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Just Cant Help Myself....


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#16 NoGlutenCooties

 
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Posted 16 October 2013 - 09:41 AM

It would be great if you would post a link to the "evidence" research.

 

Colleen

 

This is what I could find at my finger-tips.  I'm sure there's more out there.

 

http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Intolerance-Gluten-Sensitivity.htm

 

 

It's not clear yet whether gluten sensitivity raises your risk for other conditions, including autoimmune conditions — some researchers believe that it does, and others say it does not.
(and of course, Celiac is an autoimmune condition)

http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Sensitivity-Vs-Celiac-Disease.htm

 

Some studies show that some gluten-sensitive people have similar metabolic profiles to diagnosed celiacs, indicating that there might be a pre-celiac condition.

More research will be needed to determine if people with gluten sensitivity really can ingest small amounts of gluten without damage, or if a specific sub-group of gluten-sensitives will eventually go on to develop celiac disease.

http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Intolerance-Research.htm

 

 

Also, keep in mind that a person can have Celiac even if a biopsy comes back negative - the tests aren't particularly accurate.  So while you may think you "only" have a sensitivity, that may not be the case.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


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#17 kareng

 
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Posted 16 October 2013 - 09:45 AM

  But there is evidence that if you continue to eat gluten even though you have a gluten sensivity, it can lead to Celiac. 

 

 

Wow!  Which session at ICDS did you hear that in?  I missed that one.  What I heard, several times is that they aren't really sure there even is such a thing as NCGS.  This isn't meant to discount the fact that some non Celiacs are helped by a gluten-free diet.  They just don't have enough research on this.  Here are a few reasons for NCGS they are kicking around and have some preliminary study findings:

 

1.  Its actually a FODMAP issue.  Because wheat is a high FODMAP food, eliminating it makes them feel better.  When they added gluten back in, but kept total FODMAPs low, people still felt good.

 

2.  Its bad diagnosing - which may be the OP's actual issue.  This would also explain why someone who supposedly tested negative for Celiac would be positive in a few years.

 

3.  It could be a reaction to a different protein in wheat that they haven't really studied yet.

 

4.  Some other thing they haven't found yet.

 

I didn't hear anyone say that NCGS, if it is really not Celiac,  leads to Celiac Disease.

 

 

http://www.ncbi.nlm....pubmed/23934026


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#18 NoGlutenCooties

 
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Posted 16 October 2013 - 09:49 AM

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.

 

http://www.celiaccentral.org/non-celiac-gluten-sensitivity/Family-and-Related-Conditions/777/


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#19 answerseeker

 
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Posted 16 October 2013 - 09:58 AM

Wow! Which session at ICDS did you hear that in? I missed that one. What I heard, several times is that they aren't really sure there even is such a thing as NCGS. This isn't meant to discount the fact that some non Celiacs are helped by a gluten-free diet. They just don't have enough research on this. Here are a few reasons for NCGS they are kicking around and have some preliminary study findings:

1. Its actually a FODMAP issue. Because wheat is a high FODMAP food, eliminating it makes them feel better. When they added gluten back in, but kept total FODMAPs low, people still felt good.

2. Its bad diagnosing - which may be the OP's actual issue. This would also explain why someone who supposedly tested negative for Celiac would be positive in a few years.

3. It could be a reaction to a different protein in wheat that they haven't really studied yet.

4. Some other thing they haven't found yet.

I didn't hear anyone say that NCGS, if it is really not Celiac, leads to Celiac Disease.



That makes a lot of sense. I don't see how NCGS could "lead" to celiac. And if that were the case I would think NCGS would eventually have malabsorption issues which is not the case. I think the bad diagnosing is the best explanation so far on this issue.
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#20 answerseeker

 
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Posted 16 October 2013 - 10:01 AM

I have a friend who tested negative for Celiac, yet several members of her family have it. She gets the stomach pain and several other symptoms after eating gluten. It will be interesting to watch her progression and see if she ends up testing positive
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#21 kareng

 
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Posted 16 October 2013 - 10:10 AM

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.

 

http://www.celiaccentral.org/non-celiac-gluten-sensitivity/Family-and-Related-Conditions/777/

 

 

Looks like we agree.  We can't say that NCGS leads to Celiac.


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#22 kareng

 
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Posted 16 October 2013 - 10:14 AM

Thank you everyone, for the kick up the backside that I needed..... notme! I have been tested several times for celiac by my DR. I was positive, then I wasn't, was, and then finally wasn't!!!  My DR was very blasé about the whole thing to be honest and has now given up with me and put it down to IBS I was never told to continue eating gluten throughout my tests and only learnt this from forums that I joined so the whole process (in my eyes) was pretty hit and miss. I was seen by a specialist before I saw my DR and he said I did not have celiac but I was gluten/wheat intolerant. This was 3 years ago and my symptoms are getting more obvious and with more severe symptoms. I'm an idiot I know..... 

 

 

Can you get copies of all those tests?  If you were gluten free during the time some of these were taken, they would be negative or lower than they would be on a full gluten diet.  I wonder if you actually have Celiac and a bad doctor.  If you are eating gluten free now, you would have to go back on gluten to get tested and find a new doctor.  At this point, you can just continue to eat gluten-free and assume you have Celiac - you did have positive blood work.  Something to think about.

 

the researchers are hoping to find a way to test for Celiac that doesn't require eating gluten at the time or eating it for only a short time.  But they didn't sound like that would happen any time soon. 


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#23 NoGlutenCooties

 
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Posted 16 October 2013 - 04:38 PM

So Celiac is an immune response that causes damage to the villi.  But you can have Celiac but get a false-negative diagnosis because there isn't damage (or enough damage) to the villi... yet.

So you get diagnosed with gluten sensitivity.

But if you actually have undiagnosed Celiac, and you continue to eat gluten, then you are more likely to eventually have enough damage to get a correct diagnosis.

Therefore you have now gone from gluten sensitivity to Celiac.

But if you have gluten sensitivity and you stop eating gluten - you will never develop Celiac.


  • 0

Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#24 kareng

 
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Posted 16 October 2013 - 04:57 PM

So Celiac is an immune response that causes damage to the villi.  But you can have Celiac but get a false-negative diagnosis because there isn't damage (or enough damage) to the villi... yet.
So you get diagnosed with gluten sensitivity.
But if you actually have undiagnosed Celiac, and you continue to eat gluten, then you are more likely to eventually have enough damage to get a correct diagnosis.
Therefore you have now gone from gluten sensitivity to Celiac.
But if you have gluten sensitivity and you stop eating gluten - you will never develop Celiac.

co

 

Mis- diagnosis was in the list I mentioned. And, because 30% of the population has the genes for Celiac, I guess that could figure into the odds. However, we can't ignore the other reasons a person might appear to have NCGS. In their cases, eating gluten won't give them celiac and may not even be the actual " cure".

And in this posters case, a missed diagnosis may be her issue. No need to argue. You are able to read the newest studies presented last month by experts.


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#25 NoGlutenCooties

 
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Posted 17 October 2013 - 04:17 AM

<<  In their cases, eating gluten won't give them celiac and may not even be the actual " cure".>>

 

Absolutely correct.

 

 

<< No need to argue. >>

 

I hope you didn't take my setting the record straight as an argument.  It is important that people who have reason to believe they have gluten sensitivity understand the risks of ignoring it - whether it turns out to be remedied by not eating gluten or not.  I think there is a tendency to sit back and wait for the doctor to tell you what you should do, shouldn't do, etc. - and you really do have to be your own advocate.  Some doctors still don't believe that gluten sensitivity exists.  Many will tell you that you tested negative on a blood test because your number was under 11 - and that's all they tell you.  They don't tell you that if you do have gluten sensitivity/intolerence that the number will go up.  They'll just give you the "positive" blood test results the following year when your number jumps to 18 and now you're starting to do damage to your body.

I had hypoglycemia when I was younger.  I actually had a doctor tell me there was nothing they or I could do - "come back when you have diabetes and we can talk about insulin options"  !!  Good thing I didn't listen to them.  I now do not have either hypoglycemia or diabetes... no thanks to him.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#26 GFinDC

 
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Posted 17 October 2013 - 06:27 AM

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
http://www.celiac.co...ists/Page1.html

Innate immune response in AI diseases
http://www.celiac.co...uals/Page1.html
 


  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#27 NoGlutenCooties

 
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Posted 25 October 2013 - 04:28 AM

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.)


  • 0

Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#28 JNBunnie1

 
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Posted 28 October 2013 - 08:04 PM

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.

 

http://www.celiaccentral.org/non-celiac-gluten-sensitivity/Family-and-Related-Conditions/777/

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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If you're going through hell, keep going. ~Winston Churchill

#29 answerseeker

 
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Posted 28 October 2013 - 08:21 PM

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?
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#30 kareng

 
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Posted 29 October 2013 - 04:19 AM

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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