Edg First Dx'd Celiac, Now Blood Test To Confirm

[MrsGrampus]

I'm new and just dx'd with celiac via endoscopy n colonoscopy. I have many neurological, connective tissue and autoimmune disorders like Chiari, Syringomyelia, Ehlers Danlos, Lupus, Sjogrens, Mast Cell Activation Disorder with anaphylaxis n tachy, Crohns, Gastritis, Dysautonomias like hyperagrenic POTS n atrial fibrillation more...

The biopsy showed flattening in the lamina propria and crypt regions which indicates celiac. I have been on a gluten free diet since early this year because I took a EPX Quantum Biofeedback test that showed I was sensitive to gluten enzyme 108.

Well the Gi nurse wants me to have celiac bloodwork. Should I get back on gluten to ensure proper dx?

Side note: I am doubled over in pain from back of tongue to anus! My MCAD is very active!

[SMRI]

If you are biopsy positive-you have Celiac...the blood tests would be nice but I don't know with your medical history that I would chance a gluten challenge.  Ask the dr to make sure though.

[cyclinglady]

I agree! Why bother? You have a positive biopsy. No sense making you sicker! But...I am not a doctor, that is certain.

I went for a routine colonoscopy when during my pre-op consult, my GI suspected celiac disease based on anemia. I was shocked! Blood test was positive but I waited 7 weeks for the biopsy. I went gluten crazy as a final farewell to my favorite foods. By the end, I had all the classical intestinal problems and it took , I think, much longer for me to heal.

I would worry about further damage that would creat new or worsening symptoms.

[nvsmom]

If you are staying gluten-free (because of your other health issues and the celiac disease) then I wouldn't bother going back on gluten to test either. I think you might want to try testing anyway though. Sometimes the autoantibodies can stay elevated for months to years after going gluten-free. You might as well test and see if it tells you anything (without the gluten challenge).

Good luck.