Need Help With Test Results

[poopedout]

I posted quite a long time ago and I decided to have genetic testing by Enterolab. I have not had much help from the medical profession. I saw the GI doc and he refused to do the gene testing and grudgingly agreed to do a ttg IgA but not a total IgA. I have not had that test yet as I had to go back to eating gluten after being gluten free for six months. I have been eating gluten for almost three weeks now and I am worse on gluten but not drastically so.

The results of my gene testing is : HLA-DQB1, Allele 1 0301

HLA-DQB1, Allele 2 0602

The interpretation is that I have two copies of a gene that predisposes to gluten sensitivity but not to celiac. Since I have two copies, I am more predisposed to having gluten sensitivity and it could be more severe.

I am not sure how to interpret this. It looks like eating gluten will not harm me. It will just make me sick, but it will not cause villous atrophy or blunting or whatever. How do I know if I have gluten sensitivity since there is no test for it other than my own subjective and biased interpretation of what happens after I eat gluten?

Does anyone know if I could have celiac with these genes or if they are present in other conditions like microscopic colitis?

Please help me to solve the mystery.

[nora-n]

That is DQ7 and DQ6.

But DQ7 differs from DQ8 by just a tiny tiny bit, and most DQ7 but not all have the 05* alpha chain.

So ou could have half the DQ2,5 gene, the 05* alpha chain.

If you try some other gene testing, they might confirm it. Those that test for alpha chains, mainly the 05* alpha chain.

It is officially a celiac gene but lesser so, and they ahve started to test for it I think about three years ago.

(but not Enterolab, and they get their testing done somewhere else, I think it is still The American Red Cross and they order the beta chains only to keep costs down)

[poopedout]

So if I am just "gluten sensitive" I can keep eating gluten and it will not harm me.

They also mention "immunologic gluten sensitivity" which can be more severe with having two genes. Does that mean that I probably produce anti-ttG antibodies but it will not lead to villous atrophy?

[nora-n]

You might be celiac, or gluten sensitive.

The other gene is DQ6, which is DQ1, and there are even a couple of forums for people like that out there. Many of them are DQ1. Being DQ1 and gluten sensitive is not just gluten sensitivity light, it might be more severe than celiac.

They can react to smaller amounts of gluten than the DQ2 celiacs.

If you google hadjivassiliou, you find numerous articles about neuro issues and gliadin. He found that about 20% of his gluten ataxia patients are DQ1.

In Europe, in some north european contries celaics eat wheat starch which is specially purified but has about 50-100 ppm gluten. DQ2 celiacs toreate this just fine, but not us DQ1. I get DH rashes from that stuff.

[poopedout]

Should my GI take these results seriously? He is the one (also my family doctor) who said I am too old to have celiac disease. I suppose he will say it is "just gluten sensitivity".

[ravenwoodglass]

  On 8/6/2010 at 8:09 PM, poopedout said:

So if I am just "gluten sensitive" I can keep eating gluten and it will not harm me.

They also mention "immunologic gluten sensitivity" which can be more severe with having two genes. Does that mean that I probably produce anti-ttG antibodies but it will not lead to villous atrophy?

No to both questions. Some doctors would call me 'gluten sensitive' since I don't have either DQ2 or DQ8 but as you can tell by my signature the effects gluten had on me were severe.

[nora-n]

Actually, they found that as people get older, more are celiac!

In Finland, they found that about 3% of old people were celiac by screening, and just around 1% of young people.

Open Original Shared Link

[Jestgar]

  Quote

So if I am just "gluten sensitive" I can keep eating gluten and it will not harm me.

They also mention "immunologic gluten sensitivity" which can be more severe with having two genes. Does that mean that I probably produce anti-ttG antibodies but it will not lead to villous atrophy?

There is no known answer to this. Logic would tell you that eating something that makes you feel bad must be doing something bad to you

[poopedout]

Dr. Peter Green says in his book that there are two types of gluten sensitivity. One is patients that improve when gluten is removed from their diet and relapse on re-introduction and the other is patients with positive blood tests for celiac disease but normal intestinal antibodies. I'm not sure what he is calling intestinal antibodies and which are the positive blood tests.

He does not write about any genes for gluten sensitivity in his book that I can find. Is that well known that there are genes for gluten sensitivity?

[ravenwoodglass]

  On 8/7/2010 at 2:29 PM, poopedout said:

He does not write about any genes for gluten sensitivity in his book that I can find. Is that well known that there are genes for gluten sensitivity?

Commonly in the US the genes that are considered to be celiac associated genes are DQ2 or DQ8. Many times none of the other celiac associated genes are even looked for. Gene science is really in it's infancy, IMHO and in other coutries other genes are considered celiac related, like mine, but here some consider them to be 'gluten sensitivity' genes. IMHO they all are celiac associated. Gene testing can not be used to rule out celiac. They can provide a part of the diagnostic process but they are not the be all and end all that some doctors consider them to be.

[nora-n]

They know about many more genes conributing to celiac, and HLA DQ is now only regarded to contribute to celiac risk with 40%.

The greatest risk is still having a sibling or close blood relative with celiac.

[poopedout]

  On 8/7/2010 at 9:03 PM, nora_n said:

They know about many more genes conributing to celiac, and HLA DQ is now only regarded to contribute to celiac risk with 40%.

The greatest risk is still having a sibling or close blood relative with celiac.

So is it only Enterolab who calls these genes gluten sensitivity genes and tests for them?

[Jestgar]

  On 8/7/2010 at 8:09 PM, ravenwoodglass said:

Gene science is really in it's infancy,

The Raven is right. I do 'gene science' for a living and there are very few genes that have been found to directly correlate to a disease state. celiac disease is not among them. You can restate your question as many ways as you want, the bottom line is, there is no absolute answer. You can have none of the studied genes, and still have celiac disease, or you can have both of the studied genes and not have celiac disease. Gluten intolerance is so poorly studied, that any speculation on associated genes is purely just that, speculation.

I know you want answers, but right now, the hard answers you want don't exist.

[poopedout]

  On 8/7/2010 at 11:33 PM, Jestgar said:

The Raven is right. I do 'gene science' for a living and there are very few genes that have been found to directly correlate to a disease state. celiac disease is not among them. You can restate your question as many ways as you want, the bottom line is, there is no absolute answer. You can have none of the studied genes, and still have celiac disease, or you can have both of the studied genes and not have celiac disease. Gluten intolerance is so poorly studied, that any speculation on associated genes is purely just that, speculation.

I know you want answers, but right now, the hard answers you want don't exist.

My question is about the difference between the genes for celiac disease and the genes for gluten sensitivity. I did not know that there were different genes for gluten sensitivity and I have not found anyone else talking about them except on the Enterolab website. Is this just an Enterolab disctinction or is this something that is commonly held to be true?

[Jestgar]

There are no 'genes for celiac disease', or 'genes for gluten sensitivity'. Period. There are genes that are associated with these conditions.

[poopedout]

  On 8/8/2010 at 12:59 AM, Jestgar said:

There are no 'genes for celiac disease', or 'genes for gluten sensitivity'. Period. There are genes that are associated with these conditions.

My problem is that I have received this report stating that each of my children has inherited a gluten sensitivity gene from me. I need to tell my sons about this but I do not know if this is bogus science or if it is real.

[Jestgar]

I don't know the exact wording Elab uses, but there are only genes associated with different responses to gluten. There are no genes defined as causative.

[poopedout]

  On 8/8/2010 at 1:30 AM, Jestgar said:

I don't know the exact wording Elab uses, but there are only genes associated with different responses to gluten. There are no genes defined as causative.

What they say is that I have two copies of a gene that predisposes to gluten sensitivity so that means that each of my children will have one copy of the gene. What I am not sure of is whether there is a gene that predisposes to gluten sensitivity. I cannot find any information about it except on the Enterolab website.

[nora-n]

Aboout what to tell the children:

It is not so simple, or straight-forward.

Well, one must explain it is just about risk.

Not celiac genes, just risk.

As of now, the HLA DQ genes (which only contribute to celiac with about 40% anyway) which are most often found in celaics are HLA DQ2 and HLA DQ8.

DQ2 is 0501 0201 or trans by combining DQ2,2-0202 and 05* alpha which is in DQ7 (0301

DQ8 is 0301 0302

Then, there are half genes, the 05* alpha chain in DQ7

Then, DQ1 which 20% of gluten ataxia patients have.

DQ1 is split into DQ5 and DQ6

And then, there are diagnosed DQ9, especially in Japan where ther are a lot of DQ9 and few DQ2.

So that leaves only DQ4, double DQ4 which have not been found to be celiac or gluten sensitive.

To sum it up, DQ1 is DQ5 and 6

DQ2 is just DQ2 but there are DQ2,5 and DQ2,2

DQ3 is DQ7,8 and 9

then there is DQ4

So what Dr. Fine at Enterolab says, that all these except DQ4 are either celiac or gluten sensitive genes, is right.

In real life, 6% of celiacs test negative for DQ2 or DQ8.

But in these 6%, most have half a gene, meaning they have the the 05* alpha chain or just the 0201 beta chain. A few have DQ6 or DQ9(japan) Those are those who are officially diagnosed celiacs.

Then there is DH, and they do not have to have the DQ2 or DQ8 genes, and gluten ataxia, which can be DQ1....

If you go and google Ford Gluten, there are more, way more issues from gluten than just the small intestine celiac thing.

So if you get better from totally avoiding gluten, it is really better to stay off it.

All celiac testing is only about the shape of small intestine villi and crypt height and stuff.

Not about the antibodies that attack the brain.

Personally, I have gotten hashimotos triggered by gluten antibodies, and DH rash, and negative celiac tests because when I went back on the gluten challenge, they tested me too soon. And I went gluten free one week after the biopsy since I could not feel where my feet were. That is antigliadin attacking my brain.

google hadjivassiliou and read the papers on gluten ataxia.

[Jestgar]

  On 8/8/2010 at 1:55 AM, poopedout said:

What they say is that I have two copies of a gene that predisposes to gluten sensitivity so that means that each of my children will have one copy of the gene. What I am not sure of is whether there is a gene that predisposes to gluten sensitivity. I cannot find any information about it except on the Enterolab website.

Enterolab has found that some genes are more highly associated with gluten sensitivity. I believe they base their definition of gluten sensitivity on the production of antigliadin antibodies produced in the gut and found through stool testing. What they don't have is associated clinical data saying that people who produce these antibodies feel better when they stop eating gluten. What you will find, if you search this board, is that a lot of people got gs results from Elab,stopped eating gluten, and felt better.

You won't find anything about gs genes anywhere else, because no one else studies it. This doesn't mean it's not real, it just means it's hard to study.

So you tell your kids that you have two copies of a gene that's associated with problems eating gluten. They may want to consider cutting gluten out of their diet, if they have current health problems, or being aware that it may be the cause of future health problem. gs is a poorly studied disorder, and you hope that if they do develop health issues from gluten, they will have access to better information than you have.

[poopedout]

  On 8/8/2010 at 9:44 AM, nora_n said:

Aboout what to tell the children:

It is not so simple, or straight-forward.

Well, one must explain it is just about risk.

Not celiac genes, just risk.

As of now, the HLA DQ genes (which only contribute to celiac with about 40% anyway) which are most often found in celaics are HLA DQ2 and HLA DQ8.

DQ2 is 0501 0201 or trans by combining DQ2,2-0202 and 05* alpha which is in DQ7 (0301

DQ8 is 0301 0302

Then, there are half genes, the 05* alpha chain in DQ7

Then, DQ1 which 20% of gluten ataxia patients have.

DQ1 is split into DQ5 and DQ6

And then, there are diagnosed DQ9, especially in Japan where ther are a lot of DQ9 and few DQ2.

So that leaves only DQ4, double DQ4 which have not been found to be celiac or gluten sensitive.

To sum it up, DQ1 is DQ5 and 6

DQ2 is just DQ2 but there are DQ2,5 and DQ2,2

DQ3 is DQ7,8 and 9

then there is DQ4

So what Dr. Fine at Enterolab says, that all these except DQ4 are either celiac or gluten sensitive genes, is right.

In real life, 6% of celiacs test negative for DQ2 or DQ8.

But in these 6%, most have half a gene, meaning they have the the 05* alpha chain or just the 0201 beta chain. A few have DQ6 or DQ9(japan) Those are those who are officially diagnosed celiacs.

Then there is DH, and they do not have to have the DQ2 or DQ8 genes, and gluten ataxia, which can be DQ1....

If you go and google Ford Gluten, there are more, way more issues from gluten than just the small intestine celiac thing.

So if you get better from totally avoiding gluten, it is really better to stay off it.

All celiac testing is only about the shape of small intestine villi and crypt height and stuff.

Not about the antibodies that attack the brain.

Personally, I have gotten hashimotos triggered by gluten antibodies, and DH rash, and negative celiac tests because when I went back on the gluten challenge, they tested me too soon. And I went gluten free one week after the biopsy since I could not feel where my feet were. That is antigliadin attacking my brain.

google hadjivassiliou and read the papers on gluten ataxia.

Thanks for the great answer. That was just the kind of information I was looking for. I don't have any ataxia, but my husband might say my brain is missing something. I seem to have the genes that are commonly found in people with microscopic colitis. My symptoms fit that and microscopic colitis responds to a gluten free diet.

[poopedout]

  On 8/8/2010 at 12:20 PM, Jestgar said:

Enterolab has found that some genes are more highly associated with gluten sensitivity. I believe they base their definition of gluten sensitivity on the production of antigliadin antibodies produced in the gut and found through stool testing. What they don't have is associated clinical data saying that people who produce these antibodies feel better when they stop eating gluten. What you will find, if you search this board, is that a lot of people got gs results from Elab,stopped eating gluten, and felt better.

You won't find anything about gs genes anywhere else, because no one else studies it. This doesn't mean it's not real, it just means it's hard to study.

So you tell your kids that you have two copies of a gene that's associated with problems eating gluten. They may want to consider cutting gluten out of their diet, if they have current health problems, or being aware that it may be the cause of future health problem. gs is a poorly studied disorder, and you hope that if they do develop health issues from gluten, they will have access to better information than you have.

Thank you for the reply. You have answered my questions about the gluten sensitivity genes and now I know why I can't find information about them except from Enterolab. I did stop eating gluten before I knew anything about Enterolab and I was better but still had diarrhea. I am only back on gluten because I am having a tTG Iga test soon and I want to give it my best shot. I now have lots of evidence that going gluten free again is my best option.

[nora-n]

Actually, a few experts have banded together and formed some loose association or whatever on the topic of gluten sensitivity.

I think it is this site:

Open Original Shared Link

Open Original Shared Link

and some doctors have their own websites, like Dr. Ford, Dr. Lewey,

and some others have other websites: Open Original Shared Link

and there should be some more too.

Reminds me, I should make a list and put them in my google bookmarks.