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

Private Insurance Coverage


pellegrino

Recommended Posts

pellegrino Apprentice

I'm 26, was recently diagnosed with celiac disease, and have insurance coverage through my employer. But, someday I would like to start my own business, at which time I imagine I would have to purchase private health insurance.

I was talking with a friend of mine about this and she asked if celiac disease is a pre-existing condition. I found two threads on here discussing this topic, but I didn't see any posts from anyone who had actually tried to apply for private health insurance, detailing the costs and the experience.

Will they refuse to sell you coverage, or will they just charge you extra for it? I know private health insurance is insanely expensive anyway. I don't know much about pre-existing conditions and private insurance, because I've always been covered by employers. From what I understand, an employer can't refuse you coverage because of a pre-existing conditon. If this is in fact true, that's good to know.

If celiac is indeed considered a pre-existing condition when trying to apply for private insurance, which I imagine it is, well that just blows. What also blows is that insurance companies don't typically cover visits with nutritionists and naturopaths, two people who - in addition to conventional doctors who had me get a bone density scan, a CT scan, etc - have been very helpful when it comes to celiac disease. When the one disease I have requires me to change my diet, and my insurance company won't pay for me to see the one person who can help me with that - a nutritionist - that's just messed up.

I don't know a whole lot about universal health care either, besides what I learned from Michael Moore's film Sicko - which of course was very biased - but since being diagnosed with celiac disease I think I'm for it. Especially after spending hours on the phone playing middle man between insurance companies and allergy testing labs, etc. etc. In a universal health care system I doubt I'd have to do that. If I was sick, I'd get the tests I needed, and that would be it.

Can anyone recommend any good books, or other resources where I could learn about the benefits and downfalls of universal health care? Particularly the benefits. I don't like the idea of our goverment controlling health care, but if it would mean people who are actually sick and need coverage (and I'm now one of these people) wouldn't be refused because they've had the misfortune of being diagnosed with a health condition, well then that would be a good thing.

I didn't intend for this post to start a univeral health care debate, I'd just like to hear from some celiacs who've tried to apply for private insurance coverage. But if you want to add your two cents about universal health care, well then I could probably learn from it.

Thanks.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Some folks on here have noted problems getting private insurance with classically diagnosed celiac, either not being able to obtain coverage or having to pay more. That's not everyone everywhere, but sometimes. Of course, if you end up getting married, you may be able to get coverage if your spouse has employer provided health care. Not exactly something to count on, of course. ;)

As for universal health care - it means every person is covered, not every test needed is given or every practice is covered. It can be set up in a myriad of ways, and if our medical community doesn't value the advice of a nutritionist (and, quite frankly, from the experience of most people here, the majority of them wouldn't help you with this diet anyway and may end up giving you bad advice), they're not going to give it coverage in a universal health system. Just like private insurance systems vary (some do offer coverage to naturopaths, for instance), universal health care systems vary as well. It'll be an improvement for some, a step backwards for some, just a plain ol' lateral difference for some, and no change for others.

2kids4me Contributor

pre-existing condition in terms of insurance means any medical condition that was known to the patient at the time of application for insurance coverage.

Otherwise I cant be of much help - I live in Canada and we have universal gov't health care. Private businesses often have separate "health benefit" plans... a certain amount of money is set aside for an employee and that money can be used for dental or medical..once its gone then its gone for the year. (lets say $2000 is set aside, and you need 2500 - the 500 would be out of pocket.

Sandy

Nancym Enthusiast

I got denied health insurance for having had a thyroid disease (which was treated 20 years ago and not an issue) and having very minor arthritis. I assume it is probably extremely hard to get private insurance if you have any issues at all, and that would include celiac disease.

You might look into HIPPA and see if that applies. I think it is about converting your work insurance into private, but the cost could be horrific.

brenda in northcarolina Newbie

I was recently diagonised with celiac disease,I had this as a child but thought i had grown out of it.

6 months ago I began having severe stomach pain , enough to require pain meds. the doctors began testing for divertilosis, IBS etc , after the colonoscopy and bioposy celiac was confirmed. Now my insurance is saying this was pre-exting and are tryingto stick me with bills totaling more than 6 grand, any advice?

DanaRyann Newbie

My husband opened his own business a few years ago and we did the insurance search. I was diagnosed 2 years prior to this. We ended up with Blue Cross PPO, they didn't say a thing about my Celiac's disease. We pay $545 a month for a family of 5. I get my bone density scans from my OB/GYN's office and I just pay a small portion out of pocket. Now, the down side is I haven't had a colonoscopy on this plan, and my GI doctor said I need one. I guess I'm about to find out what that's gonna run..... I hope I helped a little...

kbtoyssni Contributor
I was recently diagonised with celiac disease,I had this as a child but thought i had grown out of it.

6 months ago I began having severe stomach pain , enough to require pain meds. the doctors began testing for divertilosis, IBS etc , after the colonoscopy and bioposy celiac was confirmed. Now my insurance is saying this was pre-exting and are tryingto stick me with bills totaling more than 6 grand, any advice?

If there was a way you can prove a doctor told you that you could go back to eating gluten, that might help. It might have been a verbal thing, though. I imagine that unless you're still seeing the doctor you had as a kid, though, those records might be destroyed. Although, if your insurance knows that you were diagnosed as a kid, how did they find that out? How was diagnosis preformed as a kid? Biopsy? Blood test?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



brenda in northcarolina Newbie
If there was a way you can prove a doctor told you that you could go back to eating gluten, that might help. It might have been a verbal thing, though. I imagine that unless you're still seeing the doctor you had as a kid, though, those records might be destroyed. Although, if your insurance knows that you were diagnosed as a kid, how did they find that out? How was diagnosis preformed as a kid? Biopsy? Blood test?
brenda in northcarolina Newbie

I don't think anyone told me to eat foods containing glutten i think it just happened over the years sort of like cancer bening in remission for 20 plus years i ate what ever i wanted nothing seemed to bother me then about 6 months ago it came back with avengance i had no idea what it was at first i just knew i was suddenly very sick, i don't know a single person that has this disease. i'm from a very small town and most people have never heard of celiac, any way i don't see how the insurance company can say i knew about having this when it hasen't botherd me in over 20 yrs. surely there must be something i can do!!

mommyagain Explorer

I would definitely try to fight that... 20 years ago doctors routinely diagnosed celiac in children and then told the parents that kiddo would probably outgrow it. Now we know that celiac is not something you can outgrow... sometimes the symptoms go away for a while... but you never outgrow it.

Are your parents still around? Would they be willing to state that they (and you) were told by your doctor that you would outgrow the celiac, and at that point could go back to eating gluten?

How does the insurance company know that you were diagnosed with celiac as a child?

Candy Contributor

celiac disease is inherited - if that can be called pre-existing. I didn't notice it until I was 28,or so years old.I'm in pretty good health,but fatigue,and bone weakness,and our dietary needs have to be acknowledged and considered by others;I'm more paced and careful now that I know what I've got-I don't just run out and do all sorts,so it helps to be somewhat independent, financially and physically,from group constraints,where people don't have your same needs.

Health-Care wise , if they treat other conditions,espically diabetes , and other more severe and inherited disorders then why can't they treat Celiac Disease ? It's treatment is mostly dietary and through management , and I thought I read about something prescribed to make Celiac bones stronger,but I don't remember where or when I read it.

Centa Newbie
pre-existing condition in terms of insurance means any medical condition that was known to the patient at the time of application for insurance coverage.

I researched an insurance policy for a friend of mine who had no health insurance and a very long standing congenital health problem, and that's the definition that was used.

The policy we were looking at specified that "pre-existing" meant that the medical condition had been formally diagnosed by a doctor. In that policy, there was a waiting period of a year, before that problem would be covered by the policy, but he could use the coverage for new health problems that came up, immediately after he started paying premiums.

It may be that you have to read the fine print, and that health insurance policies by different companies differ.

I think I've read, too, that state laws regulating health insurance companies differ on what they require companies to do regarding pre-existing conditions.

brenda in northcarolina Newbie
celiac disease is inherited - if that can be called pre-existing. I didn't notice it until I was 28,or so years old.I'm in pretty good health,but fatigue,and bone weakness,and our dietary needs have to be acknowledged and considered by others;I'm more paced and careful now that I know what I've got-I don't just run out and do all sorts,so it helps to be somewhat independent, financially and physically,from group constraints,where people don't have your same needs.

Health-Care wise , if they treat other conditions,espically diabetes , and other more severe and inherited disorders then why can't they treat Celiac Disease ? It's treatment is mostly dietary and through management , and I thought I read about something prescribed to make Celiac bones stronger,but I don't remember where or when I read it.

brenda in northcarolina Newbie

Yeah I seem to be in fairly good health except for the celiac and everyone tells me it is inherited but i havent heard of anyone in the family with this disease i still know almost nothing about it except avoid a million diffrent foods, i have no insurance[ i lost it about the time i was diagonised] so i dont go to the doctor and since im from a small town i havent met anyone else with celiac i would love more info on this as far as the insurance goes i thought you had to be aware of a condition for it to be pre-exiting i really had no idea ... i have eaten ANYTHING i wanted for 20 plus yrs with no problems except an occassional tummy ache then bam im sooooo sick for 3months before bening told its celiac.

SillyBoo Newbie

When I left my job several months ago, I looked into private insurance, to see if it might be less expensive than going with my husband's plan at work. I went through an insurance broker who also has Celiac. She researched like crazy, and came up empty-handed. She said that with a Celiac diagnosis I was "uninsurable". So, the kids and I are on hubby's group plan. And the insurance broker (newly diagnosed) was not a happy camper either.

I'm sure that's not what you want to hear, but that was my experience. It seems so ridiculous. Although I have felt like hell a lot this past year, since my diagnosis, my medical costs are next to nothing. It's all about diet, as we all know, and allowing for healing to take place.

Good luck!!

brenda in northcarolina Newbie
When I left my job several months ago, I looked into private insurance, to see if it might be less expensive than going with my husband's plan at work. I went through an insurance broker who also has Celiac. She researched like crazy, and came up empty-handed. She said that with a Celiac diagnosis I was "uninsurable". So, the kids and I are on hubby's group plan. And the insurance broker (newly diagnosed) was not a happy camper either.

I'm sure that's not what you want to hear, but that was my experience. It seems so ridiculous. Although I have felt like hell a lot this past year, since my diagnosis, my medical costs are next to nothing. It's all about diet, as we all know, and allowing for healing to take place.

Good luck!!

brenda in northcarolina Newbie

If celiac is all about the diet then why are we uninsurable are there more long term effects i should know about ? as I said i know almost nothing about celiac, i would love to know more ... where do you get your info? from a doctor or other health care provider? ther are no support groups whereI live I'm about 2 hrs from asheville [the biggest city].

tarnalberry Community Regular
If celiac is all about the diet then why are we uninsurable are there more long term effects i should know about ? as I said i know almost nothing about celiac, i would love to know more ... where do you get your info? from a doctor or other health care provider? ther are no support groups whereI live I'm about 2 hrs from asheville [the biggest city].

because compliance rates on the diet are notoriously hideously low, and the insurance companies have absolutely no way of tracking how well you are staying on the diet, unless you hit them with large bills. well, they haven't come up with a way, yet, but I bet they could if they got creative.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.