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celiac rlated or just really gluten sensitive?


cstark

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cstark Enthusiast

I have been gluten free for about a year now, and have felt great.  We had gone out to eat for my brother's birthday over the weekend, and he chose the place to eat.   I was so very careful about what to eat or not eat while at the restaurant.  The waitress even gave pointers on what would be glutened or cc'd by gluten, and I had followed it to the best of my ability.  However, after about two-three hours I started getting the dreaded brain fog.  Thank goodness it started after my concert.  This lead into a foggy, crabby, and twitchy weekend.  Things finally started to even out by yesterday early evening.

My question for you all is this: Does reactions to gluten come this early if it was NCGS or would be an indicator of Celiac?  I will not be getting the endoscopy due to the extreme nature of my symptoms after even a molecule of gluten exposure.


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cyclinglady Grand Master

Who can say?  We all exhibit different symptoms when glutened (celiac disease or NCGI).  The only way to know for sure is an celiac disease blood test for a definite confirmation.  But we can't do that after every glutening.  And believe me, glutening symptoms can change.    Best to move forward and avoid eating out.  I know that no restaurant food is worth getting sick for me.  Call me paranoid, but it's the truth.  It's how I best function.  I eat out at 100% gluten-free restaurants (exception a sandwich shop who has a celiac disease kid and they have a separate assembly line and are highly trained) only.  My hubby is more adventurous, but my reaction is usually too severe.  If traveling internationally, I am willing to take risks.  In the US?  Not so much.   I do go out, but I usually order a drink and enjoy the company.  

 

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    • trents
      But you haven't yet answered my question about how sensitive to you are to minor amounts of gluten.
    • Healthierbody2026
      @trents my apologies my doctor has been saying that I’m pre-diabetic for years now sorry I didn’t include that information 
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      @Healthierbody2026, as I said above, there is not a separate forum within this community for NCGS people and I do not know of one anywhere else. You sound uncertain whether your physician ordered blood tests for celiac disease or for diabetes. Do you have access online to your medical records and test results?
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      @trents first response: can you direct me to that particular section of this site for NCGS or and are there any groups I can join for people with NCGS? second response: I can’t really remember due to it was some or a few years back but I believe she did blood tests or work on me or I think she did a glucose test on me.
    • trents
      There is not a distinct section in this particular online resource and community devoted to those with NCGS. And I cannot say with any certainty whether or not such a thing exists elsewhere online. But your question makes me think celiac.com might entertain the idea of starting a forum within our community for that purpose. I should explain that celiac.com is divided into a number of separate forums, each devoted to a different topic or concern within the gluten intolerant/gluten sensitive population. Having said that, the main is on those with celiac disease (or their support systems) rather than those with NCGS because it has more serious long-term health implications. I see. Can you elaborate on how you were tested to arrive at this diagnosis?
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