- Prior to diagnosis, patients have a serious case of irritable bowel syndrome or IBS.
- People who have been diagnosed with celiac disease typically learn that people love to make fun of the words “gluten-free".
- For most people, a diagnosis can take a few years, which is why researchers believe that 20% of people are undiagnosed.
"I still think of my Celiac Disease as a painful break-up that I have to endure for the rest of my life. It was tough being on the receiving end of this diagnosis at the age of 21, when I thought I had so many things going for me. Before I got the diagnosis and forced myself to understand what Celiac Disease is, gluten-free was never my cup of tea. I loved my cheesy and meaty pizza, my bread, my pasta, my cakes, and other pastries. I can’t even begin to explain the horror of when I discovered I have Celiac Disease. When my gastroenterologist presented to me a bulleted list of everything I had to sacrifice–those foods included–I didn’t think she was serious. It’s got to be a joke, somehow, because how I am supposed to live without these in my system? When I realized there was no reason for her to make a joke about my condition, I was at a loss for words."
The reality of having celiac disease
Celiac disease involves a series of tests that run for a few years. Prior to diagnosis, patients have a serious case of irritable bowel syndrome or IBS. It’s far from being just an average case of diarrhea. We’re talking about severe abdominal pains, both diarrhea and constipation, and bloating. As a patient, you have to go on several trips to the doctor’s office with around 4 to 5-month intervals. You need to undergo multiple tests, and basically everything it takes for them to determine what is causing this persistent condition. After all that time and effort, a clear diagnosis will be presented. For the newly diagnosed celiac patient, that day is when your life had changed–the start of a whole new life.
Being gluten-intolerant often sounds made up in this day and age; it's something that some people even make fun of. Because let’s face it; when they come across the words “gluten-free,” they immediately think this product is for a diet fad and for those who want to lose weight. They forget about the people who actually can't eat gluten for serious and real health reasons. The transition to a gluten-free lifestyle is not easy. If you were diagnosed, you might not want to go with your family when they go grocery shopping because you feel bitter and think about all the things you can't have.
For a celiac patient, telling everyone who serves you food that you’re gluten-intolerant is a must, and that’s one of the challenges you have to face on a regular basis. More often than not, you don’t want to tell people you have celiac disease, because for one, it’s a personal thing, and two, it sounds as serious as it actually is. If you’re out with your friends or co-workers, it’s not the most appetizing thing to hear. Instead, you say something like, “Is there gluten in this? Sorry, I’m gluten-intolerant.” When you’re lucky, you get a nice, polite response, followed by an introduction to gluten-free alternatives.
What happens when you tell people you're gluten-free?
People who have been diagnosed with celiac disease typically learn that people love to make fun of the words “gluten-free.” The fact is – celiac disease, the serious medical condition that changes a life, is not being projected out there in traditional and social media as frequent as other medical conditions. So, as far as awareness is concerned, we can’t really blame society for pulling these jokes and being insensitive. That’s why most celiac patients are not getting better at beating the condition and adopting this gluten-free lifestyle, nor are they any happier when they felt the immediate health benefits of a gluten-free diet.
Aside from your family and your close friends, you often do not have a strong enough support system to help you transition to this new lifestyle. Why? Because not a lot of people know about celiac disease and are not aware how to act around celiac patients. Not a lot of people know that gluten-free products are not just options for picky dieters. In fact, these products are life support for celiac patients.
When you realize all that, you will begin to embrace the gluten-free diet more. More importantly, you can raise your voice. Instead of shying away from the disease, be vocal and became a catalyst for celiac disease awareness and sharing your ‘how I discovered I have Celiac Disease’ personal story. Doing so will not only empower those individuals with celiac disease, but also inform people about the medical condition that has changed so many lives. Maybe this initiative could even make way for a cure or some form of treatment other than a strict life-long gluten-free diet, because as of now, there isn’t any. Society needs to get over their disdain for gluten-free products because let's get this straight once and for all, gluten-free isn't so bad.
What exactly is celiac disease and how can you make yourself better?
Celiac disease, also known as gluten intolerance, is an autoimmune condition wherein one’s small intestine gets damaged upon ingestion of gluten. A hereditary condition with long-term effects, celiac disease occurs in 1 out of 100 people worldwide, mostly Caucasians. When celiac patients ingest gluten, which is a protein derived from barley, wheat, and rye, their body attacks the small intestine as an immune response. As a direct effect, the lining of the small intestine called the villi, which is necessary for nutrient absorption gets damaged.
When a celiac disease patient accidentally ingests something with gluten, he or she may experience common intestinal problems such as gas, diarrhea, and constipation, or any of these symptoms:
- Abdominal pain
- Rash/dermatitis herpetiformis
- Joint pain
- Weight loss
- Mouth ulcers
- Loss of bone density
Diagnosing celiac disease can be very difficult, since not all celiac disease patients will develop a sufficient combination of the symptoms mentioned above. For most people, a diagnosis can take a few years, which is why researchers believe that 20% of people are undiagnosed. When the symptoms start to manifest, two blood tests are taken to figure out whether or not you have celiac disease. These are (1) serology tests to find certain antibodies, and (2) genetic blood tests to find human leukocyte antigens, which are crucial in ruling out celiac disease. To ensure accurate results, you must come off a gluten-free diet first before taking these tests. If the tests show positive, an endoscopy will be underway. Your gastroenterologist will examine your small intestine and obtain a bit of tissue to check for intestinal damage.
Currently, there is no cure for celiac disease, nor is there a drug to treat it. The only solution is to go on a strict gluten-free lifestyle and diet. You’ll need to avoid bread, pasta, baked goods, beer, certain medications, and toothpaste among many other things. The health benefits of a gluten-free diet, as well as its preventative properties for small intestine damage and celiac-linked autoimmune diseases, should start to manifest after a few weeks. You may need to take mineral supplements and gluten-free vitamins to counter nutritional deficiency.
If you’re having a rough time dealing with celiac disease, don't forget that you are not alone. Despite a lack of awareness, you have an undiscovered support system sharing the same predicament and believing in you. May your story empower you to embrace your new gluten-free lifestyle just as other celiac patients did.