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Why It Helps To Have A Good Doctor...

lob6796

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lob6796 Contributor
lob6796
Posted

So I can eat whatever I want still. No, the biopsy didn't come back negative... it didn't come back at all! My mom and dad drive me up to Portland for the biopsy yesterday. We went early so I could go to Whole Foods beforehand and stock up on some gluten free supplies. That place is huge btw. We all actually had a pretty good time in the store, I think it was a good experience for my parents to see how many gluten free options there are out there. So we head over to the GI place. They're super nice, I check in and a little while later a nurse comes out and gets me. Takes me into a room, we go over my whole medical history in detail, then she sends me to the back where I meet my "prep and recovery" nurse. Change into the oh-so-fashionable johnny, and I wait for her to return. Now at this point my stomach is doing crazy flip flops. For one, I hadn't had anything to eat OR drink since 10pm the night before, and the other was me freaking out that they were putting me to sleep. So when the nurse comes in, I ask if I can do the procedure awake. She laughed and told me no, but she was nice about it at least. Gives me my IV and I sit and wait another 15 mins or so. My tech comes and wheels me into the operating suite. I sit and talk with him in there for seriously at least 20 mins. Then the other tech comes in at that point and gets me all hooked up to the machines, asks me what flavor numbing lollipop I want, and we are good to go. The doctor comes in, says hello to me, sits down with my chart for a second and....

Up he goes. "you have Von Willebrand's Disease?"..."yes"... and out of the room he goes. 20 minutes later he comes back in shaking his head. He informs me that he was just on the phone with my hematologist and that I am not allowed to have the biopsies. ....EXCUSE ME???.... He proceeds to inform me that my physician never called to clear it through my hematologist and of course I can't have biopsies done - they are going to be cutting small chunks out of my intestines and (kicker) I could bleed to death. Super awesome! not. So, what he set up with my hematologist is that they are going to schedule (god I hope next week) for me to go up to her office, sit and have a transfusion of Humate P, then go over to HIS office, have the biopsy done, then go back to HER office the next day and get another transfusion. At $23,000 a pop. Joy. So then the doctor calls my physician's office and gives them hell for not keeping my best interest at hand and you know what they tell him? "We didn't know she had Von Willebrand's Disease" I was stunned when he told me that. I'm like "it is in my chart and I wear a Medic Alert bracelet for crying out loud" he goes "I know, thank god at least you wrote it on your intake form when you came in".

So at least this new doc has a brain in his head. The other people.. who knows. So I get to do it alllllll over again. My poor mother was in the waiting room freaking out because they kept telling her I was still in the surgical suite. She's like "it is a 10 minute procedure!". By the time I got to recovery, I almost fainted from lack of drink/food. It was like 4pm. My surgery time was 2pm. At least they fed me :)

And so continues the saga...

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Michi8 Contributor
Michi8
Posted

Wow! Talk about miscommunication.

Seems to me, given the expense and danger of the biopsy process for you, that a biopsy may not be worth the risks. Is there a reason you must go ahead with biopsy? Did you have positive blood tests? Would you consider dietary response to be proof enough?

Michelle

lob6796 Contributor
lob6796
Posted
  • Author
Wow! Talk about miscommunication.

Seems to me, given the expense and danger of the biopsy process for you, that a biopsy may not be worth the risks. Is there a reason you must go ahead with biopsy? Did you have positive blood tests? Would you consider dietary response to be proof enough?

Michelle

He isn't going in just for the biopsies, although he will be doing them while he is in there. My physician wants to check for any other possible problems as well since I have so many stomach issues. He wants to know what is the celiac, and what is possibly another problem.

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      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
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