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whitball

Can't Stand It Anymore!

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Okay, I've been gluten free since February. I've decided that this is just the worst thing in the world. I just need to vent. I'm sick of the whole thing. I'm sick of trying to be careful. I'm tired of pain. I just want to be normal. To have a good pizza, to have eggrolls, decent soy sauce, etc, etc. I made a delicious chinese meal for my son's friends, you know, fried rice, egg rolls, crab wontons, the whole works. I forgot to take out fried rice without kikomans soy sauce for me. I'm tired of separating stuff out. I'm tired of forgetting to separate things out. I make the best eggrolls and I can't even eat them. Thanks for letting me vent.


Positive biopsy, positive blood test in 2/2006

Muscle biopsy in thigh in 2004 to confirm metabolic myopathy (found denervated nerves)

Interstitial cystitis diagnosis 2004

Hysterectomy 2003

3 for c-sections, 2 laparoscopies to remove abdominal adhesions

Abnormal heart beat when tired or glutened

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Okay, I've been gluten free since February. I've decided that this is just the worst thing in the world. I just need to vent. I'm sick of the whole thing. I'm sick of trying to be careful. I'm tired of pain. I just want to be normal. To have a good pizza, to have eggrolls, decent soy sauce, etc, etc. I made a delicious chinese meal for my son's friends, you know, fried rice, egg rolls, crab wontons, the whole works. I forgot to take out fried rice without kikomans soy sauce for me. I'm tired of separating stuff out. I'm tired of forgetting to separate things out. I make the best eggrolls and I can't even eat them. Thanks for letting me vent.

Vent all you like! It really sucks sometimes doesn't it! Hugs to you!

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Vent all you like! It really sucks sometimes doesn't it! Hugs to you!

I was just diagnosed 2 weeks ago and I feel the same way. I am so disgusted with trying to figure out this whole meal issue. I love to eat and I don't mind some cooking, but making my own bread, muffins, etc. Forget it, I am mad that I have this, don't want to make anything special and I hate to bake. I really am a nice person and any other time would have no problem doing this for someone else (because I wouldn't be restricted) but I am feeling very bad for myself and embarrassed that I feel this way.

I read that you can go to Outback Restaurant....what can you order?

I am a mother of 4 children and my youngest just left for college in August and besides having empty nest syndrome, I now have to deal with this. I have always been the one to care for everyone and my husband is very supportive and cooked thanksgiving dinner so I would not be tempted) It must be just me and being just diagnosed just before thanksgiving, I am very sorry I am acting like this and I will overcome this with time. It just seems like everything has gluten and portion size is very important. I do better with frequent small portions. If anyone lives near a trader joe's, they have a 4 page list of gluten free products that you can physically see at the store. They helped me get through my thanks giving issue. I am not found of any of the bread or muffins. Toasting them helps them taste like a toasted cardboard, the peanut butter is what helps you swallow it.

Can someone tell me when will you feel some difference? I still have bad bloating, I am probably eating something wrong. Are we allowed to eat eggs (regular ones)?

Sorry to be so down, it just all new and empty nesters are sad over losing their last child from their home never mind loosing comfort food too.

B)

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Empty nest and add a newly retired husband. Shut, we were both out of jobs. We were dealing with this loss, his on his own and me on my own. It will take some time and adjustment, but it will resolve as long as you talk to your spouse.

Celiac, yes it's a major pain in the butt....and I can totally sympathize with our frustration. And, it's just plain hard to figure out. But, if you have been diagnoses with Celiac Disease, the power is in your control. An adjustment to your diet can regain your health. The options are not as desirable. As sick as I was, I thought I had something that could not be fixed without toxic drugs, chemo, radiation or worse......I cannot tell you how fortunate that I feel, that I am in control of my life and not dependent on the before mentioned to make me "better".

Yeah, the diet may be a pain in the butt for you.........but count your blessing. Be diligent about it, it will save your life someday.

I apologize if I sound harsh. I have seen so many friends here that have gone through years of not being diagnosed , the pain that it has caused them and the fragile walk they travel through a "normal" day, it an awful thing.

If you have Celiac Disease, stay on the diet, get healthy and don't ever whine about it. This is a reality check..........you deal now or you deal later. I would choose the NOW.

(This is not personally directed to anyone in this post, just personally motivated, unfortunately)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Empty nest and add a newly retired husband. Shut, we were both out of jobs. We were dealing with this loss, his on his own and me on my own. It will take some time and adjustment, but it will resolve as long as you talk to your spouse.

Celiac, yes it's a major pain in the butt....and I can totally sympathize with our frustration. And, it's just plain hard to figure out. But, if you have been diagnoses with Celiac Disease, the power is in your control. An adjustment to your diet can regain your health. The options are not as desirable. As sick as I was, I thought I had something that could not be fixed without toxic drugs, chemo, radiation or worse......I cannot tell you how fortunate that I feel, that I am in control of my life and not dependent on the before mentioned to make me "better".

Yeah, the diet may be a pain in the butt for you.........but count your blessing. Be diligent about it, it will save your life someday.

I apologize if I sound harsh. I have seen so many friends here that have gone through years of not being diagnosed , the pain that it has caused them and the fragile walk they travel through a "normal" day, it an awful thing.

If you have Celiac Disease, stay on the diet, get healthy and don't ever whine about it. This is a reality check..........you deal now or you deal later. I would choose the NOW.

(This is not personally directed to anyone in this post, just personally motivated, unfortunately)

:rolleyes:

Sorry, I fully understand how fortunate I am to be able to have control over my illness - Celiac Disease.

I was just having a bad day after thanksgiving. There are people less forutnate than I - and again I do have control. Just not much of it today. ha ha

Figuring out foods is hard. I am hispanic and it is very hard for me to figure out how to make some of my favorite foods and still remain true to my new food program. Thats a new way to look at it, my own food program. I am not a skinny person and watching my weight is an issue I always battle. Anyone have any helpful hints for loosing weight on gluten free products? Most people are skinny with this illness, but not me.

Well, I will continue to follow my new program, because not following it and the consquences are much sadder and scarier than not.

Sorry, but today was pretty tough for me. :D:rolleyes:

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Vent away, it does help and so does this board. I can totally sympathize with both of your frustrations. I remember right after diagnosis wanting to throw a tantrum every time I walked into a grocery store. Altough it doesn't make it better now, please know that IT WILL GET BETTER. You will feel better and it becomes much easier to cook and shop with some time and experience. I think I can safely say that just about every person on this site has experienced the same emotions. Keep focused on the goal and hopefully soon your symptoms will start to drop off one by one and all of a sudden one day you realize that you feel great!


Amy

Diagnosed by biopsy with DH August 2005

Diagnosed with hypo-thyroidism December 2005

Diagnosed by biopsy with Celiac July 2006

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I am also sick of coping. It has been a week and a half of being gluten free. Yesterday I did great at a Thanksgiving buffet with no problems. I was feeling great. I then ate some plain Orville pop corn and put salt on it. After eating that, I ate a bowl of potato chips, ate some hershey cherry cordial filled kisses and then washed it down with coke. Today has been miserable with C and major D. Are pop corn, potato chips and pop a no no? Every day I think I have this diet figured and then boom. I also am having problems with milk, butter, corn, eggs, onions, garlic and have an allergy to sulfites. I swear I feel like I am dying of cancer or something but hey, the cat scans, MRIs, x-rays, and blood tests all say no.

Does anyone else feel like their instestines have been through a battle field after having C and D or is it just me? Please tell me this gets better.

Sorry to rant. Hugs to everyone and thanks for listening.

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I have been thinking about my post. It was totally emotional for me. I certainly did not mean to add to your bad day. If I did, I am truly sorry. :(

It is tough beginning the diet, just ask the tons of people that I asked, asked and asked. I have been where you are. Please feel comfortable to ask any question that you have. Ask away with a product, or ingredient question.

We have all started at the beginning and the beginning is a new start...........a start to feeling better.

Once you get the swing of it all, it truely is not that difficult, it does get easier.

There are lots of us here, that were where you are now.

If I can help you in any way, please ask or PM me.

Lisa


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Okay, I've been gluten free since February. I've decided that this is just the worst thing in the world. I just need to vent. I'm sick of the whole thing. I'm sick of trying to be careful. I'm tired of pain. I just want to be normal. To have a good pizza, to have eggrolls, decent soy sauce, etc, etc. I made a delicious chinese meal for my son's friends, you know, fried rice, egg rolls, crab wontons, the whole works. I forgot to take out fried rice without kikomans soy sauce for me. I'm tired of separating stuff out. I'm tired of forgetting to separate things out. I make the best eggrolls and I can't even eat them. Thanks for letting me vent.

Why don't you buy soy sauce that has no gluten? Then you won't have to worry about it! Nobody will notice the difference.

moceansylvia, you might have to eliminate all grains (meaning no pasta, bread, cake, muffins etc. at all, other than for a treat) before you'll lose any weight. A lot of the overweight (rather than underweight) celiacs can't really tolerate starches.

And most hispanic foods can be made gluten-free. Use corn tortillas instead of flour tortillas, tacos are made from corn, too. Just be creative! You need to experiment and make up your own recipes, even. I've done that. I've had some successes, and made some things that were terrible. But it can actually be fun.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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getting started on the diet is very hard to do. The first thing is to clean out your kitchen so you do not eat something that you should not, the wheat stuff is addictive so get rid of the stuff that you will grab in a weak moment. For at least 3 to 4 weeks, it is best if you do not go out & buy gluten-free breads and things, better to just eat meat, eggs, fish, veggies, fruit and nuts, rice and potatoes and don't forget sweet potatoes ;) if after week 2 you need a carb have a small bag of fritos or a couple corn tortillas. rethink breakfast, as in out of the box, I do fruit & nuts for breakfast but you can also eat leftovers or a salad. or something like scrambled eggs & a meat maybe a shredded potato wrapped in a corn tortilla.

if you have intestinal damage you might not be able to handle a meal of potato chips, candy and other snack foods. the person that ate all that stuff, if you check the box, it was probably the candy. If it was Brach's candy, it will make you sick everytime and there will be no gluten on the label...

I feel for all you newbies and hope that maybe there is a support group in your area... This board is also good (sometimes a gluten-free friend is not as strict as they should be...) there are also a lot of books with recipes etc. the holidays are especially a hard time to start the diet, but if you are diligent you should feel better by christmas, it is worth it

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I used to LOVE Kikkoman soy sauce. La Choy is gluten-free. It's not my favorite, but it's very easy to find. The best gluten-free soy sauce that I've tried so far is San-J Wheat Free Tamari, which tastes a lot like I remember Kikkoman tasting. I use it in all the Asian cooking I do now and my husband hasn't mentioned noticing a difference.

I had a lot of success on the Six Week Body Makeover (the infomercial) when I needed to lose weight. It was actually one of those eating plans that I felt great on. I had never heard of gluten or celiac at the time I was on it, so had no idea why I felt so great on it. The main thing with it is no sugar, no salt, no WHEAT, no dairy and no oil. So it works along with the gluten-free diet pretty well. If you've ever seen the infomercial, it's completely true. They have a free message board for it at http://www.mybodymakeover.com/forums/ .

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Man get a grip. Eating amounts to 1%-5% of your life, good health and wellbeing amounts to 25% or more with overall happyness. Lifes a jerk aint it but there are problems far far worse than being a celiac. Anyways I am positive that there will be an eat what you like pill (either regulate zonulin or enzymes which break down gluten) within the next 10years, most likely much less if you dont care about much research being done. So tough it out.


God sees you homie

"When once you have tasted flight, you will forever walk the earth with your eyes turned skyward, for there you have been, and there you will always long to return."

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Man get a grip. Eating amounts to 1%-5% of your life, good health and wellbeing amounts to 25% or more with overall happyness. Lifes a jerk aint it but there are problems far far worse than being a celiac. Anyways I am positive that there will be an eat what you like pill (either regulate zonulin or enzymes which break down gluten) within the next 10years, most likely much less if you dont care about much research being done. So tough it out.

My, aren't you compassionate!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Hang in there it will get better. Have a really good look at foods when you do your shop- you will be surprised at what you can find. Also check out health food shops as they stock some biscuits and things that you can't buy at the supermarket (At least here in Australia)

Also check menus of restuarants and cafes as you are walking past, I have found a few places that do gluten free melts etc, simply because I looked at the menu out of interest.

As far the things you get replacements for, I find it easier not to expect it to taste like the real thing. For example, I can buy pre made cinamon donuts, when I tired it for the first time I thought they weren't that great, because they really didnt taste like a "real one" However after this I didn't think it about and they actaully taste ok now( good to eat, rather than going without)

Also - you will ocassionaly come across something that tastes as good or if you are very very lucky tastes like what is replacing.

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"Thanks for all of your comments. I have tried a variety of gluten free soy sauces, but it's been difficult for me to make the change over. I did not know that La choy was gluten-free. I'll look into it. Thanks. Yes, I do realize that there are alot of people who have worse problems than I do. I am a social worker, so I am aware that there is a whole lot worse out there than what I deal with. However, it is healthy to vent and is awesome to have others on this site to offer support to get me through a weak moment. thanks.


Positive biopsy, positive blood test in 2/2006

Muscle biopsy in thigh in 2004 to confirm metabolic myopathy (found denervated nerves)

Interstitial cystitis diagnosis 2004

Hysterectomy 2003

3 for c-sections, 2 laparoscopies to remove abdominal adhesions

Abnormal heart beat when tired or glutened

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I know how you feel. I think most of us get frustrated once in a while. I personally like my diet, I just don't like that gluten and dairy are everywhere! And that I always have to worry if I am going to get sick from things I eat. I really wish that there were more products produced in 100% gluten-free facilities. Dairy free would be nice too ;)


Carrie Faith

Diagnosed with Celiac Disease in March 2004

Postitive tTg Blood Test, December 2003

Positive Biopsy, March 3, 2004

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To all the newbies...while not all of my physical problems have cleared up (I have some other issues besides gluten/casein intolerance), the food thing has gotten much better. The shopping and food selection things will mostly become second nature, but I still have a day here or there where I just want to eat what everyone else is eating. For the most part I LOVE the food I eat, but when I go to someone's house for dinner, or to a restaurant, I would really like to not have to worry about what to eat. And, I'm leaving on vacation on Friday, and it's a cruise...for the most part I'll be fine on the ship, but we have a shore excursion scheduled that is 8 hours long in a foreign country...that has me worried, lol.

So yes, it really does get better, but it can still suck sometimes, lol. :lol:

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You know, it is all just a mind game. There are stages in this deal:

1. Shock and Awl

2. Total confusion and feeling of helplessness

3. Study Stage - soaking everything possible

4. Overwhelming - feeling how impossible this must be

5. Confidence building - you can read labels now

6. Anger - because you can't have that fried chicken that you used to love, and your friends and family, just

don't get it

7. Sorry, I'm not there yet.

But you have to know what is good and what is not. It's not always about ingredients, it's about health. You have to tell yourself, if I eat this, I will hurt and feel bad for days.......is it worth it.

If anyone would like to continue with this list, please feel free as I would like to know what comes next. :unsure:


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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7. okay, I about got this figured out

8. doing good cooking my own food, going to support group, & they are finding restaurants that we can safely eat the food - this is good !!!

9. Packing your own food is second nature, even if you are going across town & plan to eat at a safe place - you pack food & wow, there was a huge traffic jam & you did not get to eat at your safe place, so you just ate your packed food, & went to the movies.

10. You feel so darn healthy, happy, & energetic you do not care what anyone else does or thinks.

11. You have an aversion to anything remotely wheaty

12. You are having your 3rd Christmas season gluten-free & all your family recipes that you are famous for are converted & the wheat eaters cannot tell the difference & really do not care.

13. Planning a trip to NY City the gluten-free restaurant capital of the world

14. Finding a totally gluten-free bakery that the stuff is better than good & although you are very sensitive you get no reactions !!!

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And, I'm leaving on vacation on Friday, and it's a cruise...for the most part I'll be fine on the ship, but we have a shore excursion scheduled that is 8 hours long in a foreign country...that has me worried, lol.

Donna, we went on a cruise in January. The problem with the shore excursions is, that you officially aren't allowed to take any food off the ship, or bring any back onto the ship, either. We overcame that by signing up for an excursion that didn't leave until 1:00 PM, and ate a very late breakfast at 11:00 AM (they made me stir fry three times a day).

I did take some snacks out in my backpack. Nobody checked our bags as we left the ship, and I took the chance. You may have to do the same thing to survive. It's not likely they'll have the time to check everybody's bags, as the buses, taxis etc. are waiting for the people doing the excursions, and there are too many people leaving the ship. It would take hours to check every bag.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I know how you feel!!!!! I felt anger when I was at the grocery store last night when I saw a man buying 5 loaves of garlic bread. The kind that comes already sliced with butter and garlic in it that you put right into your oven. I'm sure he was a nice, law-abiding citizen with a loving family, but all I could think of was, "you jerk!"

I started feeling better within a month and I am now in my sixth month gluten free and feel like a completly different human! I didn't even visit my family this year for Thanksgiving. They kept referring to it as my diet....like I'm trying to loose weight or something!!!! Hang in there. You can eat M&M's and Fritos if that helps =)

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I am also sick of coping. It has been a week and a half of being gluten free. Yesterday I did great at a Thanksgiving buffet with no problems. I was feeling great. I then ate some plain Orville pop corn and put salt on it. After eating that, I ate a bowl of potato chips, ate some hershey cherry cordial filled kisses and then washed it down with coke. Today has been miserable with C and major D. Are pop corn, potato chips and pop a no no? Every day I think I have this diet figured and then boom. I also am having problems with milk, butter, corn, eggs, onions, garlic and have an allergy to sulfites. I swear I feel like I am dying of cancer or something but hey, the cat scans, MRIs, x-rays, and blood tests all say no.

Does anyone else feel like their instestines have been through a battle field after having C and D or is it just me? Please tell me this gets better.

Sorry to rant. Hugs to everyone and thanks for listening.

You may be allergic to corn. I started having problems with corn myself. There is corn syrup in pop. There was probably some kind of modified food/corn starch (which you should always avoid) in the cherry kisses and depending on the brand of chip there was probably some gluten. I know it's tough. Sometimes you just want to participate like a normal person!! You WILL start feeling better. Be diligent and maybe stick to a bland diet for a few days till your tummy is recovered. Good Luck.

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:D It's hard, very hard to give up foods we love.

My Thanksgiving dinner was:

Turkey, green beans and squash,

My sister made a crustless pumpkin pie

for me.

However, I'm just glad its not something a

lot worse. Like my sister has macular degeneration

and is legely blind. It's heart breaking to watch her

try to read with a magnifing glass.

So as difficult as it is :Count Your Blessings

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This diet is a major life change. It takes a long time to get the hang of it ,and it's perfectly normal to mourn for what you can no longer have. It sounds like you're making a lot of gluten food still. I'd recommend making only gluten-free if you can because I can only imagine how hard it is to make delicious smelling and looking food and not be able to have any of it. Most things can be adapted to gluten-free without much difference in taste. Someone already mentioned LaChoy soy sauce which is gluten-free, egg rolls can be made with rice paper. If you want pizza, try Glutino brand. I had one the other day and it was delicious. I've been gluten-free for 14 months now and what I eat tastes good to me and I no longer comparing the taste to my old gluten versions. gluten-free is normal for me. And I refuse to let gluten-free get in the way of me eating what I want to eat so if there's something I want, I find myself a gluten-free alternative.

What has really helped me deal with everything is that I was so sick pre-gluten-free. Being gluten-free is what has given me my life back - everyday I am reminded of how lucky I am when I am able to get out of bed, go to work, go to class, workout. I am also surrounded by very supportive people and when I was living at home my family was willing to pretty much go gluten-free with me.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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