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Living Normally While Battling Celiac Is Like:

drowning in an ocean while

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59 replies to this topic

#1 1desperateladysaved

 
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Posted 13 February 2013 - 03:01 PM

I tried to live normally, for 30 years even though my body fought a horrendous war on gluten. I had been told to ignore my symptoms and live like they are not there. I had been told that my problems were all in my head. The Md lightlysaid to give up gluten, as if it were as easy as giving up excercise for lent.

I am thinking that Living normally while battling celiac is like: (Well perhaps I haven't tried all of these)

Drowning in a stormy ocean while ignoring the waves.

Picking up 100 lb weight and running a marathon.

Racing the 100 yard dash on an uncasted-broken leg.

Plugging in your computer in the belly of a fish. (I don't think Jonah did.)
.
If my mind is a little muddled, or the imagination a little too sharp what do you think you can blame?

Note, I have edited this to make it clear. Regretfully, the replies that helped me to know how to change it, may be confusing to future readers. I will take full credit for this, so please do receive them gracefully.
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#2 kareng

 
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Posted 13 February 2013 - 03:27 PM

Wow! That sounds pretty hopeless!

Perhaps if you feel this despondent you should seek some counseling? There is no shame in taking antidepressants temporarily if you need them. It can be a long hard road to get well, but it isn't impossible.
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"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
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#3 1desperateladysaved

 
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Posted 13 February 2013 - 03:33 PM

Wow! That sounds pretty hopeless!

Perhaps if you feel this despondent you should seek some counseling? There is no shame in taking antidepressants temporarily if you need them. It can be a long hard road to get well, but it isn't impossible.


I see that you need some clarification, Karen. I have been frustrated with being told I am obsessed and am trying to help those who haven't experienced it to understand the experience. I actually am quite well and chuckling somewhat over some of my ideas. I admit plugging one's computer into a fish is really doubtful. I just can't understand how people can say just ignore it? When my friends are sick, I want to send flowers and cards. I don't expect them to live normal.

But I very much am still in the battle. Even though my 100lb load is mostly off!
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#4 kareng

 
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Posted 13 February 2013 - 03:44 PM

So...you are trying to say that a person with Celiac can not live a "normal" life? I don't find that very encouraging to newly diagnosed people.


For the newly diagnosed:

It can be an uphill hike for a while, but I feel I live a " normal" life. I make dinner, I walk my dog, I avoid cleaning my house as long as possible.... The only things I don't do the same as everyone is not eat a small part of the food they eat ( gluten). It limits me a little when eating out or traveling, but I have figured out how to handle it and have shared my techniques on this forum. I hope that is more helpful and encouraging to the newly diagnosed.
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#5 1desperateladysaved

 
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Posted 13 February 2013 - 04:25 PM

So...you are trying to say that a person with Celiac can not live a "normal" life? I don't find that very encouraging to newly diagnosed people. Kareng




No I wasn't sying that at all.

I was trying to describe what it is like to have undiagnosed celiac. I am hoping that unsympathetic family members could gain some insight into what it is like. I also was hoping that others with celiac might read it with understanding. Yeah, that is what it is like! I also took it with some sense of humor as one must in order to survive.

I am talking about mostly what it is like when one is in the heat of battle. Before diagnosis and when first attempting gluten free. I am not talking about life after that. I don't know it yet, since I am still battling hard. I think you are beyond battling and into the new normal for you.

I hope that helps to clarify.

I am saying that gluten has caused much trouble, and while I was eating it, I was trying to go on as if nothing was wrong. Even after I learned of it, others be little the problem. I am looking at cascading waves and they say, "Just ignore it!" Right?!
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#6 IrishHeart

 
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Posted 13 February 2013 - 04:42 PM

You wrote this in the "coping section" so, I guess I also interpreted it as you are finding this so difficult that it requires a herculean effort (it does sometimes, yes) and you are not doing well with it at all. It's not very clear, to be honest. I would not have guessed you were directing your thoughts to the family members of a celiac as you originally stated in your second post--until you explained it further.

The overall tone sounds very grim. :( Hope you view it differently now.

I've had to battle back from the near dead and I've been in physical therapy 2X a week for 2 years yet I do not think I am not living normally nor do I find this post to be very encouraging for the the newly diagnosed.

I do not find it encouraging for the "long diagnosed" me either.
Sorry, just not seeing that at all.

If you want to address friends and loved ones of celiacs, maybe you could write something more specific and put it in that section?

NOTE: I need to state here that Karen and I responded to the ORIGINAL post and posts # 2 and #3 that you made .

In all fairness, you have edited them so much now (after we asked you what you meant), so our responses look somewhat critical and disjointed. This is not the case at all.

Edited by IrishHeart, 14 February 2013 - 10:43 AM.

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 Smylinacha

 
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Posted 13 February 2013 - 05:15 PM

I actually like living this way better...food-wise. I know I a, eating healthy now...never did that before.
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#8 IrishHeart

 
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Posted 13 February 2013 - 05:54 PM

I actually like living this way better...food-wise. I know I a, eating healthy now...never did that before.


Great attitude!! :)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#9 kareng

 
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Posted 13 February 2013 - 05:56 PM

.

Living normally while battling celiac is like: (Well perhaps I haven't tried all of these)

Drowning in a stormy ocean while ignoring the waves.

Picking up 100 lb weight and running a marathon.

Racing the 100 yard dash on an uncasted-broken leg.

Plugging in your computer in the belly of a fish. (I don't think Jonah did.)

That is what I think after 30 years. If my mind is a little muddled, or the imagination a little too sharp what do you think you can blame?

I mean in the battle. Hopefully, healing comes after the battle. My battle was mostly when I was undiagnosed.



I'm getting dizzy! This post is mostly the same but the other ones keep changing! ( editing)

This still sounds like you are saying Celiac is impossible but I give up. I can't follow it. I'm not sure what we are talking about now.
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"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
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#10 gatita

 
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Posted 13 February 2013 - 06:24 PM

Hmmm... I never saw the original post, so only responding to what's there now...

I at first thought this post was meant to be lightly humorous, in a dark humor kind of way, about the challenges many of us face. Like those "You know you're gluten intolerant WHEN...." threads.

Am I the only one who saw it that way? (scratches head)
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#11 IrishHeart

 
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Posted 13 February 2013 - 06:33 PM

.


I'm getting dizzy! This post is mostly the same but the other ones keep changing! ( editing)

This still sounds like you are saying Celiac is impossible but I give up. I can't follow it. I'm not sure what we are talking about now.


That makes 2 of us! :lol: something got lost in translation and some major editing...... I think I'll just say good night.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 1desperateladysaved

 
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Posted 13 February 2013 - 06:56 PM

Hmmm... I never saw the original post, so only responding to what's there now...

I at first thought this post was meant to be lightly humorous, in a dark humor kind of way, about the challenges many of us face. Like those "You know you're gluten intolerant WHEN...." threads.

Am I the only one who saw it that way? (scratches head)


Thanks, but it sounds like you got it!! Thanks so much.
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#13 1desperateladysaved

 
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Posted 13 February 2013 - 07:03 PM

Hmmm... I never saw the original post, so only responding to what's there now...

I at first thought this post was meant to be lightly humorous, in a dark humor kind of way, about the challenges many of us face. Like those "You know you're gluten intolerant WHEN...." threads.

Am I the only one who saw it that way? (scratches head)


The original post was unedited until 9 pm central, so actually you did see it. When I edited the post moments ago, I left the orignal intact, but for I added to the beginning and end.

Whew!
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#14 1desperateladysaved

 
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Posted 13 February 2013 - 07:29 PM

I actually like living this way better...food-wise. I know I a, eating healthy now...never did that before.


Me too, when you put it that way.
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#15 1desperateladysaved

 
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Posted 13 February 2013 - 07:42 PM

You wrote this in the "coping section" so, I guess I also interpreted it as you are finding this so difficult that it requires a herculean effort and you are not doing well with it at all. It's not very clear, to be honest.

I would not have guessed you were directing your thoughts to the family members of a celiac--until you explained it further.

The overall tone sounds very grim. :(

I've had to battle back from the near dead and I've been in physical therapy 2X a week for 2 years yet I do not think I am not living normally nor do I find this post to be very encouraging for the the newly diagnosed.
I do not find it encouraging for the "long diagnosed" me either.
Sorry, just not seeing that at all.

If you want to address friends and loved ones of celiacs, maybe you could write something more specific and put it in that section?

NOTE: I need to state here that Karen and I responded to the ORIGINAL post and posts # 2 and #3 that you made .
In all fairness, you have edited them so much now (after we asked you what you meant), so our responses look somewhat critical and disjointed.


I agreed that I could have been more clear about what I talked about. I saw that people would be brainwashed away from what I intended by the replies. I am sorry to make your responses look odd. I hope you will understand now what I meant to do and it might be a help to some. Now, I edited the first post also. If I hadn't, the real intent of the writing might have been lost. Then again Gatita found it.

This was inspired by a debate in another post. I avoided mentioning it to "Protect the innocent." Had I been willing to address it specifically it may well have been clearer, but less protective.

Thanks for helping me polish it up.
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