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Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga

ttg iga fibromylagia constipation extreme fatigue teeth enamel dying tests blood help

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71 replies to this topic

#61 kareng

 
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Posted 08 April 2014 - 06:32 AM

I have read that article and many others. Some people react to stuff that is below the lower limit of gluten, right? I seem to be that one that has reactions to things with gluten in it under 20 parts per million.

 

 

Testing under 20 ppm doesn't not mean the product has 19 ppm.  It could have 2ppm or 0.  If they had used a test for 10 ppm, it might have been negative,too. 


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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


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#62 nvsmom

 
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Posted 08 April 2014 - 08:10 AM

Actually, Dr. Fasano addressed the genetic component at the gluten-free Conference Saturday in Orlando and he talked about this rather factually.

He said the HLA-DQ2 and HLA-DQ8 genes are the only genes associated with celiac. They are necessary for it, but not determinate.

In other words, you may have the genes and never trigger it. But if you do not have DQ2 or DQ8, celiac is excluded.

I know there are reports of cases where people have a celiac diagnosis, and do not carry either of these genes, and I cannot account for the abnormality. I am merely reporting what he said. He said they have researched it and this is still the conclusion.

Nobody yell at me now. I am just the messenger.

I know that is the theory but..... What about those like ravenwoodglass who is a firmly diagnosed celiac who does not have those DQ2 and 8 genes, I think she has the double DQ9.... I think that's what it was. I think.

I know doctors say that it is impossible to have celiac disease without those genes, but it is quite amazing how often the impossible happens when it comes to medical issues. ;). LOL
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#63 GottaSki

 
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Posted 09 April 2014 - 06:10 AM

There are also MANY unknown other issues within the Functional Digestive Disorders realm -- I have every marker for celiac disease -- that did not stop me from developing or being born with another unknown functional GI disorder.


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-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 :)


#64 IrishHeart

 
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Posted 09 April 2014 - 09:22 AM

There can be elevated TtG antibodies in  liver disease or other AI diseases..

There can be villous atrophy in other disease states too

Causes of Villous Atrophy Other Than Celiac Disease

  • Giardiasis
  • Collagenous sprue
  • Common-variable immunodeficiency
  • Autoimmune enteropathy
  • Radiation enteritis
  • Whipple’s disease
  • Tuberculosis
  • Tropical sprue
  • Eosinophilic gastroenteritis
  • Human immunodeficiency virus enteropathy
  • Intestinal lymphoma
  • Zollinger–Ellison syndrome
  • Crohn’s disease
  • Intolerance of foods other than gluten (e.g., milk, soy, chicken, tuna)

So a combo of the "positive blood test" and "a positive biopsy" still may not mean celiac.

 

The genetic test would be the tie breaker, so to speak.


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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


#65 rcheltrvel

 
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Posted 09 April 2014 - 09:25 AM

So far I have elevated TtG antibodies and nothing else wrong. What happens then? What if every test under the sun comes back negative besides TTG-IGA?


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#66 IrishHeart

 
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Posted 09 April 2014 - 09:37 AM

Find out why they are elevated.  Was the biopsy neg? gene test neg?


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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


#67 rcheltrvel

 
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Posted 09 April 2014 - 10:11 AM

gene test and biopsy both negative and my uncle is a good pathologist in new york city and I had my slides sent to him for a second opinion, he said the GI took enough samples and everything looked fine.


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#68 kareng

 
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Posted 09 April 2014 - 10:18 AM

gene test and biopsy both negative and my uncle is a good pathologist in new york city and I had my slides sent to him for a second opinion, he said the GI took enough samples and everything looked fine.

 

 

Sounds like you don't have Celiac.  Good for you!   :)


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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#69 anand

 
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Posted 09 April 2014 - 10:29 AM

U may want to read
http://www.amazon.co...lated disorders

And also see if any gluten sensitivity specialist like dr fasano , Is interested in ur situation...
An intestinal permeability test will also help determine extent of leaky gut, which u can work towards sealing...
Best wishes,,,
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#70 nvsmom

 
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Posted 09 April 2014 - 05:37 PM

There can be elevated TtG antibodies in  liver disease or other AI diseases..

There can be villous atrophy in other disease states too

Causes of Villous Atrophy Other Than Celiac Disease

  • Giardiasis
  • Collagenous sprue
  • Common-variable immunodeficiency
  • Autoimmune enteropathy
  • Radiation enteritis
  • Whipple’s disease
  • Tuberculosis
  • Tropical sprue
  • Eosinophilic gastroenteritis
  • Human immunodeficiency virus enteropathy
  • Intestinal lymphoma
  • Zollinger–Ellison syndrome
  • Crohn’s disease
  • Intolerance of foods other than gluten (e.g., milk, soy, chicken, tuna)

So a combo of the "positive blood test" and "a positive biopsy" still may not mean celiac.

 

The genetic test would be the tie breaker, so to speak.

 

Good point.


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Nicole Posted Image

"Acceptance is the key to happiness."

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Celiac - June, 2012
Hypothyroid - August, 2012

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#71 rcheltrvel

 
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Posted 09 April 2014 - 10:06 PM

No way, stay on my thread, I love a good argument! I don't have to think about me and my problems for a minute!!! :)


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#72 nvsmom

 
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Posted 10 April 2014 - 08:50 AM

No way, stay on my thread, I love a good argument! I don't have to think about me and my problems for a minute!!! :)

 

LOL Dr House would be handy here.  ;)


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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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