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How Did You Cope With Your Diagnosis;


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#1 Born2run2

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Posted 11 December 2004 - 02:42 PM

Did anybody else go thru a grieving mode when it became apparent that you wouldn't be able to enjoy all the bread based foods anymore? It's been a few years, but before I found tasty substitutes for my favorite foods I had a very bad chip on my shoulder. I thought I couldn't have the muffins and donuts anymore and that became very important. Of course I just had to learn to bake and substitute ingredients ,and get a couple good cookbooks. But when I first started out I didn't have any help from anyone. I didn't understand the disease or the consequences of eating the wrong foods. I'm glad there are boards like this and alot of information you can get from the net and literature from the different celiac organizations. I think the diet is so much easier to follow, and more information is found now then when I started. I was wondering what experiences some of the people that have been doing this for awhile have had adapting emotionally. Judy B) <_< <_< :) :) :) :)
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#2 stef_the_kicking_cuty

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Posted 11 December 2004 - 03:56 PM

Well, i've had problems and pain for about 6 years. It finally was so bad that I thought I should hit a tree with my car. No doc ever figured out what it was and finally even my husband thought, it's all in my head. Then, out of a stupid coincidence i found the solution on my own and then i figured out, it must be celiac (my doc finally confirmed it). Well, needless to say, my relieve was so big after finding the reason of my pain, that i was real happy of getting better the first few days. :lol:

Then i found out, what i can't eat anymore and I felt into deep frustration for another couple of days. :( I was so sad, not only couldn't I eat bread and rolls (spell?) anymore. But the rolls I was used to, the big, fluffy, german roles, that i missed so much over here in the states. I could never again eat them either, my last hope of eating them, when i visit my home country was destroyed after 8 month being in the states and craving for them and wishing the still unknown day (it might take another 3 years until i'm allowed to leave this country) closer I could fly back home. I just broke down and sobbed. That might sound ridiculous, but it still brings the tears back into my eyes, when I think about it. :(

But i'm a person that doesn't give up without a fight and i'm still trying to find a way to bake these rolls. If I've found the "perfect roll" :P I'll let you guys know how i did it.

Well, now i'm much better and also my cooking has improved (except for baking these rolls).

Greetings, Stef
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#3 Born2run2

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Posted 11 December 2004 - 07:28 PM

I used to sabotage myself. I'd get better then start eating the stuff that was bound to make me sick again. I can't believe how sorry I was for myself, I'd go past a bakery and cry. <_< :ph34r: I know that sounds melodramatic, but I was hoping for a miraculous cure. Something like this has all been a joke, go ahead and eat till your hearts content you deserve it. B) The hilarious part of the whole thing was I wasn't that interested in that type of food until it became apparent that I couldn't eat it anymore. I finally decided that I was hurting myself, and if I wanted the goodies that I'd better figure out how to make them. I started eating all the stuff gluten free that I felt was my due. Well I gained 50 pounds. I am glad there are people to talk to about this, it makes me less isolated. I've been gluten free for over 10 years now, so (HALLELUJAH) there is life after diagnosis. Judy
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#4 tarnalberry

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Posted 11 December 2004 - 07:38 PM

Yep, and sometimes still do - depending on the situation. Less so for me than some others, since I'd been doing my own cooking from scratch for so long that it didn't make a huge impact on my diet. But yeah, any change as huge as that is going to need some coping.
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#5 Maggie1956

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Posted 12 December 2004 - 03:02 AM

The hilarious part of the whole thing was I wasn't that interested in that type of food until it became apparent that I couldn't eat it anymore.

I am glad there are people to talk to about this, it makes me less isolated. I've been gluten free for over 10 years now, so (HALLELUJAH) there is life after diagnosis. Judy

Yes! :o I am going through the 'blues' at the moment to a certain extent.

I've been gluten-free for a whole 12 days, but in the last 2-3 days, I've been feeling really sore in bones and muscles all over, and I'm really teary. :(

I guess part of it is because I'm feeling aweful, but I realise it's also a type of mourning too. I'll never again live the life I had before being diagnosed. Also, I'm still trying to figure it all out too. Do you ever really 'figure it out' ? <_<

Oh yes, it is WONDERFUL to know there are other people to share it all with.

Thanks for your post Judy.

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#6 pixiegirl

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Posted 12 December 2004 - 04:20 AM

Hmmm... I guess I miss some of the stuff I use to eat, especially a local gourmet pizza place, Sweet Tomato's. And my local Thai resturant, i know they use both rice and regular noodles and since no one there speaks English very well, I'm afraid to try it. I guess I miss eating out, we use to do that about 3 times a week and now I almost never eat out. But mourning? For me its not that bad... I just accept this for what it is... its a new challange for me and I'm trying to meet it head on. However my attitude about everything in life is this way... I know it sounds so "rose colored glasses" but I really do try and make lemons into lemonaide... we all make a choice, our glass is half empy or half full, its up to you, you get to pick.

When I was younger and I'd complain to my mom about whatever crisis was happening in my life she'd always say to me, well such and such has this problem and its way worse then yours... and to me that was insensitive and not sympathetic (and I still feel that way and she still sometimes does it!) but you know what as much as I hate to admit it, she's right. My only sibling is battling mouth cancer right now (never smoked, no hazardous jobs, drinks only occasionally) and I'll I've got it a little dietary problem. I'm good.

I don't mean to down play our issues (like my mom does so often) I know they are big and mean a whole life style change, but its a new journey for me and I'm making the best of it. I'm actually enjoying finding new things like like to eat and making things from scratch... I guess I just love a challenge.

Best to all of you, Susan :)
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#7 darlindeb25

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Posted 12 December 2004 - 05:02 AM

;) susan is right--even though sometimes it is very hard to look at in that respect :( some days it seems just one more thing will put me over the edge :ph34r: and then i remember how sick i was :( and know that i am in a much better place now :) my mom always says, "God never gives us more then we can handle!" :rolleyes: i often thought that God has a sense of humor cause my shoulders dont seem that wide! :lol: deb

ps---i will always miss my noodles and cream of chicken soup :( have not found a noodle i can eat as of yet
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#8 Born2run2

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Posted 12 December 2004 - 03:47 PM

:D <_< ;) Anymore I make most of my food from scratch including ice cream and "dairy." I say that with quotes because I can't do regular dairy and haver to rely on soy. I can relate what you are talking about Maggie. I went thru the same thing. It will take you awhile to heal, and you can still have your pizza's and burgers, you will just have to make your own pizza crust and burger buns. I'm thinking that you are probably going thru a mourning period, but you will adjust. I'm on the other side anymore, and accept my condition for what it is. But it took me at least 18 months to get to that point. I had muscle and bone pain before diagnosis ,and it took a good 6 weeks for me to get better. Then of course like I said earlier I would have to try eating what I considered normal food to see if I was cured. I know now that for me to live a normal life I have to stay gluten and dairy free, sometimes I swear I am my own worst enemy. Have a great Sunday, Judy :blink: :(
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#9 plantime

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Posted 18 December 2004 - 08:20 AM

I am having to deal with my food issues. I think that I am going through a stage of depression over it right now, since I can't eat most of what my family eats. I know that this stage will pass, and that I will be healthy. I think that I have to have my time of grief, just so I can move on. I, too, do my own baking from scratch. It is just easier for me.
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#10 granny

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Posted 18 December 2004 - 09:03 AM

I am having to deal with my food issues. I think that I am going through a stage of depression over it right now, since I can't eat most of what my family eats. I know that this stage will pass, and that I will be healthy. I think that I have to have my time of grief, just so I can move on. I, too, do my own baking from scratch. It is just easier for me.

Dessa, I'm so sorry you and the others are having such a hard time right now.
I had a rough time before and during Thanksgiving but since then have been doing well, emotionally. I reacted to the dinner for a couple of weeks but am back to normal now. It is really hard to deal with all the family get-togathers asscciated with the holidays and food. I'm assuming that is what you are dealing with, forgive me if I'm off base here. Hang in there and know that we're thinking of you and that you're in our prayers and hope things are better soon. granny
MERRY CHRISTMAS to ALL!!
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#11 Born2run2

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Posted 18 December 2004 - 02:22 PM

It used to be hard for me around the holiays until I offered to bring the stuffing rolls and desserts to my daughters house. Of course it's all gluten free I just forget to mention it and the others seem not to notice. I found especially for a good couple of years that holidays and special occassions were really tough. It'll get better. I know it doesn't seem possible right now, but you are still in the learning and grieving part of the process. I have a very good friend who is a Diabetic, and she went thru the same thing when she was first diagnosed, so it is human nature. My thoughts and prayers are with you. Judy
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#12 wclemens

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Posted 26 December 2004 - 03:22 PM

Hi,
Boy did I feel sorry for myself! I find it hard to believe now that I could have wallowed for so long in self-pity (I've struggled with food intolerances since the age of 8 and I'm 60 now). I've been going through a divorce the past 9 months, and realized 5 months ago that even though I retired after 25 years of teaching, I was going to have to return to work in order to pay my lawyers.

So, I got two jobs, one at our town's most famous and well-like bakery, and one at a fun and always jumping ice cream parlor--oh wait, I'm intolerant of all grains, all milk and dairy, egg whites, and yeast.

I have a heck of a time when people say, "Which pie tastes the best?"

"I'm intolerant of all grains, milk and dairy," I say in return, standing there slim and healthy, with a smile on my face, as they look at me with a startled expression. "I never touch the stuff!" I add.

I think it is the first time some have ever considered that their health problems might be attributable to eating grains, and so many of them have diabetes or other health issues, especially overweight.

I'm blessed to be working only at the bakery now, and I'm hoping that someday the store may be moved to offer alternatives to wheat-laden, sugar-laden treats, but I am reaffirming for myself my commitment to live a life without the foods to which I am intolerant, and this is a great way to confirm my resolve, in my opinion,
and to reach others with the news that diet makes a difference.

I have so much fun at work! Welda
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#13 celiac3270

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Posted 26 December 2004 - 04:04 PM

Hi,
I know I've read this post before, but I've never replied. The first few weeks of trial and error were miserable--eating soggy breads and hard breads and breads that fall into crumbs when you touch them...and getting tired of eating the same three or four foods until I could find out which others were gluten-free.

Later it sunk in that this was the diet I would be on for the rest of my life. It was disheartening that there would be a lack of spontaneity and such inconvenience, in addition to the same foods over and over and years of reading lables, calling companies, and worrying about wheat getting in my food.

The diet isn't difficult to deal with, but it's just a pain in the neck and I've found that at this point I've tried all the good foods at the healthfood store. Lately I've been feeling like I eat the same thing over and over again. I don't know what I want to eat for breakfast--I make french toast or eat a Food by George english muffin. For lunch, it's always Mac & Cheese, PB & J, grilled cheese, a hotdog, etc. I've also been limiting fats, so I can't eat as much of the tasty food as I want, and eating no tomato or orange products, eliminating gluten-free pizzas, lasagnas, spaghetti, ketchup, etc....making things that much more boring. Dinner is always potatoes, a meat, a vegetable, or something like that. I think I could get a more satisfying variety with tomato sauce. I think what's also disheartening is that despite my progress in weight, I'm still getting sick, now every 3-5 days...vomiting, stomach cramping, gas, etc. I've been doing this for 10 months and I'm not seeing any results. Though I would never stop the diet, I sometimes get angry at it and the fact that I'm sacrificing wheat and not feeling much better.

Sorry.....just a vent....... :)

-celiac3270
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#14 celiac3270

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Posted 26 December 2004 - 04:08 PM

When I was younger and I'd complain to my mom about whatever crisis was happening in my life she'd always say to me, well such and such has this problem and its way worse then yours... and to me that was insensitive and not sympathetic (and I still feel that way and she still sometimes does it!) but you know what as much as I hate to admit it, she's right. My only sibling is battling mouth cancer right now (never smoked, no hazardous jobs, drinks only occasionally) and I'll I've got it a little dietary problem. I'm good.


I know what you mean. I often think of that when I'm mad or sick. There is, however, another group that has had no health problems at all....there are also many 14-year-olds who have never had any dietary restrictions, not been vomiting and having stomach pains since they were seven, and never had to deal with ANY health issues! <_< I think that's what upsets me sometimes, too.
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#15 Born2run2

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Posted 26 December 2004 - 05:31 PM

It's got to be disheartening to be avoiding all that and still be having symptoms. I forgot did you mention dairy? I cannot eat any dairy at all. I admire you for being in the world of gluten and being able to stick with the plan Welda. I'm sorry to hear that you are getting a divorce. That would be enough to at least tempt me in to eating all those poison goodies. Good for you that you are able to resist. After a certain amount of time I think the reality of how sick I got when eating the other stuff becomes a distant memory. I sure hope you are able to figure out what is making you sick celiac3270. Maybe try an elimination diet where you stop eating certain foods then reintroduce them to your diet might help. My thoughts and prayers are with you. Judy ;) :D :angry: :( :unsure:
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