Which Test Is Best?

[Georgia-guy]

It's beginning to look like my insurance will not want to cover testing without difinitive proof (a bit of a cath-22 there). I have found a lab that will do blood work out of pocket without doctor orders. My question is this: which one or two tests can I get that will be most likely to come back with an accurate result (preferably a positive since I'm pretty sure it's celiac, and I'm tired of the search for an answer)?

Total Serum IgA

tTG - IgA

tTG - IgG

EMA - IgA

DGP - IgA

DGP - IgG

(I know it's kinda bad I'm asking to a positive test, but celiac answers EVERYTHING and my reverse gluten challenge showed positive signs gluten is the problem, and I know my dietician agrees with me, and i think my doc does too.)

[nvsmom]

If at all possible, it is best to have a few tests run because the sensitivity (how many cases out of 100 celiacs it would catch) is as low as 17% in the worst tests (AGA ones). If insurance will cover at least a few, I would push for it as much as you are able.

 

This report shows the sensitivities of the various tests on page 12: Open Original Shared Link  According to that report, the DGP IgA is the most sensitive with a sensitivity of  82-96% - meaning it could miss 4-18% of all celiacs taking that test.

 

Remember that you should have a total serum IgA control test done too. Up to 5% of celiacs are deficient in IgA (more than the regular population) and those 5% can not be tested using IgA based celiac tests (tTG IgA, DGP IgA, EMA IgA) because they will almost always result in a false negative result.  If you do not have a total serum IgA run, you might want to stick to the IgG based tests (DGP IgG, tTG IgG).

 

And you know you must be consuming about 1-2 slices of bread per day (or equivalent) for 8-12 weeks prior to testing in order to get the most accurate result.

 

Best of luck with whatever you decide.

[Georgia-guy]

Insurance won't cover any right now, so my an is go pay out of pocket at a lab, get results to my doc, then there will be reason for insurance to pay for it (and maybe even reimburse for my out of pocket expense).

And I am aware that I need to have gluten, and I'm also keeping a journal showing what I eat, what issues I have, as when. :-)

[nvsmom]

Insurance won't cover any right now, so my an is go pay out of pocket at a lab, get results to my doc, then there will be reason for insurance to pay for it (and maybe even reimburse for my out of pocket expense).

And I am aware that I need to have gluten, and I'm also keeping a journal showing what I eat, what issues I have, as when. :-)

Darn insurance.

 

Just so you know, the doctors' favourite test to run is usually the tTG IgA.

[Georgia-guy]

Darn insurance.

Yeah, I love my insurance. They are always first on the list to send a Christmas card to. #complete sarcasm

[LauraTX]

Honestly, if you are looking for something that is hopefully positive and will give your doctor the ability to further test you, and are paying the full price out of pocket, I say do only the tTG IgA at first.  Then, if it is hugely positive, you can go to your doctor and go further there, and if it is negative, do the rest of the tests to look further into it and make sure your IgA levels are okay, etc.  I only say this to you and you only in this circumstance because you have demonstrated an understanding of what is needed.  Anyone else reading this in the future who is not the user georgia guy should not follow this advice.

[Georgia-guy]

Laura, thank you for that information. Is there anyway to know if my IgA would be off? I would I have to do the IgA total serum to know that?

I plan to go get the test done Wednesday, so long as I don't get called into work (I work a job where I am on-call 6 days a week and can't say "sorry, I can't come in today" unless I'm admitted to the hospital)

[Georgia-guy]

So here's the newest plan...I'm at the hospital after passing out. They suspect anemia...I suspect one of my post-gluten naps came on too strong. But either way, I will have to follow up with the doc. When I follow up, I will make 1 last attempt to get the doc to force insurance to approve the celiac panel, if that doesn't work, then I will be going out of pocket.

[LauraTX]

Oh my gosh you poor thing!  *virtual hugs*

 

If you do just the ttg iga first, and it comes back glaringly positive, then it doesn't matter in that sense what your total iga is. (of course you could be like me and still have a positive ttg iga and also low iga)  If it comes back negative or borderline, you can then pay for the total iga if neccesary.  Basically paying for what you need incrementally as you deem it absolutely neccesary as to not bankrupt you.

-once again this only applies to georgiaguy in this scenario and applies to no one else-

[Georgia-guy]

Well, on the bright side, ER lab wotk came back. Vitamin deficiency, suspected malnutrition (I eat ALL day long), loss of 10 lbs in 2 weeks (without change in exercise or eating habits), and anemia. Looks like I may now have enough, combined with abt a third of the Univ of Chicago Celiac symptom list, to get the insurance to pay up.

[Georgia-guy]

Oh, and the blood work results are nothing new...they had my old doctor (called and woke him up) send copies of all lab work in last 5 years for comparison. Turns out vitamin deficiency, malnutrition, and anemia should have been picked up on long ago. Go figure, that's also the doc who tried to give me medicine I'm severely allergic to.

[BlessedMommy]

I'm glad that you will have more leverage to deal with the insurance company. It's just kind of ludicrous how many hoops you have to jump through nowadays to get tested for celiac. I remember getting a gastroenterologist back in the day to ask about celiac testing and they said, "Oh well we might not test you for celiac. We don't always do what the patient wants. We'll determine what's appropriate screening for you."

 

Sometimes it surprises me that ANYBODY gets a DX, with the way doctors and insurance drag their feet on it.

 

Best of luck to you!

[nvsmom]

Glad things are finally moving for you!  Hope you are feeling better today.

[cyclinglady]

Oh my gosh!  Your insurance *%$#S!  

 

I feel so bad for you!  And when you are sick, you just don't feel like jumping through a million hoops!  I can relate.  Our insurance is good (we are self-employed) but our largest monthly expense is our health insurance!  We pay for three people a whopping $22,000 per year and that's is a reduction from $24,000 thanks to Obamacare (I guess)!  I cringe when I think that we have paid 1/4 of a million dollars over the last 11 years!  We could go through our state and get comparable insurance, but at the same price!  So we are stuck.  Actually glad to have it now, but every test is a big hassle!  Like when I asked for a bone scan and did not get one until I had some fractures.  Really!  

 

I hope that you get approval.  I also hope that you were not offended over my previous comments of paying for the tests out-of-pocket.  I do not know you or your finances.  I just think a celiac disease test may be the best investment anyone could ever make if they are suffering with obvious symptoms!  

 

Please take care!  Get some iron in you (at least what little you can absorb).  

 

I'm keeping my fingers crossed!  

[Georgia-guy]

I also hope that you were not offended over my previous comments of paying for the tests out-of-pocket. I do not know you or your finances. I just think a celiac disease test may be the best investment anyone could ever make if they are suffering with obvious symptoms!

Please take care! Get some iron in you (at least what little you

Cyclinglady, I was not offended by your out of pocket comments, I had already started looking for a way to do that. My finances are alright, I'm just under payment plans with creditors that I can't break, and a few ER copays ($250 a piece) in the past month-ish aren't helping much. It's just frustrating that I have insurance but they won't pay $500 for some lab work that could save them many thousands in the future.

As for the iron, I'm not sure how to safely do that without over-doing it. I'm waiting to hear back from my unofficial nutritionist. (Unofficial cuz it's an old college classmate who I am not paying aside from a dinner out type deal since she's working with me on her own time to save me some $$)

[Georgia-guy]

To those that were involved in this post, I got the testing done out of pocket. Results came in today...I have yet to see the actual report, and couldn't discuss details over the phone, I will have to drive back to the private lab to get the report (don't mind cuz it protects my privacy). But...all 4 tests showed positive! I finally have an answer after tons of "nope it's not this" and "idiopathic whatever"! I know it's not gonna be easy at all, but I think I can handle it. It's not the best answer, but it's not the worst either (I've been tested for lymphoma and other "death sentence" Dx's). So, let this new journey begin. See y'all in the "post-diagnosis" category!

[Wi11ow]

Congrats on getting an answer. It's always easier when you know what's wrong. And, um, welcome!!

[LauraTX]

Good to hear there are finally some definitive answers.  You can now add "Official member of the Silly Yak Club 5-28-14" to your signature... lol

[nvsmom]

So glad you know.   And to have all tests positive is unsual! It doesn't get much clearer than that though.  LOL