Having A Hard Time Staying gluten-free

[Sawyer]

I was diagnosed a few years ago but have never stayed on a gluten-free diet. On days I feel good I think it's no big deal and I eat bread or some other gluten item. How do you stay motivated to stay on this?

[penguin]

I don't blame you, I'd probably cheat if eating gluten didn't make me SO FRIGGIN SICK!

Other than that, I don't want more autoimmune disorders down the road, or cancer, or irreparable damage, or feel stoned all the time. Motivation enough.

[mouse]

My answer probably won't help you. I was LITERALLY almost dead when the doctor finally gave me the diagnosis. I embraced this diet with my whole heart and soul. I would imagine that this is hard for people who do not have many symptoms. Don't get me wrong, I would love to go to PF Changs and order every gluten filled appetiser they have. I just don't do it. If this is any help, I was almost 62 years old when diagnosed and the damage was so extensive that they don't think I will have a full recovery. I have been gluten free for over two years and my exhaustion is unbelivable. I keep trying to find answers to the energy problem and take many vitamins - just hoping for a good day now and then. This is not the way I thought our retirement would be. Good Luck. But, I have found the longer I was totally gluten-free, the easier it became. I think it is Dangerous Grains that mentions that the gluten is an addiction for some and by your eating it now and then, you are feeding the addiction.

[hez]

I am sorry to hear you are having a hard time staying gluten-free. This month, a year ago, is when I got my diagnosis. I went gluten-free the next day and have not cheated. I have been glutened but not on purpose. I was able to find my motivation early on, my kids. There is a good chance they may some day develop this disease. I wanted to lead by example. If I show them it is okay and managable then if they get the dx maybe it won't be so hard.

This is not to say I do not have my bad days. Have you noticed how many commercials are all about gluten! I keep reminding myself it is poision It makes me sick and I want to be healthy.

Sawyer, maybe it is time to do some soul searching. Find out why you are having a hard time. Then maybe you can find the answers so you can be on your way to better health.

Hez

[TinkerbellSwt]

I have only been gluten free for about 6 months.. so I am no expert, but I can tell you that I am afraid to eat gluten. I guess fear is a mighty deterrant. I was so sick I also almost died by the time they diagnosed me. I never did go back to the GI who told me just to eat a low fat diet and I would be fine. Anyway, I would love to have a slice of regular pizza, but I just dont think about it. It isnt an option. I want to feel better and be well. I now know, feeling what I feel now, that for the past 20 years I have not been well and I am liking how I feel more and more.

[ravenwoodglass]

I was diagnosed a few years ago but have never stayed on a gluten-free diet. On days I feel good I think it's no big deal and I eat bread or some other gluten item. How do you stay motivated to stay on this?

I like another poster was very ill before I was diagnosed and have some unresolved nerve issues because of it. You don't know how many systems ae effected until you are really, truely gluten-free. Do you have skin problems, well gluten-free they will most likely go away, do your joints and muscles hurt at times? Do you have the occasional upset tummy? Do you get heartburn or reflux? Have days when your so down it's hard to see the sun? Well if you don't remain gluten free you may see some mild and off and on problems become more permanent. You might want to check out the related disorders board, you don't want to be posting there in a couple of years do you? No one can keep this toxin out of your system but you, how much do you have to lose before you make up your mind. It's up to you.

[floridanative]

I mostly felt fatiqued due to anemia so I thought it would be hard for me to stay on the diet. But then when my stomach inflamation was gone in two weeks (didn't know it was inflamed) I loved the fact that I had a waist. Then when I had more energy in another two weeks I was just thrilled. Also, I started requiring an hour less sleep (8, not 9 hours) and the list goes on and on. I never knew how bad I felt until I felt so much better. There are too many benefits to list here. But as my Mother was recently diagnosed too (due to my dx) I see how bad she's felt for almost 20 years. That's enough to keep me on the straight and narrow....gluten (or just being sick for so long) even changed her personality. She went from being someone with a lot of positive energy to the total opposite. It's really quite sad but who knows...maybe now she'll get back to being her old self since she's off gluten.

[Sawyer]

I don't have the, I guess what you call, typical symptoms. I go thru constipation, weight gain, dark circles under my eyes, fatigue and I have recently been diagnosed with rheumatoid arthritis. I know those things are celiac disease related but they don't seem as severe as the other symptoms that many people talk about, except for the arthritis. I know I'm being stupid and I am making an effort here lately but like I said, I get to feeling ok then forget about the celiac disease and eat the way I grew up. I think habit is my problem more than anything. It's hard to break 43 years of bread and pasta eating. I also think it's when I'm tired at the end of the day that I don't want to think about food so I call out for something or stop by a drive thru and grab something easy. There again, habit. I didn't eat dinner last night or breakfast this morning because I couldn't think of anything to eat. I came home for lunch and made a scrambled egg for lunch. I don't know, habit and laziness perhaps are my biggest downfalls. You all have my admiration. I hate to cook but I think I'm going to have to start.

[Melzo]

I understand how hard it is to have the will power to stay on this diet. I think most of the people in the world (especially America) finds it very difficult to stay on task. On a radio talk show they did a survey - is it harder to stick to a budget or a diet? The majority of the people said that the budget was easier to stick to. But when it really comes down to it, the reason anyone wants or needs to stick to a diet is to BETTER THEIR HEALTH. I think that is the most important aspect of this conversation. Whether it is to lose weight (and all the problems that go along with carrying extra weight), to diabetes, to celiac. It is important to know that you are worth sticking to the diet for. You are sooooo special that you deserve a healthy life and that means sticking to the diet. A few years ago, I NEVER in a million years could imagine myself having the will power to stick to any type of diet. I do now because I understand what it means if I don't. I know that it would hurt my family if I got so sick that I couldn't function, not to mention developing a disease related to celiac disease. I don't want to put my family through that, nor myself. Call me selfish, but I love myself too much. Narcissistic I know - but that is my motivation.

I also always think of my father-in-law's words (he says it every time we go out to eat). "Got to love you kid - I don't know too many people strong enough to stick to it, but you do, and we are glad." You have to love encouragement!!!

So, Sawyer - I know you have the will power (If I can do it, so can you). You have our support and encouragement. We ALL know that you can do it!!!!

[Sawyer]

thank you Melzo, I don't have a lot of support in my life, so your words do mean a lot to me. I'm a loner by nature so even being on this board is out of character for me.

Congratulations on your pregnancy. I hope all goes well for you. I will take your words to heart.

Sawyer

[Melzo]

thank you Melzo, I don't have a lot of support in my life, so your words do mean a lot to me. I'm a loner by nature so even being on this board is out of character for me.

Congratulations on your pregnancy. I hope all goes well for you. I will take your words to heart.

Sawyer

I am very glad you came to this board then. If not for anything else but the support. Everyone needs support. For a very long time I did not find it in my family either. Remember, it was my father-in-law who said those wise words? I am very happy to have them in my life (especially my husband). If you ever want to chat, I'm here for you. ANYTIME.

Funny, I can't cook either. AND my husband will tell me I'm especially lazy when it comes to cooking. I was like you, I would go without food rather than cook it. However, I didn't cheat! Wonder if it's better to starve then to be glutened??? HA HA HA HA I am eating better now that I'm pregnant. Best thing to happen to me and thanks for the congrats!!

[Guest nini]

welcome to the board... I agree that laziness and not liking to cook make it more difficult, but there really are ways around this. I have a newbie packet that I can send you if you like that has lists of mainstream foods that are gluten-free, fast food and restaurant chain menus, naturally gluten-free menu ideas (all of this out of necessity of being a busy mom with a small child)... I guess the way I make it stick in my brain is that I equate gluten with poison period... I wouldn't willingly ingest small amounts of arsenic so if I equate gluten with that, then, I'm less likely to be tempted. Not to say that I don't get very upset when there are Krispy Kremes in my presence! (I miss those big time) But the longer I am gluten-free, 3 years now, the more severe my reactions are if I get even a tiny bit of cross contamination from gluten.

if you want the newbie files, just e-mail me at nisla@comcast.net and in the subject put "request newbie survival kit"

[tarnalberry]

I was diagnosed a few years ago but have never stayed on a gluten-free diet. On days I feel good I think it's no big deal and I eat bread or some other gluten item. How do you stay motivated to stay on this?

How do you stay motivated for anything? By making a decision to do something and sticking with it.

Gluten doesn't give me horrible symptoms. I get an unhappy stomach for five or six days, and some dizziness and difficulty concentrating and a headache. I get a bit achey and sore. Nothing even as bad as having a mild flu. But I know in the long run it's not healthy. Why would I choose to indulge in unhealthy practices that I know my body can't handle? Even alcohol can be metabolized out of the system quickly, without causing lasting damage if you don't abuse it. It's primarily a choice to make the healthiest decisions that make sense to make. I'm not going to live in a bubble and avoid everything, but I'm not going to open myself up to things that aren't that hard to avoid either. Mostly, it's a conscious decisions for m.e

[Ronnie]

I was doing pretty good when i was diagnosed a little while ago. But just recently i've

started taking more chances when it comes to what i'm eating. It kinda scares me, because i don't

want worse problems later on down the road.

I just find it so hard when my family is eating all this Normal food.

[tiredofdoctors]

I'm sorry you're having trouble staying on the diet. I can't offer you any pearls of wisdom -- I've only been gluten-free for 8 1/2 months now. I'm not the expert. Also, mine is a little different. I was told that I have no choice, as the gluten is destroying the cerebellum of my brain, and my retinas. I can continue eating gluten until my brain has difficulty regulating my ability to breathe, swallow and see -- it's my choice. Given that, I choose to be gluten free!

[Sawyer]

Lynne, that's what I call motivation! I'm sorry to hear you have that extreme of a problem. Ronnie, that's my problem too, everyone around me is going out and grabbing Subways or burgers and I'm eating the salad or going home to eat. I don't trust the burger place here to not put the bun on, then remember and take it off. I've found too many crumbs on my food before.

I did good yesterday. I've been fighting a cold/stomach bug for about 3 days and yesterday all I wanted was toast and tea but I didn't do it. Last night I was feeling better and had dinner with others. We were having this concoction of taco meat in crescent rolls and I asked for mine to be dished up and set aside before they made the rolls. I then put the meat in a salad with some avocado and was very satisfied with it.

I'm very happy I went all day with no gluten at all, unless there was cross contamination in my grits but I don't feel like it was. Usually I get a pain in my side when I have gluten and so far, so good.

I'm traveling for Easter and I'm a little uneasy about road food and my Mom's cooking. She knows I'm not supposed to eat anything with gluten but if it's like usual, she'll make pizza or want to go out to Chinese. I'm determined not to eat off my plan this weekend.

Thanks all for your wisdom and support. I think I finally got to the point I knew I needed to do something and needed a kick in the seat to get going with it.

[debbiewil]

Sawyer, I can understand the not wanting to cook all the time, especially after a long day at work etc. One thing that helped me with that is I made a list of a few things I LIKE, that are gluten free and reasonably safe from cross contamination at the local fast food places. I try hard not to hit them often, but the days I work from 8 in the morning until 9 at night, I know I'm not going to cook when I get home. But I will decide that I can stay gluten-free by hitting Wendy's drive thru and getting a large chili, or one of the other gluten-free foods on my list. Deliberately eating gluten is simply not an option for me, so I came up with other "options". Even noted foods that were available at the local 7-11 that were gluten free. It may not be very healthy, but I'd rather eat a whole container of Lay's stax chips, than eat gluten. A package of planters peanuts from the quick mart where I get gas is better than gluten. I do a lot of traveling, and have lunch and dinner meetings, seminars, etc. at work, but I haven't deliberately eaten gluten since I found out in Sept. I'll pack or pick up something after if I have to. Every time you eat, you make choices- toast or English Muffin, pasta or potato, chicken or beef, whatever. I simply decided to ALWAYS make my choices gluten free.

Debbie

[Edward]

This forum is great help.

I was diagnosed a few years ago and have eaten gluten free ever since. When I do get glutenized, the discomfort is very difficult. That is why I don't do it on purpose. My local health food store has some great gluten free foods, so that helps a lot. I've had gluten free bagels and donuts and they are very good. I don't mind too much paying the extra money to have something that I otherwise couldn't.

Keep up your efforts and take care.

Ed

[StrongerToday]

This time last year, I was so sick and miserable - and I hardly knew how bad I really was. It took me through the summer of being constantly sick to go see my dr. When he told me to cut out wheat and diary for six weeks I was all "what???". By the end of the six weeks I was stunned at how good I felt. I literally can remember driving to work, all singing and happy, and thinking "oh, this is what it's like to WANT to go to work". I reintroduced wheat as a trial and was sick for days. It was only then I realized I'd been feeling like that for years (not constantly, at least not until early 2005).

Are there days when Olive Garden commercials tear me up? Would I give my soul for a Bruegger's Asiago Bagel with herbed cream cheese? Oh, you bet. But - do I want to spend the next couple days in the bathroom? Hardly seems worth it to me!

There are lots of good gluten-free alternatives out there. It does take some research, trial and error - but you will find good breads, brownies, pancakes, etc. I am still dairy free as well, which some might say is a bigger challenge.

I didn't like to cook or have leftovers before. Now I do, no choice really. And it does help that I've started to "eat to live - not live to eat". Having that mindset in itself has helped tremendously.

I should add that I've lost 52 pounds and look better and feel better then I have in years. I recently saw my ex husband and he said he almost didn't recognize me. And the compliments I get... better then any bagel I could have :-)

Best of luck...

[Fiddle-Faddle]

Hang in there, Sawyer, and see if you can take steps to head off food difficulties before you might face them. If your mom makes pizza, bring or buy some corn tortillas and ask her if you can help with the cooking. Then simply top some of the tortillas with sauce, cheese, and toppings and you're set to go (you might have to bring a small can of plain tomato sauce, too, as some tomato sauces contain wheat starch). For Chinese, ask the waiter if they can make yours without ANY soy sauce. Most Chinese restaurants offer some kind of "diet" entrees that are steamed instead of stir-fried, with dipping sauce on the side. Get plain steamed rice, not fried rice.

If you set yourself some kind of timeframe, like 3 or 4 weeks, you'll find that most if not all of your cravings will disappear. If you want the convenience of bread for sandwiches and toast, I HIGHLY recommend the Kinnikinnick "white" sandwich bread--it tastes very good, keeps well in the freezer. and somebody told me you canorder it direct from the Kinnikinnick website, or you can find out from their website which store near you might stock it.

Good luck!

[Sawyer]

thank you for all the suggestions. I have to say I'm doing better today than I thought I would. No cravings, no wanting to eat bread or anthing else like that. I sometimes don't get home until 8:30 at night and I do a lot of traveling with work, up to 400 and 500 miles a week so many meals are fast food or restaurant meals. Is there somewhere that lists fast food places and gluten free alternatives? I could use both that and restaurant guides. Today I took some gluten-free refried beans, leftover guacamole and threw that into a salad with some salsa. It worked. I also had a gluten-free protein shake this morning. Tomorrow I travel for work and then Thursday I'm heading out for Easter. I will be back Sunday night or Monday. My goal is to come back here and report that I was gluten free for the entire trip. That would give me a sense of accomplishment and a feeling of knowing that I can do this.

[MallysMama]

Good luck, Sawyer!! I'm right there with you on struggling to consistently stay gluten free. (I'm sure I messed up today - eating at a buffet....hopefully I won't pay for it at work tomorrow.) I've had Celiac my whole life - so it shouldn't be so hard for me. However - I, too, hate to cook (I'd much rather eat out!)...and I'm such a picky eater! I've recently discovered some good store-bought gluten-free foods...but they're soooo expensive! I feel guilty for buying them when I have plenty of other options that are naturally gluten free and a lot less pricey. I'm all about convenience and fast! I can be totally gluten free at home... but as soon as my hubby wants to eat out - I'm all for it (but not all for being different)....so I usually end up cheating. And I, too, don't have major strong symptoms most of the time....so I have a hard time as viewing gluten as "poison"...because I don't feel the effects of the "poison" very strongly. So, I feel for your struggles.. and wish you the best of luck this Easter!!

[slpinsd]

Sawyer,

I'm new at this and struggling, too! Most of the time gluten makes me feel horrible, so I am sometimes afraid of it and treat it like poison. However, I will admit--for the second time- I purposely ate gluten. I was at a wedding and the chef said the chicken only had salt, pepper, and garlic in it, so I gave it a shot. While I was eating it, my breathing became restricted and the reflux started, so I KNEW it was contaminated, probably with some "garlic" dressing. So after that, I figured I was already ruined for the evening, so what a better time go and chow down a piece of chocolate cake it looked so darn good.....and it was.....but my body definitely reminded me with rumbling that I did NOT want that. Give it a shot- and think about what you CAN eat, keep a diary of symptoms- and I bet you will start seeing symptoms disappear!