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Deamidated Gliadin Positive, Gene Negative


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#1 Matisse

 
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Posted 27 June 2010 - 10:13 PM

I tested positive for deamidated gliadin IGG 33.9 -- weak positive is 5-9 -- over 9 is positive. All other tests were negative including the gene tests (only know I'm not DQ2 or DQ8 because it was done through LabCorp). Everything I read about the deamidated gliadin test shows high specificity to celiac and very few false positives. With Diagnos-Techs I tested positive for gliadin with saliva test SIgA 25 -- positive is 15 and over. At the time of the Diagnos-Techs test I had been gluten free for just over 4 months. After being gluten free for about 8-1/2 months the deamidated gliadin test was positive at 13.4 (but down from the 33.9), so it says that my gluten free diet is lowering the antibodies.

What I don't get is that I don't have either of the two major genes. From everything I've read the deamidated gliadin antibody test does not pick up non-celiac gluten intolerance.

Lastly, the doctor who tested me for all this is a rheumatologist. He says my calcium deposition arthritis is caused by the gliaden problem. The thing is I don't really feel much better after 10 months of a very strict gluten free diet. I did not have obvious gastro symptoms before going gluten free, but I didn't eat a lot of gluten containing foods at that time -- just my preference.

Any thoughts? I'm particularly interested in the apparent conflict between the gene negative/deamidated gliadin positive results.

Thank you.
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#2 Jestgar

 
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Posted 28 June 2010 - 03:04 AM

The genes they test for have not been shown to cause celiac disease, they only indicate an increased risk. If you are producing antibodies, then you have celiac disease regardless of what genes you carry.
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#3 sb2178

 
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Posted 28 June 2010 - 03:48 AM

Exactly. Almost all of celiacs have certain genes. Note, that's ALMOST. There are between 1-5% depending on which study you look at that do not have the genes. So the genes make it more likely that someone does have it or will develop it but there are also unknown pathways. You're a lucky exception. Someone should study you ;-).
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#4 ravenwoodglass

 
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Posted 28 June 2010 - 04:08 AM

Exactly. Almost all of celiacs have certain genes. Note, that's ALMOST. There are between 1-5% depending on which study you look at that do not have the genes. So the genes make it more likely that someone does have it or will develop it but there are also unknown pathways. You're a lucky exception. Someone should study you ;-).


I am one of those 'lucky' oddballs also. Just be glad you were able to get correctly diagnosed. It did take a very long time for my arthritis to go into remission and I did have to be superstrict including avoiding distilled gluten grains in alcohols and vinegar, which are things most celiacs tolerate.
If your really curious about your genes you could have the gene tests through Enterolab. I didn't use them for diagnosis but did the gene tests after my biopsy and blood diagnosed DD was told she couldn't be celiac because she didn't have DQ2 or DQ8.
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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)

#5 Matisse

 
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Posted 28 June 2010 - 03:28 PM

You're a lucky exception. Someone should study you ;-).
[/quote]

Why do you say am I "lucky" and that someone should study me? I'm curious.
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#6 Matisse

 
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Posted 28 June 2010 - 03:30 PM

[quote name='ravenwoodglass' date='28 June 2010 - 04:08 AM' timestamp='1277726927' post='619931']
Ravenwoodglass,

Were your weakly positive tests blood or stool? Thanks.
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#7 Matisse

 
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Posted 28 June 2010 - 03:33 PM

Sounds like you're all saying to assume I have celiac and that I'm an exception to the gene tests. Is that correct? I keep thinking I may be exception to the deamidated gliadin test. It's accuracy for positive results is somewhere between 96-99%.
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#8 sb2178

 
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Posted 28 June 2010 - 03:54 PM

I was being facetious/silly. But, figuring out the exception to the "rule" is always an interesting way to continue to learn about anything and could contribute to better understanding what the rule is neglecting to cover. So, yes, if anyone were to get the money and volunteers to do some genomics/bloodwork, it could reveal some info. Maybe.

Well, the thing is you clearly have an issue with gluten (see elevated DGP). Without a biopsy, it may or may not include the classic intestinal villi damage. Given that your blood work is still elevated, I'm not surprised that you don't necessarily feel a huge improvement.

I have to admit that joint pain was probably the first symptom that I had, and am personally biased toward believing that joint pain is/can be a result of gluten consumption in sensitive folk. Mine has almost entirely resolved (but I only had it for about a year, so long term damage probably did not occur). The GI issues did resolve first.

The problem is also that you may have stopped creating new deposits, but still have the old ones that cause pain. *assuming gluten causes deposits. Does anyone know if the human body resorbs them or anything else about gluten/arthritis?
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#9 Skylark

 
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Posted 28 June 2010 - 05:03 PM

Sounds like you're all saying to assume I have celiac and that I'm an exception to the gene tests. Is that correct? I keep thinking I may be exception to the deamidated gliadin test. It's accuracy for positive results is somewhere between 96-99%.

The amount of deamidated gliadin peptide antibody falling with your gluten-free diet suggests that you are celiac. If the antibody were happenstance, why would it fall?

Besides, HLA-DQ is absolutely not the full genetic story. These studies have gone after non-HLA genes and found at least three other interesting loci.
http://www.ncbi.nlm....pubmed/20348961
http://www.ncbi.nlm....pubmed/17136122
http://www.ncbi.nlm....pubmed/19622889

sb2178 makes a good point about the joint pain resolving. Even if your body is not making new deposits, there is damage. I haven't chased down gluten/arthritis literature but your rheumatologist seems really up on this stuff. Perhaps he can address how fast and how much you should expect to heal vs. preventing further damage.
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#10 Matisse

 
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Posted 28 June 2010 - 07:49 PM

The amount of deamidated gliadin peptide antibody falling with your gluten-free diet suggests that you are celiac. If the antibody were happenstance, why would it fall?

Besides, HLA-DQ is absolutely not the full genetic story. These studies have gone after non-HLA genes and found at least three other interesting loci.
http://www.ncbi.nlm....pubmed/20348961
http://www.ncbi.nlm....pubmed/17136122
http://www.ncbi.nlm....pubmed/19622889

sb2178 makes a good point about the joint pain resolving. Even if your body is not making new deposits, there is damage. I haven't chased down gluten/arthritis literature but your rheumatologist seems really up on this stuff. Perhaps he can address how fast and how much you should expect to heal vs. preventing further damage.

Yes, it is true that the fact that the antibodies are falling since I've been on a gluten-free diet helps make the case. To that end, I also wonder if I might have non-celiac gluten intolerance except that the deamidated gliadin test is really much more of a celiac test than a non-celiac gluten intolerance test.

My rheumatologist is very aware of celiac and frequently tests his patients. The only thing he said to me about being gene negative is that there's another gene being looked at. When I've done internet searches I haven't really found anyone mentioning that. What I have seen is more genetic specificity within the DQ2 and DQ8 arena. Thank you for the pubmed links. I read them, but don't fully understand the information except that they were looking at specific chromosomes.

As far as still having antibodies, I have thought that perhaps I will need to be close to zero or at zero before I will feel a difference, so that has helped me to hang in with not eating gluten or soy. Most of the arthritis literature talks about a link between celiac and rheumatoid arthritis. I'm pretty sure I don't have that type of arthritis. Don't have swelling and am negative for the test. My husband has rheumatoid arthritis so I know what it looks like.

Thanks for your reply and input.
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#11 Skylark

 
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Posted 29 June 2010 - 01:41 AM

Genetics class was about six years ago and I'm not a geneticist. LOL! Basically, a geneticist first has to identify a fairly large region of chromosome, which is what the studies are doing. They use markers called SNPs (single nucleotide polymorphisms) that have a known location in the genome and are easy to sequence. SNPs do not necessarily belong to a gene. SNPs that segregate with the disease more often than by chance in a family tree are the interesting ones. In the Pubmed studies, the authors identified the region of the HLA genes with a very high score, which is good, but they got statistically significant scores on other regions as well. Once a geneticist has identified a SNP (and therefore a region on the chromosome) that is associated with the disease, he can start to look at individual genes in that region to see what might make sense.

You seem to have a really good handle on what science is known about the celiac tests and genetics. Unfortunately, there is no clear answer other than to drive your anti-DGP levels to zero and see if it helps. There is suggestive research on gliadin peptides and non-GI pathways for autoimmunity involving other transglutaminases besides TG2. One pathway with a neural transglutaminase can cause gluten ataxia, with no gut symptoms at all, negative biopsy, and no anti-tTG or anti-endomysial antibodies. All that shows up in these people are anti-gliadin antibodies. (Can't remember whether anti-DGP was tested.) It is tempting to speculate that something similar could be happening to you.
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#12 ravenwoodglass

 
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Posted 29 June 2010 - 02:26 AM

Ravenwoodglass
Were your weakly positive tests blood or stool? Thanks.


I was never stool tested for gluten because by the time I knew about Enterolab I had been diagnosed celiac for 5 years. My DD and DS both had low positive tests with blood tests and DD with biopsy, that prompted my now ex husband to be blood tested and he was positive also.
I did Enterolab to get gene tests done and to check for reactions to soy and casien. Both of those were positive and soy turned out to be a real problem for me. Soy flares my arthritis really bad so it might be something to consider dropping also if you have arthritis.
My blood tests were always negative but I don't know if they ever checked total IGA. I was just told they were negative and to up my fiber (wheat) intake. I was very, very, very ill by the time a wise allergist thought to check for celiac with an elimination diet and celiac was later confirmed by my GI when his ordered challenge almost killed me.
My gene, DQ9 that I have a double dose of is considered by some doctors in the US to be an RA assciated gene. If I had been gene tested before diagnosis I would likely have been diagnosed with RA. I was taking one med that is given to RA patients, it started with a M I think but I don't remember exactly what it was. I haven't needed meds in a long time now.
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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)

#13 Jestgar

 
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Posted 29 June 2010 - 03:20 AM

Actually, I am a geneticist LOL!! And I do this stuff every day.

Consider celiac disease to be a large genetic puzzle, with the HLA genes to be some of the pieces. Unfortunately, they are the only pieces we know of. Some peoples' puzzle has these genes, and we know they may have/develop celiac disease. Other people may have every piece except these, and we can't identify them as having/being prone to develop celiac disease.

Your puzzle may be blank (because we haven't yet learned how to see those pieces) but you still can have the disease.
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#14 Matisse

 
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Posted 29 June 2010 - 09:35 AM

One pathway with a neural transglutaminase can cause gluten ataxia, with no gut symptoms at all, negative biopsy, and no anti-tTG or anti-endomysial antibodies. All that shows up in these people are anti-gliadin antibodies. (Can't remember whether anti-DGP was tested.) It is tempting to speculate that something similar could be happening to you.


Thank you for your detailed reply on the genetics. Yes, I do plan to continue gluten-free until my anti-DGP levels go to zero and then see how I feel. It's helpful to get confirmation and support from others on that.

As I understand the anti-DGP it is not helpful for the gluten ataxia symptoms. That is one of the criticisms some have of the new anti-DGP test in that it doesn't pick up non-intestinal problems, particularly the ataxia.

I am looking for greater clarity and at this time it doesn't look like I'll find it with the science as it is right now. Perhaps as the genetics of celiac evolve it will answer these questions. In the meantime I'm committed to continuing with the gluten-free and soy free diets and see if it helps me, at least until my antibodies drop.
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#15 Matisse

 
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Posted 29 June 2010 - 09:47 AM

Actually, I am a geneticist LOL!! And I do this stuff every day.

Consider celiac disease to be a large genetic puzzle, with the HLA genes to be some of the pieces. Unfortunately, they are the only pieces we know of. Some peoples' puzzle has these genes, and we know they may have/develop celiac disease. Other people may have every piece except these, and we can't identify them as having/being prone to develop celiac disease.

Your puzzle may be blank (because we haven't yet learned how to see those pieces) but you still can have the disease.


Thanks for your response. Yes, I'm in the unknown zone. I hope I'll have greater clarity as celiac genetics evolve. Interestingly, my brother has rather classic celiac symptoms and has tested negative. Unfortunately his doctor gave him the anti-gliadin test rather than the newer anti-DGP (as well as the tTG IGG). I sent him the information on the anti-DGP and have encouraged him to ask his doctor to order this test. Perhaps we'll find something specific to us, which would point to a genetic anomoly.
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