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

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.

  • 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. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten free nuts

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      5

      Related issues

    3. - Midwesteaglesfan replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Going for upper endoscopy today

    4. - Russ H replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Guinness, can you drink it?

    5. - Scott Adams replied to Borky's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Gluten food test strips


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,270
    • Most Online (within 30 mins)
      7,748

    Hope2024
    Newest Member
    Hope2024
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website for a drop location in your area. Each drop location has a local volunteer(?) coordinator who coordinates with the local customers. I go to a drop 4-5 miles from my home that delivers every 2 weeks. We seem to range from 8-18 customers at a given delivery. The downside of the drop is that you have to be there when they say. They give you a few days notice of the precise time, though, and they are punctual. Their pricing relative to other vendors for various products ranges from best price to overpriced, so you have to shop and compare. Quality is mostly good but once in a while you get a dud - however they've been very responsive to giving me a credit on the few occasions when I've complained. In my opinion, they are not as transparent about gluten as they could be. Some products are labeled "gluten free" and so far I trust that. Many products are labeled "Azure Market products are re-packaged by Azure for your convenience in a facility that meets Food Safety Modernization Act (FSMA) standards, including an approved allergen control program." I've corresponded with them over this and they all but say this means gluten free. I've come to trust this, with a little nervousness, but I wish they would be more explicit. They also sell a lot of gluten-containing products. Frankly, I think they are overlooking a business opportunity to become a trusted source for the gluten-free community by not being more clear about gluten. Among Azure products I've purchased are "Walnuts, Baker's Pieces, Raw", "Cashews, Raw, Large White Pieces, Organic" and "Missouri Northern Pecan Grower Pecans Fancy Native, Raw, Halves". The walnuts and cashews were very good and the pecans were fabulous. For almonds, I've been buying Blue Diamond unsalted when they go on sale (mostly from Safeway). The salted ones are probably fine too but the flavored ones I avoid now that I am gluten-free. I also buy products including nuts from CostCo (cashews, shelled pistachios). Their nuts usually contain a "made in a facility that processes wheat" statement, which is scary. I've contacted customer service about various Kirkland products and they will usually give you a response <<for a specific lot>> whether it really was made in a wheat facility (sometimes yes sometimes no). For the "Kirkland Signature Fancy Whole Cashews, Unsalted, 40 oz" and "Kirkland Signature Shelled Pistachios, Roasted & Salted, 1.5 lbs", I got a "safe" answer and I ate them. I got an "unsafe" answer once for "Kirkland Signature Fancy Whole Cashews with Sea Salt, 2.5 lbs" and "Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs" and I don't look at these anymore. Again, these answers were given for specific lots only. They will accept an unopened return for cash if you find out you don't want it. Costco also sells "Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs" that are labeled gluten free. My celiac kid eats them all the time. I pretty much only eat food that I prepare myself from scratch. My celiac symptoms are not that overt, so I can't say for certain I could identify a glutening. However, my antibody levels dropped 25 fold (into normal range) since my dx earlier this year. Hope this helps.
    • Jmartes71
      Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard
    • Midwesteaglesfan
      Back home after the scope.  Dr said as soon as he got in there it was clear signs of celiacs.  Must be a decent amount of damage.  I don’t remember the post procedure conversation as the anesthesia was still wearing off but that’s what my wife says anyway.  Still the biopsy results to come back but pretty definitive and now I get to learn to live gluten free
    • Russ H
      There are several blogs where people test different beers using commercially available gluten testing kits. Guinness definitely tests positive for gluten. Something to be mindful of is that in some regions, foodstuffs containing less than 20 ppm gluten can be sold as 'gluten free'. However, due to the volume involved, a UK pint of beer at 19 ppm would contain more gluten than the generally accepted as safe daily limit of 10 mg. I have seen gluten-free beers testing at between "undetectable" and 5-10 ppm. I have also seen a report of a positive home test on Daura Damm, which is sold as gluten-free beer - the manufacturer did not respond to the tester's query.
    • Scott Adams
      Welcome to the forum! Do you mean this article, and if so, I don't think these are available yet.  
×
×
  • 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.