Tuesday, April 21, 2009

Hey Blue Cross, You're Welcome!

So there's been a little stir since my post Let's Do Free Lunch. The question I meant to raise was this: "If there are so many drug reps constantly encouraging MD's to prescribe their products to their patients, why aren't we making a clamour ourselves, educating and encouraging the medical community to consider symptoms as possibly indicating Celiac Disease (DH, or gluten sensitivity, et. al.)?"

My foremost thought when composing that short piece was that MD's could really be more aware of the wide spectrum of associated symptoms w/CD because so often people are misdiagnosed (and treated with unnecessary drug therapies).

I was undiagnosed probably about 12-15 years (prob. since middle school). Over all those years I was told:
  • "Here, take these Iron pills"
  • "You should work out more"
  • "I don't want to diagnose you with Chronic Fatigue Syndrome because it's not a real illness"
  • "Let's try Prozac."
  • "You have 9 cavities."
  • "Here's an extra antibiotic for your next (chronic) sinus infection"
The list goes on, but that gives you an idea. So I just accepted the fact that I was unable to stay awake an entire day, I could never feel energetic and happy, I was always sick all winter, I destroyed my teeth because I'm a jerk, I'm lazy and that's why I don't work out more, and so on. But I forged on, graduated from college with honors, and just worked as hard as I possibly could in life, trying to ignore how terrible I felt. Lots of caffeine consumption!

When I was in grad school, my mom mentioned offhand that a 2nd cousin of ours had received a Celiac Disease diagnosis after being very ill for many years. My response? Ok, whatever, mom, that's nice.

To back up a little bit, my mother had ovarian cancer in the early 1990's, and thankfully survived. After she had a year of chemotherapy, she saw a holistic MD, who prescribed that she follow a yeast-free, gluten-free diet. For many years (I think 5-7), she religiously stuck to this diet. We all thought she was crazy.

One day in 2005, I was at a Borders or B & N, and found a "Gluten Free Recipes" book on the sale table and picked it up for my mom, thinking it had to do with her crazy diet. Next time I was on the phone with her, I told her about it. She said, "Oh, that's what our one cousin has."


What is this "Celiac Disease"? (No doctor had ever told me!)

So because my life was boring, I started reading. And reading. And asking my mom about her problems, other problems in our family. (BTW, it's our Dutch lineage). Anyway, I made lists of my symptoms, her symptoms, autoimmune diseases that were rampant in our family (all thyroid, goiter, Hashimoto's, Sjogren's, Lupus, Cancer, skin rashes, chronic fatigue, depression, etc. etc.)

I'd try anything to stop being so tired.

I made an appointment w/the university clinic to get a lab test. They had no idea what I was talking about. I was prepared--had my lists and some printed literature. I was excited. It could be an answer, I'm not just a lazy jerk!

A few days beforehand I'd piled up on the gluten. Birthday cake (had the test a few days after my birthday), Lofthouse cookies, crepes.

I convinced the practitioner to give me the test. I had it drawn that day. She said, "this is amazing. Wow, I never really knew about this. Of course I can order this for you."

Right after the test, I immediately stopped eating gluten, but had to wait over a week for the result. By the 4th day, I felt better than I'd felt my whole life. So I made a batch of wheat flour crepes. To see if it was all in my mind, or what.

Wretched misery! I felt absolutely terrible--I couldn't think, I got all hot and feverish feeling, started scratching all over my body, and had to lay down I was so exhausted.

The result you know already: POS.

Gluten was killing me! I felt so betrayed.

That's my story. I'm pretty sure my insurance is aware of my diagnosis.

But I've needed fewer office visits, drugs, and I've been much healthier overall. And it's possible (or probable) that I'm going to avoid the mid-life cancers that many folks in my family have faced. Compared to cancer surgery, chemotherapy and all that, eating some GF pita bread is way cheap!


I told you all that to tell you this. My Let's do Free Lunch post started much discussion (by accident--but an important discussion nonetheless) about whether or not you ought to be diagnosed. And there is a problem that insurance companies consider this a liability, a "Pre-Existing" condition.

To that, I say, we must spread the word--our stories and the research. (I don't feel like it needs to be political in any way, just sharing the information...)

Check out this article:

The insurance companies could save big by encouraging diagnosis of this condition. The classification of this CD, DH (Dermatitis Herpetiformis), and gluten sensitivity as "Pre-Existing" conditions is just plain nonsense. We who are diagnosed want to be healthy, and strive to maintain our own wellness (the act of even finding out our diagnosis in the first place is a testament to that).

I think the best thing we can do is keep talking. Keep discussing. Share our stories. Get the word out. Help others live better lives.



  1. The saddest part of all our stories is the wasted years and the feeling that it's our lack of something that is the problem. It is amazing to me the emotions this whole diagnosis discussion brings up. I think modern medicine has only scratched the surface and we need to keep pushing for more research and better understanding. Keep discussing. :)

  2. Bravo! it's like hearing my own story except I went gf out of desperation before being tested so am considered a non-celiac by "the experts". I do have the celiac gene but that is not enough for the Docs to see it as conclusive.
    One yr of strict gf and I feel like a million dollars!

  3. Thanks to you both for the comments. It feels like I keep hearing the same story over and over, too. Hmm...

    Thanks to everyone for taking the time to read. Please continue to comment and email your thoughts, I love hearing from you.

    Best! Emily

  4. I was lucky - from first real symptom (heartburn) until diagnosis ~ 6 months. I had other symptoms most of my life but fortunately, nothing that ever really bothered me significantly (not that it did my body any good though).

    Educating MDs is entirely another matter. I have no direct knowledge however in my opinion, the issue of MD education (especially continuing education) needs to be addressed. I can't say how many times I've heard people say that their doctor said that Celiac Disease wasn't possible. What is necessary for items such as CD to make enough splash to raise awareness? I'd like to think the GF community can do it, however I think it will take something on the same order of magnitude as Lance Armstrong and his Livestrong campaign to make it into the public's (and medical community's) awareness.

  5. You're right. We're much healthier with our diagnosis than without, so that's better for insurance companies.

    I'm sorry you had to suffer so many years. Thanks for sharing your story.