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nora_n

Member Since 16 Jan 2007
Offline Last Active Jul 02 2014 06:08 AM
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#920706 Gene Testing

Posted by nora_n 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)

 

Nora


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

Posted by nora_n 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


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#806300 Desperate!

Posted by nora_n 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

"Abstract
AIM:
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.
METHODS:
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.
RESULTS:
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.
CONCLUSION:
celiac disease can manifest itself after years of negative serological testing.
"
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#798039 Gene Test Interpretation

Posted by nora_n 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.
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#787091 Negative Serology - Disappointed

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

Posted by nora_n 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?
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#769027 Promethius Test Negative?

Posted by nora_n on 28 January 2012 - 11:14 AM

about 2% have other genes! I have also posted on this here on other threads.
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#760649 Anyone Able To Interpret The Genetic Testing

Posted by nora_n 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.
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#760525 Yet Another Doctor's Opinion

Posted by nora_n 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.
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#760482 Could This Be Celiac?

Posted by nora_n on 29 December 2011 - 06:52 AM

Could also be hidradenitis suppurativa, just use the search on the forum. It is definitely gluten related.
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#756651 Should I Eat Gluten Before A Biopsy?

Posted by nora_n 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:
http://npif.no/

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

http://neurotalk.psy...om/forum13.html
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#739643 Seriously? Gluten In The Drywall?

Posted by nora_n 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.
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#737568 Should I Get Diagnosed?

Posted by nora_n 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)
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#733811 Anyone Gluten-Free Before Endoscopy?

Posted by nora_n on 25 September 2011 - 04:00 AM

You know how fast your mouth heals if you happen to bite yourself in the chin?

Same with the gut, so three weeks off gluten can do a lot of healing so that hte damage is not visible in the microscope anymore.

But if they had incubated the sample together with gluten and looked at it, and/or measured ttg in that sample, it would have showed celiac. (I read that Dr. Greene had done that with a patient who had been gluten-free for years but the diagnosis was unsure)
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#733590 Enterolab Results -- Gene Tests

Posted by nora_n on 24 September 2011 - 06:10 AM

There are lots of mentions out there that the false negatives for celiac tests are more like 50%. It says so in The Lancet in an article I read too, not just some obscure website.

Celiac.com also has an article out on that.

Now I have seen some new research that looked at the way they do endoscopies, and the places in the U.S. where they only look at one or two samples have maybe half as many diagnosed with celiac compared to those where they look at four samples.

This explains what happened to my daughter, they took only two samples and only looked an one of them and decided it was negative, despite of abnormal looking small intestine. She quit gluten anyway and got a diagnosis anyway. Dramatic improvement off gluten.
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