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Forum Section For Non-Celiac On The Gluten-Free Diet?


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21 replies to this topic

#16 GottaSki

 
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Posted 18 May 2014 - 06:36 AM

Yes, yes, and yes!

 

That's the main reason that I hate not having a DX is because I have to defend and explain why I need to be so careful. I also hate all the stuff circulating around about gluten free fads and so on, so forth. Because then people perceive that if you don't have a DX, you've jumped on the fad bandwagon.

 

I would give almost anything to have a "real" DX, but I wouldn't do another gluten challenge for a million dollars!  :ph34r:

 

There are a lot of psychological and social issues surrounding having to eat this way without a DX, that's for sure.

 

Exactly why I think Paul's idea has merit. 

 

I don't see it as excluding folks without a celiac card -- I see it as a place where we can talk about these frustrations without giving the entire back story/status.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


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#17 FruitEnthusiast

 
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Posted 18 May 2014 - 04:04 PM

GFinDC, what you say about the site being accepting NCGI members is true. Still I (obviously) feel somewhat like an outsider to some degree just because the site is called celiac.com. I guess I have to get over that. Your idea was intended to be more inclusive of NCGI members and others without a dx, like myself, so I appreciate it.

 

GottaSki, I didn't realize one of your kids was NCGI, so you can really understand my perspective. You make a good point about alerting people about testing in time for a dx. It would be nice to spare others from ending up in the same boat as me.

 

BlessedMommy, thanks for understanding. I wouldn't do a gluten challenge for anything either. I didn't realize how emotional I felt about being a NCGI on a celiac site. I think somehow I'm afraid someone will eventually tap me on the shoulder and say, "you don't really belong here".

 

LauraTX and kareng, thanks for including NCGI in the serious category and affirming my existence here.


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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

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Histamine Intolerant  Apr 2014

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#18 BlessedMommy

 
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Posted 18 May 2014 - 05:40 PM

GottaSki, thanks for giving out good information about getting a DX. That could spare more people from the frustrations of being undiagnosed. 


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~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#19 BlessedMommy

 
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Posted 18 May 2014 - 05:42 PM

And I hope along with you, that the medical community gets onto the idea of doing a petri dish endoscopy some time in the future. It makes logical sense that if you put gluten into a dish with intestinal tissue, that if the person is a celiac, you should see damaged villi on the tissue sample. And in that case, there would be virtually no false negatives or false positives, nor the need to subject oneself to a painful gluten challenge. 


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~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#20 nvsmom

 
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Posted 19 May 2014 - 09:19 AM

I think a section on NCGI would work nicely. They have the same responses to gluten that the celiacs do, just minus the intestinal damage.  They are 100% gluten-free just like the celiacs. I think if we could set it up as a gluten-free NCGI thing it would work.  We would have to make a point that it is not a "gluten-light" board though - it's not for people who are cutting back on gluten for wahtever reason, it would be for people who have cut gluten out of their lives completely.


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#21 BlessedMommy

 
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Posted 19 May 2014 - 09:25 AM

I think that a lot of people on here don't fit neatly into either category. Because medically speaking NCGI only applies to individuals who have ruled out celiac disease as a possibility. 

 

But I think that NCGI people could comfortably fit with people who have to live indefinitely with no confirmed diagnosis (i.e. neither confirming nor ruling out celiac) because the issues that they will live with are much the same.


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~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#22 GottaSki

 
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Posted 19 May 2014 - 10:12 AM

I think a section on NCGI would work nicely. They have the same responses to gluten that the celiacs do, just minus the intestinal damage.  They are 100% gluten-free just like the celiacs. I think if we could set it up as a gluten-free NCGI thing it would work.  We would have to make a point that it is not a "gluten-light" board though - it's not for people who are cutting back on gluten for wahtever reason, it would be for people who have cut gluten out of their lives completely.


I agree with Nicole....I am not suggesting a place for gluten-free trend followers.

Gluten has serious consequences for many without an official celiac card ... Talking about these issues within the topic of NCGS makes sense to me.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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