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. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      @Sarah Grace, Thank you for the update! It's so good to hear from you! I'm glad Thiamine, B Complex and magnesium have helped you. Yes, it's important to take all three together. I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too. They are high in tyrosine, an amino acid, found also in fermented...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan...
    4. Scott Adams
      - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    5. Wheatwacked
      - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy

      Just a gluten free diet is not enough. Now you have to identify and replenish your malnutrition. Celiac disease is co-morbid with malabsorption syndrome. Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely. It takes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,145
    • Most Online (within 30 mins)
      7,748
    Kundrey
    Newest Member
    Kundrey
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.