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Genetic Factors And Triggers

NoGlutenCooties

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

 

do you mean negative Celiac gene test? If so, you do not have celiac. That's the exclusionary test.

 

I don't think that's true... aren't there members on here who were negative for the known "Celiac genes" but diagnosed with Celiac via blood tests and biopsies?  My understanding is that not having at least one of the known genes makes you much less likely to get Celiac, but it doesn't guarantee that you cannot get it.

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NoGlutenCooties Contributor
NoGlutenCooties
Posted
  • Author

Actually, Dr. Fasano addressed the genetic component at the gluten-free Conference Saturday in Orlando and he talked about this rather factually.

 

He said the HLA-DQ2 and HLA-DQ8 genes are the only genes associated with celiac.  They are necessary for it, but not determinate.

 

In other words, you may have the genes and never trigger it. But if you do not have DQ2 or DQ8, celiac is excluded.

 

I know there are reports of cases where people have a celiac diagnosis, and do not carry either of these genes, and  I cannot account for the abnormality. I am merely reporting what he said.  He said they  have researched it and this is still the conclusion.

 

Nobody yell at me now. I am just the messenger. 

 

And we all know how doctors are never, ever wrong...  ;)

notme Experienced
notme
Posted

And we all know how doctors are never, ever wrong...  ;)

well,, this guy is the leading scientific medical research doctor concerning celiac.  so, you probably never heard of him :)

notme Experienced
notme
Posted

I don't think that's true... aren't there members on here who were negative for the known "Celiac genes" but diagnosed with Celiac via blood tests and biopsies?  My understanding is that not having at least one of the known genes makes you much less likely to get Celiac, but it doesn't guarantee that you cannot get it.

well, you are understanding incorrectly.  :)  if you have the genes, it doesn't mean you will have it, it just means you have a predisposition.  (that means you *might* get it)  it's a genetic, autoimmune disease.  you don't catch it from a toilet seat at the rest area...........

IrishHeart Veteran
IrishHeart
Posted

I don't think that's true... aren't there members on here who were negative for the known "Celiac genes" but diagnosed with Celiac via blood tests and biopsies?  My understanding is that not having at least one of the known genes makes you much less likely to get Celiac, but it doesn't guarantee that you cannot get it.

It is true. And  I am not sure that any of those people were positive on blood and biopsy. i think it was a diagnosis based on the gene test and their horrid symptoms and their resolution off gluten.  

 

I am just relating what I heard first hand, okay. 

I just saw Dr. Fasano speak last Saturday and he was very clear that the only two genes associated with --not predictive of nor a definitive diagnosis of---celiac are the HLA DQ2 and DQ8.

 

He said because the vast majority of people with those genes never develop celiac, it is not to be used as a diagnosis nor does it mean "this person will develop celiac". It is part of the protocol, that's all.

So if someone is neg on blood biopsy and genetic markers --no celiac. 

As I understood him, he said the data and the science to date--says only those 2 genes.

 

I know there are studies going on in Europe, but he did not say they were conclusive. He did not mention them at all. He did say that tests regarding "NCGS" are invalid. NO proven science. He said that more than once.  

kareng Grand Master
kareng
Posted

I don't think that's true... aren't there members on here who were negative for the known "Celiac genes" but diagnosed with Celiac via blood tests and biopsies?  My understanding is that not having at least one of the known genes makes you much less likely to get Celiac, but it doesn't guarantee that you cannot get it.

 

 

There are also members that say they have Celiac but have no real  medical diagnosis.  We don't check medical records before people come on here.   :o 

 

We just try to repeat what the Celiac researchers are saying now.  Research is on-going so, what is the current info,  may change over the years.  Some of us try to keep informed by reading articles and going to symposiums and that type of thing.  When we hear multiple Celiac researchers from several countries say that you must have certain genes to have Celiac, that is the info we try to impart here.

IrishHeart Veteran
IrishHeart
Posted

And we all know how doctors are never, ever wrong...  ;)

 

I was not talking about doctors in this case. I was relaying the information about genetic  research done for years

by celiac researchers. 

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notme Experienced
notme
Posted

and that doesn't mean that an individual doesn't have a problem with gluten, it just means that they don't have celiac disease.  currently, there is no test for ncgi  :(  

IrishHeart Veteran
IrishHeart
Posted

and that doesn't mean that an individual doesn't have a problem with gluten, it just means that they don't have celiac disease.  currently, there is no test for ncgi   :(

 

No, not yet...but he told us his team is working on it. He said not all celiac specialists believed in this at first, but they are slowly seeing it is a real

medical issue. But not the "everyone has it" that the likes of Wheat belly guy, etc. say it is. His team and Columbia did a study for several years and they put the prevalence of NCGS at more like 15%. 

 

He was very clear about people being cautious about the "frenzy of so-called experts" on the internet and I think we all know he means

anyone who is not a celiac researcher. Chiros, etc. are not experts and their tests are not valid.

 

The more stuff they spout, the more we need to squash it. 

kareng Grand Master
kareng
Posted

And we all know how doctors are never, ever wrong...  ;)

 

 

Then a lot of Celiac researchers in many countries are wrong.  

 

I think we have to go with the current legitimate research.  

kareng Grand Master
kareng
Posted

At ICDS, they were looking at several different reasons for NCGI.  Some may be reacting to a different part of wheat than a Celiac.   Many they have found have FODMAP issues.  Because wheat is a high FODMAP food, eliminating it helps many peoples' digestive issues.  These people aren't really NCGI as they could eat a little wheat - they just have to balance how much FODMAP food is in their guts at the same time.  Some may not have an enzyme or proper bacteria balance to digest the wheat properly.  And on and on....  So there will probably not be 1 answer for all NCGI.

CaliSparrow Collaborator
CaliSparrow
Posted

It is true. And I am not sure that any of those people were positive on blood and biopsy. i think it was a diagnosis based on the gene test and their horrid symptoms and their resolution off gluten.

I am just relating what I heard first hand, okay.

I just saw Dr. Fasano speak last Saturday and he was very clear that the only two genes associated with --not predictive of nor a definitive diagnosis of---celiac are the HLA DQ2 and DQ8.

He said because the vast majority of people with those genes never develop celiac, it is not to be used as a diagnosis nor does it mean "this person will develop celiac". It is part of the protocol, that's all.

So if someone is neg on blood biopsy and genetic markers --no celiac.

As I understood him, he said the data and the science to date--says only those 2 genes.

I know there are studies going on in Europe, but he did not say they were conclusive. He did not mention them at all. He did say that tests regarding "NCGS" are invalid. NO proven science. He said that more than once.

What I'd like to know is if you can RULE OUT Celiac with the gene test. I was interested in having this done but someone said it was more complicated than that and you can't rule it out simply because you don't have the genes.

Also - I read an article where Dr. Fasano said he was beginning to believe that Celiac is moving towards becoming an environmental disease rather than genetic and that it was "epidemic" including the increase in autoimmune disease overall (Open Original Shared Link). Did he say anything like this when you saw him, lucky girl? I wonder, if it's becoming more prevalent among those with a predisposition because of the environment and if this excludes those without the genetic markers?

-------------------------------------------------------

Ami - I have plans on telling the doctors who misdiagnosed me with other conditions that turned up false but am waiting to get healthier so that I have a better handle on what I'm saying and how I'm saying it. I'm woefully bad at communication when I don't feel well and it would be in the spirit of preventing others from going down the road that I did (like you said). There's a lot of misinformation out there even among doctors. A surgeon (not my doctor) told me Celiac isn't an autoimmune disease and that it is so rare it's not even worth giving it another thought (I'm surprised he didn't pat me on the head and give me a lollipop). He's not a GI nor an expert in Celiac. Through it all, I was diagnosed with conditions under whatever specialized roof of whatever kind of doctor I saw. As my hematologist said, "The problem is, you are seeing all these specialists but no one has the full picture". I agreed but he was the one sending me to all the various specialists! Unfortunately, the only doctor I didn't change (at the behest of my hematologist) was my GI because I thought he understood my history starting with the mysterious two-month diarrhea attack after returning from Mexico. My primary didn't test me properly for parasites and so he just assumed she botched it. Even though I had plenty of symptoms throughout my life, at that point, my health snowballed fast for the next seven years. I don't think he knew me from Adam and now he has no record of me (not even a physical file). My hematologist told me he was looking at a case of malpractice but I doubt I'd go down that road. Too gut-wrenching for me.

frieze Community Regular
frieze
Posted

then what accounts for the diagnosis celiacs that are NOT DQ2 or 8?  that is 2-3%....

IrishHeart Veteran
IrishHeart
Posted

What I'd like to know is if you can RULE OUT Celiac with the gene test. I was interested in having this done but someone said it was more complicated than that and you can't rule it out simply because you don't have the genes.

 

yes. That is what he said. It's not more complicated than that. He was pretty firm about it.

 

He said you need three factors--all of them-- to develop celiac. He called it the triad.(and he is not the only one saying this--many celiac centers say this same thing) 

 

(1) genetic predisposition

(2) a trigger of some sort: surgery, trauma to the body, pregnancy, viral or bacterial infection, the overuse of antibiotics that disrupts the gut mucosa, etc.

(3) consumption of gluten

IrishHeart Veteran
IrishHeart
Posted

then what accounts for the diagnosis celiacs that are NOT DQ2 or 8?  that is 2-3%....

 

 

As I said, I have no idea what accounts for that. Where is that percentage published?

Can we send them an email and ask them where that data came from? I'd like to know myself where that was

published. (you know me, I like to read the research :)  )

 

I have only read sources such as this one:

 

Open Original Shared Link

 

and 

 

NFCA

 

HLA-DQ2 and DQ8 genes

About 95% of people with celiac disease have the HLA-DQ2 gene and most of the remaining 5% have the HLA-DQ8 gene. Genetic testing can determine if you have one or both of these genes.

It is important to note that having the gene means you are at risk for developing celiac disease, but does not mean that you definitely have the disease. A positive genetic test should be followed up with a celiac blood panel to determine if you have celiac disease. If your genetic test returns with a negative result, you can virtually rule out celiac disease.

Adalaide Mentor
Adalaide
Posted

yes. That is what he said. It's not more complicated than that. He was pretty firm about it.

 

He said you need three factors--all of them-- to develop celiac. He called it the triad.(and he is not the only one saying this--many celiac centers say this same thing) 

 

(1) genetic predisposition

(2) a trigger of some sort: surgery, trauma to the body, pregnancy, viral or bacterial infection, the overuse of antibiotics that disrupts the gut mucosa, etc.

(3) consumption of gluten

 

While I wasn't with Irish over the weekend, I have watched talks by Dr. Fasano online. I have heard the same from him. I also remember him being firm in this, and saying that without a genetic predisposition it's just NCGI.

NoGlutenCooties Contributor
NoGlutenCooties
Posted
  • Author

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?)

NoGlutenCooties Contributor
NoGlutenCooties
Posted
  • Author

well, you are understanding incorrectly.   :)  if you have the genes, it doesn't mean you will have it, it just means you have a predisposition.  (that means you *might* get it)  it's a genetic, autoimmune disease.  you don't catch it from a toilet seat at the rest area...........

 

Wow... say what??  That's not what I said at all.  I said my understanding is that if you do not have either of the currently known genes, then you can still get Celiac.  I never said having the gene(s) guarantees that you will get Celiac and I certainly never implied you could "catch" it.

NoGlutenCooties Contributor
NoGlutenCooties
Posted
  • Author

yes. That is what he said. It's not more complicated than that. He was pretty firm about it.

 

He said you need three factors--all of them-- to develop celiac. He called it the triad.(and he is not the only one saying this--many celiac centers say this same thing) 

 

(1) genetic predisposition

(2) a trigger of some sort: surgery, trauma to the body, pregnancy, viral or bacterial infection, the overuse of antibiotics that disrupts the gut mucosa, etc.

(3) consumption of gluten

 

Did he explain how very young children can develop it... given that they are not likely to have experienced any of these triggers?

IrishHeart Veteran
IrishHeart
Posted

I'm not questioning the legitimacy of the research per se... 

 

well actually, you are.  I do not know how many more ways to say what the current  research says.

IrishHeart Veteran
IrishHeart
Posted

Did he explain how very young children can develop it... given that they are not likely to have experienced any of these triggers?

How do you know that? Do you know any of these children's medical histories? I did not list all the environmental triggers that may occur. I just gave a few.

 

Why exactly are you taking issue with the facts of celiac disease and how it manifests? I just do not understand. 

IrishHeart Veteran
IrishHeart
Posted

  I said my understanding is that if you do not have either of the currently known genes, then you can still get Celiac.  

 

This is incorrect,  according to every leading celiac research center.

kareng Grand Master
kareng
Posted

Did he explain how very young children can develop it... given that they are not likely to have experienced any of these triggers?

 

 

What kid, outside of a bubble, hasn't gotten exposed to a stomach virus or something that disrupts their system?  Actually,  a bubble kid would have been exposed to things at birth.  So there goes that theory!   :D

 

 

Open Original Shared Link

 

 

And we have gone way off topic here.  If you would like to start a thread and link to the studies you are talking about, we could discuss it there.  Would be interesting to see them.

NoGlutenCooties Contributor
NoGlutenCooties
Posted
  • Author

How do you know that? Do you know any of these children's medical histories? I did not list all the environmental triggers that may occur. I just gave a few.

 

Why exactly are you taking issue with the facts of celiac disease and how it manifests? I just do not understand. 

 

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.

IrishHeart Veteran
IrishHeart
Posted

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.

 

I am neither snarky nor defensive. Anytime I answer honestly and with the facts, you accuse me of this same thing.

 

None of this genetic information is new. It's been published for years.

 

You just keep saying  "it's possible it is wrong because doctors get it wrong all the time."

 

I am providing the information from established celiac centers and you keep saying "But, but,  but...."

 

Not sure what else I can say. 

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