Celiac Disease

“When you’re going through hell, keep going.”

I’ll be perfectly honest: I’ve been putting off this blog post for about a year.

I’m not sure why I’ve been procrastinating, other than I didn’t feel like my journey was complete. Now that it’s been a year and I’ve been able to accept and adapt to the new lifestyle, I thought I’d share my story.

Last summer, I was diagnosed with Celiac Disease. For those of you who don’t know, Celiac Disease is an autoimmune disorder that results in a severe reaction to gluten. Basically, my body mistakenly thinks that gluten is poison, so it starts attacking itself when gluten enters my system. It’s basically a gluten allergy; but instead of going into anaphylactic shock, it causes ulcers and severe pain within the intestines. I suffer through a lot of abdominal pain and a variety of other symptoms from ingesting something as small as a single bread crumb. But let me start from the beginning.

From the time I was a child, my parents alway said I had a “glass stomach.” I never thought a lot of it, other than the fact I just had a sensitive stomach. As I reached adulthood, it became more than that.

It hit me hard my freshman year of college. I became very ill very quickly. One evening, I got sick with what I thought was a stomach bug, but it never went away. Every time I ate, I would be in severe pain before I even finished my meal. It was a sharp pain, almost like period cramps to the extreme, focusing itself in my lower right abdomen (no, it was not appendicitis, but the pain had me wondering sometimes). It felt as if whatever I was eating had mini razor blades that were making cuts throughout my intestines.

The pain continued. Any time I ate a meal, I would be in pain before I was full. We couldn’t figure out what was triggering it because it seemed to happen with every meal I ate, no matter what it was. I forgot what being full felt like. Meal time just meant pain for me. I should have seen a doctor earlier in the process but, at the time, doctors made me nervous and I avoided them at all costs.

Sophomore year ended and I decided it was time to do something about it. The sharp cramping hadn’t gotten any better and my periods had become irregular. My best friend suggested that I might have ovarian cysts. Reluctantly, I scheduled an appointment with my OB-GYN for internal and external ultrasounds.

The ultrasounds came back negative. I didn’t have ovarian cysts. My gynecologist recommended I see a gastroenterologist (GI) to explore my symptoms further.

I didn’t.

I put it off again. I don’t have a good excuse for it other than I was going back to North Carolina for the school year and didn’t want to go through a bunch of tests again. So I waited and dove into my junior year. But my pain only increased. I had to lie down after any meal and just wait for the pain to pass. It was excruciating and it was only getting worse.

So my boyfriend at the time drove me to Urgent Care.

After sitting in the waiting room for about four hours, they finally called me back. I have a lot of confidence in doctors and their abilities (although I also believe that doctors give informed advice, not instructions, but I digress). But let me tell you, this doctor shouldn’t have been practicing.

The doctor came into the room and greeted me, examining my abdomen and feeling for any lumps or abnormalities. I told him I had previously seen an OB-GYN and ovarian cysts and problems of that nature had been ruled out. Ignoring my comments, he had my boyfriend step out of the room and proceeded to do a full pelvic exam, saying it was “just in case.” I understood this (even though I was a little annoyed) and complied, but he said there was nothing wrong, as I had told him beforehand.

“You know, the majority of people who go to doctors with abdominal pain never receive a diagnosis,” he said. “And you know what? That’s okay!” His tone was a little too chipper for what he was saying.

I stared at him dumbfounded. He then pulled out his prescription pad and began to write a script.

“What’s that for?” I asked.

“Oh, it’s a narcotic,” he explained. My eyes flitted to the sign on the wall behind him that read, ‘WE DO NOT PRESCRIBE NARCOTICS’ in large, bold letters. “It should help with the pain.”

“I don’t want that,” I interrupted his writing. His pen stopped on the paper and he looked up at me. He ripped the sheet off and began to write a different script.

“What’s that for?” I repeated.

“This is a steroid,” he explained. When I asked what it would do, he said, “well, I’m not sure if it’ll help you, but it’s worth a shot, right? Worst case, you’ll have some side effects.”

I was speechless. The doctor called the script into my pharmacy and we left, confused and disappointed. The moment I sat down in the passenger’s seat, I picked up the phone, called my pharmacy, and cancelled the prescription.

When summer rolled around, I was in so much pain I knew it was time to see a specialist. I received a referral from my general physician and made an appointment with a local GI. During my consultation, the GI said he believed I had a mild form of Crohn’s Disease. He suggested the best course of action would be to do a colonoscopy and a CT Scan to see if there was any damage in my intestines. I took him at his word and we scheduled the appointments.

If you’ve ever had a colonoscopy, you know the prep is probably the least fun thing you can do on a Saturday night. If you haven’t, just trust me on this one.

While in recovery after my colonoscopy, the GI came in and showed me the photographs of my lower intestine. It looked like someone had taken sandpaper and rubbed them raw. He said that he didn’t have any for sure indications of Crohn’s disease just yet, but he wanted to check the upper intestine. So we scheduled an endoscopy.

In the meantime, I went in for my CT scan. I had to drink this awful milkshake concoction (not as bad as the colonoscopy prep, but I had flashbacks) in the waiting room before heading in for my scan. The scan came back normal.

The endoscopy yielded the same results as my colonoscopy, but the GI wasn’t ready to give up on Crohn’s. He put in a pre-approval for the most bizarre treatment I’ve ever heard: he wanted me to swallow a pill that had a camera in it so he could see the entirety of my intestinal tract.

I didn’t have Crohn’s disease, but for some reason, the GI was on a hunt. One day, while waiting to hear back from the insurance, my mom turned to me; “Maybe you’re allergic to something,” she suggested. “Like gluten or dairy.”

With that, I decided to try a gluten-free diet. If that didn’t work, I was going to move to something else until I found the problem myself. Within a few days, I could already feel a difference. I hadn’t had any severe spells of pain and I felt myself just feeling healthier overall. I called my primary physician and scheduled an appointment.

A blood test. That’s all it took. A few days later, I received a call from my primary physician with a positive diagnosis for Celiac. I was bummed by the massive lifestyle change I was going to have to make, but I was most relieved. After years of pain and speculation, I finally had a diagnosis.

Here’s the thing about Celiac disease. It’s not just an intolerance to gluten, it’s essentially an allergy. You have to prevent any and all cross-contamination. If someone cooks food in a pot, I have to wash that pot twice to make sure there is no remanence of gluten before I cook in it. At restaurants, if they prep things on the same countertop, cook on the same grill, or use the same utensils, I will get sick.

At the time of my diagnosis, I was getting ready to head back to college for my senior year. While I had my own bedroom, I shared a kitchen space with three other roommates and I had a mandatory, on-campus meal plan. None of this was ideal. In addition to sharing a kitchen space, requiring me to double-wash everything (including countertops and the sink) before prepping my meals, my meal plan was going to waste. Any of the supposedly gluten-free options were served in buffet style. If one student grabbed the tongs from the croutons and used them in the lettuce, I was done for. It was that simple. Housing insisted there were no single apartments on campus and I was just going to have to deal with it.

I filed with Disability Services. My doctor provided paperwork indicating that I needed a single apartment where I had my own kitchen space. The University told me they didn’t have anything available for me and there was nothing they could do. Frustrated, I requested a refund on the rest of my housing and meal plan for the semester and I moved off campus.

Moving off campus was the best decision I made for my situation. My happiness skyrocketed and my life became significantly easier. I didn’t have to worry about cooking in my own kitchen anymore or finding a way to use my meal plan. My kitchen was entirely gluten-free, so I never had to double wash or be concerned about getting sick.

At first, I was upset. I was angry and frustrated, wondering why this had to happen to me. But I’ve come to accept it and embrace it, really. Having Celiac forces me to look at the labels of the food that I eat and in turn, I make better, healthier choices for myself. It makes me who I am.

Life throws you curveballs, some that will change the way you will live for the rest of your life. Catch those curveballs and throw them right back. It may seem difficult at first, but you will find ways to adjust and make the most out of any given situation. There is always a silver lining.

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