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Test results


CMC74

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CMC74 Rookie

Hi, I am just wondering if anyone can tell me what they think of these results. This was done in 2015 and my doctors response by email was  " I got your labs and everything looks great except you are still gluten allergic. Thus I would highly recommend off all gluten as those people who are gluten allergic can actually develop a rare form of small intestine cancer with persistant use. So I would be careful."   

ANTI-ENDOMYSIAL 1:10 HI <1:10  
         
TRANSGLUTAMINASE,IgA,Ab 0.9   <7.0 ELiA U/mL
TRANSGLUTAMINASE,IgG,Ab 0.8   <7.0 ELiA U/mL

 

She tells me to stay off of gluten but then to just be careful.  

Thanks for any input! 


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cyclinglady Grand Master

Welcome to the forum!  

You have a positive on the celiac panel.  Your doctor should have referred you to a Gastroentrologist for further testing.  Celiac disease is not a gluten allergy.  Celiac disease is a autoimmune disorder that is triggered by gluten.  Other autoimmune disorders like thyroiditis, lupus, MS and RA have unknown triggers.  

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If you are still consuming gluten, consider testing.  If you have been gluten free since 2015, read our "Newbie 101" coping section to insure that you are gluten free compliant (plus, great tips).  As for cancer, that is one thing your doctor (and i would get a new one) got right, but cancer is really rare.  

jerrycho Apprentice

ANTI-ENDOMYSIAL is positive?

Hmm why would the doctor stop there and not refer you to a gastro? He/She should...

CMC74 Rookie

Thank you both.  This is the third positive result I have had since 2012.  I did go to a Gastroenterologist in 2012 but it was because she also found HPylori so we were more focused on curing that.  My doctor(s) really haven't been clear enough though and I only realized she thought I had Celiac when I just saw it on my patient chart.  I guess she knows I am terrified of the scope and that is what she says Gastro would recommend so in that case just stay off gluten. I definitely needed more education about it though.  Without having symptoms I have been on and off a gluten-free diet all this time. Now, with a potential Lupus diagnosis also I did more research and found this forum thankfully. I plan to stay gluten-free forever now so I will be reading and asking more questions I'm sure. 

emma6 Enthusiast

oh my! hearing a doctor use the phase gluten allergic is so cringy. you would hope they would know you can't be allergic to gluten and that the test you had wasn't an allergy test. I can't believe he didn't even mention celiac disease to you considering you tested positive for it. you definitely need to find a doctor who is better informed. did they test you for any vitamin deficiencies as well? like iron or b12? good to hear you are going to be completely gluten free now. :)

CMC74 Rookie

Agreed, Emma! I have been tested for many other things but all are fine. I am usually a little low on D3 but ok after remembering to take supplements for a few months. I only realized she thought I had Celiac disease when I saw she added it to my chart on the patient portal. My first test was in 2012, she added that in 2015 but failed to tell me specifically the blood tests are pretty specific and I probably have it  :-(  Hopefully I am not learning all this too late and going gluten-free now at 42 will be enough!  

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    • trents
      @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.
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      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?
    • Healthierbody2026
      @trents not exactly sure my doctor told me I’m NCGS and I need to start a gluten free diet and I believe I can’t consume anything with wheat she diagnosed me a few years back but I thought she said I had celiac but when I had my physical recently back in February of this year to be exact I asked again and she said I had gluten sensitivity or NCGS and not celiac 
    • Healthierbody2026
      @trents one more question is there a site or forum like this site strictly for NCGS people? Or is this the only one just asking out of curiosity.
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