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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Pity Party
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17 posts in this topic

I'm new to this forum and new to Celiac and hoping you all will make me feel better. I've been gluten-free since Jan. 2nd so it's really new. I was diagnosed with Celiac right after Christmas, but it took me a few days to wrap my head around the diagnosis and make the decision to go gluten-free.

I have so many friends who are encouraging and trying to be nice by sending me links to gluten-free food blogs and gluten-free recipes. I just want to throw myself one big pity party, and I feel like no one understands. I actually feel like I'm going through the grieving process which seems silly, but yet I can't help it.

Prior to diagnosis I probably ate out at least 3-4 times a week. Now I avoid going out like the plague because I hate making a big deal out of this. I wanted to crawl under the table the first time I ate out when I had to ask the waiter how the steak was prepared and stress the fact that I was doing this for health reasons and not because I was on a fad diet. I'm getting better at it, but I'd still rather just eat at home now to save myself the hassle. This is also a problem because I've never been much of a cook. My idea of cooking was taking something out of the freezer and zapping it in the microwave. I'm getting better at cooking and am trying out recipes that are naturally gluten-free so I don't have to futz with expensive ingredients. I don't really miss bread, cakes, or cookies until someone is eating it right in front of me.

My well-meaning friends will say things like "It's so much easier now" or "you should go to xyz blog for recipes". Easier is a relative term. Yes, it's easier than it was, but it's still hard as heck for someone who isn't used to paying attention to every little ingredient on a label. Yes, there are restaurants that serve gluten-free items, but I still have to think about what to order and it's probably NOT the item I'd prefer to order. Yes, I can go to any number of blogs for recipes, but since I'm not much of a cook it requires a big lifestyle change to plan meals well in advance so I make sure to have all of the ingredients in the house. Yes, I can make my own Girl Scout cookies, but it would be a heck of a lot easier to just open the box that's in the pantry, and do we need another couple dozen of the exact same cookie in the house (of which we already have 7 boxes). I know all of the things I'm supposed to do. I know all of the foods that I can eat. I know all of the reasons that I need to do this. I don't need advice.

I just want someone to say "I get it. This is hard. It's a complete lifestyle change." I want someone to tell me that it's normal to be pissed off. I want someone to say that they went through this too. That they too went through a grieving process, but that it got better. I know I'm not dying of cancer, but is it so wrong to expect a little bit of sympathy from my friends and family?

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hi im relatively new here as well, joined beginning of jan,

i was diagnosed negative for celiac - but im convinced im wheat and dairy intolerant. im currently making changes in my diet to make it gluten/dairy free. i also hate cooking, but ive bought myself a few cookbooks and im going to try a couple of recipes a week. :( your in the right place, loads of people will answer your post.

i cant begin to think how hard it would have been to be diagnosed and have to make the changes - im putting it off a lot coz i know i dont "have " to do it. im gonna use up the old gluten stuff and slowly change it for gluten free .hopefully in about a month i,ll be gluten and dairy free and i,ll see if it makes a difference to my health. i dont get how your friends could think its easier now- its a complete pain in the arse!!!!! lol at least they are being helpfull by suggesting recipes and websites. maybe instead of going out you could invite them round for a "gluten free party" where they can help make and try out some of the gluten free recipes your gonna be creating. they will then understand that its not just the food you have to worry about -its the preparation, the fact that the utensils are,nt contaminated, that you cant use the same knife to cut their bread then yours ect,ect. cooking is more fun when your not cooking for one. oh and i,d say its perfectly ok to feel really pissed off :)

let us know how your getting on with your cooking- im just gonna look through my new cookbooks for inspiration :mellow:

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It is a grieving process, and you are normal. Be pissed, God knows I was. I cried until I was physically ill when I was diagnosed, it also took me a while to get things organized enough to be ready. I got the call a week or so after Christmas and went gluten free 2 days after my birthday, which is just over a year ago now. For the first weeks I would find myself crying for no reason, or for any reason. Logically it all made sense, I understood the need and was never truly tempted not to do it. Emotionally all I wanted was to be normal. You aren't just changing what you eat, which is huge by itself, you are making huge lifestyle changes as well with things like not being able to eat out so much. (At least not stress free.)

You are so right that "easier now" doesn't mean easy. I wasn't used to cooking either. My idea of cooking was being able to use a crock pot and make grilled cheese. That sure has turned around in a year! A little at a time I have gone from a simple grilled cheese master to an actual decent cook. I've even begun taking up baking. You may find over time that cooking is not only easy, but fun. Or you may not, but it will always be necessary for us and so you're stuck with it so you may as well learn to enjoy it!

So, it has been a year for me. In regards to the celiac symptoms I am feeling loads better. I don't feel 100% but I feel so much more amazing then I ever remember feeling in my life. It is phenomenal. No matter how rough your roughest days, it is worth it. (Don't let those of us with additional problems get you discouraged or freaked out from our signatures!) So rant, be pissed off, cry about it, grieve, mourn, get it all out. Poke around a little here, don't miss the newbie thread and head on over the the baking and cooking tips for threads on what's for dinner/lunch/breakfast for plenty of wonderful ideas on what to eat. They'll help you get started since you aren't much of a cook.

You'll get by just fine. Welcome to the family!

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Of course it's normal to be thoroughly pissed off about this whole thing. It sucks big time!!! And yes, grief is the right word. You grieve for what you have lost and will never have again, the total freedom to eat whatever you want wherever you want. It ain't gonna happen no more, and that's the bitter pill we have to swallow. Do grieve for that. So I am here with you at your pity party. Gluten free ice cream, anyone? Fortunately, it's only the cheap and nasty ice creams that have all the gluten -- all the gooooooddd ones are gluten free, so aren't we lucky?? Yeah, I know, it is going to take a while to see the positive side, but it is there so don't grieve that you have to eat the good ice cream :) . You will be eating a lot healthier because you will learn how to cook all those whole foods because you won't be able to afford to get all your gluten free food in boxes, believe me. So there's two bright sides, healthier and saving money on whole foods. :D Plus healthier without the gluten burden. But do grieve that every time you buy something in a box you will have to take a magnifying glass and read the label from start to finish.

Grieve that you can't just leave the house to go to (fill in the blank - fair, movies, picnic, baseball game etc.) without taking something with you to eat. Grieve that you can't go on a road trip without stocking the car with gluten free goodies , heck just plain old grieve for that loaf of sourdough french bread or those phyllo dough bundles or whatever floats your boat. Go ahead, grieve. Go through alll the stages including denial (think you've already been there), anger, etc., and you eventually come to acceptance and the necessary life change - like throwing out everything with gluten in your house (unless you have a shared living situation :rolleyes: )

Once you get through all those stages things will be a lot easier, it will all come naturally. Take some cooking classes if necessary, watch cooking shows on TV (even though they use gluten, you will learn how to prepare things and then you have to learn how to sub in the gluten free alternatives), but start easy, with things like poached and scrambled eggs. Get yourself some Pamela's Baking Mix and you can make your own pancakes, waffles and cookies. Roast up some vegetables in the oven with a little olive oil, salt and pepper. Saute, bake, grill, roast simple meat dishes. Get yourself a crockpot where you can just toss all ingredients in the pot, turn it on and leave it all day, and presto, there is dinner when you're ready for it.

You can do all this, and it's okay to grieve in the meantime. :)

You will find out who your real friends are rather than the fair weather ones - you know, the ones who will insist on going to Applebee's even though you know you couldn't possibly eat safely there and tell them so. So grieve for them a little bit but not too long because they are not worthy.

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Oh, how well I understand! I think I said almost the exact same words about not being much of a cook, and taking something out of the freezer to zap in the microwave. Even the part about eating out all the time. You are not alone!

After I had been gluten-free for a few weeks I started develpoing other intolerances too. I was down to 11 safe foods for a while. I learned to think of food as a necessary evil, but I didn't think I would ever enjoy eating again. It took quite a while, but eventually I was able to add some foods back.

I still hate to cook, but I usually cook in large batches and freeze meals so I can still pull something out and mic it. You'll be OK. We're here to help. :)

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Welcome to the forum :) I have been gluten free since October and it is hard to adapt too. I have been eating my whole foods and veggies with dinner and have been trying different kinds of rice. Luckily I eat an egg white & cheese omelette for breakfast everyday so I didn't really have to give up much for breakfast food (like bagels, toast, waffles....) and I do like to cook and try new recipes (although my husband is a steak and potatoes kind of guy so I usually dont get too fancy!) Its an adjustment and I recently was feeling down about everything as well (and lonely) BUT since then I have been visiting the forum much more often and reading more.. and you are in the right place, the people here are wonderful and we understand the frustration you feel! :D

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Thank you everyone for making me feel normal and welcome! Most people make me feel like a whiner. For some reason I'm just in a really angry mood lately. I was doing so well for the first two weeks. I don't know why it just hit. Clearly I'm in the anger stage of the grieving process.

I have been playing around with real cooking for the last few weeks. Unfortunately, I have a family that isn't very tolerant of my situation. I sometimes find myself just zapping microwaveable meals for the kids because they aren't digging my risotto or gluten-free pasta dishes :) They did all love my roast chicken, though, so yea me! So, while I'd love to just put all the gluteny stuff in the trash, I keep it around for my hubby and the kids to eat. I'm just careful about CC when I prepare food. It's not that hard. Maybe I can turn them to the dark side at some point...or at least when they are eating at home.

I think I'm also a little confused because the doctor said that I had a "weak positive" - whatever the heck that means. I thought you either had it or you didn't have it. He said I could just eat normal and then come back in 3 years for my routine colonoscopy to see if it's any worse. He seems to think that all of my pain is due to IBS. I'm not even sure if I need to be doing this, but I have been feeling some better so it seems like I should stick to it. Especially when I read some of the things on these boards. It seems like even doctors don't give a lot of credit to the gluten-free lifestyle.

In any event, thanks for cheering me up a little bit. I'll keep poking around on the other areas of the site to see if I can get more tips and tricks. In the meantime, feel free to keep trying to boost my mood :)

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What does weak positive mean? Well, you really should get a copy of your test report so you can see for yourself, but here is a cheat sheet. Each lab sets their own reference ranges for the celiac tests, depending on a number of things including the equipment they use. They usually give three ranges (I will just give an example of a possible set of ranges):

0-4 negative

5-9 weak positive

10 or more positive

So in this example you would have scored somewhere between 5 and 9. Obviously, the closer to 9 you are the more likely you are to be celiac, because 5 is only just over negative. Now these are obviously not precise scores as you can see and there is a little bit of wiggle room. So if you were an 8??? Could be. Many who are initially weak positive go on to become strongly positive later on, that's why your doctor said come back in 3 years -- by which time you could have really severe damage in your small intestine and take much longer to heal.

Nine out of ten of us here on the board have at one point or another been told that we just have IBS - which we call I'm Basically Stumped :lol: - don't buy into that diagnosis. You need a reason why your bowel is irritable, not something to try to alleviate the symptoms. The only thing to do that is finding out what it is and fixing it. Actually, I don't know that I have ever actually known someone who has irritable bowel syndrome, but it is a doctor favorite :D

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Your doctor is a moron. There, I said it. It needed to be said. Oh, you only are sort of positive for celiac? Just carry on eating whatever makes you happy and come back in 3 years when you are on the verge of death or have a few new auto-immune diseases or your teeth are rotting out of your mouth because you can't absorb anything. It's cool... I mean it's JUST CELIAC... not a serious disease or anything. <_< Moron.

In the end, if a person feels better not eating gluten, if it alleviates symptoms that bother you, it is a medically necessary diet. No one needs a doctor's note to go grocery shopping or eat.

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You may be grumpy because you're still getting cross contaminated by your kitchen utensils and the glutenoid food as you work through the transition phase. Also, your physician must be thinking "IBS" stands for the "It Boomerangs Situation" where he tells people to keep eating crap that makes them sick, and then it guarantees a return trip in a few years. :angry::ph34r:

If you like (or rather, if you are resigned to :rolleyes: ) microwave cooking, you may want to experiment with "bun-in-a-cup" type recipes for beginning gluten free baking, which are easy, make 1 or 2 servings, and cook up extremely quickly. You can take an egg, add some gluten free flour mix, some vinegar, oil, and baking soda, mix it up, put in in a greased or oiled small ramekin, and have a bun cooked in less than 2 minutes, which can be very gratifying. ( I will test out flour mixtures like this, so I don't blow a fortune on something I don't like or that doesn't work for me). This is simpler than my telling you that you're going to have to replace and segregate a lot of bakeware if it is teflon coated, plus the plastic and rubber bowls, measuring cups, spatulas, wooden spoons, etc, if they have been previously used for gluten. This can be made with existing ceramics and metal spoons. A permanent sharpie type marking pen and a color scheme for the new stuff is a good idea, and paper towels, to lay down on any iffy surfaces, are your friends. A regular drinking glass can replace a wooden rolling pin, if you want to be rolling out pizza dough between waxed paper sheets. (and there are such things as ceramic rolling pins you can get, so they're easy to clean.) A certain amount of functional cookery is usually involved in this gluten fre "lifestyle change" whether or not you ever think of yourself as "liking to cook." ^_^

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And don't forget that lots of things in microwaves splatter. Make sure, since you have a mixed house, that everything you nuke for yourself is covered. Just one of those things that we may not readily think about in the beginning.

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Things will get better. It will not be always easy to deal with this.

I am still in progress of getting my family members and friends in tune with me about gluten free.

I made many errors in my judgements and get defeated by temptations that other people offered or eating in front of me. I just finally learned to stick to my guns and not budge then reward myself with gluten free treat by make it myself later on.

I just have to move on and try again and actually ingore and find my new favorite foods and start carry safe snack with me all the time in the case that my friends decided to drop in bakery or coffeehouse. so i won't tempted easily.

it is all about take the time to get thru this journey in the life.

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Iv been celiac since 2006 and i was in elementary school at that time, i know how you feel, i never wanted to tell any of my class mates or make a big deal. But its gets alot easier. I really could not care less what people eat infront of me anymore. I dont wake up in the morning thinking i have some horrible disease. It really gets better. It all depends on your outlook on your disease and life

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Thanks everyone! I'm starting to feel less crabby about it. I think I was just having a really crabby day for some reason. Per suggestion, I did go out and get all new measuring spoons, cups, mixing bowls, etc. I bought them in bright colors so we can differentiate which ones are "mine" and which ones are for everyone else. Maybe I did get CC'd at home. I didn't feel bad, just irritable. I must be over the hump because I wasn't even annoyed when I saw that my husband was marinating steaks in something I can't have. I guess he's going to have to get used to looking at labels too if he wants to cook for the family. LOL!

On the other hand, today I have felt bad all day. I can't figure out what might have gone wrong. I went out for sushi and specifically asked for gluten-free sushi . I even asked for gluten-free soy sauce and I asked if the wasabi was gluten-free (it wasn't :() so I avoided it. I did go out for a dessert cocktail after dinner, though, and I'm wondering if that was it. It was ice cream and chocolate vodka. Thoughts? Since I'm supposedly not that sensitive I'm surprised to be feeling so bad. It has me second guessing going out again. So frustrating!

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hi,

maybe the dairy in the ice cream or the chocolate (a lot of celiacs seem to have a problem with dairy) or could be the vodka itself -there are different types apparently- made out of different things e.g. potato vodka ( not sure of the exact info) or could just be that your intestines are reacting to alcohol. take your pick lol. :blink:

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Hi!

Perhaps the ill feelings are particially due to withdrawl. Don't listen to them too much. Just do your best every day.

I hope you will feel better soon and get some definative answers.

Diana

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I think it's good you're able to have a pity party! It's okay, really!

I think I didn't whine enough, partly because I was just too stunned and stumped about what was wrong with me to realize what what was happening.

Now I am ready to whine... It's not missing gluten per se but more the whole cross contamination thing. I've loved eating out my whole entire life, and I can't do it anymore. Waaahhhh!

So I hear you...

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