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Niteyx13

"fell Off The Wagon"

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Friday night I came home and I was starving, I was upset, my husband was zoned out on TV, and I had just had it. So...I ate a bowl of Life cereal...the next day I ate whatever I wanted to eat - even went to my favorite Italian restaurant, and I have been eating like that since (eating all my favorite stuff with no abandon). I feel like crud now, of course, and I want to cry because I feel like I am so stuck. I hate this stupid disease. I have a very busy life, so I don't always have time to cook meals. I don't know what to do anymore. I know it is all my fault, but I just feel like I don't have the strength to do this for the rest of my life. How do you all cope with this?

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I don't remember how long you've been gluten-free, but with practice, it doesn't feel like "coping" at all. You get the hang of eating gluten-free just like you would otherwise. Do you find it hard to eliminate millet from your diet? Probably not, but because you don't regularly eat millet. When you're used to not regularly eating wheat, it will be easier.

Some things to plan ahead for include these times - before being gluten-free we kept snack food around, and we should do that now as well. Of course, the easiest things to eat that are naturally gluten-free and don't require cooking are fruits and veggies. (It's even faster to bite into an apple than to pour a bowl of cereal! Grab a safe peanut butter jar and a knife, and you've got some fat and a bit of protein as well.) But you can get gluten-free cereal so you can pour yourself a bowl of safe cereal. You can invent some of your own little quick dishes. (I do tuna tacos - mix a can of tuna with an avocado and fresh salsa, and put in corn tortillas (which you can either heat in the microwave or not) - takes about 5 minutes to put together. Or you can eat it like a dip with tortilla chips.) You can find some new, easy to make, safe snack foods (like Grainaissance's Mochi - takes 15-20 minutes in the oven for me, but is tasty, healthy, and gluten-free(and CF)) to keep around that you might not have tried before. You can get creative for some simple meals (like heating some gluten-free broth, adding some frozen shrimp, and some frozen carrts, to have a healthy soup) that are technically cooked, but trivial. And you can also prepare ahead of time by making larger than normal portions when you do cook and refrigerating or freezing some.

Don't beat yourself up - use this experience to learn where you most need to adapt - it sounds like it's the "five minute cooking" category. It will be ok.

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You do not have to spend a lot of time with preparing food. There are foods that are easy to prepare or grab as you are headed out.

- envirokidz cereal bars

-cybros rice rolls

-foods by george cinnamon muffins with kraft cream cheese

-yoplait yogurt

-rice(fry it and put McCormick seasoning in it for flavor)

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Ya know.....ironically, I asked the same question here about a week ago. I'm still undergoing testing but my daughters are celiac. My incredibly strong willed husband and father in law admitted to me yesterday that if given the need......they would have a nearly impossible time making the adjustment to celiac. So, you are definitely not alone in how you are feeling. When I posted with your same question about coping, those how responded reminded me that celiac is the one autoimmune disease that they have an answer for....unfortunately no cure. My daughters are 4. They are twins with celiac. One of them was so incredibly sick (complete villi destruction), they told us that her chances were extremely high for developing lymphoma within one year unless she followed a gluten-free diet immediately. With that in mind, I've had to carry the responsibility with keeping her and her celiac sister healthy. We are ALWAYS on the go. Hectic, in this house is an understatement. I can completely empathize.

What I've found that helps is preparing meats, meals, etc. and freezing them. It's easier to reheat a serving of chicken stir fry than cooking it from scratch on a day that seems way too long to begin with. I take a few hours (usually 2) on a weekend and cook the entire time. I figure as long as I've got the oven and stove on, I'm going to work my butt off so during the week, I can have a chance to breathe....much like you sound like you'd appreciate. Aunt Candice makes protein bars. The double chocolate ones taste non gluten-free and things like that can be great on the go and can hold you over on your way home, in between meetings, etc. Although gluten-free items are much pricier and many taste very different, there are LOTS of mainstream items that fortunately taste great despite being gluten-free. Kraft, Ben and Jerry's B) etc. It's being able to have those products that helps me deal sometimes. I think that also helps my favorite two little girls realize that eating a tad different isn't that bad. When you feel it IS that bad, perhaps grab something mainstream that is gluten-free and appreciate being able to still have those things. The alternative is so much worse. There are so many people out there with celiacs that were so, SO sick. Many have gotten their lives back after making the gluten-free adjustment and becoming healthy again. You CAN do this! It's alright to cry and get discouraged. Although it might not feel like it now, you're gaining strength and knowledge everyday and this board can help you through the days when you forget that.

Now go grab something good to eat!

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Cybros has rice rolls and they are sweetened a bit with honey. They are the one of the best I have tasted...

we make bagel bites with them by cutting them in half and then we broil them..

I also eat them on the mornings and put cream cheese or make a cheese sandwich out of them....they are definitely worth trying.

We get them at a place called common market up here. I haven't found it at whole foods or anywhere like that but I'm sure if you asked they would get them. Check out their website and you can find out more about their gluten free products.

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"It's alright to cry and get discouraged. Although it might not feel like it now, you're gaining strength and knowledge everyday and this board can help you through the days when you forget that."

This is one of the best quotes I have read on this forum. It sums-up pretty much how all of us feel at times. We all get frustrated and tired and wish for the old days when we could grab whatever to eat and not think twice about it. But unfortunately we can't live like that anymore.

Living gluten-free is like running in a marathon race. You must keep your eyes focus on the finish line which is a long ways off. The short term (mile-after-mile) daily life is difficult but once your intestine heals and you are feeling better you won't think so much about the sacrifices anymore. Besides, the alternative to being gluten-free is so scary that it's not worth living that life anymore.

Keep your chin-up and hang in there!

Cleveland Bob B)

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Thank you all for the encouragment. I am back to gluten-free starting today. My Mother just told me she ordered a bunch of stuff online for me yesterday to try. She is so cool. I have only had the blood test, and not the endoscope, so sometimes I go into denial and talk myself into eating gluten. For some reason I seem to think it will be "different this time". I know I feel better gluten-free, although, not 100%. I cheated at Christmas too, so maybe I am not allowing myself time to get well. You all have given me a lot of great ideas. Thanks! :)

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I just need to express regret somewhere!

I have been gluten-free for 2 1/2 years, and I just started a new job as a school cafeteria manager. Those homeade desserts and breads got the best of me. I have been eating a roll a day, except yesterday, when I ate 2 whole wheat honey buns!!!!!! RIGHT AWAY, I had a miserable headache that would not go away. As the day went on, instead of getting better I got worse! During the night, I woke up with my insides shaking. Its so difficult to describe the feeling. Like a trembling, fearful uneasiness. I felt like it was hard to breathe, but it wasn't. It was kind of like a panic attack, the shakiness was like an extremely hungover feeling, all my nerves vibrating. Its still like that today. I hardly slept at all, and am so scared. Anyone ever had that? How could I have been so FOOLISH!!! How long will this last?

I did have a little diarreah this morning and felt better after, but the shakiness has returned.

I haven't been posting too often lately, but think of all of you often!

Thanks for listening and just being there for support.

Miki, New Orleans

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Gee! I posted yesterday because I was frustrated. I was trying so hard to be gluten-free, and still ate something that made me sick. I haven't even considered going off the wagon on purpose yet, because I can't seem to figure out how to stay on the darned thing.

However, my biggest adjustment has also been time. I am single with lots of commitments. I have no good reason to stay home, so I am used to popping frozen entrees in the microwave at lunch, and maybe at dinner, or grabbing something fast on my way between stops. Now I have to shop in like 6 different places, and I spend so much time comparing lists with labels, and reading small print, then I have to cook, and that makes a huge mess in the kitchen and dirties all the pots and pans increasing cleanup time. Like you, I don't have the time.

Some things that are helping me: Bread machine with a good basic bread recipe. When I have to make a mess to make a loaf, I mix the dry ingredients for 3 loaves, bag 2 and put them in the fridge. Then I just have to add the wet ingredients and put it in the bread machine, which does the rest of the work. Cuts down on preparation and cleanup.

Someone else suggested making big batches and freezing, which I thought was a great idea at first, but then I made a couple of batches that happened to have something bad in them, and I ended up flushing. But, it worked with some things, and that helped. I also love soup, and Wolfgang Puck makes the best soups, 3 or 4 of which are gluten-free. I can open a can and microwave it in 5 mins.

Also, when I'm in a rush, I eat wierd stuff. A friend found Old Wisconsin Turkey Sticks for me. It's a spicy sausage stick you can take with you (good for travelling). Grab a couple and a baggie full of fresh veggies, and eat it on the way. Canned salmon (full of calcium and Omega-3) dumped on a veggie salad with some ranch dressing. I don't know if you have Lou Malnati's pizza in your area, but they make a crustless pizza just for us, and they'll freeze them for you. Put it on a gluten-free pizza crust (which I personally find unpalatable) or a corn tortilla (much better), and bake.

I am looking for more time-saving tips myself, but I thought I'd share a few things that have helped me keep my sanity.

Wendy

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Personally, I'm a little confused. For those who say it's hard to stay gluten-free because of their schedules, that BEGS the question: how do you handle your schedule when you're miserably sick, then??? I don't get it.

When I eat wheat I feel like dirt, so I don't eat it anymore. I have a busy schedule; I usually leave home at 5:45 or 6am and get home around 6pm. I have to eat dinner and lunch out. What to do? I cannot afford to be sick at work; I am on my feet presenting material all day.

Cook food on Sunday and bring a little cooler with you. It's not that hard. Have dinner waiting at home to heat up in the microwave; a baked potato takes 5 minutes! Buy snack food like gluten-free chips and salsa, gluten-free cookies, comfort foods, that taste GREAT and eat those when you're stressed. Or, say screw it, go out and get some fries from McDonald's or a shake or something. I eat plently of snack food; it's readily available.

Each week on Saturday I drive to Whole Foods and buy food for the week. Or you can buy a bunch of stuff on the net if it's too far for you.

I get intensely stressed sometimes but I still manage to stay gluten-free because I plan ahead. It sounds funny but you actually have to plan your stress ahead!

I say to myself, tomorrow is a busy, long day that will be emotionally draining. I'd better have my food taken care of beforehand.

There are so many suggestions people can make, but like leading a horse to water, you can't make it drink. The committment to stay gluten-free has to come from you. I'm not saying you should feel terrible about cheating, after all, it's YOUR body and you are entitled to do what you wish with it. And it's also you that has to deal with not feeling well, which is never fun.

But don't blame the slip ups on stress or a fight with someone, etc. When you take responsibility for it that is the first constructive step in fixing the problem.

In any case, we are here to listen.

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Perhaps jknnej has hit on something that might be helpful -- next time you start thinking you're too busy to eat gluten-free, remember that it takes a heck of a lot more time to be sick from eating gluten.

richard

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Ok, here are my thoughts and I hope I don't sound like a *****. We can eat gluten, we can get sick. The problem is that if we continue we know it can lead to cancer and many other problems. We also know we are open to other immune disorders. We can sit around and say woo is me or we can get up and fight for our lives. I do cry, I do get frustrated, I do miss the good food, but will I chance the ill effects of eating gluten, not intentionally. I don't want to be sick, I don't want cancer. Not for something I know I can prevent. Plus, there is always the cross contamination, which we all experience and don't have a lot of control over, and the goof ups of not knowing an ingredent is gluten. I don't miss the pain, the running to the bathroom, I don't miss that at all. It may sound harsh but that is the reality we face every day.

Be good to yourselves. Take care of yourselves. We have this one chance to go around ( if we believe in more than one life, this is the only one most of us remember)

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I think everyone struggles with this in their own way, given different environments, support, resources, and symptoms. Therefore I think it is pretty hard to judge someone else and their frustrations (and failures) without having literally walked in their shoes.

That said, I have a few positive suggestions...

try being really really good on your diet for a while, for me, it really cuts down on any "cravings" for non-gluten-free food if I haven't had anything even remotely cross contaminated for about a week. (just got back from vacation, where, despite my best efforts, I got glutened at least twice while eating out and a few days later almost ripped a piece of pizza out of my husband's hand over it... something that while on my diet, I would never even consider.)

spend some quality time online looking for online retailers that sell ready to eat gluten-free foods or mixes... but dont get discouraged if you dont like the first few ones you get. everyones tastes are different and it takes a while to figure out what you'll like and wont like. and/or find a whole foods or other nearby gluten-free friendly store... some stock some really good ready made gluten-free baked goods and the like. also look for gluten-free cookbooks at a whole foods or a book store, the recipes will give you some great ideas for when you have time

stock up on lara bars, enjoy life bars, and godvind bars (and even maybe a few boxes of pamelas gluten-free cookies) to keep within reach for when you're hungry. the trukey sticks are really good, and sometimes at whole foods thay have some precooked pork chops that are pretty tasty, too. you'll figure it out, it just takes time (and a lot of nights having rice pasta or scrambled eggs for dinner :) ). also, it might help to keep your husbands food out of easy reach for you if you need a little extra push... if you keep your cereal in front of his so yours is the first thing you grab, it might help that little bit.

best wishes, h

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That line about being a cafeteria manager got to me. One of my jobs is clerking at a Subway, with all that good food and all that bread that I bake but can't eat. :huh: Fortunately I do at times remember to bring some of my own bread with me so I can eat a sandwich.

Staying gluten-free isn't easy, especially with a wife who insists on keeping the larder stocked with food I usually can't eat. And I'm never completely sure that I'll have an accidental ingestion of gluten. She doesn't necessarily sympathize to my dietary needs.

Ed

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Guest gfinnebraska

That's right lovegrov and jknnej. It is SO easy to say "I am too busy to be gluten-free" ~ who isn't too busy??? EVERYONE on here has one reason or another they could use to eat gluten. I would LOVE to dive head first into a pile of apple fritters and eat my way back out!!! :D I don't. Won't. Can't. MY life is worth more than an apple fritter. My health and family are worth more than any gluten item. That is the bottom line. For your own sake ~ get organized and live health. :D

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I also agree with you guys about that. I don't quite get it either...life is always busy and hectic but wouldn't you rather be busy feeling good instead of miserable? You will keep having accidents and feeling bad if you are not dedicated to the diet.

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It's interesting that so many people say things like "I don't have time to cook", "I don't care about cooking", "I don't have time to eat healthy", because it's essentially the same as saying "I don't have time to take care of myself." Eating is what keeps us alive, and proper nutrition (regardless of our unique needs) is vital for our lives. When we say we're too busy to eat right, we're saying we're too busy to take care of ourselves, but that's the first thing we need to take care of!

I know it can be hard to make the time, I struggle with it sometimes, particularly when I'm not feeling well, but that doesn't let me off the hook for taking care of myself! :-)

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I think that it is interesting to consider, whether we agree with it or not, that there are LOTS of people out there everyday, gluten-free or not, who actively decide "I dont have time to take care of myself" how else can you explain the sheer number of people with type II diabetes and lung cancer and heart disease and all those other conditions that (in many cases) people can choose to do something about. I just think that we forget that the time and energy that many of the celiacs on here choose to put into taking care of themselves is not generally representative of that expended by the general population (many of whom could make moinor changes and feel a whole lot better)... and is therefore often not understood / supported / respected by many people around us.

not trying to start an argument, its just that after a year of clinical work in medical school many of my friends and I were surprised and saddened by how little many people are willing to do to change in order to feel better, and I think sometimes in this community it is easy to forget how hard it is at first and how little support some people have... and how really people do have the right to continue to be sick if they so choose (and to own up to and deal with the consequences accordingly, which is the tough part).

ok, really I'm just thinking out loud, but thanks for listenin'

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Ed:

I have a question for you. I went to Subway and asked if I could just buy their meat so I could have a sandwich and they wouldn't do it. Is that the policy or is it just the Subway in my town?

Thanks

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It probably depends on the Subway you go to...I personally would not get anything from Subway they deal with bread...they touch bread then touch meat or cheese or whatever with their gloves. I used to work at one and that is an easy way to get contaminated.

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I guess this is one of those topics that some Celiacs are defensive about. Some people think we look down on them for telling them how to live and diet right.

I have never understood this argument.

I look at food and salivate over "pizza and bread", but there is NO WAY I would ever eat that stuff again. The pleasure from 30 seconds of chewing a piece of pizza does not equal the pain, gas and discomfort from it coming out the other end.

I am not trying to judge anybody or look down on anyone.........but, I do not get it. Why eat something that makes you feel so bad.

Some advice to avoid the same scenario again

1. Stock up the fridge and cabinets with gluten-free food. Don't just buy for a week, buy a ton of stuff -- just like you used to before you got diagnosed with celiac disease.

2. Prepare food on Sunday that will last you the week (lunches) Evewry Sunday I bake chicken breasts in a baking pan/dish with celery, carrots, garlic and salt and pepper. I take one with some veggies into the office with white rice. Voila, lunch every day.

3. TRY NEW THINGS -- If it says gluten free on it, give it a whirl! Who knows, you might like it.

4. Re-discover apples, oranges, bananas, etc -- perfect snack.

5. Load up on Amy's gluten-free Mac N Cheese -- perfect size dinner or late night munchie fix.

6. Drink lots of water - 50 oz a day! -- It filters out the toxins and you don't get tired (90% of sluggishness in people is due to lack of water)

7. BE A STRONG PERSON - its the only way to live life gluten-free!

8. Jello Pudding!

9. Carl Buddig Deli Meats and Kinikinnick Bread!

10. Smile! It could be worse!

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Guest gfinnebraska

That's right broncobux!!! Life could be SO much worse... A celiac disease person could have fresh fruit and gluten-free muffin for breakfast, taco salad with sour cream for lunch, a WIDE assortment of candy bars (3 Musketeers is my favorite!) for a snack, and steak, mashed potatoes, veggies and ice cream for dinner! What is suffering in that??!!?? And if you can't have dairy... there is wonderful chocolate Silk soy milk too!! Life is full of wonderful gluten-free foods. Too many for most of our waist lines!! :rolleyes:

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Thank you all for your input. Please keep in mind that everyone is different, and not all of us may have the same will power and strength. I have never felt as well as I think I should gluten-free. When I am eating gluten I feel about 80 (at least what I imagine 80 feels like), gluten-free maybe I take off 20 years, but I never feel like I am 28. I would love to be able to stock up on gluten-free food; however, our family does have a small grocery budget. My husband and I are working on ways to improve that. I do walk almost daily, and if I had the energy I would probably go back to cardio kick boxing. I drink tons of water. I am trying to make this work out, but maybe it will take me longer than some of you.

I was at a baseball post season party for my daughter last night at Peter Piper Pizza. I made some stir fry for myself before going, so that I knew there would be no temptations. As soon as we got there another parent was offering left over pizza. I declined and my daughter took some of it. The lady kept asking me to have some, and my daughter finally says "oh, she can't eat that". The lady asked why, and I told her I was gluten intolerant (people understand that so much better than "I have celiac disease"). She then says "oh, that's why you are so skinny" she pauses and then adds "you are so blessed". What the heck does that mean? I don't feel blessed with this disease. I am in so many other ways, but not with celiac. I know there are other people out there that are worse off than me, and I know that there are people worse off than those people, and there is always someone that has it worse. I am just trying to cope with what I have, and it is taking some time. I have my positive days, and I have my negative days, and I thank those of you who gave tips, and helped to encourage me. Encouragment was what I needed.

Sorry for the tangent; I am not even sure what the point was now. :blink:

Deanna

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Deanna:

I think we have all been where you are now. It is a very difficult disease to deal with. I don't think there are any easy answers. Like I have said so much of our communication is around meals. I think we just do the best we can. I think that some days are more difficult than others. There are times when I tell myself to suck it up that things could be worse. There are days when I want to cry because I want the old food. I went to lunch today with some people who asked why when I was so thin was I having a hamburger without a bun? I explained and one woman said several times, oh, your allergic to wheat. It's so much more than that but I get tired of explaining it. The only thing I do know is that it's not worth getting sick by eating foods that contain gluten. there are times when we ingest it without knowing, it is very difficult.

You will get through it, do the best you can. Sometimes just give yourself a kick in the rear, other times cry, eventually I think acceptance will come. :D

PS I thought that 3 musketeers contained gluten? Let me know I haven't had one for a long time!

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