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Going To Request More Tests....


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#1 taynichaf

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Posted 30 May 2013 - 09:04 AM

Two times my blood tests came back negative. I recently had a biopsy that came back negative, but they found GERD and a hiatal hernia.

 

For some reason, my doctors will not test the full panel and I just don't get why!

 

Being gluten free for just a few days I can already start to see changes.... I have MANY symptoms of celiac, and now i'm just starting to think that I'm an early celiac... So I am going back to the doctors tomorrow and pleading that they test the full panel for my own sanity! Along with my thyroid levels and to see if im hypoglycemic...

 

Any advice/tips? I know I might just have NCGS but I will not let this go until they run the full tests... And I want to quit eating gluten already!

 

Are there any other tests that I should ask for???

 

Thank you.


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#2 taynichaf

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Posted 30 May 2013 - 09:18 AM

Also, i want to do all the testing right away..how long do i have to fast for loe blood sugar? andwill fasting mess with my celiac tests?
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#3 KristinIrwin

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Posted 30 May 2013 - 09:22 AM

I had a positive ttg and then had a biopsy. I was told on the phone that I had a negative biopsy and then when I looked at the pathology report WEEKS later it said I had slight gerd and an increase in intraepithilial lymphocytes and that a full celiac panel was needed to truly exclude celiac disease. (My first doctor was awful) Then, my celiac panel was positive for 3 things and I was diagnosed by someone new! My villi damage was missed in my biopsy. You should ask to see your pathology report, that's always a good idea!

What parts of the panel did you have done previously? I'm so sorry they won't run everything- doctors can be so annoying.

You could have NCGI, but you could still consider getting the whole panel. Because if I hadn't, I wouldn't know that I have celiac!

Good luck with your health and I hope you get answers as soon as possible!

Kristin
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#4 dek38

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Posted 30 May 2013 - 11:28 AM

Two times my blood tests came back negative. I recently had a biopsy that came back negative, but they found GERD and a hiatal hernia.

 

For some reason, my doctors will not test the full panel and I just don't get why!

 

Being gluten free for just a few days I can already start to see changes.... I have MANY symptoms of celiac, and now i'm just starting to think that I'm an early celiac... So I am going back to the doctors tomorrow and pleading that they test the full panel for my own sanity! Along with my thyroid levels and to see if im hypoglycemic...

 

Any advice/tips? I know I might just have NCGS but I will not let this go until they run the full tests... And I want to quit eating gluten already!

 

Are there any other tests that I should ask for???

 

Thank you.

Have you been loosing weight?  I eat more than enough and loose weight, as you can see off my pic I was quite well built, but now my muscles have gone and I just have a sticking out gut.

Has for tests I have just had a Celiac blood test (Not sure what the tested for, and also an Endoscopy with no biopsy).  Not sure what other tests you can get, I think it is just blood and biopsy.


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#5 taynichaf

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Posted 30 May 2013 - 12:59 PM

Have you been loosing weight?  I eat more than enough and loose weight, as you can see off my pic I was quite well built, but now my muscles have gone and I just have a sticking out gut.

Has for tests I have just had a Celiac blood test (Not sure what the tested for, and also an Endoscopy with no biopsy).  Not sure what other tests you can get, I think it is just blood and biopsy.

Ok thanks!

 

And nope.. Actually, I gain weight when I eat gluten.. But when I stop eating it I can drop 5 pounds within a week, and that week I ate glouten free cookies and other junk. So it's not just the healthy food making me lose!


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#6 taynichaf

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Posted 30 May 2013 - 01:00 PM

I had a positive ttg and then had a biopsy. I was told on the phone that I had a negative biopsy and then when I looked at the pathology report WEEKS later it said I had slight gerd and an increase in intraepithilial lymphocytes and that a full celiac panel was needed to truly exclude celiac disease. (My first doctor was awful) Then, my celiac panel was positive for 3 things and I was diagnosed by someone new! My villi damage was missed in my biopsy. You should ask to see your pathology report, that's always a good idea!

What parts of the panel did you have done previously? I'm so sorry they won't run everything- doctors can be so annoying.

You could have NCGI, but you could still consider getting the whole panel. Because if I hadn't, I wouldn't know that I have celiac!

Good luck with your health and I hope you get answers as soon as possible!

Kristin

Yuppp.. Thats why I want to get tested again! And I don't even know which tests they ran... I think only the A ones... lol.

 

I know, now if THESE tests show negative for celiac, I will believe it is ruled out, and that I have NCGI. Which I plan to eat gluten free for the rest of my life anyways, so thats why I am so stressed! I want to be able to feel better already, but these doctors arnt helping much!

 

Thanks :)


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#7 Deaminated Marcus

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Posted 30 May 2013 - 03:56 PM

taynichaf,   with your Celiac testing experiences with doctors so far you know they know squat about how write up a Celiac blood test requisition.

 

I looked up my local labs to compare their Celiac panels (3 labs)

 

They were all expensive but one offered more.

 

One lab offered 4 tests as part of their panel.

 

I got the price and the TEST CODE from their web site.

Then I phoned the lab to double check the accuracy of the information as they still had old Celiac panels that they weren't offering.

 

I had talked about it with my doctor prior and he wanted me tested as well so he was ready for the next step:

 

I gave my doctor  the actual TEST CODE in writing and he wrote it on the blood test requisition.

 

We double checked that it was the write TEST CODE.

 

I went to the lab with the requisition sheet got the blood test done.

 

Don't expect the doctor to know what she's doing LOL.

 

You have to do your homework as listed above BEFORE you see her.

 

You're the boss; she's your employee.

 

Good luck.


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#8 taynichaf

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Posted 30 May 2013 - 03:58 PM

taynichaf,   with your Celiac testing experiences with doctors so far you know they know squat about how write up a Celiac blood test requisition.

 

I looked up my local labs to compare their Celiac panels (3 labs)

 

They were all expensive but one offered more.

 

One lab offered 4 tests as part of their panel.

 

I got the price and the TEST CODE from their web site.

Then I phoned the lab to double check the accuracy of the information as they still had old Celiac panels that they weren't offering.

 

I had talked about it with my doctor prior and he wanted me tested as well so he was ready for the next step:

 

I gave my doctor  the actual TEST CODE in writing and he wrote it on the blood test requisition.

 

We double checked that it was the write TEST CODE.

 

I went to the lab with the requisition sheet got the blood test done.

 

Don't expect the doctor to know what she's doing LOL.

 

You have to do your homework as listed above BEFORE you see her.

 

You're the boss; she's your employee.

 

Good luck.

Okay. I just really don't know how to get test codes... I have no idea what blood labs are even avaiable around here. But I will try and look it up right now.


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#9 kareng

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Posted 30 May 2013 - 03:59 PM

Yuppp.. Thats why I want to get tested again! And I don't even know which tests they ran... I think only the A ones... lol.

 

I know, now if THESE tests show negative for celiac, I will believe it is ruled out, and that I have NCGI. Which I plan to eat gluten free for the rest of my life anyways, so thats why I am so stressed! I want to be able to feel better already, but these doctors arnt helping much!

 

Thanks :)

 

 

Why don't you get a copy and see what they ran and what the results were? 


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#10 taynichaf

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Posted 30 May 2013 - 04:23 PM

Why don't you get a copy and see what they ran and what the results were? 

I do have copies of the tests... somewhere ha. But i'll find them and bring them to my doctor app.


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#11 taynichaf

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Posted 30 May 2013 - 04:25 PM

taynichaf,   with your Celiac testing experiences with doctors so far you know they know squat about how write up a Celiac blood test requisition.

 

I looked up my local labs to compare their Celiac panels (3 labs)

 

They were all expensive but one offered more.

 

One lab offered 4 tests as part of their panel.

 

I got the price and the TEST CODE from their web site.

Then I phoned the lab to double check the accuracy of the information as they still had old Celiac panels that they weren't offering.

 

I had talked about it with my doctor prior and he wanted me tested as well so he was ready for the next step:

 

I gave my doctor  the actual TEST CODE in writing and he wrote it on the blood test requisition.

 

We double checked that it was the write TEST CODE.

 

I went to the lab with the requisition sheet got the blood test done.

 

Don't expect the doctor to know what she's doing LOL.

 

You have to do your homework as listed above BEFORE you see her.

 

You're the boss; she's your employee.

 

Good luck.

Yeaahhh.. I can't find anything like this.. :( PRAY THAT I GET A DOCTOR THAT WILL LISTEN TO ME, PLEASE! :)


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#12 kareng

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Posted 30 May 2013 - 05:25 PM

Yeaahhh.. I can't find anything like this.. :( PRAY THAT I GET A DOCTOR THAT WILL LISTEN TO ME, PLEASE! :)

  

Could you look up "laboratories" in your yellow pages phone book or online?
That would be step one.
 
Worst case scenario, write down the tests you want and make sure they are written on the blood test requisition sheet you get back
but you still have to go to a lab that does those same tests.
 
I saw an immunologist for another problem and I mentioned about my possible Celiac
and she wrote to my PCP recommending the obsolete AGA celiac tests.
Even my PCP wanted me to do the AGA tests and didn't know about the better DGP tests.
You can't count on doctors knowing this stuff.


How about if we see what tests she has already had? Explore the diagnoses she has been given? Insurance won't pay for an immediate repeat of tests.
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#13 taynichaf

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Posted 30 May 2013 - 06:18 PM

Could you look up "laboratories" in your yellow pages phone book or online?

That would be step one.

 

Worst case scenario, write down the tests you want and make sure they are written on the blood test requisition sheet you get back

but you still have to go to a lab that does those same tests.

 

I saw an immunologist for another problem and I mentioned about my possible Celiac

and she wrote to my PCP recommending the obsolete AGA celiac tests.

Even my PCP wanted me to do the AGA tests and didn't know about the better DGP tests.

You can't count on doctors knowing this stuff.

I did... Either I just can't find the info on blood testing or it just isnt there ha. Well... I have the list of tests printed out, along with a list of symptoms.. so hopefully I'm good to go. Ahhhhhh I really hope this doctor listens to meeee.


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#14 taynichaf

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Posted 30 May 2013 - 06:20 PM

  
How about if we see what tests she has already had? Explore the diagnoses she has been given? Insurance won't pay for an immediate repeat of tests.

Ohh pooop... I hope they do! I actually had the same test like within the same month for this... I'm pretty sure insurance covered it.. SP hopefully they'll cover this last one! Because my current insurance ends tomorrow... and thats when my doctors appointment it..


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#15 powerofpositivethinking

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Posted 31 May 2013 - 02:54 AM

taynichaf,

 

correct me if I'm wrong kareng  :), but I think what kareng is saying is please post your initial results from your blood tests on the forum, so that others can take a look at them.  the forum members are soooooo much more knowledgeable than any doctor I've seen so far.  please find your results, post exactly what it says on your lab report, complete with your results and the reference ranges that particular lab uses, and then members can comment on them.  it will be so much more helpful than just hearing that your tests were negative.  we need to know specifically which tests were run, if you want our help  :)

 

  
How about if we see what tests she has already had? Explore the diagnoses she has been given? Insurance won't pay for an immediate repeat of tests.

 

 

I do have copies of the tests... somewhere ha. But i'll find them and bring them to my doctor app.

 

your best bet on this one, is to call up your insurance company and ask which labs they cover.  My insurance only covers LabCorp based tests or any test from a hospital lab.  if you don't find out this information, you could be stuck with a very large bill because you didn't do your homework.  

 

also to look up tests and codes, I know on the LabCorp site, I have to go into the Health Care Provider section instead of the Patient section, so that I am able to access the specific codes for that lab.  here is a link to the panel I was given:

https://www.labcorp..../?testId=408349

 

I did... Either I just can't find the info on blood testing or it just isnt there ha. Well... I have the list of tests printed out, along with a list of symptoms.. so hopefully I'm good to go. Ahhhhhh I really hope this doctor listens to meeee.

 

 

again, please go find your initial blood work paper, and post your results exactly as they appear on the lab report complete with reference ranges, so that we can help  :)


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Diagnosed with celiac disease, fat malabsorption, severe pancreatic insufficiency (taking Creon) and vitamin K and D deficiency

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 



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