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

Trying To Wait Patiently

greenbeanie

Recommended Posts

greenbeanie Enthusiast
greenbeanie
Posted

I got negative results from a partial celiac panel last week, though total IgA wasn't included so I don't know how much to trust the results. Anyhow, I hadn't realized that my doctor also ordered the celiac genetic tests from Prometheus Labs. I only found out because I received a letter from Prometheus about insurance billing. The letter said that the results had been sent to my doctor a full week ago. But I haven't heard anything yet, and this is very unusual because my doctor usually posts lab results online immediately. I contacted her office on Monday to request the results, and I was told that I'd hear back from someone within two business days. But I still haven't heard anything, and I'm going crazy with all the waiting.

 

I know the genetic tests alone are not definitive either way, but I just want all the data I can get right now. The report has been sitting at my doctor's office for a week, and I don't understand why no one will give me the results. It's not like she's waiting for my next appointment - I'm not even scheduled to see her again. 

 

Should I just keep waiting? For how long? Or risk annoying the doctor by inquiring again? I am so, so glad that she ordered the genetic tests (especially since my daughter is also in the process of getting tested, so my genes will surely be of interest to her doctors too). But I've been waiting for decades to figure out what's wrong, and the thought of a relevant piece of info just sitting there on her desk when no one will tell me the results is driving me crazy. I know I have a legal right to my own test results, but marching in and asserting that right seems more likely to alienate the office staff than to help...

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Call again. You know they have the results. Get them to send a copy of the genetic tests and the other tests, if you don't have them. They may be able to email them if the records are eletronic.

Your not annoying the doctor. They may have missed the results or thought they had already called you.

pricklypear1971 Community Regular
pricklypear1971
Posted

They don't understand what they're reading. Betcha $10.

kareng Grand Master
kareng
Posted

They don't understand what they're reading. Betcha $10.

You're probably right!

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

patience is something I need to work on too, but I vote you should call again too  :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,166
    • Most Online (within 30 mins)
      7,748
    melindakathleen
    Newest Member
    melindakathleen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...