Dcoughli posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHi - My daughter has had Celiac disease symptoms for 2 years (she is 8). She has a very high transglutaminase level (89) and a normal Endomysial test. Her biopsies came back negative two years ago. I have written the message board about the difference between the EMA and TtG tests. Thanks for the response. Paige has also shown signs of almost reflux type gas, I can't tell if this is related or not to her other stomach symptoms. Recent bloodtests still show the TtG very high but the EMA remains normal. I have to go back to the doctor on Wednesday to discuss results and next steps. We may go in for another biopsy but I think since her EMA is still showing normal we may get negative biopsies again. Protocol with the Cleveland Clinic is a positive biopsy, but my question is at what cost? She is not gaining weight and is slightly off her growth curve now. When do I say enough and get another opinion? I am just about there right now. I plan on pushing the doctor for a gluten challenge regardless of another scope or not. What other signs could there be that may throw our indication one way or another, her IGA's are high but that is not a good indicator. My push to the doctor is that if the TtG test is sooo sensitive isn't it better to start treatment before there is damage to the vili? I fear the doctor is protocol oriented, if so who can you turn to find a good pediatric GI. (I am sure the one I have is a great GI but this has been 2 years now). We are located in Cleveland Ohio.
Dcoughli posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHi - this is my first time writing but I am at wits end in finding an answer. My daughter has been on "watch" for Celiac for 2 years. She is 8 years old and two years ago starting having stomach aches around dinner, she is often in the bathroom, stools are somewhat normal. Her Endomysial test is normal but the Transglut tests was 97 2 years ago, 44 last year and now is 89, all well above normal range. She had a scope 2 years ago that was normal. I am concerned given the non-treatment of this disease that we are waiting for a positive biospsy. She has since had an Impedance Probe test (last week) because she has so much gas in her she feels like she is going to vomit, so we are checking for reflux. I have an appt on Tues to go over the lab and probe results and most likely will have another scope procedure for biopsies. What questions should I be asking? We took the new genetic test to rule her out and could not. She has not changed clothing size for over a year, he is 52 inches and 59 lbs. Any guidance or comments are appreciated.