Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Insurance; Is There Risk With Genetic Tests

linda-r

Recommended Posts

linda-r Rookie
linda-r
Posted

I finally got authorization from insurance for celiac serology and genetic testing for my daughter. Is there risk that insurance companies in the future may use her genetic profile to deny coverage or charge more for coverage? Has anyone had any experience or thoughts on this subject?

I had previously posted that she had a negative biopsy, but although her villi were normal, she did have slight irritation of the stomach lining. Her H. pylori has been repeatedly negative. She has had reflux and abdominal pain since age 4 and occasional Reynaud's episodes the last 2 years.

Thank you for your insight. You have been very helpful!

Note: I had posted this a few minutes ago and it did not appear. I apologize if it shows up twice.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Amyleigh0007 Enthusiast
Amyleigh0007
Posted

I did my genetic testing through Enterolab. I do not plan on turning it into my insurance so they will never know about it. It cost $174 and that included the $25 shipping charge. Not only did I learn about my genes but it also gave me information about my daughter (my son has Celiac so there was no question about him). We now know she has a 50% chance of receiving my Celiac gene and 100% chance of receiving my gluten sensitivity gene. I also learned that both my parents have the gluten sensitivity gene although they are both in denial! It was well worth the $174.

linda-r Rookie
linda-r
Posted
  • Author

I am wondering if maybe I should have the genetic portion done through Enterolab without using the insurance company. I could still have the serology tests done by Prometheus while still protecting her genetic privacy. I am going to ponder this for a while. Anyone else have any thoughts? Does Enterolab have a reputaion for reliable results?

Jestgar Rising Star
Jestgar
Posted

There is no Celiac gene. The HLA haplotypes are only associated with Celiac, not causative. Like blond hair is associated with Norwegians. If you are blond, it does not necessarily mean you are Norwegian, and if you are Norwegian, it does not necessarily mean you are blond, but they are associated: many blonds are Norwegian, and many Norwegians are blond.

linda-r Rookie
linda-r
Posted
  • Author

Jestgar,

Your statement implies that since the gene is only associated with celiac, and that the general populace has a 30% presence of these genes, then perhaps there is little risk of discrimination from insurance companies.

Prometheus only runs the genetic test if all serologies are negative, so the presence of genetics alone may not carry a lot of weight in the insurance world. The absence of the gene would make the presence of celiac unlikely, if I am understanding this issue correctly.

captaincrab55 Collaborator
captaincrab55
Posted

I'm not an Insurance wizard, but I was always told it was best if One was diagnosed when they had insurance.. IMO, it would be best to be diagnosed when One has insurance and insurable for that as long as One had insurance. Some health issues do have limits and some coverage changes with different insurance companies....

It would seem that Insurance companies could check forms to get some information on members and connect to real names if that it was legal. I would think that One should be more concerned that a future Employer could harvest this information.

I now wonder if a Pilot can pass his Physical with CELIAC? Is there a topic about employment yet?

Jestgar Rising Star
Jestgar
Posted
Jestgar,

Your statement implies that since the gene is only associated with celiac, and that the general populace has a 30% presence of these genes, then perhaps there is little risk of discrimination from insurance companies.

Prometheus only runs the genetic test if all serologies are negative, so the presence of genetics alone may not carry a lot of weight in the insurance world. The absence of the gene would make the presence of celiac unlikely, if I am understanding this issue correctly.

Less likely. And you can argue with an insurance company that an association does not equate to disease, and therefor, there is no basis for discrimination.

I'm also fairly certain that it's not legal in the US to discriminate based on genetics, but I don't know why I think that.

Here's a related article:

Open Original Shared Link

Here we go:

Open Original Shared Link

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


linda-r Rookie
linda-r
Posted
  • Author

Thank you all for your responses. I now feel more comfortable having the testing done.

lizard00 Enthusiast
lizard00
Posted

It's protected under the GINA Act of 2008.

Open Original Shared Link

Jess, I just realized you had a link in there, too. Looks like it's to the same or similar info. :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,083
    • Most Online (within 30 mins)
      7,748
    Juane
    Newest Member
    Juane
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.