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Do You Have To Have "specific" Celiac Genes?


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#1 freeme808

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Posted 23 February 2013 - 09:52 AM

I received my enterolab results, and low and behold I am gluten intolerant. I also have two genes, but it said it is not specific to Celiac. I have a horrible rash(everything leads to DH), and I have some kind of inflammation/infection in my intestines-when you feel them they are very hard(I am working with my holistic doctor). Here are my results:

 

Gluten Sensitivity Stool Panel
Fecal Anti-gliadin IgA      53 Units   (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA      11 Units   (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score      285 Units   (Normal Range is less than 300 Units)

Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1      0502   

HLA-DQB1 Molecular analysis, Allele 2      0602   

Serologic equivalent: HLA-DQ   1,1  (Subtype 5,6)

 

Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

 

Im confused because of my rash and intestinal problems. Everything I read says if you have gluten sensitivity and not celiac, you usually don't have these two problems and if you do- it's celiac. But I don't have the "specific" gene.

 

I am also very happy to report after so much suffering that I am gluten, dairy, and sugar free. :) However, my rash has flared up...I figured it would get worse before it gets better. And as I mentioned earlier, I'm still figuring out what's going on in my intestines. Thank you for your help!


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Need to be sugar, gluten, dairy, & yeast free!

Taking baby steps. Having a harder time transitioning than I thought.  :mellow:

 


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#2 ravenwoodglass

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Posted 23 February 2013 - 10:15 AM

I have had DH since childhood and although it was a long road was finally firmly diagnosed celiac about 10 years ago. I don't have either of the two most commonly associated 'celiac' genes either. Gene testing is IMHO interesting and can be helpful but is not the be all and end all of celiac diagnosis. Whether you are labeled celiac or gluten intolerant the script is the same. Lifelong adherence to the gluten free diet. Glad to hear you are feeling better and I hope you continue to improve.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 freeme808

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Posted 23 February 2013 - 10:42 AM

Thank you so much. :)

I should of searched the forums first before posting. I did find this, which I found very interesting:

"When the GI Dr.'s are running their tests....they are looking for Celiac Disease specifically. A person can have leaky gut and as a result the immune system is producing antibodies (since gluten would be recognized as "foreign" in the bloodstream) but this is a completely different situation then Celiac Disease.


In my opinion those with DQ1 may be more susceptible to leaky gut (for whatever reason) and the gluten intolerance is a consequence of that. Since the condition is not the same as Celiac the immune response is not ocurring in the gut (as it does with Celiac).....instead the immune system is responding to undigested gluten which has left the gut and entered the bloodstream. Its the same scenario with other other food proteins such as dairy, soy, eggs, etc....leaky gut allows those foods to leave the gut and enter the bloodstream undigested.

Under normal circumstances gluten, other foods, toxins, bacteria, parasites, etc. would not pass through the gut wall...they would not have access to other areas of the body. Its only when the gut is leaky that this becomes a problem which ultimately can lead to autoimmunity.

Possibly every person that I've come across with DQ1 and gluten intolerance.....also has other food intolerances (usually lots of them) which is more indicative of leaky gut. The symptoms are more neurological (although there may also be some GI symptoms) and they generally do not solve their health issues by eliminating gluten alone. The DQ1 symptoms are described as being more "severe" in some ways worse than those with DQ2 or DQ8....but really in my opinion its comparing apples and oranges. We're comparing two different conditions....which is why its rare for a person with DQ1 to be diagnosed with Celiac."


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Need to be sugar, gluten, dairy, & yeast free!

Taking baby steps. Having a harder time transitioning than I thought.  :mellow:

 


#4 IrishHeart

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Posted 23 February 2013 - 02:46 PM

The Enterolab fecal fat and stool tests are not considered valid tests for celiac. I have not seen anyone (including people in my family and circle of friends) who have not received a  similar report like the one you have posted. Word for word. Makes me skeptical. IMO.

 

The Univ. of Chicago Celiac Center has this posted on their website: 

 

 

Why don’t you recognize tests (stool tests or otherwise) for
non-celiac gluten sensitivity that are currently available through
companies like Enterolab or Cyrex?

    
                    

"We only embrace tests that have endured rigorous
scientific evaluations. So far, these tests have received no
evidence-based support.


Enterolab has never successfully published anything on the accuracy
of stool tests (nor have any other stool test manufacturers, to our
knowledge) making it difficult to confirm the research results. Because
of this, we must make our decisions based on what has been
published; Harvard, UCSD, and the American College of Gastroenterology
all agree that stool tests are simply not sensitive or specific enough
methods in screening for celiac disease.


We can say therefore with confidence that the test currently being
used by these labs is not good enough. In fact, while it is true that
about 40% of people with proven gluten sensitivity have elevated
AGA-IgG, it is also true that about 15-25% of the healthy individuals
who have absolutely nothing wrong also have elevated AGA-IgG. Hence,
about 60% of gluten sensitive people do not have elevated AGA-IgG
(making the test not sensitive enough); and about 20% of normal,
non-gluten sensitive people have elevated AGA-IgG for no apparent reason
(making the test not specific enough)."


Further reading: “Detection
of secretory IgA antibodies against gliadin and human tissue
transglutaminase in stool to screen for coeliac disease in children:
validation study”
at BMJ.com

 

 

 

Why not have celiac panels run or a biopsy of the area around those lesions to rule out DH?

Just a suggestion, but in either case, yes the gluten free diet is still the recommended treatment, celiac or gluten intolerant.


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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


#5 freeme808

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Posted 23 February 2013 - 04:47 PM

Thanks for responding.

The doctors in my area(my insurance) are not educated enough about celiac to do the right tests-some weren't in the system, and every derm I've ever been to in the pass just doesn't listen- so, I didn't want to waste anymore time. It's just too depressing. Then I ordered enterolab, hoping it would shed a little light. I am however seeing an holistic/MD now who is helping me with my conditions. After reading a lot today about gene and stool testing and everything in between...lol, very exhausting, I'm kind of over all the facts now.

I know my body and it's reactions, the problems I've had since I was a child....lol. Why couldn't I have this mindset a month ago!? I'm sticking to my clean diet...I feel so much better.  :wub:


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Need to be sugar, gluten, dairy, & yeast free!

Taking baby steps. Having a harder time transitioning than I thought.  :mellow:

 


#6 Lisa

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Posted 23 February 2013 - 05:48 PM

 I'm sticking to my clean diet...I feel so much better.  :wub:

 

I, too, am not a fan of Enterolabs, for many of the reasons Irish quoted. Do you have a family history of digestive issues or other autoimmune disorders?

 

I think you are wise.  Your pursuit of  good health, will find your conclusions.  Welcome!


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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#7 gatita

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Posted 23 February 2013 - 06:40 PM

I do trust Enterolab's gene test, however... it's done by the Red Cross, and not in question as far as I know.


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Diagnosed with wheat hates me 4/13


#8 IrishHeart

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Posted 23 February 2013 - 06:52 PM

FreeMe, if you feel better off gluten, then do what you think is best. I just wanted to make you aware of the testing procedures, if you had not

considered all of them yet. You know what's best..

 

Best wishes to you!


  • 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


#9 Lisa

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Posted 23 February 2013 - 07:45 PM

I do trust Enterolab's gene test, however... it's done by the Red Cross, and not in question as far as I know.

<grimace> No, don't think so.  Enterolab is a  "for profit" lab = The End.


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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#10 gatita

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Posted 23 February 2013 - 08:47 PM

They are indeed for profit.

 

However: "For the purpose of gene testing, our gene testing partner, The American Red Cross,...." Etc. They do farm out the gene testing to the Red Cross.

 

Anyway, I didn't mean to veer off topic.... :)


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Diagnosed with wheat hates me 4/13


#11 freeme808

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Posted 24 February 2013 - 09:03 AM

Thank you everyone. Sorry I didn't mean to start a debate. I do feel that the results have shed some more light on my condition. I only had two tests done via blood(the rest weren't in the system)..and although it was elevated, as far as "there" standard range goes they said I was negative. But I believed otherwise. My new doctor also said, if you were negative...it would be 0. The stool test has shown my raised antibodies...just like my skin does everyday(slowly getting better). I am also very anemic, and deficient and also have something going on in my intestines. However, there is a bright light at the end of the tunnel for me. ;)


  • 0

Need to be sugar, gluten, dairy, & yeast free!

Taking baby steps. Having a harder time transitioning than I thought.  :mellow:

 



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