Thursday, April 16, 2009

Let's Do Free Lunch

Tonight there are going to be Zpizza samples at the Greater North Raleigh Celiac Support Group.  That's pretty cool; I do believe I will stop by.

However, I've had Zpizza a few times since I originally tried it, which you can read about here.  Mostly it's been at the place where I work (my day job!), a physician's office.  Maybe you've heard about this?  Every single day, drug reps bring lunch to every single doctor in America, it seems.  Each lunch is a presentation, in which the drug (SALES) rep goes over the selling points of each drug, clinical trial data, etc.

I have been very flattered that many times these very nice people remember I am celiac and bring me gluten free lunch items, including Zpizza and Whole Foods baked goods.  This is so cool.  But then I keep having this thought:

WHO IS GIVING PRESENTATIONS TO DOCTORS TO ENCOURAGE THEM TO DIAGNOSE CELIAC PATIENTS?  WHO IS REMINDING THEM OF THIS WIDESPREAD CONDITION, THAT IS NOT TREATED WITH DRUGS?

I was absolutely appalled when at her Raleigh presentation Jules Shepard said medical providers she'd spoken with had told their patients "you don't want to be diagnosed if you're celiac."  So why aren't we taking them our best GF items, so they will have the courage and frequent reminders to screen our undiagnosed brothers and sisters?  

Which of our awareness organizations might want to get a program started, do you think? Does anyone know of people doing this or any current programs in place?  Please comment or email me thoughts on this.  I just hate it that people are suffering unnecessarily.  

8 comments:

  1. Thanks for bringing this up.

    I think the reason for her statement (I love her mixes BTW) is that currently, from an insurance perspective, it is cheaper to be undiagnosed and self treat than to be diagnosed and have the exact same treatment. Being officially diagnosed results in either denied insurance or inflated premiums. Therefore, having plausible deniability (no positive blood test and biopsy) is a lot cheaper with no deleterious results as opposed to being diagnosed and paying more. Until either regulation(not my fav since I have a libertarian streak) or commercial(read pharmaceutical) drives changes insurance policy, I agree that it is better to be undiagnosed than wearing the red "CD". My rant is now over... Great topic for discussion! Thanks!

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  2. Hmm. But are MD's even thinking of telling patients about CD on the down-low (underground)? How are people ever going to find out how to get well? Most people trust their doctors...

    And why aren't insurance companies rewarding us for our celiac diagnosis--realizing that in the long term we are circumventing many other chronic diseases (autoimmune, etc)?

    Do they think we can't stay on the diet? Do they think we really want to feel horrible...?

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  3. A number of years ago I got very sick after a dinner at home. Garlic soup (lots of croutons) and followed by a cream pie (lots of lactose) I can't remember the rest. In and out of doctors, I rattled, so many pills.

    After 14 days of in/out doctors I brightly said "Do you think it may be some sort of food intolerance" (Duh!) Doc said maybe, just eliminate stuff. I did and found out that by eliminating gluten and cutting down on lactose I got better.

    Doc, after me self diagnosing etc, sent me for a blood test, hey negative, no antibodies. No you are NOT Coeliac (celiac). By not being diagnosed I am restricted from accessing many gluten free resources in Australia where I live. I have decided that I will NOT go off Gluten Free diet just to make sure I have anti bodies and it is detectable, recent specialist advise says I would have to go off for 6 mths or more before the blood test shows and then a biopsy.

    So is it worth that. A resounding no.

    Fortunately I maried a naturopath and herbalist who gives me daily support, understanding and help. We don't have the same insurance problems that reading your comments many others do, particularly in the US.

    Traveling is still an issue for me as I travel to many places where language and understanding are a barrier. I still get "wheated", it knocks me about and then affects other things like type 2 diabetes.

    Love the info you guys share and looking to try and gather others here in Australia and New Zealand to share info also.
    Thanks
    Greg

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  4. Interesting topic! I am undiagnosed. I was doing the GF diet for six months before I thought to get tested, so of course my antibodies were normal. As far as I know, the treatment is the same whether you are diagnosed or not. My doctor agreed that as long as I'm doing better on the GF diet than eating wheat, I should keep doing it. He didn't want to put me through 6 months of misery just to have a diagnosis. The down side is that people, even celiacs, sometimes doubt my need for the diet. I am learning to disregard the opinion of others. My biggest worry is that I may someday need the diagnosis to get my diet met for a hospital stay or other emergency. I hope I never go to prison! They probably don't have GF food there. I'll be good.

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  5. Hi! I just discovered your blog. I too am a GF travel queen. I am on tour with a Broadway musical. In my humble opinion, I went GF and will never go back just for testing. It took me 2 years to finally heal. Plus, there is the whole insurance issue. I would like to keep my insurance!
    Love your blog! I will be back!

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  6. I was told by the doctor on the "down low" about my diagnosis. I don't have a positive diagnosis but we know I have it because of all the symptoms. Especially the rash we all love. But I didn't get the biopsy because I didn't want to start eating wheat again, we do know I'm allergic to it, but my doctor said I didn't have to be "diagnosed" to treat. So I didn't.
    I have enough trouble with insurance on other fronts because before this they said I had fibromyalgia, which now we know I don't.

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  7. Thank you, everyone, for the comments! Yes, going off the diet even one day isn't worth it.

    But does not having a diagnosis limit our credibility (like Gina mentions)? I had thought so when I got mine. I felt like if I didn't get a diagnosis people wouldn't believe me. A lot of people didn't believe it was necessary for my mother to go on her yeast free, GF diet back in the early 1990s (for that story, see my latest post, "Hey Blue Cross, You're Welcome"). But her ovarian cancer never recurred...

    We all know the diet is effective, and we all know so many people have this problem. But it just seems so counter-intuitive to me to keep it all under wraps.

    Wish you all wellness! Thanks for stopping by my little blog. Please comment or write to me with your thoughts, I'm enjoying having this discussion going!

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  8. I agree that we should be diagnosed, it makes little medical sense to not be. You would think accurate numbers would be useful for calculating the breadth of the entire Celiac population. However, given the choice of potentially being denied health insurance or paying extraordinarily higher fees, on a personal level I can't say that it is the correct thing to do (I am diagnosed BTW)

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