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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748
    Majesticrb
    Newest Member
    Majesticrb
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • ckeyser88
      Roommate search

      By ckeyser88 · Posted

      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
×
×
  • 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.