I was diagnosed with Coeliac disease (also known as Celiac disease) a year and a half ago. My heart sank the first time I heard the words “Coeliac disease”. I had no idea what that meant. I mean, “disease” it a pretty anxiety-inducing word in itself. Pairing it with a word I had never heard before made it worse. I can’t say for sure but I’m fairly certain that I had the most perplexed, terrified look on my face. Dr. Martin smiled, “Coeliac disease is an autoimmune disorder of the small intestine.” Not very helpful.
My heart was beating fast and I was half-expecting the next words out of his mouth to be, “I’m sorry but…”. Luckily, he calmly explained that being Coeliac means that I’m severely allergic to gluten. There are several components to Coeliac disease but the main thing for me to know was that the only “cure” for it is to avoid gluten for the rest of my life. This meant that I could no longer eat some of my favorite things like pasta, bread, cookies and the most dreadful of it all, chocolate cake. Or so I thought.
Being Coeliac also meant that I’d have to be careful about cross-contamination. I’d need to get in a habit of reading labels to make sure that what I’m about to buy isn’t made in a facility that also processes anything that contains gluten. I wanted nothing more than to be positive but I was having difficulty finding the light at the end of the tunnel. I left Dr. Martin’s office a bit dejected, not knowing what good could possibly come out of this.
How I found out
Unlike most people with Coeliac, I have no obvious symptoms. I don’t have an upset stomach when I eat pasta or bread, no discomfort, nothing. Given that, I’ll forever be grateful to the 8mm kidney stone that I found out about at 5 o’clock in the morning on November 12, 2013.
I went to the ER with an excruciating stomach ache in the wee hours of the morning. It turned out be a kidney stone (the worst pain I’ve ever experienced, but I’ll save that story for another day). Dr. Martin ordered all the important tests and the results were pretty shocking. He told me that he was surprised that I was even walking around considering how low my iron and vitamin D levels were. It was obvious right away that something was wrong. A few more tests and a couple of endoscopies later, it was pretty evident that gluten was the culprit. The most important takeaway from that day was that no irreparable damage had been caused. As I walked out of the doctor’s office, I realized how fortunate I was to have found out before it was too late. Yay for kidney stones?
What exactly is Coeliac?
I only knew the term “gluten-free” as a fad diet of some sort. Something that rich people have taken up to lose weight and stay healthy. It wasn’t until I started talking to my nutritionist, Dr. Steck, that I found out that my assumptions were only partially true. It’s true that you can potentially be healthier on a gluten-free diet but it’s definitely not a given. A gluten-free diet can be just as healthy or unhealthy as a regular diet, depending on what you eat. Most potato chips, chocolates and ice cream are gluten-free (phew!).
A few days after my diagnosis, I went in to see Dr. Steck in hopes of getting all my questions answered. My first question: “What if I do have pasta once in a while? What would happen?” To which Dr. Steck replied, “Hmm…well, that’s like a lung cancer patient asking ‘what if I smoke once in a while?’”
Yikes. All right, so she wasn’t kidding about the whole “absolutely no gluten” thing. Got it.
As we talked more, we got down to the nitty gritty. A couple of discoveries worth sharing:
- A technical explanation. Gluten is a protein composite found in wheat and other grains like Barley and Rye. It gives elasticity to dough, helping it rise and keep its shape. It’s what helps hold things together (in Latin ‘gluten’ means glue). On the outer lining of the small intestine, there are small, finger-like projections that protrude out called villi. Villi is what helps absorb nutrients to then distribute to the rest of your body as needed. When Coeliac patients intake gluten, their villi become blunt and flat instead of protruding outwards. This makes it extremely difficult or impossible for the small intestine to absorb nutrients.
- How gluten affects my body. I found out through one of the endoscopies that my villi were completely flat. This meant that my small intestine wasn’t absorbing any nutrients. As a result, my body wasn’t getting any nutrition. Which is a terrifying situation to be in. No matter how well I ate, very little of it was actually being absorbed in my body. This explained some of the problems that I was noticing with my energy levels, skin and hair. It was scary to think that whatever little nutrition I was getting was going towards just keeping me alive instead of promoting better health overall.
So, how bad is it?
Not bad at all. Especially in the Bay Area. I live in San Francisco and it’s definitely one of the best cities to be in for Coeliac folks. There’s a lot of awareness here. A great deal of restaurants are now starting to label gluten-free items on their menu. Some of them even have a separate gluten-free menu with plenty of yummy options. Safeway, Whole Foods and Trader Joe’s all have aisles full of gluten-free goodies.
It’s worth adding that it helps to do your homework and take the time to learn about what contains gluten. More awareness equals better decisions.
I’ve been on a gluten-free diet for a year and a half now and I can honestly say that I’m in a much better place. I’m not gonna lie, it’s been tough at times. That being said, there are many great things that have come out of this experience.
I’ve learned a lot about myself over this past year and a half. I’ve learned that it’s possible to convert what seems like a horrible situation into a positive one with a little bit of work — Mind over matter. I’ve learned to let go of the past and focus on what’s ahead. It’s a difficult thing to do, but it must be done. I’ve learned how the ‘Paradox of choice’ applies to me. It’s truly wonderful what can happen once you start eliminating choices. I’ve learned to not take things for granted, no matter how small. I’ve learned to not take life too seriously and to just go with the flow.
My will power is stronger than ever. I hope to donate blood later this year, which wasn’t a possibility before because of my lower than low iron levels. In the past year, I’ve ran two half marathons and I’m training for another one in October. I feel much healthier. My skin & hair are almost back to being normal. I even have a much easier time waking up in the morning after pulling an all-nighter. I consider my diagnosis a blessing in disguise. An opportunity to turn my life around. I took it, grabbed onto it and I’m not letting go.