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."

Celiac.

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.

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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!

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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 Cost of Undiagnosed Celiac Disease

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.

Thoughts?

Free Beer and Pizza!

It's hard to imagine getting up on purpose on a weekend, but this time was really worth it.  I went to the Jules Shepard baking demo at Earth Fare, organized by Zach who writes the Gluten Free Raleigh blog.

I got to meet some new people, and reacquaint with other nice people I'd already met from the Raleigh Celiac Support Group.  It's so fun to talk with people who are all in the same boat.

Jules was nice and gave a well-informed presentation.  She is the real deal--nice to hear from someone who is walking the walk.  She said she's been GF since 1999.  I especially liked how she said she takes her baked goods to share with health care providers, so they can be aware that eating GF foods can be just as good, or better than, evil-wheat-containing foods.  I was appalled when she mentioned that she's heard doctors tell their patients they "don't want to know" if they're Celiac, because they think the diet is awful.  A doctor like that might try to convince the patient to not get tested.   Unbelievable.

She baked us some bread, oatmeal scones, berry scones, and chocolate chip cookies.  It was all pretty good.  I would want to try the bread machine recipe at home before I weigh in with an opinion on it.  You don't know how bread really turns out until it cools, and she sliced it before then.  It seemed a little on the moist side, and it was still warm, so it's hard to tell.  I will continue to experiment with the man in my life--Breadman, that is--and let you know if and when I find the holy grail of bread recipes.  I am still searching.

Trevor from Bella Monica was there to promote his flatbreads, and give samples!  It is really good.  I read the box, it seems like a lot of calories are packed into the portion size (1/3 flatbread--had about 450 calories, 7.4g saturated fat).  I really try to shy away from high calories and fat, but it has very good quality ingredients like olive oil, so maybe it's not as bad as it sounds to me?  And a treat once in a while is a good thing!

They also had Green's Gluten Free Beer, an amber and a dark variety.  I liked the dark one, to me it was robust and flavorful.  The amber was OK.  But all of this was sampled with scones and bread, so hard to give a thorough review of those.  

It was a fun day for me. Earth Fare also gave us a tour, but the real value of the day was hearing what Jules had to say, and talking with the other participants.  I thought it was really cool how Jules said that she was a gluten free consumer too, and wanted to find quality products and ingredients.   She also wasn't pushy with us to buy her products (which I didn't buy).  She even encouraged us to look up her flour blend and make it ourselves if we were so inclined.  I appreciated that a lot.

Hope everyone has a great GF weekend!

Happy Weekend from the Underground!

Hi Everyone,

Thanks for stopping by. I hope at some point I may have some helpful info for you here. If we all share, we can all learn, and I'm so excited about this.

Please be patient with me as I learn to manipulate the blog settings to be most user-friendly. For example, I just learned, a few minutes ago, how to unlock the comment settings so it will allow anyone to leave a comment.

If you have any thoughts or comments, either about this blog itself or the content within, please do not hesitate to email me at: celiacunderground@gmail.com

Have a great day!
Emily

Introduction

Hello there and welcome to the Underground! My name is Emily, and I'll be your guide on this delicious journey.

Since I got the idea to start this blog I have been very excited about sharing some of my tips and tricks for keeping up with a busy lifestyle while maintaining a gluten-free diet. I have some great news: It can be done!

I have some more great news:
It doesn't have to be expensive!

My training in the Arts has taught me to be a creative problem-solver, and I have a lot of helpful hints that I can share, that I hope will make your adjustment to living on a gluten-free diet easier and happier.

One of the things I have learned in my life is that if you have the desire to achieve or become something, and commit to the learning process, nothing can stop you. Being a happy, healthy Celiac is no exception. Many of my gluten-eating friends will vouch for the delicious foods I make and share with them. Simple and fast recipes. Life has never been so good--eating well and feeling well, what more can we ask for?