Question About Genetic Tests for celiac disease

[Kristiemarie]

HI!  I'm new here and a little freaked out.

Some background....

Many years ago (I am not sure how many) I started having issues with a rash periodicly appearing on my torso and arms and itching all over my body.  My head will itch SO BAD I make it bleed sometimes.  I tried using special shampoo but it only kept the itching at bay for a short time... sometimes only hours before it started coming back.  And my body...nothing seems to make that go away.  I've itched for so long I don't even remember when I didn't itch.   I also have post nasal drip every day all year long.  And have started snoring at night bad because I am stuffy.  I have headaches frequently and am always tired.  I poop 4-5 times a day and it's not always solid.   Also, when I have to go I HAVE TO GO.   I have gas that is pretty unpleasant.   .  I also have Graves Disease (an autoimmune disease) so I've always attributed these issues to that.  And to top that, fibromyalgia as well.  Possibly unrelated, bipolar.

I decided enough was enough and hit up an allergist the other day.  We did a skin test and some things started to turn positive and then out of the blue, everything went negative.  Even the histamine sites were gone in 15 or so minutes.  I have not taken any antihistamines but I do take a bunch of other drugs.  The allergist was perplexed at my results.  So she decided to send me for blood work in case one of my meds was interfering.  I'm having allergy work done for foods and other allergens.   Which brings me to the reason I'm here.   She suspects Celiacs.

She wants me to do a Tissue Transglutaminese IgA and IgG, Giiadin IgA and the genetic tests HLADQ2 / HLADQ8.  She told me most of her patients can't get the genetic tests due to insurance companies not covering it.  I assumed mine would cover both or just the TT IgA, IgG.  But my lovely insurance company has it backward!  They cover the genetic test but not the TT IgA and IgG!  

I contacted my doctor regarding this but she hasn't gotten back to me and I want opinions of others here who've been there done that.  Is it worth it to just get the genetic test or is that sort of worthless without the other?

The TT IgA and IgG is kind of expensive to do out of pocket with no insurance.  Are there any places on line that do it or is this just an in lab test?

 

My mom recently found out she is allergic to SO MUCH STUFF and she is really allergic to corn.  I of course wonder if that's a possibility for me too.

Thanks for any advice or help or guidance.  I'm just at a loss here.  

[tessa25]

I use walkinlab.com for blood tests. The test is done at Labcorp. I get results within the week. $298 for full celiac panel, $248 for TTG IGA and IGG, EMA.

I don't do the genetic testing.

[cyclinglady]

The genetic test does NOT diagnose celiac disease!  Why?  Over 30% of the population carries the genes that may develop into celiac disease (tiny amount).  That is a lot of people!!!!  It is used to help exclude celiac disease. 

learn more about celiac disease testing:

Open Original Shared Link

Having one autoimmune disorder makes you susceptible to developing more AI issues.  Is your rash a rash or hives?  If a rash, research DH (we have a section for it) which is a manifestation of celiac disease and is not an allergy (IgE reaction).  If  DH,  the rash can be biopsied, but you must find a celiac-savvy dermatologist because obtaining the biopsy is different than other skin biopsies.  Celiacs who have DH can test negative on the celiac blood panels.  They do experience intestinal damage.  If hives, they could be autoimmune related.  

Consider asking your PCP about celiac testing.  I am shocked that your insurance would not cover a cheap (compared to the genetic test) celiac blood test.  

 

[Kristiemarie]

They said because it's "experimental".  Whatever that means. 

 

[Kristiemarie]

If there is one of the tests I listed that I should have above all the others, what would it be?  I really can't afford $200+ in tests right now. 

Thanks!!

 

 

[cyclinglady]

The TTG IgA, but.......I think you need to call your insurance.  The genetic test would be considered experimental (maybe because it can not determine a celiac disease diagnosis)  over the celiac blood panel which is recognized world-wide.  Did you actually talk to the insurance company or are you dealing with your allergist?  

Something is not right!  

[ravenwoodglass]

You really need to go with the celiac panel rather than just genetic testing. However you mention being on a number of drugs so do be aware that if you are taking any form of steroid like prednisone that will impact the celiac panel and DH biopsy.

You may want to have your Mom get a celiac screening also.  After seeing lots of doctors before diagnosis I ended up at an allergists also. Out of 99 things they did skin prick testing for the only thing I didn't react to was beech trees. I thought I would have to live in a bubble. The allergist suspected celiac so he guided me through an elimination diet. My reaction to wheat was confirmation to him and he referred me back to a GI doctor who confirmed celiac after a very unpleasent gluten challenge (the allergist had told me to go gluten free and never touch it again, big mistake).

Incidenttally I did genetic testing 5 years after diagnosis and I don't have either of the two most common celiac associated genes. I have a double copy of a gene that has only in the last few years been recognized as associated with celiac. If I had gene testing done before diagnosis they would have said I couldn't be celiac and frankly I would be dead by now.

[Jmg]

2 hours ago, Kristiemarie said:

They said because it's "experimental".  Whatever that means. 

I'm with CyclingLady, something isn't right here. Perhaps in the request that the allergist has sent? Maybe she's asked for additional tests they don't cover? 

The basisc celiac tests are well established and used the world over. There's nothing experimental about them. Although I don't know your system well I find it hard to imagine that there's an insurance company that actually prefers a genetic test, which will tell you next to nothing, over the blood tests.

Do they have an ombudsman or appeal procedure? Would it make a difference if the request came via your GP rather than the allergist? Either way, the blood test is what you need, the genetic test wouldn't get you much further down the road.

 

[Kristiemarie]

That's what I thought!  So I called a second time and they just spit back the same info.  It's not covered.  I told the lady I thought that was odd since they've been doing the TTG IgA forever and she was like, uh well we don't cover it.  

I am not sure who else to call because I believe you all when you say this is an important test and everything I've read says this is the test to have done.

Here is the lab request from my doc.  Is there something funny on here that I'm missing???   Bottom one - Celiac Genetics- is the one that's covered.  The rest are not. 

Also, I wonder if I can have a lab run a pre-procedure estimate for me using this actual lab request.  Maybe the insurance lady or myself have the wrong codes or something.

I don't think that getting it from my GP would help.  

I'm getting super frustrated and I thank you all for reminding me I'm not crazy!

[cyclinglady]

Who is your insurance carrier?  Just curious.  

My docs here in CA are all computerized.  That looks like a prescription (Rx) and not a lab order.  No codes, etc.  is your allergist an M.D?

[Kristiemarie]

I have Aetna PPO. 

She did write it on a script pad and yes she's an MD.  

I live in a smaller town and she uses the same lab all the time so I'm sure that's why she did it that way.

I called that lab and had them look up the codes based on what she wrote and the numbers match up with what the insurance company has.

[Jmg]

Is this any help?

Open Original Shared Link

Quote

Policy

1. Aetna considers serological testing of IgA anti-human tissue transglutaminase (TTG) antibodies, IgG and IgA deamidated gliadin antibodies (DGP), and IgA anti-endomysial antibodies (EMA) medically necessary for any of the following indications:

   1. As a preliminary diagnostic test for persons with symptoms suggestive of celiac disease; or
   2. To monitor response to a gluten-free diet; or
   3. To screen first-degree relatives of individuals with celiac disease; or
   4. To screen persons with type 1 diabetes for celiac disease.

 

[AIMama]

On 4/21/2017 at 10:45 AM, ravenwoodglass said:

You really need to go with the celiac panel rather than just genetic testing. However you mention being on a number of drugs so do be aware that if you are taking any form of steroid like prednisone that will impact the celiac panel and DH biopsy.

You may want to have your Mom get a celiac screening also.  After seeing lots of doctors before diagnosis I ended up at an allergists also. Out of 99 things they did skin prick testing for the only thing I didn't react to was beech trees. I thought I would have to live in a bubble. The allergist suspected celiac so he guided me through an elimination diet. My reaction to wheat was confirmation to him and he referred me back to a GI doctor who confirmed celiac after a very unpleasent gluten challenge (the allergist had told me to go gluten free and never touch it again, big mistake).

Incidenttally I did genetic testing 5 years after diagnosis and I don't have either of the two most common celiac associated genes. I have a double copy of a gene that has only in the last few years been recognized as associated with celiac. If I had gene testing done before diagnosis they would have said I couldn't be celiac and frankly I would be dead by now.

I am curious which gene you have?  DQ6?

[GalaxyDuster]

On 4/21/2017 at 4:10 PM, Kristiemarie said:

I have Aetna PPO.

That explains EVERYTHING. I had Aetna PPO about 4 years ago, and it was horrible. Absolutely horrible, and expensive. They jacked up the price the year Obamacare came out, from $550 a month (family) to $725 a month and I got stuck paying it for a year. I dropped them like a rock when open season came around. They are a greedy and worthless insurance company.

[ravenwoodglass]

On 4/25/2017 at 1:10 PM, AIMama said:

I am curious which gene you have?  DQ6?

I have 2 copies of DQ9. One from each parent.

[Gemini]

14 hours ago, GalaxyDuster said:

That explains EVERYTHING. I had Aetna PPO about 4 years ago, and it was horrible. Absolutely horrible, and expensive. They jacked up the price the year Obamacare came out, from $550 a month (family) to $725 a month and I got stuck paying it for a year. I dropped them like a rock when open season came around. They are a greedy and worthless insurance company.

Truer words were never spoken.......insurance companies operate like Ponzi schemes.  I know there are times when a person really needs insurance but navigating their ridiculous policies is enough to make anyone go crazy.