Celiac and MORE Blood Tests

I have been feeling pretty frustrated for a couple of weeks now. After getting the intestinal biopsy done back in April, I was told to, you guessed it, WAIT for the results. After a week, the GI doctor's office said the results of the biopsy were "inconclusive". My original blood test that made the Hepatologists in Utah suspect Celiac were inconclusive which is why they asked for the biopsy. However, the GI doctor requested yet another blood test for himself. So, I went back in with a lab request for the GI doctor as well as a blood panel to check on my kidneys since adding a new medication a few weeks prior to that called Lasix - a second water pill to try to keep the fluid in my abdomen down. Anyway, they took blood and the waiting began... again. 

After a few weeks of no word from anyone, I decided to contact the GI doctor's office and ask if they had my blood results yet. Of course, my local doctor's office who is in contact with the Utah doctor's didn't share the lab results with the GI doctor who requested them. That would have been what was supposed to happen. Sorry for the tone, I'm feeling a little cynical about the whole communication process or lack thereof. So, another week goes by and I asked the University of Utah if they got the lab results back from their request. After playing phone tag with my primary care office here, they finally established that they didn't do the correct labs that the hepatologists requested, so I had to go back in for yet another blood draw and.... waiting.  

In the meantime, feeling overly frustrated, I emailed the doctors in Utah and said I was feeling.. abandoned - putting it bluntly. It's been over 8 weeks since I have been home and still no answer to the PBC question, the Celiac run-around was a mess, and I don't even know if I'm supposed to keep seeing my doctor here or how often. I felt totally left in the dark. Abandoned is a good word. Luckily, right after receiving my email, Dr. Rodriguez called me right away and said he thought that after learning that I had Hep E that he felt like that was the answer to why I was in the hospital but there was still something that had caused the extensive damage to my liver that made the Hep E put me over the edge. Old news to me. He said he was going to try to get all my most recent labs and call me back when he felt like he could give me more answers. 

Here we are, May 18th, and I just got a letter. Yes, snail-mailed letter, confirming that I do indeed have Celiac disease which is an autoimmune disorder. (Like... couldn't you have freaking called me?) So, after 8 weeks we finally have one answer. Running with that, I asked Dr. Google if Celiac can cause liver damage and it indeed can. So... there's that. I read that it can cause "otherwise unexplained elevated liver enzyme levels" which I did have. I'm trying to piece everything together. I feel like we are getting somewhere. If Celiac really is or has been playing a big part in damaging my liver then my hope is that by changing my diet, maybe it will get better? I get that the damage has already been done, but if I get it under control, maybe I won't have to take meds my entire life to prevent encephalopathy. Who knows. Needless to say, I still have a LOT of questions and I am still waiting for a call from Dr. Rodriguez that I hope will happen in the next week or so. 

Until then, I have a lot of research and shopping to do to be able to eat. After just ordering groceries today and trying to find something for dinner... I discovered that I can basically eat fresh fruit and veggies. I started to make a salad and then realized I didn't even have salad dressing I could have. Soooooooo, I made a homemade ranch dressing that actually turned out pretty good, and ate my lettuce and carrot salad. Delicious. Please pray for me. I may starve to death before they figure out what is wrong with me.