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

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

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

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

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

  • 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. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748
    4Nic8ion
    Newest Member
    4Nic8ion
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.