I Can't Do It!

[MallysMama]

I just can't do it! I've been trying to be better and not cheat - and it's almost impossible!!!! I'm so addicted to "easy" foods - like cereal - and I just can't go 100% gluten free! I went grocery shopping today and vowed to look closer at the things I normally eat to make sure I get rid of the stuff that's still hurting me. I'll mention this a million times, I'm sure, but I LOVE cereal! I eat cereal every day! That is one product that I haven't been 100% with for a Long time (even my mom would start buying cereals with malt in them... since it's so hard to find them without). Well, I decided I'd try today to find some that I could eat without feeling guilty. I went straight to the Kellogs Corn Pops. I've eaten them my whole life! For some reason I decided to check the ingredients even though I knew I could For Sure eat them. Guess what I read? Wheat Starch!! They added WHEAT starch to CORN pops!!!!! It was all I could do to keep calm in the grocery store (I completely lost it when I got to my car). Who knows how long it's been that way - since that's one cereal I don't check the ingredients on. I remember when Campbells Soup added wheat to all of their cream soups. That was a big deal - but not nearly as devestating as this! I looked up and down the aisle and the only cereal I found that I could still eat was Cocoa Pebbles. It's not fair!! I can't do this! I live on cereal - but I can't just eat ONE kind (the most sugary, non-filling one at that). I can't do it, I can't do it, I can't do it!!!

You'd think I'd just barely been diagnosed with how I'm reacting to all of this. Why did I ever look up this website in the first place?! I was just asking for trouble! I'd take a half an hour in the bathroom and a few stomach pains over this stress any day! I've decided that I'm going to get a biopsy done to see what kind of damage I've done to my intestines. If it's not too serious - I'm not going to worry about being 100% gluten free (Maybe I'll try for 95%). I wish I really enjoyed cooking/baking - it'd make it more simple. I spend so much time worrying about getting my picky toddler to eat that I don't feel like spending all the necessary time figuring out what I'm gonna eat. And it's not worth spending so much time in the kitchen while my daughter cries and cries for me to play with her (I don't let her in the kitchen cause she gets into too much trouble lately...thank goodness for safety gates!)

I'd love to hear some similiar stories about the struggles you've all had. I don't really care to hear that I just need to try harder and it gets easier (I've been doing it my whole life...) But I'd love to hear some empathetic stories. Please share.

[Ursa Major]

I've been having a hard time lately, too. I found out I have Celiac disease at the age of 52. I LOVE rye bread! I'd eat it several times a day, with butter and cheese. I loved waffles with yogourt, too. I never liked cereal, though, good thing. And I always thought my chocolate chip cake was to die for (right, literally, I guess). My other favourite food was potatoes.

Now I know I am severely intolerant to all foods containing lectins, which includes ALL grains, including rice and corn, all dairy, eggs (I loved soft boiled eggs with rye bread), legumes (including soy and peanuts), all nightshades (potatoes, tomatoes, peppers, eggplant). And foods high in salicylates, which includes all fruit except peeled pears and the juice of half a lime a day, all herbs and spices (all I can use now is sea salt, and once in a while a little parsley), most vegetables, all oils except cold pressed sunflower oil, all juices, all teas except chamomile tea, all vinegars, the only sweetener I have left is maple syrup (honey is very bad). The list is longer than that, but I don't even want to think about it.

Sometimes I get sooooooooooooo discouraged I want to cry. Some days I feel so down that I don't cook and not eat anything at all (other than dark chocolate, which gives me a stomach ache, but I just can't give it up, I have nothing else left!). But cheating is not an option, either, because I'll end up aching so badly all over, with brain fog and crying spells for days, plus, of course, diarrhea and stomach aches and bowel cramps. Sometimes I get so incredibly tempted, especially because I get no support from my family at all. They think it is easy to live like this! They haven't got the foggiest idea what it's like. They cover everything, including my keyboard at the computer with crumbs and fingerprints from eating bread at the computer. I am sure I get glutened all the time because of them. In order to be safe I'd have to turn into this incredibly paranoid person, who washes her hands every few minutes, and cleans continuously (or I should start wearing rubber gloves around the house, which I'd change frequently). In order to know I am safe I'd have to move out, which of course isn't possible.

I often feel like I can't do this any longer. But I have no choice, I can't go back to being so sick again, plus gain all the weight back that I have lost since I went on this crazy diet! Today I am wearing my favourite jeans again, which I haven't been able to wear for about three years, because they got way too tight.

Besides, if I don't stay on the diet I'll end up like my mother, who died of liver cancer at the age of 66. If I follow in her footsteps I'll be dead in 13 years, she had all the same symptoms I had until last year. I just hope I caught it in time, and that I'm not going to end up with cancer, too (her mother died of stomach cancer, probably another person with celiac disease).

MallysMama, I understand how terribly frustrating this must be for you, I get so frustrated and upset, too. But you need to hang in there and take care of yourself, for your little girl's sake, she needs you to be healthy! You sound like you're going through withdrawal symptoms right now (gluten and sugar will do that to you). Buy yourself some nice treats (gluten free of course) that you can indulge in, it will help. Reward yourself with something nice every day you make it without gluten (like flowers, chocolate, expensive out-of-season fruit), whatever it is that you might like.

The only way I make it through each week right now is, to see a counselor once a week. Without him I simply wouldn't make it, counseling is literally a life saver for me. Maybe that would be an option for you, too.

[IronedOut]

I'd love to hear some similiar stories about the struggles you've all had. I don't really care to hear that I just need to try harder and it gets easier (I've been doing it my whole life...) But I'd love to hear some empathetic stories. Please share.

We went to NY over the weekend and picked up fresh bagels for my sister. The car smelled soooooooo good that I cried the whole way home.

[pixiegirl]

Well it is difficult to change life long eating habits, without a doubt. And quite honestly I don't know what will make it happen for you or easier. Everyone has their own levels of "addiction" I guess. I have 2 friends that still smake (well 1 now) and they have both smoked for over 20 years and using the same program 1 quit the very first try and the other just can't, she has tried everything. She doesn't have in herself the resolve. She has 2 beautiful young children to live for and just can't do it.

I personally lived with the runs and feeling terrible for such a long time that once I found out what was wrong with me, I changed how I eat overnight. And in a year and 7 months there has been no cheating. I just never want to feel so awful again.

I lived on sourdough and rye bread and pasta, the change was huge for me. However now I'm in Ursula's boat, I'm allergic to so many foods now and I have so many intollerences to various foods that there isn't a lot I can eat. And its made plain old Celiac look so easy!

I'm not knocking any of you that won't follow the diet... however its my understanding that following it 95% isn't going to help you, you will still have damaged intestines... its 100% or nothing. I wish I could send you a dose of my will power but all my willpower came from feeling normal again (believe me if I had willpower I would have this 10 lbs to lose, the same 10 lbs I've lost a bazillion times before)

Susan

[Guest nini]

They only added wheat to the Corn Pops within the past year... I agree it's incredibly frustrating. Corn Pops was my daughter's fave. cereal and I just cried and cried at the thought of having to tell her that yet another fave. product of hers had just added the dreaded gluten.

You can do this. Yes you've developed some really bad habits over the years because you didn't know the extent of the risk you were taking. But now you know. Gluten is poison. By telling yourself if you get the biopsy and there is just minimal damage, that it is ok to cheat you are sending a terrible message to your daughter.

I'm not trying to be mean or hard on you, believe me I understand. My fave. was Krispy Kreme donuts and I will NEVER be able to have them again. At least once a week my boss brings Krispy Kreme's into the office and I have to look at them and smell them... and I go into the bathroom and cry.

There are plenty of cereals that you can have, they are just not in your normal cereal aisle of the grocery store. Most grocery stores are starting to carry Envirokids cereals in their health food sections, and many of the flavors are labeled gluten-free... also Nature's Path makes several gluten-free cereals, Erewhon makes a gluten-free rice krispy, and there's even a company that makes a version of Rice Chex and Corn Chex called Crunch Em's.

gluten lite is still gluten no matter how you cut it, and my dear, it only takes A MOLECULE OF GLUTEN to do damage.

[darlindeb25]

So true Susan--95% keeps a celiac from healing. This is from Dr. Green's new book---I can't find where I read it, but here goes! He says, it's like falling and scraping your knee--as long as you don't fall again the knee will heal, but if you fall on it day after day, then it will never heal. Celiacs is the same. If you go gluten-free then you heal, but if you feed it a little gluten each day, it can't heal.

Mallysmom--there are gluten-free cereals out there and they taste fine. The last time I checked they were still saying Fruity Pebbles is gluten-free. There are corn flakes that are gluten-free and taste the same as regular Corn Flakes. Corn Puffs have not been gluten-free now for well over 1 year.

My sweetheart has always said to me, "No one ever promised you it would be easy!" He's right, it's not easy. It doesn't matter how many people tell you it is, that doesn't mean it is easy for you. When I am looking for a certain item and checking the ingreds, if the list of ingreds is too long, then I put it back. When you are ready, you will realize that you have to be completely gluten-free. Be strong, think of your health, think of your family and do this.

If you need someone to talk to, feel free to email me--just put "celiac forum" in the subject line the first time so I know it isnt spam. I have been gluten-free for 5 yrs in July, my sister 5 yrs this month and she is a dietician--we can help. Deb darlindeb25@aol.com

[jenvan]

I also agree on the 95% not cutting it--your risks of cancer, premature death etc will not return to normal, and neither will your body. A huge help for me is finding good gluten-free products I really like. Have you found any? There are some great gluten-free cereals out there. I love love my Perky's Nutty Rice I can give you some of the cereal posts that list favorite gluten-free cereals if you're interested. Also, good cookies and premade gluten-free baked goods can act as replacements and help some folks be tempted to cheat less. Why not trying to get some quick dinners to give yourself a break--ever try the Gluten Free Pantry's skillet meals? They are like hamburger helper type meals--really quick. I do like to cook but a big time saver for me is cooking large quantities at once and then freezing good amounts to reheat for dinner later. I tend to be a practical person...so maybe a tip here will help give you a new idea... My struggle is more with my everyday fibromyalgia pain and fatigue and less with the diet. For me dairy has been harder than gluten. What do you think is actually the source of your stress right now? Time, cooking, temptation ?

[StrongerToday]

I agree it is very tough. I lived on pasta, pizza, sandwiches, bagels... might have something to do with the fact that I topped the scales at over 200 lbs when I was diagnosed. I also felt like crap, I had D every day, no energy, brain fog...

The thing that helps me most is planning. Researching what cereals I can have, getting recommendations from this group on products, knowing ahead of time what I'm cooking and eating for the next few days and having some emergency things on hand (Progresso Chicken Wild Rice soup, frozen ham steaks, etc.). Cookbooks are good to read too.

Urusula has had some huge obsticles to overcome and I would agree that therapy has been very helpful for me too. You can do it. To quote from another group - "one day at a time" ... it's a lot easier for me to focus on today and maybe tomorrow then the next 40 years!

When I look back at this time last year I remember how awful I felt, how bad I looked. I've now lost 50 pounds (and that's without dieting, just eating better foods) and am constantly getting compliments on how I'm "glowing". When I tell people what I'm doing they say "oh, I'd DIE without dairy". I said that my first few days - but in fact I'm feeling better then ever!!

It is tough; but it could be a lot worse. You CAN do this and you are worth it!!

[bluejeangirl]

Mally's Ma,

We just got a puppy, alittle long-haired miniture dachshound that oh so cute but a little devil most of the time. It reminded me of the time when my boys were babies and they needed all my attention all of the time. I never thought I'd get through those times it was very very hard. But you do and it does get easier. My boys are 21 and 23 now, where did the time go. I would put locks on all of the bottom cabinets and let them play with the pot and pans cabinet and tupperware. They loved making towers and beating the pans like drums, you might have to put ear plugs in. I would have the time to make dinner though and that was all I wanted. The cereals I like are Barbara's corn flakes and Natures Path Mesa Sunrise flakes made with Flax, Corn and Amaranth. They are a quick fix. And sometimes you just want to crunch on something.

[Susan123]

Is Progresso's Chicken Wild Rice gluten-free? I just saw it today for the first time saying "New!"

[StrongerToday]

Is Progresso's Chicken Wild Rice gluten-free? I just saw it today for the first time saying "New!"

Yes, it is and yummy! I like that it's in the microwave cup, I have it at work a lot. I beleive Progresso has other gluten-free soups and they are very good about labeling.

[skoki-mom]

I hate my diet. But, I follow it. I hate it when there is a box of Tim's donuts on the coffee table in the staff room (the dr's bring them in for us on weekends). I hate it when I go to my mother's house and the house is full of the smell of home made bread. I hate it when I sit down in a restaraunt and the whole menu looks fabulous and if I'm lucky, I might be able to find a salad I can eat. I hate it when I take my kids to the zoo and I can't eat the fries, because even though the fries are gluten-free, and cooked in thier own vat, they toss them in with the chicken fingers to serve them up. I hate hauling a brown bag lunch around the park with me all day, too, so I pretty much go without all day except for plain popcorn or sometimes I'm a rebel and order soft ice cream in a cup. I hate that there is no spontaeity in my life anymore, or so it seems. And I really hate going on a trip and being stuck eating in the same places I can eat at here. Part of the fun of going somewhere new is (used to be) trying new places to eat. My friends go out for lunch and stuff all the time and never invite me, and I can't say I blame them. I wouldn't invite me either. They are probably as sick of eating at the same places as I am. I have become a total bore.

Anyhow, you are not the only one who finds it hard. Lots of people here really love this diet, but I am not one them.

[key]

Environkids makes a cereal called "Peanut Butter Panda Puffs" and "GOrilla MUnch". My kids that can eat gluten love these two cereals. They can be found at health food stores and even our Super Target has I think one of them. Also Nature's Path makes a great Cornflake that tastes really good. I know these probably aren't your favorite cereals and I really miss my Raisin Bran and Cheerios.

This diet has been in my life for almost a year and it has been very hard for me. IN the beginning it was great because I felt SO much better for like four months. I think what keeps alot of people going is the fact that they felt SO cruddy before and what gluten does to them. THe fear of being sick from gluten makes people stay on the diet. For those that don't react as badly, I think it is very hard. I think if you really read the statistics and what you are doing to your body, it may make a difference. I feel for you though and I have three little kids and having to cook for them and my other celiac son and I, well it can be very hard. My other friends don't have to do this, but I can't look at it like that. For me it is a matter of necessity. If I eat wheat, I feel aweful and can't be a good mom to my children! I want to be around for them and be able to get out of bed! If it was all about sole willpower and me being strong on a diet, then I might fail at that miserably. I see the consequences though.

I hate to say though, that like someone said on here. If you are only 95% gluten free then you aren't helping your body at all. It is all or nothing or you really won't see the point in staying on the diet if you don't ever feel healthy. Feeling great once you are 100% gluten free will be the motivation you need to stay gluten free!

I think a good motto is that you "Eat to live, not live to eat"! This is for all of us. I have to remind myself that in other countries people are starving and that I actually have more variety then alot of these people that eat mainly rice or whatever their area produces.

I was thinking lastnight that if I gave up dairy too, that I would still have a ton of stuff to eat, even though I don't eat meat either or gluten.

It would be good for you to make a list of the great things you can still eat.

I hope you figure things out. Sorry you are so down about it all.

SOrry this got SO long!

Monica

[zip2play]

They only added wheat to the Corn Pops within the past year... I agree it's incredibly frustrating. Corn Pops was my daughter's fave. cereal and I just cried and cried at the thought of having to tell her that yet another fave. product of hers had just added the dreaded gluten.

Have you guys considered writing the company and complaining. I would bet a LARGE SUM OF MONEY they added the damn Wheat so they could SLAP the Whole Grains label on it. That is the NEW RAGE! Bunch of BS if you ask me!

I haven't lost a dang pound on this. I have actually gone up. If I feel sorry for myself, I eat some chocolate or candy! I eat Fritos like there is NO TOMORROW. When I head to our neighborhood gatherings I always bring corn chips and some sort of dip. I just eat what I bring. But such is life.

Monica, I agree with the motto Eating to live not Living to eat. I just don't know how possible that is here in the USA. Everything is centered around food. Work, gatherings, family functions, heck even going to the movies is all about food.

I understand your pain. I am one of those that can tolerate a bit and not get too sick. That makes it even more tempting. In the 2 1/2 months I have been on this, I have only cheated (to my knowledge) once!

I gave up sugar for lent! I can do it for GOD but not myself. THAT makes no sense! Dork aren't I!?

LOL Ok, I have had my vent for the week!

I do feel for ya girl! Please know you are not alone!

Small victories is what I focus on. Last week I made gluten free pancakes that were really good. My kids lapped them up like there was no tomorrow. I am the only gluten-free person at my house. So that was HUGE!

Monica

[key]

Monica and Lori,

I wrote the motto, but I can't say I always agree with it. I feel alot like LORI at times!!! Glad to know I am not the only one that feels sorry for myself at times. The worst is when you try so hard to feel better and fail so miserably! I told my husband yesterday that I am SO sick of having to call every company to find out if something has wheat in it. He agreed that he hates making phone calls to people too.

I still haven't found the Delphi forums list of gluten-free products. I think this would make my life easier.

Ok, back to the topic!

Monica

[StrongerToday]

I love the motto and I think it's very appropriate for a lot of people - not just those of us that are food challenged.

Is this diet a giant P.I.T.A. (and I don't mean the bread) for me? ABSOLUTELY! But when I realize how good I feel, when I realize other people notice that I'm feeling so much better, and when I look into my daughter's eyes and know that she's my real motiviation.... sniff sniff....

There are challenges, you will find ways to handle them. Let your daughter play with the bowls or "wash" dishes in soapy water while you cook. I used to fill a baking sheet with shaving cream (unless she'd eat it!), or put cereal on her high chair tray. Cook a giant dinner one day and keep eating it all week. Toddler's are picky, my 8 year old is still picky but she now loves green beans and peas - I just kept serving them, finally she figured out she should eat them! I found a lot of gluten-free food that we both can eat (she's not on a wheat free diet.... although times I worry about that) but just having gluten-free snacks in the house makes me feel better that I can have them and she can have them and I'm not so worried about crumbs.

[loraleena]

Have I got the cereal for you. It is called Envirokidz Gorilla Munch and they are healthy corn pops. But, the don't taste healthy. They are awesome. You can get them at Whole Foods or other natural food stores. They also make a cocoa crispies too. They are gluten free.

Also I am very concerned for you that you are not taking this seriously. 95% is not good enough. You are slowly destroying your body and you will pay for it with more serious complications later. There are lots of yummy quick foods out there. Try Amy's meals. Do some research and find out about all the yummy items. Also all that processed food is not good for you. Good luck and enjoy the cereal.

[CMCM]

This is the really insidious nature of celiac....while some people feel terrible if they eat gluten, others only feel marginally bad so it's all too easy to dismiss the danger of continuing to eat gluten after this diagnosis. And further....it's so difficult to get a solid, 100% diagnosis that yes, you do definitely have celiac disease. So it's easy to psych yourself into believing that maybe 95% will cut it.

I didn't figure this out until 2 months ago, at 56. But while I've had what I always thought was a "sensitive" digestive system all my life, things only accelerated the last year or two, culminating in a frightening reaction last November....that one really got my attention and forced me to research this. And now I've been trying to be gluten free for several months, and very strictly so the last month, and what I'm finding now is that having avoided gluten, if I DO get some the reaction is now greater. I'm positive for casein sensitivity, so this is a real double whammy for me with the food elimination. I was really depressed about it for awhile, I went thru a period of denial and thinking I could eat "just a little" gluten or dairy, but I quickly found my reactions are now greater, and I guess there is some kind of negative association operating now where I associate these foods with feeling bad for days, and the food loses its appeal. For example, last night I saw a pizza ad....I LOVED pizza, but this ad, which first looked yummy, soon gave me a feeling of how yucky it would make me feel....for days and days sometimes.

There's an exercise program called "Body For Life", and in this book it talks about transforming your thought processes about things (in this case, losing weight and getting fit). The author Bill Phillips talks about "Crossing the abyss", which is really just about reaching a state of realization where you cross over the wall which holds you back....so in our case, it would be crossing over from anger and denial about having celiac and its dietary restrictions, to a better and EASIER place where you accept, plan how you proceed, and go on from there. And when you cross that abyss things really do get simple. He makes a distinction between "simple" and "easy." Things are simple in that you can see them clearly and know clearly what to do and how to proceed in a positive way. But they are never "easy." In the begining, it requires work and determination.

I think with celiac, knowledge and planning are central. I used to be a huge grain eater. When I would get hungry, I'd crave grain type things. This is hard to break, but the key to success is planning....planning meals and snacks, buying the foods you need, and not leaving yourself with nothing appropriate to eat. Finding the best way to feed your body so you don't get the hunger highs and lows which trigger grain cravings. So I would really recommend testing all kinds of gluten free foods and finding your favorites and go from there. And don't look back and be miserable about what you have to give up; rather, find new favorites and be enthusiastic about those things. You change old habits by replacing them with new ones. You change old food eating habits by replacing them with new ones. I'm finding that it does get easier bit by bit. With practice, it becomes more second nature. I use my mom as an example....she said she rarely thinks about it and hasn't for years and years. She just knows what she can eat and what to avoid, she has her favorites, and that's that. She doesn't let it dominate her life in the least.

The main thing I'm bothered by now is just the stupid time I have to spend on food, planning, buying it, etc. I'd rather not....

[cgilsing]

Two words.....Phyllo Dough

There are so many wonderful things made with Phyllo Dough! Baklava, spinach and cheese puffs, cream cheese pastries.......the list goes on and on.....and I know damn well that I'll never be able to make gluten-free phyllo dough I walk past the frozen foods isle and I see all the phyllo dough goodies that "normal" people can eat! All they have to do with most of them is pre-heat the oven and throw them in!! I go to "normal people's" houses though and I never see them taking advantage of the fantastic food they have available to them! All they have in their freezer is ice cream and pizzas! I see them out to eat and all they order is a burger and fries! It makes me mad that they don't even apprieciate what they can eat! If I was on death row and was asked about what I wanted for a last meal you can bet several things with phyllo dough would be on the menu!!

[jerseyangel]

I think Jenvan posted a recipe for phyllo dough earlier today.

[cgilsing]

omg! Are you serious! I've got to find that! I didn't think it was possible!

[Guest kmmolina]

MallysMama....I so feel your frustation. I was diagnosed last year. I remember the first time I went shopping I was in tears, spend 3 hours in the store and came home with very little. Environkids cerals are great. They have a cornflake ceral that I swear is better than "tony the tiger". I believe they also have one that are corn puffs. It's hard finding substitutes for what you have always eaten...and then sometime you buy things that are aweful and you just want to give up. But don't give up...keep trying, and eventually you will have a whole new list of things that not only can you eat but that you will like eating.

[cgilsing]

This is why I love this board!! Jen did post a recipe for Bakalva earlier today!! I don't know what I would do without you guys! I never would have thought to use rice paper! This is great! What a coincidence!

[skoki-mom]

...and then sometime you buy things that are aweful and you just want to give up. But don't give up...keep trying, and eventually you will have a whole new list of things that not only can you eat but that you will like eating.

It's not just the buying it to later find out it sucks. It's the fact that you spent a small fortune on it and it tastes like crap. I spent $60 on regular food last week, enough to last my kids and me a week. Then I went to the health food store and spent $20 on 3 items. It sucks. I am a single mom, I have no money to spare, and frankly it ticks me off when people tell me to just eat lots of fresh fruits and vegetables. Like that is cheap or something.

[cgilsing]

It's not just the buying it to later find out it sucks. It's the fact that you spent a small fortune on it and it tastes like crap. I spent $60 on regular food last week, enough to last my kids and me a week. Then I went to the health food store and spent $20 on 3 items. It sucks. I am a single mom, I have no money to spare, and frankly it ticks me off when people tell me to just eat lots of fresh fruits and vegetables. Like that is cheap or something.

I hear you about that! gluten-free food isn't cheap! It's not just the specialty stuff either.....this weekend my husband went and got breakefast for himself at Cracker Barrel and brought it home. His breakfast cost $4.00!!! That included biscuits and gravy, toast, and bacon!! My breakfast consisted of frozen fruit with cool whip on top, a yogurt, and a healthy mom shake....I'm not sure what the total cost of that was, but you can bet that it cost more than his glutenous breakfast (and frankly didn't look as tastey)