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Luna21

“Non-celiac disease”

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Hey, so I am one of those “non-celiac disease” people and it’s quite frustrating. I first had a blood test done ordered by my GP. (It was because I was losing/had lost a lot of weight over the past few visites.) I had kind of a horrible bumpy ride getting to where I am today. I was also referred to a GI to see if I had anything wrong too, because sometimes I remember after eating something like that I wouldn’t feel good & foggy mind but just thought it was in my head. Basically thinking back now I had the classic celiac type symptoms (I didn’t ever tell them my symptoms because I was so use to them I thought them normal) ie. Diarrhea every night, brain fog, loss of apatite, mood swings fatigue etc.
Ok now, back to the GI office. It was cold, I was scared and kinda excited because I don’t know what to expect. I’m this skinny kid and the GI comes in, he stands there, looks at me and smiles. I’m telling you this is a GREAT doctor, love him. So basically we found out that my blood work was “through the roof” I’m assuming it was celiac markers where it’s supposed to be under 15 something and mine was 115 or 515, can’t remember. Well was ever and he says “don’t freak out but I think you have celiac” Eventually I do an endoscopy and it’s negative. He thinks scene I’ve been avoiding gluten my gut has healed but he didn’t know so he said I have “non-celiac-gluten sensitivity” why ever that means. Seriously. I think when I’m older I’m going to do a gluten challenge and have a mother endoscopy done?

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At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with CD based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have them.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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8 hours ago, Scott Adams said:

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with celiac disease based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have them.

Yes, I try to look for the blood test numbers. And I have been gluten-free for a few months now and symptoms are gone. I just really want to know if it’s actually celiac. 

8 hours ago, Scott Adams said:

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with celiac disease based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have the

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