I’m undergoing blood tests for celiac. I was told it was a “celiac panel” but I didn’t pay attention, so I’m unsure if it is both tests for anti-tissue transglutaminase antibodies (tTGA) and anti-endomysium antibodies (EMA).
At any rate, my CDE/PA told me there are many negative test results for those that have the disease. She recommended a gluten-free diet for 30 days regardless of the test results.Has anyone else had negative blood test results, yet later found out they had celiac? How many people went on to have a biopsy?
I was also told the disease severity can range across a spectrum - with extreme cases at one end and "gluten intolerance syndrome" at the other. I guess, if this is what's causing my symptoms, I will end up in the middle. Are tests reliable for people without "crippling" celiac?
I hear that negative results are common, but I do think that testing is reliable. My son had very few, non-typical symptoms. His weight gain had been poor his whole life and that was about it. After being diagnosed with Diabetes, he still didn’t start to gain weight and was complaining of a stomachache after eating. They ran the test and it came back positive. His Dr. told me that the blood test was about 98% certain, so he didn’t feel he needed to do an endoscopy.
Since going gluten free (6 months) he’s gained about 7 lbs. and has a completely different attitude. More of a happy kid.
He may still have an endoscopy, but we’re waiting another month or so for more bloodwork and letting that make the decision. I have no doubts that his Celiac Disease is true and don’t feel that I want to put him through more tests/procedures unless necessary.
On another note, for the last 2 months, he was showing what seemed like typical Celiac symptoms even though I was sure he wasn’t eating gluten. Dr. told us to try a probiotic, Culturelle. He hasn’t had a problem since starting over a week ago.
