Who can we trust to keep us healthy?

Hi everyone.

You may have noticed I've remained rather silent the past few months.  It's a combination of working a lot, many personal and professional commitments, etc.  But there is also a lot of soul-searching I've had to do about what I am doing here, with this blog, and how to do it best.

When I set out to start a blog about my experiences living gluten-free, I came with great excitement to my computer keyboard, full of the ideas that are working for me in my life, and wanting to inspire others that it IS possible to live a full life that is gluten-free.  To live a life that doesn't feel like something is missing.

That's still what I believe, and still what I'd like to do.

However, some of my faith has been shaken.  In the past year or so, it's really come to light that you cannot trust every product, you cannot trust every company, and we do not have stringent enough food safety and labeling regulations in this country to ensure that not all "gluten free" products can be trusted.  While I don't think it should be like this, I have to face reality.

Last time our celiac group here in Raleigh toured the Whole Foods Gluten Free Bakehouse, I remember that they were telling us that they test every single ingredient that comes in, and some have tested positive for gluten.  And they refuse to use, return these ingredients to sender and won't use their company in the future.  I applaud and am relieved by their diligence.

One of the earth-shaking experiences I've had in the last year or so was being duped by the gluten-free claims of Paul Seelig, who is on trial this week in Raleigh.  I was quite ill for some time, after eating wheat bread sold by this man as "gluten-free."  It is unfathomable to me that anyone would do such a thing, but the overall lesson from this might be that the world is still the world--some people are looking out for themselves, no matter what the cost to others.

So who can we trust?  Good question.  I don't have the answers.  I'm navigating through just the same as everyone else.  Quite frankly, though, I do not like the reality that it might be better for me to expect the worst, until proven otherwise.  For example, I'm so glad I can feel pretty confident about the Whole Foods Bakehouse items.  But I haven't toured every gluten-free facility and do not have that assurance from other companies.  So I guess a skepticism is healthy for my body.

Even more reason to keep eating the naturally gluten free foods--your vegetables, fruits, meats, rice, nuts, etc.  The outside aisles of the grocery store, as they say.  It's fairly unlikely that someone's gonna pour flour all over broccoli by accident...but I guess, you know, never say never...

The Three Kinds of Celiacs

I originally started to write this entry, titled "The Two Kinds of Celiacs," and then had a Monty Python Spanish Inquisition sketch moment, if you know what I mean.

It seems like I largely meet diagnosed Celiacs who roughly fall into one of the two categories:  1) learned about the disease on their own through research, collecting information from family members, and presented this to their healthcare provider begging for the test, and for answers about why they feel sick all the time, or 2) after prolonged illness, misdiagnosis, and having to almost die in the hospital, as a last resort, some doctor, as a last ditch effort, gives a celiac test, which turns out to be positive.

In the first category, most of us who did this met were dismissed as crazy by doctors, were refused the test, or in some lucky cases like mine, were listened to and given the test.  I've heard stories that relatives of diagnosed people would save all their money to go in and see a doctor to ask for the test and be refused, being told that Celiac Disease is a rare thing (1 in 133 is rare???????).

The second case is far more tragic, I think.  My heart goes out to those people.

In both cases, doctors have failed.

For people like me, the doctors over the years who just told me I was tired because I didn't exercise enough or that I needed to take iron pills, or the dentists who told me I should just stop eating candy and drinking sodas--all failed.  Failed to see the real thing that was going on, that I had a very common condition called Celiac Disease, and for me, the very staple of our diet, wheat, was killing me slowly.  I felt horrible all the time but people just thought I was lazy, because I was so tired and lethargic.

In both cases, the two groups have been failed by the US Medical system, because people are not routinely tested to rule out Celiac.  And if we were tested, many of us could avoid our related conditions altogether, like autoimmune disorders of the thyroid, neuropathies and ataxia, etc.  The conditions that once acquired, cannot be reversed.  I think that's a tragedy, and a crime by doctors.

The third type of Celiac is the undiagnosed.  Especially I am thinking of the people who are related to us, the already diagnosed.  Those undiagnosed people who refuse to be tested, despite the fact that there is a genetic link.  Doctors especially fail these people when they do not insist they be tested.  It seems like all of us have them in our families.

When someone says, "I have cancer," no one says, "No you don't.  That's not a real illness."

I hope that someday there is only one kind of American Celiac.  The one who is diagnosed early by way of routine screening, as a child, who successfully eats a gluten free diet and lives a long and healthy life.

Celiac Spirits in a Gluten World

Well, I have a long list of topics to catch up on with you.

But even before I do that, I want to talk about our need to be vigilant in order to stay on the GF diet. For me, the better I do for myself at home and the more comfortable I feel relying on safe products and a growing number of GF items available in restaurants, the more I relax about asking questions when ordering and working to educate others on our Celiac needs.

For example, I went to Outback a few days ago, and asked for the Gluten Free menu. They brought out a large, laminated tri-fold menu, printed in color. It was the same size as the regular menu. They are really invested in this, I thought. How wonderful. I ordered a very simple chicken dish (grilled chicken on the Barbie, I think it was), and had a side of mashed potatoes. That might have been a mistake.

6 hours later, approx. 3 in the morning, I awoke to the uncontrollable scratching of a Dermititis Herpetiformis rash. The other food I had eaten that day was leftovers from home (I think I had grits, yogurt, coffee, maybe a leftover baked sweet potato or hamburger from my GF grill), and some Almondy Daim cake at IKEA. (which is totally amazing, more on that soon).

I have no idea where the gluten came from. But how easy would it be for a crumb to fall into the mashed potatoes? Or for a crumb to fall into the barbecue sauce I had on the side w/the chicken. Or maybe a crouton fell in there and they fished it out earlier that day. What I mean to say is that unless we are eating at a facility with a dedicated kitchen, we are still at risk of being glutened.

The week before, I went to my local tavern for dinner with my neighbor and ordered a salad with oil and vinegar, was assured by the waiter that the chicken was gluten free, after he double-checked, and then 2/3 of the way through the salad found a crouton.

In the past couple days I figured out that whatever days I was eating tostadas at home, while they do not contain specific gluten ingredients, must contain gluten in some way due to my DH reaction again. Or could it have been something else? Yes. But I don't know.

So I'm not saying I do not appreciate the efforts of the establishments like Outback and others who are trying to cater to our dietary needs. Of course I appreciate them! What I AM saying is that we still need to Trust No One to be caring about our diet as much as we should, and we need to remain attentive and vigilant. After all, it is our permanent health and well-being we're talking about here.

I want it to be easy. We all do. So these couple incidents are a bit of a wake-up call for Emily to get back on the wagon. Become vigilant again and look for more products for home that are made in a dedicated gluten-free facility. Ask questions. Eat at home as much as possible. Buy the more expensive, safe products. (but plan meals better so I don't buy things I don't really need).

I had the unique opportunity to tour the Whole Foods Gluten Free Bakehouse a couple weeks ago, and I was really impressed with their commitment to safety. They test every single batch of outside ingredients used in their products. They have found gluten sometimes in places it should not be. And they will tell their supplier and not use the product. They are looking out for us! Thanks, Lee and the bakehouse staff! (more on this later).

Celiac Disease is still a medical condition; our diet is still a prescription. I'm disappointed in myself for allowing myself to be glutened because I just got a little complacent.

There is still a lot of educating others that we must do in order to make our world safer for us and our Celiac friends and family.

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Keep talking, keep sharing. Keep telling your story.
The world is listening.

Dr. Peter Green, MD on The People's Pharmacy

Everyone go listen to the podcast of this week's radio program:

http://www.peoplespharmacy.com/2009/06/12/727-celiac-dise/

I heard part of this in the car yesterday, and I'm listening to the podcast right now!

NC Triangle Race fo the Cure 2009

Hi Everyone!

Hope everyone had a great holiday weekend!

I just wanted to share with everyone (if you have not already heard). Zach from the Gluten Free Raleigh Blog has set up a team for the NC Triangle Race for the Cure. What a great cause, and what a great way to bring fellow GF people together in service to the community.

If you live in the Triangle area and would like to join up, you have just a few minutes left, today is the deadline! You can sign up here.

If you'd like to donate to help out our team, we would appreciate it!

Two things you can donate to:

• To raise funds for Gluten Free Week at Camp Kanata (through Zach's blog)
• To donate directly to the Komen Race (through the GF team)

Thanks to Zach for putting this together and see you at the race!

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?

Raleigh GF Vendor Fair

I had such a fun time today at the Gluten Free Vendor Fair at Whole Foods!

There were tables set up all over the store with samples, and Zach who writes the Gluten Free Raleigh blog had an information table, as well as the Cel-Kids group. I met some neat folks, and enjoyed hearing everyone's stories. Some recently diagnosed, some diagnosed for quite some time.

One of the things that was really nice about them having food samples was that you could try a variety of the Whole Foods brand GF items. It would be pretty expensive to purchase all the different products individually. Surprisingly, though, I realized that I have already tried a majority of them!

Pretty much everything from the Whole Foods Gluten Free Bakehouse is delicious. I got to meet Lee Tobin, the head baker and founding baker of the Bakehouse, who was serving up delicious baked treats!

My personal WF Bakehouse favorites are: Sandwich Bread, Honey Oat Bread, Cheddar Biscuits, Blueberry Muffins, Molasses Ginger Cookies and Nutmeal Raisin Cookies!

I also met representatives from Rosie's Plate, and they had some amazing PITA BREAD to try, and I liked their trail mix a lot, too.

Trevor from Bella Monica Flatbread Company was there, who I have met before, and it was nice to talk with him a little while. (And the flatbread pizzas still taste great!)

It was just a great day all-around.

Why don't we do this every Saturday?? :)