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

Incomplete Testing, Stupid Nurse!

maximoo

Recommended Posts

maximoo Enthusiast
maximoo
Posted

Hello all: After my teens tested for high antibodies I went to the clinic & requested that I be tested as well. The nurse practitioner had never before ordered a celiac panel & had to look it up. This woman was in her 60's. Anyway her handwriting was so bad I wasn't really sure what she ordered. Well I got the results back & she had ordered one test which showed negative. I called her back & said I need a complete panel not just one test, somehow she felt her intelligence was being insulted b/c she researched it & I was telling her she needed to do more (be more thorough) Well too bad she felt that way Im not there to stroke her ego I'm there to see if I have antibodies. So now I have go to her superiors & if they approve it, she'll order the rest of the panel. On the test my kids took (IgA) they showed negative on the same test she took on me but showed high on the Deamidated Giladin test so its possible I could be positive as well.

Im so P.O'd!

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

Celiac.com Sponsor (A8-M):


Meg123 Explorer
Meg123
Posted

:angry: how frustrating. Why is it so dam hard to get an accurate diagnosis either way of this this :blink: If it's not one annoying thing it's another.

I hope you get it sorted soon.

It's just so annoying than no one knows anything about it, and in fact by being on here WE have to educate them, to make sure we get the most accurate diagnosis as possible. We really do have to be our own advocates don't we.

If you didn't know any better you would have just been done with that much.

maximoo Enthusiast
maximoo
Posted
  • Author

Yes Meg you are right. I've learned almost everything from this forum or from the links the members have posted. I love this site. And of course with any forum you still have to weed out the unnecessary stuff (like trolls, etc) I find for the most part everything is legitimate, informative & educational.

This site ROCKS!

kareng Grand Master
kareng
Posted

Try printing the sheet about what tests are neccessary to show the doctors. I have found that this has helped with our docs. They like to have info from another doc not some stupid patient. :angry: Highlight the exact test names and ask for those by name. "Celiac panel" sometimes has some extra stuff thats not neccesary.

Open Original Shared Link

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Unfortunately your experienence is really common. Many drs don't know enough about celiac and the testing. I am not surprised she reacted that way at all.

You might want to show this to her: Open Original Shared Link

Print it out and highlight the tests that it says you need. Take a copy of that factsheet with you when you have your blood drawn and show it to the nurse drawing the blood to ask if those are the tests you are having.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted
  On 6/15/2011 at 1:03 PM, kareng said:

Try printing the sheet about what tests are neccessary to show the doctors. I have found that this has helped with our docs. They like to have info from another doc not some stupid patient. :angry: Highlight the exact test names and ask for those by name. "Celiac panel" sometimes has some extra stuff thats not neccesary.

Open Original Shared Link

Whoops! We were posting at the same time. Didn't mean to repeat what you said. :D

kareng Grand Master
kareng
Posted
  On 6/15/2011 at 1:08 PM, GlutenFreeManna said:

Whoops! We were posting at the same time. Didn't mean to repeat what you said. :D

Great minds think alike!

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

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted
  On 6/15/2011 at 1:36 PM, kareng said:

Great minds think alike!

Perhaps a better adage would be "immitation is a form of flattery." I'm sure that I have seen you post that link before and that's where I got it. ;)

  • 4 weeks later...
maximoo Enthusiast
maximoo
Posted
  • Author

Update: I finally had my blood drawn ystrdy. Hopefully there are no more screw-ups! I had to go to the head nurse who then had to e-ml the director to override the original nurse's orders. UGH! and of course I had to pay for the additional tests!

If I am negative I think I should get the genetic testing. Does anyone know how much it costs & which lab should I use?

nora-n Rookie
nora-n
Posted

If you were positive on the deamidated gliadin test, you need no more tests, as this is the latest and best test for celiac!!!

The nurse did the right thing in ordering that one!

Archived

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

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


  • Member Statistics

    • Total Members
      129,979
    • Most Online (within 30 mins)
      7,748
    mary lou grolimond olson
    Newest Member
    mary lou grolimond olson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s...
    • cristiana
      Worried about being isolated

      By cristiana · Posted

      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical...
    • Alibu
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Alibu · Posted

      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like...
    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the...
×
×
  • Create New...