gwyneth Paltrow is taking for keeping her two kids on special diets because of gluten and milk allergies.  To those of us who are working so hard to be healthy, and to encourage others to do the same, I send special greetings this Memorial Day.  We are still here, and we are still working to be strong.  Happy Day! 

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   Learning to cook almost all foods at home and to be so diligent when eating out have been two concerns.  Reading those tiny ingredient labels always makes me wish I had a magnifying glass at the store, 

 

 

I DO take a tiny magnifying glass to the store with me! :)   and check out "find me gluten free" to see if anyone has posted a review for a local safe place to eat out.

 

As for restricted diets, well,  I have been there/done that so many times....but it does get better.

 

if you are 12 years into a gluten-free diet and still do not feel well, you should seek out a good GI doctor and find out why. You may have something other than celiac going on. IMHO

 

You deserve better!

 

and the flack Gwyneth Paltrow gets is not because she has her kids on a gluten-free diet (because it probably helps them) but because she also admits "she lets them cheat"--OFTEN.

 

I want to say to her: Either you do this full- fledge for health reasons or you do not. Otherwise, you just seem foolish and you make those of us who need to be gluten-free to LIVE look equally crazy to others. .

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Hey, I really admire you for keeping your head in the game.  If you're on here posting about your experience that implies to me that you're fighting the good fight.  My diet isn't as restricted as yours so I can't totally relate.  I know it takes willpower to kick gluten to the curb so restricting other ingredients really shows you're disciplined.  Good for you!  Hang in there.  Can't be easy.

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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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