Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Frustrated, Just Need To Vent.


dark-angel-warriore

Recommended Posts

dark-angel-warriore Newbie

So I posted about a month ago regarding positive blood work, various symptons, and my fear of going through the endoscopy.

 

SOOO, I got it done last monday (a week and a half ago).

Everything went well, I thought I was asleep, but apparently I just don't remember being awake.

 

Anyways, I had a pleasant experience at the hospital, no complications. Though they sent me home about 10min after I regained concsiouness, without explaining anything to me.

I did not think to ask about how it went.

 

4 days after the Endoscopy, I get a call from the surgeon's office saying that the surgon would like to see me to discuss the procedure that was done, and that they would give me the soonest appointment (today, so less than a week after the phone call).

 

Because I am confused about what the surgeon would want to talk to me about, I called my family doctor (who ordered the endoscopy), to see if she had received the results.

Apparently she received the results last week, just put it in my file without contacting me, and closed it.

So the "nice" secretary told me " it is your reponsability to book an appointment to discuss test results".

It would be nice if I even knew the results were in!!!!!!!!

She said that my doctor "PROBABLY" put the results in the file without saying anything because it did not show anything important.

 

 

We wern't looking for anything "important" we were looking to confirm if it is Celiac.

 

So now they are giving me an appointment in a month, because they need to leave room for emergency appointments.

 

How is anyone supposed to appreciate doctors if they do things like that ?

 

Now I am confused as to why I am even taking time off of work and losing pay to go see the surgeon, and then losing pay AGAIN to go see my general doctor who does not seem that concerned.

 

I have been "gluten free" (My boyfriend forgets and always cooks gluten products along with my gluten free products (on the BBQ, on serving plates, etc...) and I have been feeling worse than I did 2 weeks ago.

 

I know I should just wait until the appointment with the surgeon tonight, since he probably also has the biopsy results himself

 

but I just wanted to say "grrrr"

 

*end rant*


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

This makes some sense to me.  The Family doc would have received the results but not necessarily do anything with them.  He would think that the surgeon/GI doc would explain them to you.  And it sounds like the surgeon has set you up an appointment to discuss this.  After that visit is over, you may just want to cancel the Family doc appt.

 

Even if they told you something right after the procedure, you wouldn't remember it.  Anesthesia does that to you.  He would want to get the pathology results back first before telling you if you have Celiac.  I suppose, if he had seen a tumor or something obvious and dangerous, he would have told the person accompanying you to the procedure.

 

Get copies of the procedure report and the pathology report and blood tests while you are there.

dark-angel-warriore Newbie

This makes some sense to me.  The Family doc would have received the results but not necessarily do anything with them.  He would think that the surgeon/GI doc would explain them to you.  And it sounds like the surgeon has set you up an appointment to discuss this.  After that visit is over, you may just want to cancel the Family doc appt.

 

Even if they told you something right after the procedure, you wouldn't remember it.  Anesthesia does that to you.  He would want to get the pathology results back first before telling you if you have Celiac.  I suppose, if he had seen a tumor or something obvious and dangerous, he would have told the person accompanying you to the procedure.

 

Get copies of the procedure report and the pathology report and blood tests while you are there.

I had written a long text but I will keep it to : I disgaree.

 

The surgeon is NOT a G/I, I have no idea if he will have the results since the test was ordered by my family doctor and not the surgeon itself.

 

Waiting a month and a half to get confirmation of tests results does not seem right to me. If it was a diagnostic test perhaps, but we were doing nothing but confirm, I am not sure what I need to "discuss" with her, if it is not important.

kareng Grand Master

I had written a long text but I will keep it to : I disgaree.

 

The surgeon is NOT a G/I, I have no idea if he will have the results since the test was ordered by my family doctor and not the surgeon itself.

 

Waiting a month and a half to get confirmation of tests results does not seem right to me. If it was a diagnostic test perhaps, but we were doing nothing but confirm, I am not sure what I need to "discuss" with her, if it is not important.

 

 

I'm sorry. I missed something.  The "surgeon" wants to discuss your results 11 days after the procedure? It can take 3-10 days to get the pathology report back.  Not sure why a "surgeon" did an endo but maybe you are in a different country and that is how it works?  Usually, an endo is a diagnostic test used to "officially" diagnose Celiac Disease.

 

Was just trying to help you understand the process because medical procedures can seem silly sometimes.  But I don't feel like fighting with you, so good luck.  I hope eating gluten-free makes you feel better.

notme Experienced

my g.i. did my endoscopy - so i guess she is a g.i. surgeon?  i see you are in canada, so i don't know how that all works with the different doctors.  i got my results pretty quick, (she told me AND made sure she told my husband in case i didn't remember lolz)  and the office called with the pathology results so i requested copies of everything at that time.  

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,390
    • Most Online (within 30 mins)
      7,748

    Ozz lock
    Newest Member
    Ozz lock
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...