Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Why It Helps To Have A Good Doctor...

lob6796

Recommended Posts

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,426
    • Most Online (within 30 mins)
      7,748
    AnythingForHim
    Newest Member
    AnythingForHim
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Click on the image to make it larger.  Maybe doesn't work on phone browser,  That was from 2021. Absolutely, they should be tested, The point is you have symptoms that the doctors don't understand and malabsorption may be the cause.   Not trying to.  But much of your rant includes refeferences that may indicate multiple nutritional deficiencies.     Some countries also have tax incentives and financial aid for Celiacs.   Celiac disease is recognized as a disability under the ADA because it substantially limits major life activities like eating and digestive function. Protections require reasonable accommodations in public accommodations, including schools (504 plans), colleges, and hospitals. These often include providing safe, gluten-free food, though they do not force restaurants to provide it.  As far as your recovery, eat gluten free.  Get healthier now and worry about diagnosis later.  Many here on the forum have gone ten or more years looking for a diagnosis, with many doctors and many misdiagnosis along the way. It really doesn't matter why, but you cannot eat  gluten.  That is what is important.  With gluten out of the way, maybe the doctors can make sense of your remaining symptoms.  If you need the ADA, then a medical diagnosis is the way to go.  Meantime you are delaying your recovery from whichever celiac disease or NCGS and the inevitable step one of Gluten Free Diet. tWe come to share experiences and maybe it will help someone. In reality, I don't care.  By the way I have stopped 6 medications Against Medical Advice because they did not do their job and the side effects were crippling. This is a lifelong fight for your life.  Pick you battles carefully.  Assume the worst, celiac disease, and deal with it.  Denial is not just a river in Egypt. Pleased to meet you, too.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I can't read any of this... the print is too small and it looks like all you eat is milk, cereal cookies and some fruit..?   and some coffee?   
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      fortunately you don't need to understand anything that doesn't directly affect you.  🤗 you earlier assumed I was deficient in nutrients and minerals due to celiac malabsorption but...... now it doesn't matter? because why? it might mess up your deficiency argument?  if you don't know the difference between having actual celiac disease and NCGS....!!!! correct me if I'm wrong but actual celiac disease causes actual physical damage to your body and increases your risk of certain cancers... just as a start. I have an identical twin sister- IF I have celiac disease, chances are she may too. I have a daughter and other first degree relatives... you also get ADA protections with an actual celiac diagnosis.  but again, not your decision to make  nor to understand. but to suggest that there is no valid reason to find out for sure is incomprehensible on a board dedicated to celiac disease. if you ask me but you didn't so- nevermind.   don't worry though, another member has declared that in her expert opinion based on who knows what- that I don't have celiac!!!  but instead I am "full of beans" and probably killing myself for eating such scary things, I don't know.   if you think you can diagnose me off one single biomarker and a hunch of some sort...based on your history and some research study that you think is relevant- um, well, Glad to meet you, Dr McCoy aka Bones. 🫠 I did not know this was a place where strangers want to play doctor  I am hoping to hear from other members who are not so quick to make judgements and... stuff, let's just leave it at that... perhaps there aren't any.  time will tell I guess                    
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.