Incomplete Testing, Stupid Nurse!

[maximoo]

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!

[Meg123]

how frustrating. Why is it so dam hard to get an accurate diagnosis either way of this this 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]

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]

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. 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]

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]

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. 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.

[kareng]

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

Great minds think alike!

[GlutenFreeManna]

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.

[maximoo]

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]

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!