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.

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!