Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Do You Have To Have "specific" Celiac Genes?
0

11 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

1

Share this post


Link to post
Share on other sites

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."

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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:

1

Share this post


Link to post
Share on other sites




 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!

1

Share this post


Link to post
Share on other sites

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

2

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.... :)

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,123
    • Total Posts
      919,495
  • Topics

  • Posts

    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,161
    • Most Online
      1,763

    Newest Member
    Jashan8534
    Joined