Celiac Gene and NCGS

[ktyler44]

Is it possible to have the celiac gene and be non-celiac gluten sensitive? Or if you are reacting to gluten and carry the gene, does that give an indication of celiac? My son's blood test came back negative, but the doctor wouldn't do an endo biopsy because she said he didn't have celiac. But if he carries the gene and had symptoms, wouldn't that be a red flag? Or could he carry the gene, have symptoms, and still just be NCGS?

[cyclinglady]

On 5/6/2018 at 7:16 AM, ktyler44 said:

Is it possible to have the celiac gene and be non-celiac gluten sensitive? Or if you are reacting to gluten and carry the gene, does that give an indication of celiac? My son's blood test came back negative, but the doctor wouldn't do an endo biopsy because she said he didn't have celiac. But if he carries the gene and had symptoms, wouldn't that be a red flag? Or could he carry the gene, have symptoms, and still just be NCGS?

Yes, he could have the gene and still be NCGS.  But did you know that some celiacs are seronegative?  Did you know that some celiacs never get a positive on the TTG (like me)?  Is he IgA deficient?

Ask for the full panel.  Then consider pushing for the endoscopy because something is wrong.  My niece had a celiac full blood panel and an endoscopy.  Turns out she has Crohn’s that was found by a pill camera.  

I do not know you full situation, but as a mother, we know when are kids are sick.  Push for answers!  Be nice and research like heck!  

[chrissy-b]

My sister has the gene but tested negative for celiac. She was diagnosed as NCGS so it is possible. I'm not sure what you do in that situation as far as testing goes other than to ask them to continue testing for other things as well.