This has been a long ongoing experience and it looks like it continues. K had blood work done around February for celiac disease. This blood work measures TTG levels and hers were really high which is an indication of celiac. The next step is to have an EGD done. She did this and the pictures that were taken of her intestines were inconclusive, but the biopsy showed no intestinal damage. The doctor recommended we have the blood work done to see if she has the genetic marker for celiac to see if possibly she has the disease but has no permanent damage yet. This was such a chore. She locked herself in the bathroom at the doctor's office for 10-15 minutes and refused to come out. When she finally came out I had to physically take her in a room and she started yelling at the nurses (yes, it took 3 nurses and me). She was telling them they were mean and to get away from her among other things. Anyway, I got the results back and after the headache of that visit and the $500 it cost I found out that the results were inconclusive. So we are back at square one. In 6 months the doctor would like to measure her TTG levels again. Then in 12 months measure the TTG levels again. If both of these are high he would like to perform another EGD.
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