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Just Cant Help Myself....

Janey

By Janey
in Coping with Celiac Disease

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GFinDC Veteran
GFinDC
Posted

Hi NoGlutencooties,

 

Here a couple articles on NCGS that might interest you.  They think it is a different immune response than what happens in celiac disease.  They call it the innate immune response.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html
 

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Just saw my GI doctor and she confirmed my analysis.  Celiac can definitely present itself as gluten sensitivity.  It's not even really a case of being misdiagnosed - it's just that there isn't any damage to the villi yet.  The only way to know for sure that it will not further develop into Celiac is to be tested for the genetic marker.  But seeing how approx. 40% of the population have the genetic marker, it is likely that a person who has gluten sensitivity will be one of the people who eventually develop Celiac disease.

(Both the GI doctor and my general doctor independently mentioned the "40%" number.)

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JNBunnie1 Community Regular
JNBunnie1
Posted

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibi

 

This site also mentions that if you do not have the Celiac gene marker, then you cannot get Celiac – but you can still have Gluten Sensitivity.  However, they do not have enough information to know for sure if someone with Gluten Sensitivity and the gene marker will get – or is more likely to get – Celiac.

 

If I have non-celiac gluten sensitivity now, does that mean I would develop celiac disease if I continued to eat gluten?

We really don't have data to answer that. Once we know exactly what triggers non-celiac gluten sensitivity, we'll be able to answer that question. A helpful thing however would be to get tested for the celiac genes: if absent - while you certainly may still be gluten sensitive - you won't stand a chance of becoming celiac.

 

Open Original Shared Link

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibility.

lity.

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answerseeker Enthusiast
answerseeker
Posted

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibi

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibility.

lity.

It's rare I think?

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kareng Grand Master
kareng
Posted

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibi

 

I'm confused. Don't we have a number of people on the board who 'don't' have

the Celiac gene but 'do' have Celiac? I don't think I've ever been told before that

you can be genetically ruled out of the possibility.

lity.

I was at ICDS and the geneticist and the other Celiac experts say that you can't have celiac without the genetic component. There might be a case of it, but likely something went wrong in the diagnosis process. That doesn't mean that people can't have problems with gluten and not be Celiac. There is ongoing research on the possible reasons for that - a few- FODMAPS & a different protein in wheat

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answerseeker Enthusiast
answerseeker
Posted

I read Dr Green's book and I remember it saying you can't have celiac without the gene but then I saw there were some here that did. I wonder how they were diagnosed. If only blood then it could have been something else maybe

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notme Experienced
notme
Posted

i still believe it is all mis-diagnosis.  it is celiac if it is celiac they just told you it was something else because they don't have a test good enough yet.  i didn't have 'pre-celiac' - i had a baby and it turned on the gene -BOOM - celiac.  except every doctor i went to told me it was something else, gave me another pill, pat on the head...  my symptoms didn't change, i just got worse from damage.  for 25 years.   the medical profession must just get a pop quiz on celiac disease in med school, as little as most of them know about it.  even when i was diagnosed they couldn't tell me what to eat or not to eat.  it's not some mysterious medical phenomenon of something developing into something else.  it's sheer ignorance of the disease in the mainstream medical society.  i can't tell you how many people come on here and say that their doctor told them they probably don't have this 'fad disease' and don't bother to test or give them the wrong test.  or mis-interpret their own test!  or tell them to try going gluten free before testing - <that is my personal pet peeve!!  then it's torture for them to go back and eat gluten again, or the test comes back negative.... arghhh!!  my point is, for a very long time very many doctors told me different reasons for the way i felt and none of them put 2 +2 together and got celiac.  it is NOT a new disease, it is just that it's not in their 'repertoire' i guess.  i never heard of it until i is one.  my gi doctor (whom i had the greatest respect for)  told me not to go 'overboard' when i said i was considering cutting out dairy and soy.........  what??  she said they were both gluten free so don't worry.  chalk that up to stupid things doctors say lolz  :P (that's not why i was cutting them out, but she should have known that)

 

ok - rant over.  lolz :)  brought to you courtesy of my personal experience of being misdiagnosed and almost dying of malnutrition... :ph34r:   yay, doctors....

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JNBunnie1 Community Regular
JNBunnie1
Posted

I was at ICDS and the geneticist and the other Celiac experts say that you can't have celiac without the genetic component. There might be a case of it, but likely something went wrong in the diagnosis process. That doesn't mean that people can't have problems with gluten and not be Celiac. There is ongoing research on the possible reasons for that - a few- FODMAPS & a different protein in wheat

Perhaps the understanding of the genes involved has changed since I last looked

into it? I thought it was like the DQ2,4 genes were understood to be Celiac-possible,

and that DQ8 was thought not to be, and then Raven was diagnosed via endoscopy

and has the DQ8 allele.....

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JNBunnie1 Community Regular
JNBunnie1
Posted

You know what, I just looked up her signature and realized I have absolutely

no idea what any of that means. Does anyone have a reference to an article

that states in plain English what the list of genes are that predispose you to

Celiac?

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kareng Grand Master
kareng
Posted

You know what, I just looked up her signature and realized I have absolutely

no idea what any of that means. Does anyone have a reference to an article

that states in plain English what the list of genes are that predispose you to

Celiac?

 

This is an easy explanation

 

Open Original Shared Link

 

 

And DQ8 is a Celiac gene.  But only about 5% -8 % of Celiacs have that.  Depends on the source.

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

As with anything in the medical field, they can always be proven wrong.  But the current understanding is:

 

"a negative gene test indicates that celiac disease cannot develop in that individual. "

 

Source:  Open Original Shared Link

 

But you can absolutely have gluten sensitivity or a wheat allergy (not the same thing) and not have the gene or Celiac.

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