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This Weird Seeming Life


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#1 Guest_BellyTimber_*

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Posted 22 March 2005 - 03:14 AM

In the family I grew up in (and left quite some years ago) we had several minor disabilities which we all have always got round in some excellent ways but perhaps denied a little (mainly for lack of information).

I recently explored how I tick & I think that's extremely valuable information as I decide how to face the next half of my life.

Having celiac disease (equivalent) finally overtake me was, at first, just another challenge to rise to.

Now I'm saying, hang on a minute, what's called for is to act completely "normal".

Even without other household members to cater for, I find that I am shopping, eating out (and in) in what seems a slightly too "odd" way, I feel it does not help me "fit in" (in my own mind definitely, and others' perhaps).

I am saying unusual things to shop and restaurant people, and to the doctor who thinks this a rather rare condition.

It's not a phase, it's becoming clear I'm going to be "stuck" like it.

For practical reasons I had to revert to the "simple" method of gluten-free shopping and eating, hence am not feeling too bright because of some kinds of malt, starch etc. hence the reminders in this forum are very valuable to me to see how to get my "ducks in a row".

Anyone else been through these emotions, what are the stages and how long does it last? Does the light at the end of the tunnel get bigger?

Best wishes,

Michael
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#2 darlindeb25

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Posted 22 March 2005 - 03:26 AM

;) michael--the light changes--on some days its very bright and some days it seems so far away--cleiacs sounds simple to deal with, but its a job--a constant vigiliance over your food, always needing to read ingredients before u open your mouth----its always on your mind--it has to be on your mind----keep at it--deb
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Deb
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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!

#3 plantime

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Posted 22 March 2005 - 07:56 AM

"Normal" is subjective. What is normal for me might not be normal for someone else. Gluten Free is my normal, everyone else just eats weird stuff!! :lol:
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#4 KaitiUSA

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Posted 22 March 2005 - 08:04 AM

"Normal" is subjective.  What is normal for me might not be normal for someone else.  Gluten Free is my normal, everyone else just eats weird stuff!! :lol:

I agree with that...I don't consider myself not normal. I am normal, I eat normal foods too. Just because I can't have certain things does not by any means make me weird, I live a normal life. There is nobody on this earth that is the same...I wouldn't even want it that way the world would be so boring. Everyone has their own idea of what normal is to me being gluten free is normal.
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Kaiti
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#5 Guest_BellyTimber_*

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Posted 22 March 2005 - 03:36 PM

I suppose I was just yearning for the old, simple life.

I reckon I must have compassion on the doctor who is the odd one, and be patiently wary in avoiding the shop people, etc.

I also got afraid because the overly narrowly defined diagnoses (and their absence) have lots of legal consequences here.

Today I delved into the recipe section and printed off the batter & deep fried information. That would be more like it! :P Is this a sign of recovery?

I vaguely recall buying a fryer once. Must "dig out" the bread machine again.

Difficult to know where to put things here, it's so small. (Moved home too many times.)

Thanks for your viewpoints,

Michael

:)
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#6 celiac3270

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Posted 22 March 2005 - 04:17 PM

Yep...it's an interesting question that I keep thinking of all the time. And what is normal, anyway? Is it what seems right/normal to you? Or to society? And if it's only on your opinion, then is it your opinion yet that eating gluten-free is normal? Or does it seem...strange? I've decided that at this point eating gluten-free is...natural...but like Deb said, it requires you to be on top of things all the time...I think that's what makes it feel abnormal. After all, if everything was 100% gluten-free and you didn't even need to read the ingredients list to know that...didn't need to worry about contamination...that would seem normal...since you don't need to worry about it--and then, that's basically what normal is to everyone else--not worrying about what's in the foods they eat. :huh:

Ugg...I'm going around in circles and confusing myself :wacko: ...I don't know the answer to this, but it is a pretty deep question :D.

Perhaps it's normal when it becomes routine...and I think I've reached that stage now. Once you don't need to call 1,000 companies to make dinner...then it's normal.

-celiac3270
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#7 Guest_BellyTimber_*

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Posted 22 March 2005 - 04:25 PM

Thanks celiac3270 I knew there must be a down to earth reason for it. The sheer hard work of the double take factor. I'm grateful for the others' opinions on the emotions too.
:D
I was doing better, before I moved home to a place one quarter (one fourth) the size).
:(
Michael
:lol:
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#8 Carriefaith

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Posted 22 March 2005 - 06:42 PM

That is a philosophy question... What is normal.

I certainly don't feel normal... but I am still getting sick everyday, so that may have something to do with it... I am bitter today so bear with me. But with regards to the diet....

I do find that I have to put a lot more energy and effort into eating and planning meals than I used to... But it's a lifestyle now and I've learned to deal with it. When I get down about it I just think that I could have it a lot worse...
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#9 Canadian Karen

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Posted 22 March 2005 - 06:56 PM

I guess it depends on who's perspective we're talking about.....

My diet to me is normal, certainly to my family, I'm normal, but anyone else not familiar with me and my celiac disease, I would be "different"..... As long as I am "normal" in the eyes of the people I care about and the people who count, that's all I need. Although lately my pre-teen daughter whose hormones are all in a tizzy certainly doesn't think her mother is normal, but then again, every girl goes through that stage where they think their mom is "weird". I have been informed today that I am not "cool". Oh well, I guess I better go get my June Cleaver outfit out.......

This too shall pass........

Karen
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Karen

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Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
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#10 ianm

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Posted 22 March 2005 - 07:03 PM

All I can say is that I was so sick for so long that I never want to be "normal" again. The gluten-free lifestyle has just simply become a habit but one that I eagerly embrace. Yes I have setbacks but if it wasn't gluten it would just be something else, maybe something even worse. To me the gluten-free way is the healthy way. I can't eat processed crap anymore so how can that be a bad thing? I can be physically active now when I couldn't before. It's just a matter of perspective.

Ianm
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

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Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#11 Guest_nini_*

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Posted 22 March 2005 - 07:22 PM

I have to agree that I'd rather be "not normal" than sick all the time like I was. If asking "annoying or odd" questions can save me days, even weeks of being ill, than I will willingly be weird!

Just today I received more confirmation that what I am doing is the healthy thing for my body. I found some photos of me pre dx where I was grossly overweight and bloated like a big ol balloon. Then I compared them with a photo of me taken last week, and I look like half the person I used to be. And I'm feeling soooooo much better! I have so much more energy now and I don't have to take the pain meds for fibromyalgia anymore!
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#12 jessicajane

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Posted 22 March 2005 - 09:26 PM

Have to admit I've been a little resentful about having to expend so much effort to feel normal, but it's getting easier and I'm feeling so much better. I like to be a little "unconscious" at times, and this is forcing me to pay attention and make changes...not at all a bad thing.

I've learned so much here; can't imagine how I would have coped without all the great information from the true experts.
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#13 celiac3270

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Posted 23 March 2005 - 04:49 AM

I'd rather feel normal and look normal (not all pale and thin) than eat normal. Gluten-free is the way to be! :D

And Karen, we think you're cool :P
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#14 KaitiUSA

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Posted 23 March 2005 - 05:51 AM

What is the expectation of normal ? I consider myself lucky that celiac is all it was..my friends 16 yr old friend died of cancer last week....I mean it could be worse for us...so what we have to check some labels and no its not the most convenient but we were able to get better and we can keep this under control and still live our lives and experience things.
I don't know if you guys ever heard this song but a bit of it goes....I'm in a hurry to get things done, I rush and rush until lifes no fun, all I really gotta do is live and die but I'm in a hurry and don't know why.
I think this is so true...what's really so bad about reading labels? It takes time? Does it really matter if your in the grocery store a few extra minutes? I consider that a normal part of my life.

Did you know in some 3rd world countries there has not been one single report of heart disease, high blood pressure, cancer, etc. because of the way they eat is so good(fruits and veggies) So maybe there are "not normal" foods here :unsure:

Ok just my perspective on things :D
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#15 Carriefaith

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Posted 23 March 2005 - 05:56 AM

So maybe there are "not normal" foods here



Like foods extrememly high in saturated fats like fast food burgers and gressy pizza's.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004


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