It's Celiac Disease Awareness Month—Are you the one?

by Brittany Geragotelis

May is Celiac Disease Awareness Month and in honor of it, I'm hoping to shed some light on one of the most undiagnosed diseases in the world. Celiac Disease is an autoimmune disease that affects one in 133 people. Unfortunately, about 97% of those afflicted with CD go undiagnosed—which means there are a whole lot of people walking around in pain and damaging their bodies because they just haven’t been given the proper information. Here’s what you need to know:

• CD is an inherited genetic disease. This means if someone in your family has it, your chances of also having it increases.

• CD affects men and women, children and adults. This disease doesn’t discriminate.

• CD is one of the most common genetic diseases in the world. This disease affects more people than Crohn’s Disease, Cystic Fibrosis, Multiple Sclerosis and Parkinson’s Disease combined!

• CD is a multi-symptom, multi-system disease activated by eating gluten. When someone with Celiac Disease consumes gluten (wheat, oats, barley, rye), it sets off a reaction where the person’s immune system begins to attack the body. Continued consumption of gluten can result in things as serious as intestinal cancer, Schizophrenia or infertility.

• You can develop CD at any point in your life. Some people are born with symptoms, while for others it’s a stressful event that sparks the disease.

• There is currently no cure for CD. The only course of action for a person with Celiac Disease is for the afflicted to cut ALL gluten out of their diet.

• A blood test is not enough to be diagnosed. If you’re being tested for CD, insist that your doctor perform an endoscopy as well as a blood test. It’s common for the blood test to give out false negatives.

Part of the reason that so many people with Celiac Disease go undiagnosed is because there are a multitude of symptoms, which are often mistaken for other less dangerous conditions such as Irritable Bowel Syndrome. Here’s a list of possible CD symptoms. If you have any or all of these, you should request that your doctor test you for the disease:

• Bloating, gas or abdominal pain

• Chronic constipation or diarrhea

• Unexplained weight loss or weight gain

• Unexplained anemia

• Behavior changes (depression/irritability)

• Missed menstrual periods

• Tooth discoloration or loss of enamel

But every CD story is different. This is mine:

Back in March of 2006, I went on a business trip and had an allergic reaction to shellfish. My throat started to close up and I panicked. From that day on, I grew extremely ill. Within three weeks, I’d lost over 20 pounds (at my lowest, I weighed a scary 86 pounds); I was throwing up multiple times a day; I’d lost my appetite and felt naseaus round the clock; It felt like there was a lump stuck in my throat; my chest and back hurt constantly; I was light-headed and faint; my hair had started to fall out; I was having panic attacks on a daily basis and I thought that I was dying.

In a month’s time, I went to a total of five doctors to try and find out what was going on (given the sudden onset of symptoms and their severity, I thought I had cancer). None of them had any answers for me until I saw an amazing man named Dr. Harrary. As soon as I told him my symptoms, he said, “I think you have something called Celiac Disease. It’s a disease where your body can’t process gluten which is found in wheat, oats, barley and rye.” When he suggested this as my possible diagnosis, I shot it down saying, “I’ve eaten bread my entire life. That can’t be it.” But despite my disbelief, Dr. Harrary scheduled me for an endoscopy (a procedure where you’re put under anesthesia and they stick a tube down your throat to take pictures and samples of your stomach; this is a very easy procedure and totally painless) and took blood to test for the disease.

Over a week later, I received the call: the tests had confirmed that I had Celiac Disease. Feeling numb over the diagnosis, I barely listened as he explained that there was no cure, that I only had to adhere to a gluten-free diet and it would be like my body was in remission. But I soon learned that cutting out all gluten from your diet is much more difficult than it sounds. It calls for a complete life change. Difficult, but not impossible.

It took some time to get used to my new way of life, and to be honest, for the first six months I only ate Amy’s frozen dinners (she has a lot of gf items) and gf pasta. I wasn’t in the right mindset to dive into gf cooking. But eventually I learned all the ingredients I needed to look out for and started being a little more adventurous with my meals.

Today, I love cooking; I can take just about any recipe and modify it to be safe for me to eat. I’m in a relationship with a non-Celiac guy who has become quite the expert on gf food and doesn’t mind eating that way if it means I stay safe and healthy. And there have been great strides in awareness over the past five years, including better labeling of food allergens and mainstream companies like General Mills who've begun to make whole lines of gf food (Betty Crocker sells gf cookie, brownie, yellow cake and devil’s food cake mixes at almost all grocery stores; Chex has a bunch of gf cereals; and Bisquik has a line as well.), which will help to bring the cost of these specialty foods down drastically.

I can honestly say that I feel healthy today. As soon as I went gluten-free, I was able to gain my weight back and start getting those vitamins back in my body that I’d lost while I was sick. I’m more susceptible to getting other autoimmune diseases because of my condition, but I’m more aware of reactions in my body now and I know not to give up until I find out what’s wrong with me when I do get sick. Being diagnosed with Celiac Disease isn’t the end of the world; with a few lifestyle changes and a little know-how you can feel better in no time.

If you’re suffering from any of the symptoms mentioned above, visit a gastro-specialist who’s dealt with patients who have Celiac Disease before and request they run a blood test and perform an endoscopy. And remember, just because you don’t have all the symptoms or you’re not in enormous amounts of pain, doesn’t mean you’re not doing damage to your body. If you just want to support the cause, please pass this article on to your friends and family, or wear something green in honor of Celiac Disease Awareness Month (green’s the color to support the cause; I even had green extensions put in my hair!) or donate money to Celiac Research here. Together we can spread the word and encourage diagnoses.