Jump to content

Follow Us:   Twitter Facebook Celiac.com Forum RSS      

Get email alerts  Subscribe to FREE Celiac.com email alerts
arrowShare this page:
Subscribe Today!

Celiac.com Sponsor:
Celiac.com Sponsor:


Member Since 16 Jan 2007
Offline Last Active Jul 21 2015 07:38 AM

#928853 Please Help... Diagnostic Question...need More Information

Posted by on 30 August 2014 - 06:20 AM

Also, it looks like the blood test for tissue transglutaminase IgA was negative.


Now you might be IgA deficient, or your body cannot make much IgA because the immune system does not work well. This is also typical  with small children.

  • 1

#928851 Please Help... Diagnostic Question...need More Information

Posted by on 30 August 2014 - 06:05 AM

only 92% have DQ2.5 and DQ8, which are the official celiac genes.


Th rest have other genes, or half.


Call the lab to get the full results. 


Several people here have gotten the full results.



Here is a paper on why DQ9 is a celiac gene, and DQ2,2 and DQ7, and DQ2,3

The labs will report those are not celiac genes.....

https://www.duo.uio....dle/10852/28050 bottom of page, a pdf

  • 1

#920706 Gene Testing

Posted by on 18 June 2014 - 10:28 AM

I have seen other numbers, like 20% are Ttg negative when there is total villous atrophy and 40% are negative on Ttg  when there is patchy celiac (the most common form nowadays)


The antibodies are made locally in the intestine, and just a little spills over into the blood, and the amount can vary a lot. Additionally, there is a rather high cutoff because they want to avoid sending people to biopsies that do not have enough villi damage to get a diagnosis....


(The latter with the 40% I ran across in some articles about the then new DGP test, which is designed to find celiac when there is patchy celiac, and early celiac)



  • 1

#899200 Positive Biopsy, Negative Blood Work... Years Of Unexplained Symptoms Please...

Posted by on 11 December 2013 - 08:02 AM

the celiac blood tests are antibody and IgA type tests, and the sickest patients do not make enough of those antibodies for the tests to work. I even saw references that 20% of biopsy proven celiacs with total villous atrophy have negative blood tests

  • 1

#806300 Desperate!

Posted by on 25 June 2012 - 10:31 AM

Here about the "biopsy was done some years ago and was negative" : http://www.ncbi.nlm....pubmed/14632329

To make a prospective assessment of close family members of patients with coeliac disease (celiac disease) by testing their endomysium (EMA) and antigliadin antibodies once a year over a period of 12 y and to investigate whether and when they would develop a positive serology for celiac disease while on a gluten-containing diet.
Since first-degree relatives of celiac disease patients have a high prevalence of celiac disease, we screened 92 children and adolescents, all first-degree relatives of coeliac patients, for EMA and total IgA antibodies, once a year.
Among 11 relatives, at the time of the first screening, 6 already had a positive serology and histology for celiac disease, while 5 became positive only after a period of 2 to 5 y of negative testing. The jejunal mucosa biopsy of these five relatives with retarded positive serology for celiac disease showed a flat mucosa in four of them and a partial villous atrophy in one. They were all HLA DQ2 positive and clinically silent for celiac disease.
celiac disease can manifest itself after years of negative serological testing.
  • 1

#798039 Gene Test Interpretation

Posted by on 24 May 2012 - 08:57 AM

DQ5 and DQ7!

Not 3,1 or 7,5, this is old lingo.

Nowadays they use the , for the alpha chain. Beta cchain the first number, then comma, then the alpha chain. Like 2,5 means DQ2 with a 0501 alpha chain and 0201 beta chain.

I see it looks like Enterolab test results, especially the interpretation.

Now in mainstream medicine, neither DQ5 nor DQ7 are the official celiac genes, but there is an important issue with DQ7:

they did not run the alpha chains---which means you do not know if there is half a DQ2,5.

You know many DQ7 have the 05* alpha chain, which is half a DQ2,5 and celiac prone too.

Some have DQ7 or the 05* alpha chain plus DQ2,2 which together form the DQ2,5 in trans, an official celiac gene.

Now you have a positive biopsy, which means you very much likely have DQ7,5 where the 05* alpha chain is the celiac half gene.

Many other labs test for the alpha chains as well, because so many have half genes just like you.

The DQ1 (=DQ5) may mean you are very sensitive to gluten, and have neuro issues from gluten.
  • 1

#787091 Negative Serology - Disappointed

Posted by on 12 April 2012 - 12:43 PM

We had some discussions here on what causes falsely negative testing, and taking any kinds of steroids will cause the villi to re-grow (and cause negative ttg as it is only supposed to be positive with serious villi damage)
Also, b-12 probably causes villi re-growth and may cause negative ttg tests.
Maybe other things too.

Now the new deamidated gliadin test is designed to catch celiac earlier. Both the IgA and IgG version might be interesting to get, and the IgG version is even more specific than the IgA version. Specific for celiac, that is.

You might have something else caused or worsened by gluten, there are several possibilities, maybe microscopic colitis, maybe non-celiac gluten seinsitivity, and the ordinary celiac tests will not pick up those since they are designed to only pick up celiac with severe villi damage (in order to sort out candidates for biopsy of the small intestine)
  • 1

#777258 If Celiac Blood Panel Is So Inaccurate- Should I Spend My Money On It?

Posted by on 29 February 2012 - 07:46 AM

hotincleveland, the EMA test is totally specific for celiac, so I do not understand the need for biopsy.

Also, many places they have stopped doing biopsies for celiac, they just need two positive ttg-2 tests.

I read on the swedish celiac patients facebook page that they stopped doing biopsies for celiac now, and some places in Norway, just two positive blood tests, and symptoms and maybe gene tests in case no siblings have been diagnosed.

Now the test you were positive on, is much more specific than the ttg-test.

Maybe you can just get the gene test and then the diagnosis?
  • 1

#769027 Promethius Test Negative?

Posted by on 28 January 2012 - 11:14 AM

about 2% have other genes! I have also posted on this here on other threads.
  • 1

#760649 Anyone Able To Interpret The Genetic Testing

Posted by on 29 December 2011 - 04:41 PM

This is the most common celiac gene, also nicknamed HLA DQ2. (HLA DQ2,5)

You have only one copy of the DQ2,5 gene.

If you call the lab, they might have the result of the other gene (but it would not change things, since you already have the typical celiac gene)

Those genes are just about the risk, they do not mean you are celiac. Lots of people have HLA DQ2 and will never develop celiac disease.

The positive antigliadin IgA probably means it is early or patchy celiac, and with patchy celiac they might find a spot with celiac, or not, when taking biopsies.

Did they do the more specific deaminated gliadin test that many are getting now? It is much better at catching early celiac.
  • 1

#760525 Yet Another Doctor's Opinion

Posted by on 29 December 2011 - 09:09 AM

Dr. Hadjivassiliou in England researches gluten ataxia, and if you google hadjivassiliou you find several of his papers.

In the papers he always notes that about 20% of his gluten ataxia patients have DQ1....

Also there are at least three forums out there with very gluten sensitive people, and various neuro issues from gluten, and they often are DQ1.

(gluten sensitivity on braintalk, and on neurotalk, and on glutenfree and beyond)

About DQ1 and celiac, no such luck as being recognized as a gluten sensitive gene here, as tey do not even test for it.

I had to pay about 150 dollars extra to get the tiny saliva sample to Enterolab and get the test done, and they found the 0505 beta chains. I have no idea what the alpha chains are. But the charts on wikipedia.org say mot likely 01*in alpha.
  • 1

#760482 Could This Be Celiac?

Posted by on 29 December 2011 - 06:52 AM

Could also be hidradenitis suppurativa, just use the search on the forum. It is definitely gluten related.
  • 1

#756651 Should I Eat Gluten Before A Biopsy?

Posted by on 14 December 2011 - 09:19 AM

In Denmark, doctors are very ignorant about celiac disease.

You need to consume gluten on a regular basis before the biopsy of the small intestine.

Yes, constipation is also a common celiac symptom.

But, you may have this problem with opiates from gluten (and opiates are constipating) and that is a different reaction than celiac

google gliadin reichelt and you get a lot of research by a norwegian researcher.

Here is more about the subject:

also, http://sites.google..../jccglutenfree/

  • 1

#739643 Seriously? Gluten In The Drywall?

Posted by on 18 October 2011 - 08:49 AM

I am in Europe, and we very sensitive celiacs and DH sufferers definitely get sick from wheat starch! Especially those with DH.
  • 2

#737568 Should I Get Diagnosed?

Posted by on 10 October 2011 - 07:56 AM

Some people who had gone gluten free order a private test with enterolab.com as their tests can pick up the antibodies for a long time after going gluten free.
But they cannot diagnose celiac per se.
Just gluten sensitivity,and casein and soy intolerance (which may be huge problems for some too)
  • 1

Celiac.com Sponsors: