May is Celiac Awareness month, and so for the next few posts, I’ll be sharing facts and figures about Celiac disease and ways that you can spread the word and possibly even raise funds for more Celiac research.
Let’s start at the beginning. What is Celiac Disease? The Mayo Clinic has done a great deal of research, and so I’m going to use their definition (this can be found on the Mayo Clinic website directly from the overview section of their pages on celiac disease): “Celiac disease […] is an immune reaction to eating gluten, a protein found in wheat, barley and rye. If you have celiac disease, eating gluten triggers an immune response in your small intestine. Over time, this reaction damages your small intestine’s lining and prevents absorption of some nutrients (malabsorption). The intestinal damage often causes diarrhea, fatigue, weight loss, bloating and anemia and can lead to serious complications.”
Celiac disease is triggered by a combination of genetic factors, environmental factors and by eating gluten. The exact triggers are not known and may be different for every individual. Speaking personally, no one knows exactly when celiac disease was triggered in me, but it was very likely in early childhood. My mother said that at the age of two, my hair began to fall out. All that the pediatrician could tell Mom was that I had a vitamin deficiency, but he didn’t know what caused it. He told my mother to start me on vitamins, which she did. After that, I always teetered on the brink of anemia, though doctors couldn’t explain that either. I was told to take Geritol (vitamins with a high iron content) at age 12. My mother had full-blown anemia and was diagnosed with celiac disease in her fifties, after suffering most of her life with the symptoms of malnutrition. My maternal grandmother said that when Mom was a toddler – about four – that she was so thin and small and sickly that Mom’s great-grandfather tried to nurse her back to health by spoon feeding her. My mother has never been healthy and neither have I. We are both celiacs.
The symptoms of celiac disease vary greatly from person to person and most of the gastrointestinal symptoms that people commonly associate with the disease – bloating, diarrhea, and stomach pain – don’t set in until adulthood. I personally never had gastric pain or problems until I was about 19 years old, but up until that time, I suffered with borderline anemia, fatigue, joint pain, etc. In high school, my symptoms got worse: a serious inability to remember things started to set in and my friends and teachers began to ask me if I thought I might have Attention Deficit Disorder. My grades, which had always been good, began to plummet, and I skidded into college on a prayer. I have vivid memories of waking up for school in the morning feeling almost more tired than I was when I went to bed. I felt so tired that it hurt all the time. No amount of sleep or rest ever alleviated that feeling.
I drank insane amounts of caffeine and in my freshman year of college, I was falling asleep in classes in the middle of the afternoon. It took a Red Bull and a candy bar to get me through a one-hour lecture at 3pm. I remember this because it was my daily strategy. I never gained any weight, though, despite eating badly. I was hungry all the time and my cravings were weird. I craved salt more than anything (a symptom of anemia). My eyes would water at times when my salt cravings were really bad, and I found myself drinking shots of soy sauce, whole jars of the brine that green olives come in and – only once – eating a bouillon cube straight out of the little silver wrapper.
I will get to my diagnosis and subsequent adventures with the gluten-free diet in my next couple of posts, but I wanted to share all of the above with you all to remind everyone (I know, I do a lot of reminding 🙂 ) that celiac disease is a very real and serious condition, and that it can manifest itself in many different ways. If you’ve been diagnosed with celiac disease or if you know someone who has been (you probably at least know someone since it affects about 1 in 133 people) please, please take it seriously! Once you know you’re a celiac, there is NO CHEATING on your gluten free diet. You’re not a fad dieter, you’re the same as a diabetic. Your life depends on what you eat! Spread the word, it’s Celiac Awareness Month!!