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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.

Just So Tired Of It All
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17 posts in this topic

I have been gluten free for 3 years now. I have been seen at the Celiac Center at University of MD. The doctor put me on a very strict diet of fresh meat, fresh fruit, fresh veggies with as little grains or processed foods as possible. Needless to say, this restrictive diet is very hard to maintain. I often cheat and will eat processed gluten free foods and develop horrible rash. I also at times discover new and unknown sources of gluten. Accidental exposure to gluten means I get horrible GI issues for about a week and horrible rotational vertigo for 1 to 2 days after. (As a side note: rotational vertigo for 2 days makes me basically incapacitated and I have a 2 and 4 year old.)

I am so tired of it all. I am sick of the social isolation. EVERYTHING social involves food. My children are in different preschools and both schools have pizza night and food oriented parties. I am so sick of going to these events because I have to lug food we can eat (my 4 yo has Celiac too). I hate having to explain Celiac and gluten free. If one more person tells me "it's the new FAD diet," I am going to scream. Yes, I love spending $7 on a loaf of bread for the FAD of it. They just don't seem to understand, it is a medical diet.

I loathe my mother-in-law, who is not from the US, who feels Celiac is an imaginary disorder. She constantly tries to feed my son gluten containing items. She also bakes pies and is a cake decorator so her house is TOTALLY cross-contaiminated. After many years of getting ill while visiting, I said no more. She can come visit us. I just cannot travel anymore. The risk of exposure is too great.

Obviously, I am just ranting! I wish I could have a pint of Guinness and a decent pizza.

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I think we all can relate. Sometimes it IS just so frustrating because it seems like life revolves around food!

But you HAVE to change your attitude. And you HAVE to stop cheating!

How can you expect others to take your diet seriously if you don't? If you are cheating, then you are treating it like a "fad" diet. Others see that. And it makes it difficult not only for you, but for the rest of us who have people always tell us, "so and so has celiac but they cheat a little!" And...your 4 yr old is one of us. Would you let her/him eat a "little bit" of rat poison because you do?

So...I empathize with you, we all do. But I am gonna be a little harsh and give you the kick in the tush I think you need....GROW UP!

Yes, celiac is a flaming inconvenience. So what? So is cancer! So is war! So is poverty! So are a million other things that complicate life- and the majority are far worse than having to give up processed food that is garbage anyway!

As long as you continue to cheat, you are never going to reap the benefits of being WELL! Ditch the gluten-free processed foods as well- they are garbage and you don't need them. Start feeding yourself and your family the way we were iintended to eat_ with real food!

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:sigh: I feel you. I really do. I've been having a pity party as I got glutened over four months via lotion, finally started to feel better (again!) and got glutened at a gluten free restaurant. It's been four weeks, and I still have symptoms. So miserable and vitriolic? That would define me some evenings when I get home and have to cook instead of going out and enjoying some relaxing time my S.O.

But

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I have been gluten free for 3 years now. I have been seen at the Celiac Center at University of MD. The doctor put me on a very strict diet of fresh meat, fresh fruit, fresh veggies with as little grains or processed foods as possible. Needless to say, this restrictive diet is very hard to maintain. I often cheat and will eat processed gluten free foods and develop horrible rash. I also at times discover new and unknown sources of gluten. Accidental exposure to gluten means I get horrible GI issues for about a week and horrible rotational vertigo for 1 to 2 days after. (As a side note: rotational vertigo for 2 days makes me basically incapacitated and I have a 2 and 4 year old.)

I am so tired of it all. I am sick of the social isolation. EVERYTHING social involves food. My children are in different preschools and both schools have pizza night and food oriented parties. I am so sick of going to these events because I have to lug food we can eat (my 4 yo has Celiac too). I hate having to explain Celiac and gluten free. If one more person tells me "it's the new FAD diet," I am going to scream. Yes, I love spending $7 on a loaf of bread for the FAD of it. They just don't seem to understand, it is a medical diet.

I loathe my mother-in-law, who is not from the US, who feels Celiac is an imaginary disorder. She constantly tries to feed my son gluten containing items. She also bakes pies and is a cake decorator so her house is TOTALLY cross-contaiminated. After many years of getting ill while visiting, I said no more. She can come visit us. I just cannot travel anymore. The risk of exposure is too great.

Obviously, I am just ranting! I wish I could have a pint of Guinness and a decent pizza.

I feel every bit as miserable, frustrated, tired etc. about all this as you. I won't whine here since I do plenty of that here and there from time to time.

Since going gluten-free 5 yrs ago I have been dx with adult onset type 1 diabetes and 26 food allergies. Yes, I totally get that everything revolves around food! and dishes!

You may not be in the mood at the moment but I'll share some things that have helped me. Do they color my world rosy? No. I still get frustrated etc. plenty often but sometimes they get me from point a to point b, keep me going forward and sometimes help me feel more positive.

Someone on another forum suggested that I reward myself for trying x number of new recipes when I was stuck in a rut and needed more variety for health/allergy reasons. I've done that and my reward was a non-food thing.

I tote my own meals everywhere so I joined an online bento group where you take photos of your meals and post them. I used to be an avide baker and loved to make and share but no longer do so I put that energy into bentos instead. It was a creative outlet that provided me a nice appealing meal. There's a link on my profile to the group I joined. There are others out there too. There are several for gluten-free and allergen-free and even an ugly bento group for those who don't get that artistic with it. I don't post much these days but it kept me going for a while.

Maybe use this as an excuse to invest in some neat, but useful kitchen gadget or gourmet ingredient. I have so much off the menu so I splurged and paid something like $14!for a bottle of lemon olive oil last summer. Yes, it was pricey! but my food is simple and it added a lot of flavor.

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Just want to apologize- I misread your post and thought you were cheating on the gluten-free diet- hence my not so kind tone. Now I see you meant "cheating" by eating some processed foods- but gluten free ones. Which should be fine but still make you sick.

I am so sorry. I have little patience with people who refuse to comply with the diet and whine that it is too hard, and I mistook you for one of them. General whining by those who ARE in compliance and still feel like crap though? THAT I feel for! So please, whine, rant and vent away- then suck it up and remember you aren't alone in this battle. Everyone here would love to just be able to eat without thinking so darn hard about it!

But we can't, and that is our little burden. But it is a little burden compared to many. I hope you keep working at what your dr recommended and get some relief soon. As someone who was miserable their whole life, I am so freaking grateful to finally feel good that I would give up all food to stay that way!

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Edited: I was too harsh (frustration of trying to put a toddler down for a nap... /eye roll)

Improved summary: even after 10 years, sometimes it sucks. Having to deal with the kid aspect makes it even more exhausting. It's nice to whine sometimes, and have someone hear you, but nothing fixes the problem until you figure out your own solution. And so, I hear you and sympathize, and good luck figuring out how to move forward.

At the least, consider being an active agent of change to move the kids events away from food; it'd be healthier for them anyway.

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I am going to give you permission to whine. I have an 11 yr old celiac. I have vented here only to be told that I needed to get into counceling. But I don't. I just need to be heard. It is hard to take a child's food everywhere. It is even harder to deal with the emotions that come with them feeling different. I don't tell my child to grow up or suck it up. I tell her that I wish I had it instead of her but that we have to do this thing. Moses got tired of holding up his arms (as long as he held them the battle was won)so Aaron and Hur held them up for him. Sometimes, we just need an Aaron or Hur to old up our arms so we can keep winning. I'll hold yours up because today I can. Tomorrow you may have to hold mine up.

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Does it absolutely SUCK that you have to take your own food everywhere, and explain why? YES. A thousand times YES. But it is also your choice to restrict your participation, and thereby, your kid's involvement, due to food. My husband was an active alcoholic, and because I was an undiagnosed celiac at the time, the restriction in our social lives was fine by me. He wanted to stay home and drink, and I was too tired to bother. Now? I mourn for the freindships I've lost since then due to that, and try my hardest to maintain the ones that we managed to keep, despite the fact that we weren't there for them. I usually eat before, take my own food, and gladly explain so that I can keep these people close. I pray that the people you explain Celiac to are nice enough to understand, as some of my friends were. Celiac SUCKS when it comes to social stuff. It is totally all about food. But I try to remember that I need to work to develop/maintain these friendships. And way to go! Keeping your child's health in mind is awesome--be your advocate as well as thiers. But yea, this diet can be horrible, at least socially. Just wanted to let you know you're not alone. Probably all of us are with you there.

-Daisy

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I am going to give you permission to whine. I have an 11 yr old celiac. I have vented here only to be told that I needed to get into counceling. But I don't. I just need to be heard. It is hard to take a child's food everywhere. It is even harder to deal with the emotions that come with them feeling different. I don't tell my child to grow up or suck it up. I tell her that I wish I had it instead of her but that we have to do this thing. Moses got tired of holding up his arms (as long as he held them the battle was won)so Aaron and Hur held them up for him. Sometimes, we just need an Aaron or Hur to old up our arms so we can keep winning. I'll hold yours up because today I can. Tomorrow you may have to hold mine up.

What a great analogy! I love that story:)

Reading your post made me cry!:( I'm glad you don't tell your daughter to suck it up. My mom doesn't tell me that either. Sometimes, encouragement doesn't mean you have to pretend everything is ok (when it's not!), but rather it's telling each other that we can get through this, we can help eac other, we can be an Aaron and a Hur. We are a special group of people, with a disease that requires strength and devotion and commitment to your health. We are here for each other...this forum is where we encourage each other. Because despite any differences we may have, one thing brings us all together, Celiac! Hang in there, we are here for you. I understand how difficult it is for you, I know we all do! It's a tough life, not as tough as it could be, but tough nonetheless!

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Have you considered joining a raw food club or meetup? The food is typically grain free, though you will still have to take your chances with food prepared in someone else's kitchen.

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Thank you for the replies. I was in a very bad mood after back-to-back pizza nights for my children's preschools. We ended up not going because I am not buying a pizza we cannot eat and also bringing a gluten free pizza that tastes horrible! If anyone knows of a good gluten-free pizza, let me know. Homemade Pizza Company is good but I get cross contamination.

And to the previous poster, I don't cheat and have gluten. Sorry I didn't make that clearer. I cannot take care of my kids if I have gluten. In fact, I can't even get out of bed unless you count laying on the bathroom floor vomiting and sweating profusely from the rotational vertigo. The Celiac Center at U of MD put me on a very strict diet. I am to avoid even processed gluten free foods and other grains. It just gets old.

I just need to suck it up, I know. It just gets very difficult sometimes.

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Looks like you are feeling better, but I was just going to agree. I am two years in and I try to be really strict with my diet. I also feel best on no processed/rice as only grain diet. And my daughter is on the same diet. I sometimes think I can't spend one more minute in the dang kitchen either making something from scratch or cleaning it...3 times a day at least. Everything else in the house suffers. And I love to cook now too, but this is relentless. And even though most days it's okay and I'm grateful for everything...I too just have days where I think I'm going to lose it.

So...don't feel bad at all for having a little break down. It's a tough deal, especially when you can just NEVER make yourself a stupid sandwich and get on with your day.

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Again, I am sorry for misreading your post and thinking you cheated!

As for gluten-free pizza- I use Gluten Free Pantry french bread/pizza mix. It makes a decent crust and I pile on yummy toppings. It isn't as good as Pizza Hut, but the kids gobble it up and it definitely satisfies the "pizza cravings"!

I am so sorry you are still miserable and hope you get relief soon!

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Thank you for the replies. I was in a very bad mood after back-to-back pizza nights for my children's preschools. We ended up not going because I am not buying a pizza we cannot eat and also bringing a gluten free pizza that tastes horrible! If anyone knows of a good gluten-free pizza, let me know. Homemade Pizza Company is good but I get cross contamination.

And to the previous poster, I don't cheat and have gluten. Sorry I didn't make that clearer. I cannot take care of my kids if I have gluten. In fact, I can't even get out of bed unless you count laying on the bathroom floor vomiting and sweating profusely from the rotational vertigo. The Celiac Center at U of MD put me on a very strict diet. I am to avoid even processed gluten free foods and other grains. It just gets old.

I just need to suck it up, I know. It just gets very difficult sometimes.

Awwr.. why is your pizza sucky-tasting :-( That's no good! There are so many amazing recipes out there. Have you checked around the forum for easy pizza recipes?

Being gluten-free doesn't mean food needs to taste bad. I do understand you suffering for having to be away from even gluten-free processed foods since I'm in the same boat right now, but it does get easier to forget about the stuff in time when you're feeling healthier and happier. Just keep in mind that your body-type just can't handle the processed stuff, which is why you're off it for now.

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Try Against The Grain frozen pizza. The regular is good, but the white pesto pizza is just outstanding. And I'm a wicked food snob! They also sell bare crust, which would be better I think if you wanted traditional pizza.

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Try Against The Grain frozen pizza. The regular is good, but the white pesto pizza is just outstanding. And I'm a wicked food snob! They also sell bare crust, which would be better I think if you wanted traditional pizza.

I was going to post this same suggestion. :) It IS very good (and this is coming from another wicked "foodie" --someone who ONLY liked her own homemade pizza dough-- even BEFORE DX. Damn, that was a GREAT crust :( )

Also, CHEBE mixes are grain free. Try those maybe?

Have a Green's or Bard's and tell yourself it's a Guinness.

As for venting, pouting or whining? hell yes, everyone is allowed.

Knock yourself out!!

Then, it's time to move on, sweetie!!

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I have been gluten free for 3 years now. I have been seen at the Celiac Center at University of MD. The doctor put me on a very strict diet of fresh meat, fresh fruit, fresh veggies with as little grains or processed foods as possible.

I am so tired of it all. I am sick of the social isolation. EVERYTHING social involves food.

I can totally relate. I'm on a very strict diet as well - fresh meat, some veggies, minimal fruit, no processed foods and absolutely no grains. Practically everything social here involves food as well. It's really looked down on to not be able to eat what everyone eats, it's just part of the culture. I never really fit in well to begin with here, so the food restrictions just put in the final nail to completely cut me off. Only thing really keeping me going right now is school and the prospect of moving to the states for grad school.

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