How Do You Find A Doctor With The Right Tests!?

[taynichaf]

I saw one specifically for a full celiac panel... He tested like two things out of the whole panel I requested. They were negative, but I'm not convinced. I just went to a different doctor to get the test and I'm not sure what she tested.. But I asked if it would be the FULL celiac panel, including the the one that starts with D(I had it written down) and she never gave me a yes or no answer... She went on and said that the blood tests don't diagnose it, the biopsy would. She made it seem like I would get an endoscopy if the tests were negative, so I am happy about that.. But really... How hard is it to do a FULL celiac panel!?!? Testing only a few things leads me to not believing those tests..

[Deaminated Marcus]

Hi taynichaf,

 

It's me again.

In your city is it the doctor office that draws the blood and sends it to the lab?
Where I am, the doctor gives us a paper requisition and we can go to any lab we want to.
How does it work for you?

Excuse my English but that doctor is a moron.
There are several causes for damaged villi.
The point of doing the Celiac panel is to screen for Celiac and to confirm
that the flattened villi is caused by Celiac and not some other cause.


So these are the tests I did on my Celiac panel.

Total IgA
Transglutaminase IgA tTG-IgA
Deaminated Gliadin IgA DGP-IgA
Deaminated Gliadin IgG DGP-IgG



Other tests are (if available)

Transglutaminase IgG tTG-IgG

Gliadin Antibody IgA AGA-IgA
Gliadin Antibody IgG AGA-IgG


It was a while back that I had talked to my doctor as I was procastinating to get back on the gluten wagon.
I think he suggested the AGA or the tTG.

But from having read Celiac library books I knew there was more to it.



So to answer your question: I did it backwards from you.

I made a list of the tests based on what I had read in books and on the internet.

Then I looked up the 3 blood test lab companies in my city.

I searched their web site using the key word: Celiac and Celiac panel.
You may have to search for their individual test names.

For example Blood lab ABC only had one 2 test panel and were expensive.

The blood lab XYZ had 3 Celiac panels and other individual tests.

 

I also spoke to the hospital lab but they only did the tTG test.

 

I made a list of their panels and individual tests that were not on the panel.
I included their test codes when possible.
I called them and the lady on the phone sounded confused about the prices.
So I when I was in that area of their head office, I stopped by with my printouts and asked them for the prices for the tests.
One of their panels no longer existed but was still on their web site.
So that is why you have to phone them to make sure the test panel still exists and get the test code.

I wondered which of the 2 panels to do so I read on this web site
and saw I might as well do the big panel as some people test positive for one of the 3 tests.


So in conclusion:

1. Don't rely on the doctors as they don't know up from down.

2. Find out all the names of the blood labs in your city.

3. For each lab:
Make a list of the Celiac tests they offer individually and as panels.
Write down the prices for each test or panel.
Write down the test codes (very very very important)
You may have to phone them to get the prices.

Compare the prices and which lab and which test covers the most bases.

I suggest:

Total IgA
Transglutaminase IgA tTG-IgA
Deaminated Gliadin IgA DGP-IgA
Deaminated Gliadin IgG DGP-IgG


VIP: get the test code for the test panel you want from the lab you picked.

Double check on the phone or in person the code and the price for the one you finally picked.

Go to your doctor and ask for "this test panel" to be printed on your requisition form.

MAKE SURE the doctor writes down the TEST CODE you want for the panel you want.

Ask the doctor to write down "CC to patient".

After you leave the doctor's office, Photocopy the requisition in case the blood lab loses it or gets the tests mixed up.

And of course eat your gluten (pasta, whole wheat bread and white bread)
The Celiac Disease Center says you should be eating gluten for 12 weeks prior to the Celiac blood panel.
The sooner you start the sooner you can do the test.

You are paying for the blood tests so the doctor should give it to you.
The blood is coming from you and not the doctor so why won't they test you?

Let us know how it works out.

 

Marcus

PS: please say a prayer for me,
I'm going to the gastro doctor that I've been waiting months to see  for a consult .
I hope he's receptive to me. I have a lot of notes and aspergers.

 

[Deaminated Marcus]

Addendum:

I remember my doctor telling me that the blood test lab I used is also in the US so that panel I did should be available to you.

(I'm in Canada)

[taynichaf]

Where I am the doctors choose the tests... I could probably try and get my own somehow, but insurance wouldn't cover that and I'm unemployed..

Thank you for the info! And I will def pray for you <3

[Deaminated Marcus]

Hi taynichaf,

 

Here too the doctor choses the test but we get to decide which blood test lab we want to go to.

Do you get to choose the lab for your test?

Or does the insurance company say to go to lab XYZ.

 

If you don't get to choose the lab for your test but know the test will be done by lab XYZ find out on their web site or phone to find out:

 

Do they have a full Celiac panel

What test is on that panel

What is the Celiac  test panel name

What is the code for that Celiac test panel.

 

Then when you see the doctor you give her the test code and test panel name.

 

A lot of us on this board had to tell our doctor which test to do or the test panel name because they don’t know.

 

When I went gluten free my first doctor didn’t want me to be tested.

Had I known what I know now about the importance of being tested

while I was half dead before going gluten free and which test to do, I would have done it then.

(2 years ago). Last week I failed the Celiac panel test.

 

My current doctor is a good guy but he only knew about the old AGA test.

So after my research,  I gave him the test code of the panel I wanted.

He wanted to find out too and he filled in the blood test requisition with that test code.

 

 So to answer your question in the title: you choose the test and then tell the doctor you want this test panel (with the code).

 

Best of luck.

[taynichaf]

Ohh! That makes sense.... For the tests i've done, I just tell the doctor that I think I have celiac disease and ask for the full panel... Then they would just find a test and i'd go get blood drawn. I shouldve tried to look up certain tests before... but I never thought I could even chose, ha. But thanks!!

[Deaminated Marcus]

I think you were saying that she didn't give you a blood test form, right?

So you still have a chance at getting a Celiac panel done.

[taynichaf]

Nope, she already ordered the tests and sent my blood out:/ just praying that I'm celiac while I wait for the results now...

[Deaminated Marcus]

So the doctor takes your blood in her office and sends it herself?

She doesn't give you a form and you go to the lab of your choice?

Because my doctor always give me the requisition (therefore I know what is on it) and I go to any lab.

 

Please ask her for a photocopy (say it's for your file in an official tone) and let us know which tests you got.

[taynichaf]

Well she gave me this paper and told me to go next door..and when I asked if it was the full panel, she didn't make sure it was..I had no choice in it then:/ when she cals with the results I'm ordinary asking for a copy!

[Deaminated Marcus]

You should have run to a photocopy place, copy it and run back to the lab LOL    

So many people here just get tTG, I hope you got the DGP-IgA and DGP-IgG.

Did you peek at the paper?

[taynichaf]

Lol,I should've!..but I guess I wasn't thinking:/ I did look at it, but it didn't say any specific tests..just something about celiac lab..

[taynichaf]

Ohhh! And I checked out my old tests and looked up the lab they came from...and all the tests were available!!! But he only did one!