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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. marlene333
      - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    2. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    3. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    4. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,261
    • Most Online (within 30 mins)
      7,748
    Pbaentine
    Newest Member
    Pbaentine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • marlene333
      Bee balm lipbalm not gluten free

      By marlene333 · Posted

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
×
×
  • 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.