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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Does Diagnosis Get You Blackballed?
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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.

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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. 

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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.

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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.

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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...

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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  ;)

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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).  

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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!

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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.

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

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

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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 :)  

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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.

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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.

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