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The New Celiac Drug Is Out There


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#61 GottaSki

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Posted 28 May 2013 - 12:27 PM

Hi ABQ--

 

I agree with what others have said above....thought I'd add if you want a good giggle...go back and read what some of us were posting our first months gluten-free -- we all stomped our feet :angry:  threw a few pity parties -_-  and were at times pretty darn grumbly  :wacko:

 

nearly all posts on this site come from a place of wanting to help others get through what we all have -- hopefully with a bit less heartache  :blink: along with avoiding many of the pitfalls we tripped over  :ph34r:

 

Hang in there  :wub:


  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


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#62 IrishHeart

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Posted 28 May 2013 - 12:56 PM

Dang, Ski....you used up all the good emoticons, girl.  :P  :lol:


  • 0

"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


#63 a1956chill

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Posted 28 May 2013 - 01:27 PM

When I was first diagnosed, I found such a great amount of comfort on this forum.

 

Lately, I've noticed - not just in this thread - this self-satisfied notion among "long time" celiacs and a real condescension to anyone who hasn't been at it as long.

 

It's turned me right off. Minimizing the experience of "newer" celiacs will drive them away. Like me.

I apologize if I in any way sounded condescending. It truly was not my intent .


  • 1

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#64 IrishHeart

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Posted 28 May 2013 - 01:35 PM

I apologize if I in any way sounded condescending. It truly was not my intent .

 

 

We know, chill...... we know. No worries, hon   ;)


  • 0

"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


#65 love2travel

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Posted 28 May 2013 - 01:49 PM

Hi ABQ,

 

There are so many kind, compassionate and caring people on this board that we are almost like family!  Heck, we ARE family - we have celiac in common.  :)   We are just responding truthfully.

 

I have been gluten free for 25 months and honestly I miss good bread, croissants, chewy bagels, phyllo pastry...But then I have always been a baker and cook and will never, ever forget the smell and taste and texture of gluten bread.  I make my own gluten free breads, pizzas, cinnamon rolls, etc. but they are not the same quite honestly.  They are probably as good as it gets as far as gluten free goes.  But if you do not care about food and/or cooking, I imagine that forgetting these things is easier.  I do not yearn for it or crave it - just miss it sometimes.  What I miss most is spontaneity and social functions where you must plan everything ahead (i.e. going to in-laws for Christmas).  

 

Actually, what I initially did was the day after I was diagnosed I made a list of about 70 things to have one last time.  And I had every single one and crossed them off that list.  Funny thing is, most can be made gluten free.  I was in denial for several months.  How could I have celiac?  I did not feel sick and I am a SERIOUS gourmand (dislike the word "foodie").  But after denial and grieving and anger, I came to acceptance and while every single label must be read, it became second nature.  I seriously wondered whether I would get to that place but I did!  So can you.  So, be encouraged.  Take the advice you have been given and know that you are not in this alone.  We have all been through it and we all hit rough patches.  It is just human nature.  :)


  • 1
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#66 love2travel

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Posted 28 May 2013 - 01:54 PM

For some odd reason, I was unable to add something in my post above.  Anyway, my attitude is what needed to be changed.  I moped, I sulked, I cried, I even screamed a couple of times.  Not in public, don't worry.  :P   When I realized it was not the death sentence I first suspected, things became easier.  In fact, my focus gradually was no longer celiac or the fact that I have this disease but on other things such as throwing myself into my hobbies and doing things I love.  Still passionate about cooking and baking - now it is just a little different!  But people are so often amazed that such-and-such was gluten free and do not even miss gluten in meals. 

 

Remember, this too shall pass.


  • 0
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#67 IrishHeart

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Posted 28 May 2013 - 02:07 PM

 this too shall pass.

 

Well, sweet girl....this just hit home because this was my father's credo...about anything in life that gave me a challenge and a disappointment....and he was correct.

 

now, when someone talks to us on here about being glutened and feeling crappy, I say it, rather "tongue in cheek"..that "THIS too shall Pass".

literally and figuratively. :lol:

 

Bottom line...we all adapt and we all live full and happy lives. And we are family, you are correct!!

 

I miss the "spontaneity" too...but a Koolatron cooler in the car, a few phone calls ahead, some experimenting with baking and cooking...good advice from my friends on here.... and nothing is impossible.!!


  • 0

"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


#68 gatita

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Posted 29 May 2013 - 12:06 AM

Ah yes, this too shall pass... I won't even get into how many areas of life that applies to.

 

I hear y'all about the wallow! Just never felt it myself, but I appreciate the sentiment...

 

Honestly, I was just telling my housemate how even after only 10 months at this gluten-free reality, I really haven't at all "grieved"over losing bread, pasta, etc. from my life forever. And don't get me wrong, I am a true foodie... yet the loss hasn't hit me... (not yet, anyway).

 

I just feel fortunate that I never had that angry phase of ayyy.. "all the things I am losing." I don't judge anyone who has felt that, please understand... I just feel lucky that it hasn't so far struck me that way.

 

Meanwhile, we are here for each other and that's what matters. Love this place.


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Diagnosed with wheat hates me 4/13


#69 julissa

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Posted 29 May 2013 - 04:37 AM

I was so relieved to finally know what was making me sick after so long trying to get answers, that I went gluten free joyfully, and still am joyful about it.

 

I too miss spontaneity and being able to eat out confidently. I eat out rarely and it's always a crap shoot for me. I usually feel it's not worth it. 


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#70 GottaSki

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Posted 29 May 2013 - 05:55 AM

lol..

 

'this to shall pass' has been the motto turned joke between me and my kids too -- it really ought to be the Celiac Disease Motto ;)


  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#71 gatita

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Posted 29 May 2013 - 07:34 AM

lol..

 

'this to shall pass' has been the motto turned joke between me and my kids too -- it really ought to be the Celiac Disease Motto ;)

 

....especially for those of us troubled by the big C! :D


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Diagnosed with wheat hates me 4/13


#72 nvsmom

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Posted 29 May 2013 - 08:01 AM

....especially for those of us troubled by the big C! :D

:D :lol:  Almost spit my coffee all over the computer at this!  LOL


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#73 love2travel

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Posted 29 May 2013 - 09:06 AM

Well, sweet girl....this just hit home because this was my father's credo...about anything in life that gave me a challenge and a disappointment....and he was correct.

 

now, when someone talks to us on here about being glutened and feeling crappy, I say it, rather "tongue in cheek"..that "THIS too shall Pass".

literally and figuratively. :lol:

 

Bottom line...we all adapt and we all live full and happy lives. And we are family, you are correct!!

 

I miss the "spontaneity" too...but a Koolatron cooler in the car, a few phone calls ahead, some experimenting with baking and cooking...good advice from my friends on here.... and nothing is impossible.!!

That is awesome!  No matter what it is, even what seems impossible at the time, it applies.  Sometimes it helps to change how we look at things, too.  And you are right - anything is possible.  I still cannot believe I can fly long haul with extreme pain.  It seems as though I am being stretched on the rack until the breaking point at the time but so far I'm still alive!  ;)


  • 0
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#74 grodeylocks

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Posted 08 July 2013 - 11:29 PM

When I was first diagnosed, I found such a great amount of comfort on this forum.

 

Lately, I've noticed - not just in this thread - this self-satisfied notion among "long time" celiacs and a real condescension to anyone who hasn't been at it as long.

 

It's turned me right off. Minimizing the experience of "newer" celiacs will drive them away. Like me.

Couldn't agree more with you man. It seems that there are heavily biased opinions often spread on this forum that may or may not hold any basis in actual fact.


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#75 GottaSki

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Posted 09 July 2013 - 05:55 AM

Couldn't agree more with you man. It seems that there are heavily biased opinions often spread on this forum that may or may not hold any basis in actual fact.

 

Opinions are frequently talked about in this forum -- we try very hard to make folks aware they should declare when something is their opinion or experience.  If it is scientific in nature -- links to the research is expected.

 

Opinions and experience of others is very valuable -- it should simply be identified as such to avoid confusion.

 

Here is a great example....Had you worded the above such as this:

 

"In my opinion there are heavily biased opinions on this forum......"

 

I would not be responding to your post -- I would have taken it simply as your opinion and moved along -- please add qualifying words in the future or provide links that support your theories.

 

Thank you.


  • 4

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)



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