Raleigh Bread Trial Video

Thank goodness, Paul Seelig was found guilty as charged for selling a bunch of us wheat bread as "gluten free."

Justice does help make it better.  I hope that his horrible example will help us move forward in the area of food safety and labeling improvements!

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...

Food in our lives, what changes and what doesn't

I read a great post this week from Wendy at her Celiacs in the House blog.  She talks about the complicated relationship with food, and how that can change when we find out we are celiacs, and it is then necessary to make diet changes.

It has me thinking about the bigger picture of food in our lives.  What culture in the world doesn't have its food playing a major role?  Having meals together, "breaking bread" together (if you will), is a part of life, everywhere in the world.  We all must have food, clothing and shelter to live.  Whatever else we have culturally (arts, entertainment, etc.) is just details.

Everyone remembers our mother's cooking.  She was the first to care for us and make sure we were fed.  Similarly, many of us remember our grandma's cooking, and her bringing infinite wisdom to the kitchen that would sparkle, often brighter than our own mother's prowess.

So we have these memories, these tastes.   But sometimes we didn't like everything.  Who here likes brussel sprouts, for example?  We don't always make the foods our grandmothers made and integrate them into our lives.  We don't always have the same non-food traditions that our grandparents and those before them had.   I mean, I sure don't.

But I do know that I am who I am because of their care and values.  I know there are many kinds of dishes that I love, that were made by my grandmother, like Beef and Noodles, every kind of home grown vegetable, jello, custard pie, pumpkin pie, all other kinds of pie, sugar cookies, Turkey and homemade stuffing, baked ham, baked chicken, sweet yams, scalloped potatoes, mashed potatoes, gravy, sweet Easter bread, scrambled eggs, bacon, etc. etc.  You know, Ohio german farm food.

What traditions have I not continued?  I don't cook up a pan of bacon.  I don't work on the farm 8 hours a day, and will not work that fat off while sitting at my desk at work.  So I am discarding this tradition, one which would be unhealthy for me.  I think my grandmother would agree that's a good idea.  Also, I don't make sweet Easter bread (yet).  That would take something like 2 days to do, if I could even figure out how to make it gluten free (which I probably could).  Instead, I am spending those 2 days working and networking, or practicing, all things that are leading me to greater opportunities in my life.  And I feel like that is alright as well.

And what new traditions do I have?  My mother started a tradition of making soft sugar cut-out cookies as a family around Christmastime.  We would bake them together--she, my 2 brothers and me--and then we would frost and decorate them.  We would give them to all our teachers, friends and neighbors, etc.  This wasn't an old tradition, but now that I've successfully adapted this recipe to gluten free, I do the same in my life.  I share cookies with work contacts, local friends, etc.  It's inexpensive, and so I can give more to people, can take a plate to share with everyone at work, and something homemade means so much more than store-bought anything.  And I think it's a fun thing to do.

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I have always maintained that Celiac Disease doesn't change your life.  It might change a few details about how you have to plan ahead your meals, a little bit, but it doesn't change who you are, your dreams, and what you can do, one bit.  However, I do see that it is becoming part of my story.  Just from the way I live, and how planning my eating has changed.  But I'm really OK with that, and I think the fact that I do approach eating and food a little differently is just an extension of taking care of myself.  Something I know my ancestry would smile upon and support.

Whenever someone is asking me, "isn't that hard?  That would be so difficult.  Don't you miss eating things?"

My response is always, "Anything you can have that's made with wheat or gluten, can be made without.  I don't feel deprived of anything.  If I want something bad enough, I know I can have it, although I just might have to make it myself."  I've found it to be true.  And I'll share with you if and when I ever get that Easter Bread converted to gluten free, because I'm sure it can be done.

Read this if you're a celiac tempted to eat gluten

Last fall, several of us in my area were duped, I am sad to say, by a guy who was selling bread that he claimed was gluten free, baked in his own bakery.  Turns out, it was wheat bread he was repackaging that he'd purchased wholesale and passed off on us.  It was lie after lie after lie.  You can read about it on Zach's blog here.

I do not know of any studies that have looked into the long-term effects of "glutening" over a period of time.  In any case, here are photos of me, before and after being glutened, so you can see what it looked like on me.

The first photo is me in November 2009 (before):

The second is me at Christmas, Dec. 25, 2009.  I ate wheat bread at almost every meal for approximately 2-3 weeks, starting November 25 and finishing probably around Dec. 11th-13th, somewhere in there.  So this 2nd picture is from AFTER I was glutened, and I think it's pretty obvious that I had still not recovered by Christmas.

I felt horribly tired and could barely do anything outside the bare minimum for work, which was excruciatingly difficult itself.  All I felt like doing was staying in bed.  All day.

Check out the bloating of my face and hands.  Not to mention my coloring.
















Thank goodness I am feeling better.  I've been working to lose the weight I gained over the winter (that I really believe was in a large part secondary to the glutening), and I feel much better overall now.  Here I am yesterday with my gluten-free little brother (a little sweaty after an outdoor concert--but looking and feeling much, much recovered!).

So you might be thinking, gee, one little wheat cookie (or two, or three)/piece of bread/cake, etc. might be OK.  If you want to kill yourself and feel horrible, go right ahead.  Don't say I didn't warn ya.

(and what I really mean, is--please don't.  It's not worth it.)

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!

Why "Celiac Underground"?

So you may think my blog name is funny, or maybe you think it's strange, or maybe didn't even think about it for a second.

But I'd like to tell you how and why I thought of it.

Most all of us, after we find out we're gluten intolerant, and as our health improves exponentially as we start our gluten free journey through life, start to think and feel differently about the world. We lose our faith in the doctors who misdiagnosed us for years (or decades), we lose our faith in the nutritionists and magazine articles recommending whole grains and whole wheat bread, etc. etc.

So who do we have left? Blogs, I guess. Other people like us. People who actually believe us. (doesn't every Celiac have friends or family who think we're just crazy, like, bread can't kill anyone?)

So every time I go to any grocery store, every time I go to Whole Foods, Trader Joe's, or Earth Fare, and when I see people tossing a pack of gluten free bagels into their cart, a gluten free pizza box or GF cake mix, I think to myself, "Hi there, you're one of us!" or, "Now you're better too, hooray!"

You and I, we are part of a gluten-free movement: we are part of The Celiac Underground.

To the wheat-eaters I say: we work beside you in the next cubicle, we're behind you in line at the grocery store, we're driving in the car next to you on the highway. We blend right in. (That is, until you ask us why we aren't having any cake at the office birthday party...)

The following scenario is happening to me more and more:

I am standing at the Whole Foods GF freezer case and thinking about if I really need gluten free hamburger buns or not (probably not). Meanwhile, I see you (my fellow Celiac) grab the Kinnickinnick Donuts box or the Whole Foods GF Bakehouse Peach Pie, and think--"Oh, wonderful, you are cured too!"

I become very happy for you and almost want to exclaim, "Aren't you so glad you figured out how to become healthy?! Don't you feel great, like me?!"

Well, now, I am something of an introvert in real life, so I rarely speak up at times like these. But I think to myself, we're all in this together. We all are part of a growing force that will drive the market to bring us better GF products. We are part of a movement that is pushing to educate our healthcare providers to save people's lives by early testing for the disease.

I'm so glad we're in this together. And I think our voices are starting to be heard. It's exciting. Hooray!

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?

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.