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Celiac Disease and Health Insurance

Posted by nepeht on January 14, 2009

  Four words: Celiac Disease & Health Insurance

  Oh boy… did  your blood pressure just go up?  Mine does every time I even think about this combination of words.  

  For years, people with Celiac Disease have been talking about having to pay higher “premium” rates due to disclosing to an insurance company (healthor life) that  they had been diagnosed with Celiac Disease.

  To quote from a response to such blog entries on

“Yes, it is my understanding this is common. It can be very difficult to get life insurance once diagnosed with celiac disease. Same can be true for health insurance. it’s just a bummer, but all you can do is shop around” (Retrieved from, on Jan. 14, 2009).

  It appears even contactuing the State Insurance Commission Office yields no help.

  Sadly and with all due respect, I have to point out that this very thread of conversation on evolved (or) devolved into an open discussion about how avoid such problems by NOT report ing such health problems to the Insurance Agency.  I mean, I really cannot blame these folks for these propositions, but am I the 0nlyone here who is noticinghow otherwise good, upstanding Americans are (having to) resort(ing) to essentially “fraud” in order to obtain insurance coverage due to what appears to be health-status discrimination by the very companies who operate with the mission of preventing and fairly addressing health problems?

  Then last week — years later, I saw a blog header: “Denied for Health Insurance”, where the author wrote:

“Just an FYI that I am currently shopping for health insurance. I was sort ofdiagnosed with celiac’s 18 months ago, my testing was all negative, but gluten-free diet has changed my life. I reported to the health insurance company that I had been tested (had to divulge the upper GI) and that I had celiacs, even though the medical tests were negative. Big mistake. I was denied coverage. Denied. I am now appealing the denial.

I just want people to know that this can happen” (Retrieved from, on Jan. 14, 2009).

  Within a few hours, a blogger’s response was:

Thank you for posting this. This is one of the reasons I have turned down further testing for myself. We all know that the health insurance industry’s primary concern is $, not health.”

“If you have not reported anything in writing, but only over the phone, your best bet might be to ask to speak to a supervisor and say that you were given erroneous information by the doctor’s office, which you then passed on to whomever you spoke to at the insurance company, and that [i]you do not in fact have celiac[/i], and that your medical records will support this.”

“Even if you did fill out and sign a form in writing, write another, and tell them that you just found out that you had been given wrong information by the doctor’s office, that they told you you had celiac so that you would stop eating wheat, which gives you problems, but that your bloodwork (attach a copy) was negative, so, by current medical standards, you don’t in fact have it.”

“Good luck, and please keep us posted!”  (Retrieved from , Jan. 14, 2009).

  Does anyone else see a pattern here? 

  I post this with respect and in fact, blanketed compassion for all of the bloggers I have quoted here.  I cannot blame them for their reactions, nor for the overwhelmingurge to wax like some lawyers with half-truths and non-disclosure tactics.

  Clearly, I am not the only one of us who gets an instant blood-boil upon hearing the words, : Celiac Disease & Health Insurance

  I guess I am somewhat desensitized as I have been hearingsuch cutting terms as “pre-existing” condition since my first Crohn’s surgery back in the very early 80’s.

  One of the reasons I studied Social Work was to learn ways of bringing change to a system that seems (to me at least) to be unfair.  And changes have come about over time.  But perhaps more change is needed…

  About a year ago, Nancy Lapid published an article asking: “Should Insurance Companies Have to Reimburse for the Extra Costs of Gluten-Free Food?”  (Retrieved from, on Jan. 14, 2009).  Naturally, this led to quite a spirited interaction of commenters at a special link:

  One person even wrote… and you best prepare yourself for this one even though I would bet you already know it’s coming:

“Talk about people milking the system.
How dare these people think they are entitled to a payout for this.
This is why insurance rates are so high.

All they have to do is avoid certain foods. Yet, they are taking advantage of the system.

Comment by Alison – January 28th, 2008 @ 10:13 am” (Retrieved from, on Jan. 14, 2009).

   And then, of course, there are other angles, such as this which was submitted to the Lapid article’s comment thread at that time by a person who has her own Gluten-Free Blog at  She wrote:

As a person who lives a gluten-free lifestyle by medical necessity I would not expect my health insurance company to reimburse me for any portion of my food costs. I have a great relationship with my health insurer and they provide me with everything I want/need from them, namely: coverage for doctor visits, medical tests, lab work, medications (though I take none on a regular basis), and coverage for (heaven forbid!) emergencies, hospitalizations and surgeries. I am lucky and very grateful for the coverage that I have” (Retrieved from on Jan. 14, 2009).

  And finally, yet another whole side of this issue that really needs attention, but is often totally overlooked.  The headline from one month ago read: “I think my husband has Celiac’s disease, and we have no insurance. Can you offer me some advice?” and a pull quote that sums it up would be:

“i just feel so lost without the guidance of a doctor. i’m so upset that the economy is the way it is, and we can’t afford to see a doctor. but this is our situation. he and i rarely even get so much as the common cold, so i was surprised when he began developingthese symptoms. i wish i could get a professional in here to diagnose, but we won’t even be graduating for another 2 years. we’re just hopingeverything goes ok” (Retrieved from, on Jan. 14, 2009).

  If one looks at the “Best Answer” posted below the above entry (which I will purposely NOT quote), one might see just how crazy this whole thing has become.

  According to another site ( and blog ( Obama should have beenthe Presidential choice for all people with Celiac Disease because:

“If I had to choose just ONE issue that was important to anyone with Coeliac Disease, it would have to be that of Health Insurance and especially being able to obtain health insurance that includes mandatory and guaranteed Preexisting Conditions Coverage” (Retrieved from, on Jan. 14, 2009).

  Oh, I could go on and on with this, but I am not sure if I go any further at this point if it would really make a difference.  I can say that like many of us, I do hope that this politician is able to find his way through the murky waters of the D.C. Beltway in order to make at least this one very important campaign promise come true.

  I imagine if there really is a sincere push legislatively to get this done and if it ever looks like it can be successful, we will then hear policy statements and proposals Ad nauseam from the varous insuance companies telling us how they just love people with Celiac Disease…. and on and on and on and on and on….

  Perhaps you wish to make a difference regarding this issue.  One way to start could be to look up the Celiac Disease Center at the University of Chicago: .  They probably have some ideas.  And there are likely to be many other such resources around for those who are interested.

  Are you interested?  I mean, if nothing else, perhaps some day we could view those words: Celiac Disease & Health Insurance … in a nice shade of soothing Blue, instead of red.  Wouldn’t that be nice?  I don’t know, whatdaYouthink?


2 Responses to “Celiac Disease and Health Insurance”

  1. Lisa said

    Every May is Celiac Disease Awareness Month. Organizations, such as yourself have been the catalyst for such high awareness, but as you know this can not be the only time we think of this disease. is dedicated to spreading the awareness for the Celiac Disease, causes, preventions, symptoms, and of course treatments. Through our disease profiles we have been able to work with several elite non-profit organizations. Now we want to work with you. If you could, please list us as a resource or host our social book mark button, it would be much appreciated. Let’s create a medical breakthrough, through established awareness.If you want more information on that please email me back with the subject line as your URL.

  2. Bhamun said

    Hello! I’m new here. Just wanted to say hi

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