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Stellar003

Biopsy Negative...crying

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IBS isn't really a diagnosis it is a symptom. Since testing has so many false negatives it is a good idea for anyone with IBS symptoms to give the diet a good strict try after all celiac testing is done. Many of us that suffered undiagnosed for years were told constantly that we had IBS when what we really had was celiac or gluten intolerance. Sometimes the body can give us the answer that testing can not.

Ditto for me! IBS is a "broad term" applied to a syndrome--a collection of symptoms...irritable bowel---yes, it IS VERY IRRITABLE, doctor!! It's pissed off---but WHY??? :angry:

Listen to your body. Gluten wreaks havoc. If you feel better off it, you've got a gluten issue.

Tests are wrong all the time, unfortunately. Go with your gut (pun intended :)


"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

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I had a NEG blood test back in 2010 and I had been gluten-free for 4 weeks at the time, thinking it was a good idea. I had been VERY ILL for 2 years and felt Gluten was a real problem. My stupid doctor said it wouldn't affect the test :unsure: I believed him :unsure: and continued to eat gluten for ANOTHER year as I slowly dwindled down to nothing. A gastro doc scoped me back in '09, but failed to biopsy :angry: I just kept losing weight, my brain function and ability to drive, etc....Only my PC doc was able to confirm my diagnosis.

I wouldn't eat gluten again for a test , but that's just me. I never want to be as deathly ill as I was again.


"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

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:D I love this , it made me smile :D

:D good! :D


"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

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Just had a horrible nightmare!!! What if we needed a doctor's prescription for gluten free foods??:unsure::blink:


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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After the suggestion from Zu888 I have read the book Healthier Without Wheat and it really has confirmed in my mind I am not Celiac Disease but I do have non-celiac gluten intolerance.

As per the book it states

"Gliadin is a type of gluten. When the immune system attacks gluten, it produces gliadin antitbodies. If you have gliadin antibodies, then it is apparent that your immune system has interpreted that gluten is not food; it is a foreign invader that must be eliminated from the body. It attacks any gluten you eat. If either your IgA or IgG gliadin antibody test is positive, then you have a strong immune reaction to gluten and thus a gluten intolerance".

Basically the only different between the Celiac Disease and non-celiac gluten intolerance, is that in Celiac Disease you have Villous atrophy (damage of villi in the stomach), while symptoms & treatment are exactly the same for both.

I too was so confused but now I'm positive that I have non-celiac gluten intolerance and will live a gluten free lifestyle for life.

Hope this helps, the book is definitely a great read and really puts everything into content

I'm so glad you liked it, and it helped you as much as it helped me! :) It really made sense to me and helped me be at ease with my inconclusive bloodwork, and made me think about the connection of this gluten thing to all my other autoimmune diseases.

I'm not sure where you can get the book - I'm assuming (Company Name Removed - They Spammed This Forum and are Banned). My brother gave it to me as a gift (I think from amazon).


Suzanna

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I'm so glad you liked it, and it helped you as much as it helped me! :) It really made sense to me and helped me be at ease with my inconclusive bloodwork, and made me think about the connection of this gluten thing to all my other autoimmune diseases.

I'm not sure where you can get the book - I'm assuming (Company Name Removed - They Spammed This Forum and are Banned). My brother gave it to me as a gift (I think from amazon).

Thanks Suzanne

I live in Australia. I found it on a online bookstore called fishpond in Australia. I'm sure they ship internationally...

I actually feel like taking the book to my own doctor so she can read the research, as it was pretty obvious she knew very little about it...She just said no you don't have Celiac, and left it like that....

Thanks again for the recommendation...

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