spreading awareness of celiac disease
Hi, my name is Shauna, and I have celiac sprue.
Those of you who are regular readers of this website won’t be surprised by the statement above. In fact, you may be wondering why I am bothering to repeat it again. You want to know why?
Sometimes, I can hardly believe it myself. Even though I keep this website, and I am writing a book about my gluten-free experiences and recipes, and I educate someone about celiac nearly every day, it seems — I still have to shake my head and say it out loud.
It’s not because I miss gluten. In fact, the sight of glutened treats does absolutely nothing for me anymore. (Okay, occasionally when the Chef has bread with one of our fabulous midnight meals, I feel a little twinge of missing it.) Something in my brain seems to have switched off. I don’t want gluten. After all, a few crumbs ingested inadvertently can make me sick for two days. Why would I want that?
No, instead, I’m still trying to wrap my mind around this. After all, I had never heard of celiac disease before I was diagnosed. I had been sick and weak and anemic and prone to catching every cold for decades. No one ever uttered the word celiac. I did not hear the word gluten until I was in my late twenties and starting to make bread from scratch. When I was a senior in high school, I took an advanced anatomy and physiology class, where we dissected cadavers. I remember, as a senior, doing the dissections for other students, including a study of the intestines. Still, I never had any idea that food could damage my intestines the way they did for most of my life.
If only the awareness of celiac sprue had been as widespread as it is now starting to be, I could have been spared so much suffering.
That is why I keep this website. That is why I have a segment on the Food Network right now. That is why I am writing my book. I want to help everyone else.
Since October is Celiac Awareness Month, I’d like to do my part for those of you reading who come here for the photographs, the recipes, and the love story. Those of you who may have mystery ailments and not know what is causing them. You might just have celiac disease and not know it.…
Celiac disease is a genetic intolerance for gluten — the elastic protein in wheat, rye, barley, triticale, kamut, and spelt — and it can damage the small intestine for years, silently, or at least in a language that most of us do not know how to recognize. People with headaches dismiss it as stress, those with achy joints wonder if they are experiencing early arthritis, and women with gynecological problems blame it on the hormones. Yet, each of these can be symptoms of celiac disease. For various genetic reasons, the celiac’s body reads gluten as a toxin and attacks it. The antibodies go after the gluten but attack the small intestine instead, leaving it incapable of absorbing proper nutrition. At best, this leaves people feeling exhausted, anxious without knowing why, and always catching colds. Worse yet, it can lead to cancer of the colon and a triggering of other autoimmune disorders, such as diabetes or thyroid problems.
According to the National Institute of Health, celiac disease is the most under-diagnosed disease in the United States. For years, medical schools taught erroneously that celiac disease was a childhood disorder, as rare as 1 in 3000 people. A prominent doctor in Seattle told me, after my diagnosis, that he spent a grand total of five minutes learning about celiac disease in medical school. Now, it is understood that 1 out of 133 Americans suffer from celiac disease. (And the numbers seem to be shifting, as the medical community understands this more thoroughly.) That means there are 2 million people in the United States who should be living gluten-free. Only three percent have been diagnosed — that means millions of people floundering in pain and discomfort for decades without knowing why.
We can change that number, as awareness of celiac disease grows, exponentially. How many of you know someone — a sister, an uncle, an old boyfriend — who had to avoid gluten? Frankly, I have not met anyone yet who is isolated from this. We are all in this together.
Since I started writing this website, a dear friend and my cousin both realized they had celiac disease after hearing my stories. And I have heard from a number of you who stumbled on my site through another food blog, and then realized that you needed to ask your doctor about celiac as well. Maybe you — that’s right, you — reading this now have celiac sprue and you don’t even know it. If this little piece of writing triggers recognition in one person, I’m happy. Two million people suffering for no reason simply will not do.
If any of this sounds familiar, or you would just like to know more, take a look at this fact sheet, entitled Do I Have Celiac?, from the National Foundation of Celiac Awareness. Also, for a thorough, scientific write-up of this dilemma, take a look at the write-up on celiac from the National Institute of Health.
(And I’d like to say thank you to Kelly and Kim from Celiac Chicks, the ever-cool women from New York who urged me to speak out about this. You rock.)
Finally, I’d like to take this opportunity to share another bit of good news, all in the name of spreading awareness. Starting with the December issue, I will be the regular columnist about living gluten-free for the relatively new magazine, Allergic Living. Published in Canada, but available by subscription in the United States as well, Allergic Living is a smart, well-written publication for those of us with food allergies. Instead of focusing on what we cannot eat, Allergic Living focuses on how good life can be, even with dangerous allergies. As you can imagine, I agree. The editor, Gwen Smith is an excellent editor with a respected background in journalism. The magazine is a great read. I’m honored to be part of the team.
If you would like to see a preview of my column, you can read it here. If you would like my recipe for the olive loaf you see pictured above — and it tastes better than it looks — well, you are just going to have buy the magazine!
Or, wait for the publication of my book, Gluten-Free Girl, next fall. But really, that’s just too long to wait, isn’t it?