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Baddfrog

Is Health Or Life Insurance A Problem With A Celiac Diagnosis

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Hello,

Has anyone out there regretted getting an official Celiac Diagnosis due to the problems they have had with Life or Health Insurance? My blood test was a strong positive but it seems that wouldn't be enough for an insurance company to increase my life insurance premiums...considering most docs won't diagnose celiac with that.

So if anyone out there has increased their life insurance and had issues with the Celiac diagnosis I would really appreciate it. The more responses the better!

Thanks,

Scott

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Hello,

Has anyone out there regretted getting an official Celiac Diagnosis due to the problems they have had with Life or Health Insurance? My blood test was a strong positive but it seems that wouldn't be enough for an insurance company to increase my life insurance premiums...considering most docs won't diagnose celiac with that.

So if anyone out there has increased their life insurance and had issues with the Celiac diagnosis I would really appreciate it. The more responses the better!

Thanks,

Scott

In the past I've heard of this being an issue. I know there's another post on this section that strongly relates, so you should check that out.

I tried to get an official diagnosis because I'm in college, and having a diagnosis would have meant I could get support from my school's disability center, which would have allowed me to get support from professors in case of me getting sick and being unable to go to class. That, and I think it's easier to talk to new doctors about gluten issues once you have something more official.

However, I had the blood work and the endoscopy come back negative for celiac. My main doctor feels strongly that I should adhere to the gluten-free diet, and while she can't "diagnose" me, her opinion is that I still have celiac disease. She says that the tests are inaccurate, and since my grandmother has it, I have the symptoms, and they clear up when I stop eating gluten... odds are it's celiac. It works out in the end, because I have her support in this, and I know she'll approach other things from the standpoint that I already am I celiac. Most of my professors have been willing to work willing to work with me, even without the backing of the disability center. I've been lucky enough to have bosses that understand, too. In fact, I worked at a massage clinic where alternative diets were really common anyway, and so giving up gluten and reacting strongly to it didn't seem out of the ordinary. I had another boss where I worked over the summer who also had celiac disease, so obviously she understood. She also brought me gluten-free cookies sometimes, bonus!

I'm starting to think that for most of life's daily activities, an official diagnosis is really unnecessary. Your bloodwork was positive, and my understanding is that a positive MEANS your celiac, period, whether or not the medical community recognizes it as a diagnosis. YOU know and your doctor knows what this means. If you ever need to go to a different doctor, you can say that your bloodwork was positive for celiac and that you feel better on a gluten-free diet. This bloodwork should show up in the paperwork that you transfer over.

When I'm at school (out of town from my regular doc), I go to another clinic in town. I usually just explain that I don't eat gluten, my tests came back negative, but I still feel much better without gluten. Most doctors have been really understanding about this, as well. Worst case scenario, I just tell them that I'm intolerant to gluten and don't eat it, and that works, too. This has worked in cases where the doctor is skeptical of celiac... I can just say that both my regular doctor and my gastroenterologist agree that I should avoid gluten, even though my results were negative.

In my opinion, there seem to be more negatives to having a positive diagnosis than positives. I've heard of a lot of insurance horror stories and whatever else that I just don't think it's necessary for me to pursue getting one. I know what the problem is, and I don't need a doctor's approval to fix it. It's not like we, as celiacs, need prescriptions for our condition, so we don't need to rely on the medical community to think of our cases as being "legitimate".

For some people, the being diagnosed makes them feel like giving up gluten is easier, or like it's not in their head. For others, it doesn't mean much in the end. I don't need to prove to the people around me that I have celiac and my doctor says so. I know I feel better with out gluten, and I don't need their approval to continue with my way of life. I'm afraid of getting nailed with high insurance fees for celiac... I know what's wrong with me and I know how to fix it, I don't need the insurance companies knowing what's wrong with me, too, if it means I'll get charged up the butt for it.

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Anything is a problem with getting health insurance, if you are just getting your own. You could have had a hang-nail 10 years ago and they'd deny you. Seriously, it really sucks.

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I have not sought an official diagnosis because, as a retired lawyer with a lot of negative experience with the insurance industry (and also as someone who knows from personal experience how tenuous health coverage is when you're not in a group plan), I don't want to take the chance of being denied coverage, or terminated from my individual plan, now, or somewhere in the future. I also have a long-term care policy which I may not have gotten if I were diagnosed. I don't need the official diagnosis: I am 99.9% sure I have celiac disease, both because of the nature of the symptoms I've had and my miraculous recovery from most of them since I became completely gluten-free last February. If I seriously need to test the waters, I can always revert to a gluten-filled diet and see what happens. But why bother? I'm so incredibly relieved to be without the pain I had (and the dermatitis herpetiformis that drove me crazy with itching), and eating gluten-free is not that difficult once you get the hang of it -- well, at least for those of us whose kids are no longer living at home. So I can't see the advantage of a diagnosis as a general rule. There may be specific situations in which it might be helpful or necessary.

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I know it can be a problem if you are trying to get private health insurance. My husband was going to take a new job, but it was with a small company that only offered to contribute to private health insurance. There were 3 companies to chose from, two of which flat out refused to cover my Celiac daughter. Aetna would cover her, but at a higher premium. So now my husband is stuck in his job b/c it's a group plan, has decent rates, and is the same company that we had prior to her diagnosis.

I know not all people agree, but having a Celiac diagnosis for my child has not helped us in any way shape or form. Once she was diagnosed, we were told to put her on a gluten free diet, and check back in 6 months. We now see her gastro once a year for a weight check and to ask if I have any questions (most of which he can't answer anyway, lol). That is hardly worth the insurance hassle she will likely have the rest of her life. Just my opinion for what it's worth!

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If you have a firm diagnosis of celiac disease, the insurance companies see you as high-risk. and mark you up accordingly.

Remember the University of Chicago study that came out in 2006 and said that it takes an average of 11 years to get a diagnosis of celiac?

Well, that's 11 years of doctor visits, tests, and expensive (and totally unnecessary) medications, as well as 11 years for more and more related autoimmune conditions (also misdiagnosed and expensively medicated) to crop up.

By the time you've gotten to the diagnosis after 11 years, a lot of bloodwork and an expensive endoscopy/biopsy have been performed. Post-diagnosis, many doctors want a repeat biopsy and more bloodwork, as well as follow-up appointments.

And all for something that needs only a simple diet change at the first onset of symptoms! :ph34r:

So far, there is no punishment from the insurance industry to have "gluten intolerant" on your records--I'd stick with that.

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I just recently got life insurance. I am 25 and was diagnosed with celiac over 2 years ago. The underwriters said I was low risk and my life insurance is 10 dollars less a month than my husbands is. Not all life insurances will give you a hard time about it, I'm sure some will- you probably just have to look aroud a bit. I got my life insurance from RiverSource.

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Curious -- might this also vary by state?

Anyone know anything about that?

If you were able to get life / health insurance with no issues and an 'official' Celiac dx -- what state are you in, and what company did you go with?

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I am very glad to read this thread just now. We need insurance problems slightly less than we need to remove one more food category from our menu.

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We just got life insurance now and it wasn't an issue at all. We got it through Lincoln Benefit Life (an allstate company).

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