Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Does Diagnosis Get You Blackballed?
0

14 posts in this topic

I was speaking to a pediatrician today about my never-ending celiac saga. Although my endo showed some evidence, biopsy was negative.   I explained that my real concern is for my kids and this is what worries me.  She advised me to go and get gene tests to at least see if I have those.

 

But what really surprised me was that she told me NOT to get my kids gene tested.  She said that their future would be seriously affected by a positive gene test regardles of whether they were diagnosed with celiac or not.  She said just the fact that they had the genes would mean getting any kind of life, medical, mortgage insurance would be next to impossible.  She actually said she wished more doctors would explain that to patients.

 

So I'm wondering, is this true?  Have any of you experienced this? 

 

It really made me reconsider some things.  It's hard to believe you would have to choose between your health or uninsurability.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Unfortunately I don't have an answer for your question, but I just find it utterly appalling that this is the state of health care in this day and age. It makes me sick. Sick people = need health care. I cannot understand why it's so difficult and why people who NEED health care will be punished for circumstances that they cannot control. 

0

Share this post


Link to post
Share on other sites

This doesn't make sense. It is my understanding that about thirty percent of the population carry one or more of the genes associated with celiac disease. Yet only about one percent ever develop the actual condition. Celiac disease, properly controlled by a strict gluten-free diet, does not increase health risk or mortality rates.

0

Share this post


Link to post
Share on other sites

This doesn't make sense. It is my understanding that about thirty percent of the population carry one or more of the genes associated with celiac disease. Yet only about one percent ever develop the actual condition. Celiac disease, properly controlled by a strict gluten-free diet, does not increase health risk or mortality rates.

I agree. Plus early diagnosis can result in a person not developing a lot of issues later on. We spent a fortune just in copays before I was diagnosed not even taking into account all the prescription meds I no longer need. If anything I have become healthier than I ever was since childhood and I don't think I am alone in that.

0

Share this post


Link to post
Share on other sites

all prev posters are being logical, insurance co. are not nec so.  However, I think there is a federal law forbidding this.  But proving it may not be easy.

 

edit: I think the law applies only to health insurance...

0

Share this post


Link to post
Share on other sites




I just renewed my life insurance last week. When I first got it, 10 years ago, we didn't know I was a celiac. we were able to renew it, no problem, without a medical even though they knew I was a celiac and hypothyroid.

 

 

Oh, and when I initally got my life insurance policy, they knew that I had had ITP (an autoimmune clotting disorder with similar bleeding results as hemophaelia) and my spleen removed 10 years earlier and they insured me. My policy cost a bit more than a perfectly healthy person but it was just a tad bit more than my husband (who is a few years older). It seemed fair that it was a bit more since my ITP was life threatening.

 

Our insurance guy said getting a policy is a problem when you have health problems that have not been identified... I'm not sure if that is correct (in canada) but that's what he said - or at least what I heard.  LOL  ;)

0

Share this post


Link to post
Share on other sites

Here's an article I found:

 

http://celiacdisease.about.com/od/CeliacDiseaseTests/a/Why-Not-Get-Diagnosed-Celiac-Gluten-Sensitivity.htm

 

 

That said, I have been self-employed for years.  When I first applied some 10 years ago, I was denied because of Hashimotos Thyroiditis, toe nail fungus, and Rosacea (I kid you not on the toe nail fungus!!)  I was not taking any meds for the Rosacea (resolved by avoiding food allergy triggers) and the toe nail fungus was treated with Topical Diflucan because I was nursing!  The insurance company said that I (and I quote), "I could take Accutane for the Rosacea or oral Diflucan for the fungus and ruin my liver!"  I protested and stated that I was not taking any of these meds and would not since I was nursing and still I was denied!  They accepted my husband even though he was overweight and  had high cholesterol.

 

 Even when my doc wrote a 2 page letter explaining my terrific heath (was doing triathalons at the time) I was rejected.

 

 Luckily, I was able to stay on COBRA but I couldn't go to the doctor's for one year) and then I was accepted.  Later, I became employed and when I went independent again, I was able to get on a conversion plan or I could apply for an individual plan, but because of my pre-existing conditions and under new HIPPA and state laws, I must be accepted but must pay 30% more for my policy.  Did I mention I tried to avoid the 30% increase, but was denied again because of my thyroid and an Urgent Care visit for an infected cut on my hand (don't swim with any tiny cuts!!!)

 

I haven't even attempted to switch our policy because of the hassle of disclosing 10 years of medical problems and the savings would be tiny.  

 

Luckily, we were able to get life insurance even with my thyroid diagnosis over 10 years ago.  Now, with Celiacs, I'm not sure they'd take me.

 

We are hoping with all the US health insurance uncertainty that our rates don't increase dramatically or our carrier pulls out of our state.  As it stands we've been paying about $23,000 per year.  That's our largest expense!!

 

So, I can completely believe that having a Celiac diagnosis or gene testing can ruin your chances of obtaining decent insurance (health or life).  

0

Share this post


Link to post
Share on other sites

I agree completely with cyclinglady and she is correct...if you live in the US.  I am not sure where others are but this type of testing can and will either deny you insurance or charge you a lot more for it.  One of the first questions you will see on any life insurance policy application is whether you have any gastrointestinal or autoimmune problems.  If you answer yes to either, red flags go off.  Because of Obamacare, people can no longer be denied, which everyone thought was a victory, but guess what?  There is nothing saying that they can't charge you more and they do.  Not a little more...a lot more.  I am lucky in that I am covered under a group policy through my employer but if I had to buy insurance on my own, I would be screwed. It doesn't matter that I never cheat on my diet, keep a perfect weight and exercise regularly and am pretty fit now.  They don't care. You are not being controlled by medication so you are high risk.  It's ass backwards but government always is. 

 

One way around it is to pay for the testing privately so there is no insurance record of the testing.  This is what I did and it was not all that costly.....about $175.00 in total.  I also paid for the Celiac panel out of pocket so my insurance company sees Celiac on my medical record BUT there is no paper proof of it.  Not sure how much of that is a gain for me, but it makes me feel better anyway!

0

Share this post


Link to post
Share on other sites

Actually, there was a law passed regarding this.  The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The new law prevents discrimination from health insurers and employers. The President signed the act into federal law on May 21, 2008. The parts of the law relating to health insurers will take effect by May 2009, and those relating to employers will take effect by November 2009.

0

Share this post


Link to post
Share on other sites

Just remember....just because its a law today, doesn't guarantee it can't be changed next year.

0

Share this post


Link to post
Share on other sites

Forgot to add, "The law does not cover life insurance, disability insurance and long-term care insurance."

0

Share this post


Link to post
Share on other sites

insurance companies are going to make their money one way or another - just like banks - they got a smack on the hand, now they just make up new ways to get your $$  :(  we are fortunate enough that my husband's employer provides insurance for our family.  i have no idea whether our rates have gone up since my celiac dx (i hope not, they are a small business and are kind, generous people)  i noticed my co-pay is more, but that could have been an across the board change for the whole group policy.  lolz the irony of the whole thing is:  since i've been gluten-free, aside from testing and scope, i have been to the doctor less.  (i am due for a check up) not constantly sick anymore :)  

0

Share this post


Link to post
Share on other sites

Actually, there was a law passed regarding this.  The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The new law prevents discrimination from health insurers and employers. The President signed the act into federal law on May 21, 2008. The parts of the law relating to health insurers will take effect by May 2009, and those relating to employers will take effect by November 2009.

I think that just means they cannot deny you coverage. People are still being charged a lot more because of certain health issues. But, then again, health insurance is going way up for everyone these days so it's an across the board problem.

1

Share this post


Link to post
Share on other sites

Well, I'm in Canada so the health insurance aspect doesn't apply to me.  But as for life insurance or disability etc, that could be a real burden or problem.  Imagine your kids are grown, start a family and have problems obtaining a mortgage because they don't qualify for mortgage insurance.  Or can't get basic life insurance coverage to protect their family.  All because they tested positive for the genes, not the disease.  Crazy.

 

It's a really no-win situation.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,662
    • Total Posts
      918,516
  • Topics

  • Posts

    • Celiac - Not yet diagnosed but feel like I'm dying.
      Hi Dylan I just wanted to join SLLRunner in welcoming you to the forum and yes, do ask to be tested for Celiac and Chrons. My nutritionalist told me that celiac disease is a great mimicker of many illnesses which I think must make a doctor's job all the harder when it comes to diagnosis.  For many of us it took us  a long time to get a diagnosis - for about eight years before my own diagnosis I had ulcers,  odd migraines and hallucinations on waking, anxiety, elevated blood protein but no obvious cause for it, anemia, numb hands and arms in the mornings, and eventually the abdominal pain and severe diarrhea. It was all scary stuff but  it was only when I got the last two symptoms, for six weeks, that I was tested for celiac disease (for the protocol here in the UK is that if you have a new gastric symptom for more than six weeks you should have further investigations).  I still wonder if I hadn't had that gastric pain and diarrhea whether my doctors would have even thought it was celiac related? After all you have been through it is not surprising that you are feeling depressed.  A lot of people feel very depressed and anxious before their diagnosis.  You are doing the right thing seeing a new doctor, and hopefully you are just around the corner from getting some long awaited answers.   Keep us posted.  You will find  some great advice here and support during your journey.  All the very best.
    • Costco
      This forum post came up when I Google searched Kirkland Dish Soap. I called them today and they said there is no gluten in the dish soap. Janis 
    • Food tolerance issues post-diagnosis
      In light of the studies that found some probiotics that are labeled gluten-free yet tested over 20ppm I wouldn't touch them. Now those would be the powder or pill forms. Yogurt is not affected by that. Since you don't have a problem with dairy then I would say eat some yogurt every day. I like Chobani Greek because it has more kinds of cultures. Remember now that powder or pill forms of probiotics do not come under the gluten-free labeling law. The same for OTC & prescription meds. You need to check every single one of those. There are a few online sites where you can check things like that or ask here but as far as prescription meds -- call the manufacturer EVERY TIME. I also wanted to tell you in case you didn't already know that since celiac is genetic and can present at ANY age then all your first degree relatives need to be tested every 2 years in the absence of symptoms and immediately if symptoms present between the 2 year periods. As far as the digestive enzymes go, I tried Digest Gold for a short time & it really didn't seem to do anything for me however I will say I had a lot of issues going on at the time so I might not know if they helped or not. I decided to quit them in order to take that out of the equation so I could try to pin down what was causing me distress. The fewer things in the mix you know. I have heard people report the same as your consultant said. Some say they helped & some say they didn't. Remember Jammy, you're just in the beginning stages. I KNOW you want to heal & heal FAST. Been there, done that! It's like this: you didn't get sick overnight & you're not going to heal overnight. Patience is the watchword here. It's hard I know! You just want to get on with your life. We can all relate.  Again, I'm going to say to eat foods easy on your gut. WELL cooked foods. No raw carrots, coconut, nuts & stuff like that. Easier on your gut would be nut butters.... peanut butter, cashew butter, almond butter etc.... It's sort of like being a baby ---  soft, easy to digest foods. Bone broth is a great healer for you gut & extremely nutritious as well as being easy on the digestion. Here's just one recipe: http://wellnessmama.com/5888/how-to-make-bone-broth/
    • Food tolerance issues post-diagnosis
      Thanks for the tip! Will try that out in the next few days. By the way, has anyone had any joy with probiotics or digestive enzymes in terms of symptom relief/speeding up the healing process? I asked my consultant about this when I saw him last week and he said that some people find them beneficial while others don't, but obviously I'm keen to try anything that may help, with uncomfortable fullness/bloating/gas still being my main issue  - is it worth giving them a go?
    • Are The Following Gluten-free?
      I realize that this is an old thread but I would just like to say something about label reading. Just because a product says gluten free on the label doesn't mean that you don't have to read any further and can have complete trust in the product.  There are a lot of products that state that they are gluten free on the package and then you find out that they are processed in plants that also produce wheat products. If you are super sensitive, you need to know that information. I am afraid that there is no escaping reading labels in supermarkets unless you know that the company makes it's products in a truly gluten free environment (even then you should read labels because ingredients can and do change, even in products made in gluten free facilities), It's a pain to stand there and read labels but if you are super sensitive, you might just have to do that. For example, I am gluten and lactose intolerant but also sensitive to nuts and sesame. While it may be fine for other gluten intolerant people to eat something that's labeled gluten free which is produced in a gluten free facility that also processes nuts, for me it is not.. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,753
    • Most Online
      1,763

    Newest Member
    The sweet cheeks
    Joined