Genetic Factors And Triggers

[kareng]

I'm not questioning the legitimacy of the research per se... I just don't trust anyone (especially within the medical profession) who tries to say that something is an absolute.  Like if you don't have one of these two genes then you cannot under any circumstances have Celiac.  They haven't identified every gene yet and there is a lot that they don't know about Celiac.  Add that to the fact that there are people out there that have an official dianosis (albeit also from a doctor) plus a relief from symptoms with a gluten free diet.

I just wouldn't feel comfortable telling someone that if they tested negative for either of the known Celiac genes that they definitely do not have Celiac.

(Who are we to say that they won't discover a non-genetic form of Celiac?)

 

 

You aren't telling them they don't have Celiac - the Celiac specialists are.

 

However, like I just commented to you on another thread - this is getting off topic (tho less so on this thread).  You should make a new topic and you can share the info you have about gene studies on Celiac.  Some of them are a bit difficult to read, but I did hear a Celiac genetist discuss her research, so maybe we can figure them out.  I know a geneticist, too, we could maybe run them by for a simpler explanation.

[kareng]

No need to get snarky and defensive... I was simply asking a question. Did he address this or not? Simple question.

This is new research results which contradicts previous understanding... I'm simply curious and wanting to know more about it.

Actually, when I heard Dr. G & Dr. F and a few others - I know at least 2 mentioned a trigger. It mentions it on Univ of Chicago's site, too. That isn't really new nor is the gene thing.

[bartfull]

Hi all!

 

I don't want to get into the middle of a disagreement, but I will say that I read here on this site, that not everyone who tests positive for celiac tests positive for the genes. I know I have read it from several different posters over the years. I looked it up and the first one I found was from back in 2011.

 

https://www.celiac.com/forums/topic/80700-positive-bloods-but-negative-gene-test/

 

You'll notice in the sixth post, there is a quote from Dr. F. made in 2009 in which he says ALMOST 100% of people with celiac have a gene for celiac. Now, that was a long time ago and the research may now show that EVERYBODY with celiac has one or more of the genes, but I DO understand why some folks question that since there have been so many posts right here (including this one that quotes Dr. F.) on our favorite website that say otherwise.

 

I guess the moral of the story is, we are still learning every day and what research shows to be true today may be disproven by the research of tomorrow.

 

And we shouldn't be getting mad at each other over it. (I haven't been glutened in a long time and my grouchiness is in remission. It has been replaced by a "group hug" condition.)

 

Love you guys. All of you.

[bartfull]

And here's a recent thread where people had a DIFFERENT gene.

 

https://www.celiac.com/forums/topic/106735-hla-dq28-negative-ttga-strong-positive-where-to-now/#entry908882

 

(I think I'm posting these in a way to defend myself because I have told people, based on what I have read here, that some folks who DON'T have the gene(s) go on to develop celiac. I HATE it when it turns out I've been giving inaccurate info!)

[IrishHeart]

Barty, I love you honey. And that is beside the point. 

 

The quote posted  inside that old thread does not show Dr.Fasano saying anything different back then than what i heard him say just 4 days ago.  I am telling you all exactly what this man said--a leading celiac specialist ,,,.and when there is new info, we can discuss that at some point.

 

The people who have a "celiac diagnosis" and do not possess the HLA DQ2 or DQ8 gene.. well, I honestly have no clue why they are diagnosed celiacs BASED ON WHAT this man, and every single celiac center says.

Perhaps their doctors gave them a DX based on symptoms resolution? . 

 

I do not wish to debate this topic further. I gave the answer to the original poster,

 

You all should be aware that the ORIGINAL  thread was split to start a new topic,The whole thing

is completely disjointed and I am repeating myself over and over.

 

Here is what the CURRENT information says:

 

"There is a blood test available to determine 

whether or not an at-risk individual carries 

the genes responsible for the development 

of celiac disease. These genes are located 

on the HLA-class II complex and are called 

DQ2 and DQ8. Each case of celiac disease 

has been found to show these so-called 

“haplotypes”; therefore, a negative gene 

test indicates that celiac disease cannot 

develop in that individual

 

There are two main reasons for using 

the genetic test when evaluating an 

individual for celiac disease. The first case 

is to “rule out” celiac disease, which is a 

medical term that indicates an individual 

does not possess a necessary risk factor 

for the development of celiac disease, 

genetic predisposition. Without this factor, 

it is impossible that the individual with 

a negative gene test will develop celiac 

disease in the future."

 

 

 

Open Original Shared Link

 

 

 

I have spent all afternoon talking about this topic on several threads and frankly, I am tired of repeating myself.

I have no cause to lie or misrepresent any information. 

 

Peace out. 

 

ADDING:

There are 2% of people who do not have the DQ2 or DQ8 gene, as freize points out--but I have not seen what gene they say it is--and they do not know why they have celiac. It is possible the enteropathy is caused by something OTHER than celiac, too. ? I don't know. i was just trying to give some info from the man.

[kareng]

You know.... A lot of people say a lot of things on here. When it comes to medical/ scientific info, I'll let Fasano & company be the ones I believe.

It is possible someone has a poorly done genetic test? I don't have any stats or links for that. I have heard that some places may do a better job of reading genetic tests than others. That was from a MD specializing in genetics. As the process becomes more automated that should not be an issue.

Will they ever discover another gene? Who knows? We just have to go with what we know now. You can choose to believe the Celiac experts or not.

[bartfull]

Irish, I'm not trying to argue with you. Honestly.  I'm just pointing out why some folks believed one could have celiac without the genes - because we read it here. Now we know better. But any newbies (or even "oldbies" like myself) could click on many threads and get the wrong idea. That second thread I posted was only a month old and in it, even one of the mods said it was possible.

 

I guess I was just trying to smooth things out on this thread because it looked like it was getting a bit heated. Someone had the wrong info, but they got it here so they believed it.  Some other folks had the latest, most up-to-date info that refutes previous info from this site. Personally, I feel like I learn something new every day here and I'm grateful that you and some of the other long-time members continue to educate us all.

[GottaSki]

 

And here's a recent thread where people had a DIFFERENT gene.

 

https://www.celiac.com/forums/topic/106735-hla-dq28-negative-ttga-strong-positive-where-to-now/#entry908882

 

(I think I'm posting these in a way to defend myself because I have told people, based on what I have read here, that some folks who DON'T have the gene(s) go on to develop celiac. I HATE it when it turns out I've been giving inaccurate info!)

 

 

 

That mod - me - was incorrect based on the information that Irish has posted repeatedly today.

 

I still believed that 3 and 9 were thought to be associated with NCGS based on an older study that my genetic data was used in...I need to go back and read that study and brush up on the gene issue.

 

Between what I had read and folks I have known on this forum -- it would seem my knowledge of genes is not perfect.

 

As for Celiac Disease - I will take the word of Dr. F on this one.

 

Edited to correct quote...hope that is clear guys...in a bit of pain and likely won't be posting again this evening.

[nvsmom]

I was wondering if anyone has the link for Dr F's research that shows DQ2 and DQ8 are the only possible genes linked to celiac disease? There is other (conflicting) info out there, so I would not trust one man, Dr Fasano, to have it 100% right. KWIM?  Think of Ancel Keys who was the "leading expert" who created the low fat higher carb craze to treat heart disease, which resulted in the higher rates of heart disease and diabetes we now have....I know it's an extreme example but I wanted to make the point why I don't trust research that isn't backed up by years of testing from other sources, and right now I'm seeing conflicting information. 

 

This small abstract was on the first page of my google search and it states: "....Our data further indicate that DQ9 is a susceptibility factor for celiac disease."  Open Original Shared Link  

 

This article from the Oxford Journal of Internal Immunology basically says the same thing: Open Original Shared Link ... I needed caffeine to stay focused on this one.  LOL

 

Plus I tend to believe those who posted they have negative genetic tests even though they had positive celiac disease tests, especially the log-time posters. I believe one of them was more positively diagnosed than I am (I skipped the biopsy). I just can't see why one would lie about that. Plus there are those who come here asking about it - they had positive serum tests but negative genetic tests. Ancedotal eveidence I know, but it's still there.

 

The blanket statement "if you don't have the positive DQ2 or DQ8 gene then you don't have celiac disease" seems wrong to me. I think a better way to state it might be: "According to Dr Fasano, if you don't have the positive DQ2 or DQ8 gene then you don't have celiac disease".

 

Just saying.

[kareng]

I was wondering if anyone has the link for Dr F's research that shows DQ2 and DQ8 are the only possible genes linked to celiac disease? There is other (conflicting) info out there, so I would not trust one man, Dr Fasano, to have it 100% right. KWIM?  Think of Ancel Keys who was the "leading expert" who created the low fat higher carb craze to treat heart disease, which resulted in the higher rates of heart disease and diabetes we now have....I know it's an extreme example but I wanted to make the point why I don't trust research that isn't backed up by years of testing from other sources, and right now I'm seeing conflicting information. 

 

This small abstract was on the first page of my google search and it states: "....Our data further indicate that DQ9 is a susceptibility factor for celiac disease."  Open Original Shared Link  

 

This article from the Oxford Journal of Internal Immunology basically says the same thing: Open Original Shared Link ... I needed caffeine to stay focused on this one.  LOL

 

Plus I tend to believe those who posted they have negative genetic tests even though they had positive celiac disease tests, especially the log-time posters. I believe one of them was more positively diagnosed than I am (I skipped the biopsy). I just can't see why one would lie about that. Plus there are those who come here asking about it - they had positive serum tests but negative genetic tests. Ancedotal eveidence I know, but it's still there.

 

The blanket statement "if you don't have the positive DQ2 or DQ8 gene then you don't have celiac disease" seems wrong to me. I think a better way to state it might be: "According to Dr Fasano, if you don't have the positive DQ2 or DQ8 gene then you don't have celiac disease".

 

Just saying.

Different doctor/ research center:

Open Original Shared Link

[nvsmom]

Different doctor/ research center:

Open Original Shared Link

 

Thanks.  I've read that one before... but which is right?  All the sources are good. Can we know which one is correct right now without taking a leap of faith? KWIM?

[kareng]

Thanks.  I've read that one before... but which is right?  All the sources are good. Can we know which one is correct right now without taking a leap of faith? KWIM?

I'm sorry? I'm not understanding or missing something.

It says the same thing dr. Fassano was saying. And the same thing several other doctors said at ICDS but I don't have that in writing on the Internet to show you.

[nvsmom]

I'm sorry? I'm not understanding or missing something.

It says the same thing dr. Fassano was saying. And the same thing several other doctors said at ICDS but I don't have that in writing on the Internet to show you.

 

That's too bad. I was hoping to see Dr Fasano's research or paper on this topic. I'm curious as to why he discounts the DQ9... I'd like to know his reasoning. I don't feel comfortable trusting this (DQ2 and 8 being the only celiac disease linked genes) without knowing more. Otherwise, to me it feels like an act of faith to assume he is definitely correct and all others are wrong. This is just my own personal feelings about this matter though, and I'm not much for putting faith into things easily.

[kareng]

That's too bad. I was hoping to see Dr Fasano's research or paper on this topic. I'm curious as to why he discounts the DQ9... I'd like to know his reasoning. I don't feel comfortable trusting this (DQ2 and 8 being the only celiac disease linked genes) without knowing more. Otherwise, to me it feels like an act of faith to assume he is definitely correct and all others are wrong. This is just my own personal feelings about this matter though, and I'm not much for putting faith into things easily.

I did hear a MD in genetics talk about this research. It is very hard to understand. That is why websites like the U of C condense it down, interpret it and make it easy to understand. A reputable medical research center doesn't just make this stuff up as you are implying.

[nvsmom]

A reputable medical research center doesn't just make this stuff up as you are implying.

 

I do not believe I implied that they were making it up.  I meant to imply that they could be wrong even though Fasano may fully believe that he is correct.  Mistakes happen. It could be Fasano making an error or it could be the other side. A summary is not enough for me on this to discount the opposing research. Fasano may be right, but I also see evidence that he could be wrong. 

 

I took genetics in university. I know a LOT has changed since then but I would still like to hear more first hand proof before I accept a second hand summary, which conflicts with other research, as fact.  

 

I respectively disagree that I have enough information in order for me to feel comfortable stating that celiacs must have the DQ2 and/or DQ8 genes.... Of course I may change my mind if or when I find the information to support that.  I'm stubborn, but I can change my thinking.  

[IrishHeart]

You could read his new book. It's in there. he says he cannot account for the rare ones. Not sure anyone can.

Read Dr. Green's Book. It's in there, too.

Read the paper from the World Gastroenterology meeting. It's there, too

 

Open Original Shared Link

 

Read every REPUTABLE celiac site. They all say the same thing.

 

When you say "I cannot believe this one man",  that's your right, of course, but we are saying it's not just this one man saying something out of thin air. It's based on years of research. Well-established. He's the leading celiac researcher in the world. He has no cause to mislead people. And neither do I.

 

Here is just one of hundreds of peer-reviewed papers this world-renowned doctor has written or collaborated on in over 20+ years. Pub Med is full of them.

 

Open Original Shared Link

 

I thought I was sharing with my fellow celiacs something helpful, but all day long, I have had to defend what I said. It was part of a key note speech where he detailed the evolution of what we know about celiac today. 

 

yes, the Europeans are looking at what other genes might be involved, but until it is proven, this is the current science.I hope they figure it out soon. There is that 2% of "unknowns".

 

Everyone can do what they wish with the information.

[kareng]

I do not believe I implied that they were making it up.  I meant to imply that they could be wrong even though Fasano may fully believe that he is correct.  Mistakes happen. It could be Fasano making an error or it could be the other side. A summary is not enough for me on this to discount the opposing research. Fasano may be right, but I also see evidence that he could be wrong. 

 

I took genetics in university. I know a LOT has changed since then but I would still like to hear more first hand proof before I accept a second hand summary, which conflicts with other research, as fact.  

 

I respectively disagree that I have enough information in order for me to feel comfortable stating that celiacs must have the DQ2 and/or DQ8 genes.... Of course I may change my mind if or when I find the information to support that.  I'm stubborn, but I can change my thinking.  

 

 

I am sure all the Celiac researchers may change their minds, too when they see some evidence of another gene.  But until then, I have to go with science and the experts and the current, researched knowledge when posting on this site.

 

There is lots of research out there about the Celiac genes.  You can certainly read some of it if you wish. Or not read it.  "Believe" the scientists.  Or not.  Thankfully, there is lots of new research going on right now for Celiac disease.  However, some of it may disprove a theory.  Some of it is just at the beginning stages and needs much more in depth study.  I will still tell people that the best places to get  reliable medical info is from these researchers & medical centers.  I see no reason why they won't update their information as new knowledge is gathered and proven.   They have done that in the past.

[GottaSki]

Good Morning Barty!

 

I'm in a lot less pain and the head has cleared...I really don't want to talk genes today.  

 

Instead...I'd like to address this notion that we have to give perfect advice to those people visiting us for the first time or even the thousandth time.  This is a online community of folks that have in one way or another had their life altered by gluten enough that they care to stick around and help others through a terribly flawed testing and gluten removal process.

 

No one should ever take something said in an online forum at face value without researching themselves (published journals, not blogs) and seek the best-doctor-they-can-find's opinion.

 

If any of us are going to have their former posts brought up as sources...no one will want to post their thoughts on any subject here...we do the best we can with the knowledge each of us brings to the table. That is all any of us should be expected to do.

[GottaSki]

As a moderator, my advice may be weighted more heavily than another member and should not.  We are simply volunteers, not medical professionals.

 

I am temporarily suspending this discussion while the other moderators consider my suggestion to call this thread done....this is something a mod can do that other members cannot.