Celiac Panel Now Rejected For H. Insurance

[Mom to Many]

My daughter Kimiko had a blood panel for Celiacs the last month we had health insurance. We new we were losing it, but having had no experience with insurance problems we did not know we were being unwise in testing her. We thought health care was to help you... We were naive about insurance companies.

We have now been denied insurance for our family, now that we have a preemie, a celiac and a child with kidney reflux.

Anyway... My husband will have to seek other employment so that we can get group insurance offered through an employer instead of seeking private insurance. We are going to take advantage of the fact that they cannot deny us with group insurance.

We are gearing up to start her on a gluten free diet now. We did some shopping tonight in prep.

Is there much hope with insurance? Or will this follow Kimiko forever? Can it kind of sink out of sight eventually? She had some elevated levels and the Dr. thought that it looks like she has celiacs. How do you out live the diagnosos so to speak? Do we just sweep it under the rug as years go by? Call it a food allergy? How have you all handled this?

At least I was smart enough to hide my 3rd childs mild autism from medical people... It is not on record any place that insurance companies could find. So I have never admitted it. We have studied and sought private help with her issues. Do we have to hide now with Kimiko?

What do you think about this?

Another question- I was gluten free, egg free, milk free years ago even during college and Kimiko's pregnancy. (15 plus years ago.)

After Kimiko was born I seemed to not be tired anymore when I ate gluten. So, since I had not had a positive diagnosis I began eating gluten again and I have ever since. The only thing I see in myself is I sneeze terribly when I come into contact with whole wheat flour and white flour.

Marianne

Mom to Kimiko

[tarnalberry]

There shouldn't be any problem getting her coverage under a group plan at a moderately large employer - there are no screening requirements. But it can be a problem indefinitely for private insurance; some private insurance will always have an issue, some will say "we can insure you after a number of years gluten-free, and good test results", others won't much care. (It is, in my experience, often better to get insurance through your employer anyway - better coverage for less cost, but this is *HIGHLY* variable upon employer, and definitely something to consider as part of the benefits package in a job offer.)

[tiredofdoctors]

I agree with Tiffany with regard to getting a good employer. When were you eligible for COBRA? It is a continuation of insurance coverage -- which the company is mandated to offer by the government. You can stay on that (you have to pay the premiums yourself, though) for 18 months, I believe. If you have no lapse of time in between insurance coverage, the NEW insurance company cannot deny pre-existing conditions, and cannot have a pre-existing illness clause to make you wait however many months before covering those conditions.

If you have not been able to do that, then I would certainly tell your husband to look into working for a larger company. Small companies simply don't have the buying power it takes to get coverage for persons with pre-existing illnesses. Larger companies do. You may have a waiting period before the conditions are covered, but they will usually be covered.

Good luck to you . . . . it will work out.

Lynne

[Nancym]

I don't know what state you're in but in CA COBRA goes for 3 years now. We also have a "high risk" state sponsered insurance that is EXPENSIVE as all get out, but they won't turn you down. Hope you live in a state that is reasonable. And remember folks... these are the reasons we need to go to the polls and vote! If we don't make our voices heard by the bums that aren't doing anything to help us even GET the insurance it is only going to get worse!

[par18]

You say you were gluten free years ago? Was there a history of Celiac/gluten intolerance in your family somewhere? If so this would have been a good reason to have put your daughter on the diet before testing to see if she responded. If she did respond in a positive way then you would not have had to say anything to the insurance company. I'm not second guessing you and I know it must be hard to think about the possibility of having to put your daughter or yourself on this diet forever but if you give an insurance company "any" reason to raise rates or cancel they will do it.

Tom

[Mom to Many]

New development...

I finally got the rejection letter. The underwriter actually denied, me and not Julie as we had been verbally told on the phone. The only positive I see in this? My blood tests were negative. (In the sight of later insurance this is good.)

This could mean two things-

They may have looked at my Mother's medical records. She has celiacs and we have the same name and same doctor.

Or it was just a goof for who's name they wrote down.

But, since Julie now does not have to say she has been denied for insurance this will hopefully help her later.

Being an established adult, I'll have an easier time getting insurance through a group because of jobs even if it the rejection haunts me. Since my blood test results are on record as negative that will help too.

I wish I'd followed my own instincts and not done blood work. But, not knowing it could cause us insurance trouble I catered to my mother's hysteria that we could not just start the diet with out testing. Lol.

This may sound terrible, but I hope to insure her through group insurance, follow a careful diet and just let the diagnosis sink in her records by not mentioning it unless we have to.

I stopped eating gluten, eggs, milk, sesame seeds etc. years ago for a time trying to get food allergies straight and under control. It worked. Over time I added gluten back in without feeling the tiredness that I had felt previously. Milk and eggs were my big problem. Maybe I am a celiac, and I am just in denial, that is possible too.

[par18]

Maybe I am a celiac, and I am just in denial, that is possible too.

If this is true what are you going to do about it?

Tom

[happygirl]

A couple of things:

if it is Celiac, it is not a food allergy. it is an autoimmune response that attacks your small intestine and causes damage. now, people can be allergic to gluten/wheat as well, but it is a separate mechanism.

you mentioned that you sneeze around flour white and wheat flours. White flour IS wheat flour...just a different way of processing.

if she has celiac, she needs to be gluten free for life. if she has Celiac, she will not outgrow it. symptoms may come and go, but it doesn't mean Celiac is gone or that damage isn't being done if the symptoms aren't "as bad."

there are many people who don't have celiac, but are non-Celiac gluten intolerant. for whatever reason, they get sick from eating gluten.

if you have insurance from work, like mentioned above, you should not have any problems. I have been at two jobs since my dx 2.5 years and it is fine. I hope that your husband gets a job that will provide this for your family.

is your doctor knowledgable about celiac?

welcome to the board and we hope that we can help! happy thanksgiving to you and your family.