How do you convince yourself to eat when the first 22 years of your life were spent becoming violently ill after consuming any food?
This was the struggle I had to face for the last decade while living with the autoimmune disease Celiac.
Usually, when I tell someone that I have Celiac Disease, I have to explain that I follow a strict diet. The person tends to look perplexed and then informs me that “You’re so skinny. You don’t need to be on a diet.”
It’s not as if the person I am talking to can see inside my stomach and witness the damage that consuming gluten will do to my body. It has taken a decade for my insides to become healthy and match my outsides.
Whenever I begin the long process of explaining why being gluten-free has nothing to do with staying skinny but all to do with staying alive, I watch their eyes glaze over. It is nearly impossible for me to convince them that eating processed gluten-free bread has just as many calories, if not more, than regular bread. I am forced to live this way or eventually waste away and die because I have shredded my stomach lining from eating delicious food.
These answers usually satisfy their curiosity. I personally don’t enjoy going into the details of how I am uncertain on which way I may be affected. I leave out that it nearly takes a week to recover because my immune system has been lowered. I also leave out that while my body is under attack, I am praying that I haven’t come in contact with anyone ill since their two-day sniffles could hang around me for nearly a month.
It had taken years for doctors to believe that I was actually ill.
At 18, I started the investigative process because I could no longer live in pain. My hands would lock up as if I had rheumatoid arthritis, and my sciatic nerve felt as if it constantly was on fire. All the pain made it impossible to sleep.
The first doctor I spoke to was for my arthritis symptoms. He was baffled because my body was exhibiting all signs of rheumatoid, but nothing in my blood work came back positive. It wasn’t long before he wrote me prescriptions for painkillers and muscle relaxers because there wasn’t much else he could do.
After meeting with him, I started the three-year-long process of finding out why my body rejected food.
The first gastroenterologist did blood work and took samples of my stomach lining, but he did this after telling me to fast. ThankfullyI’mm not a great listener, and I am hypoglycemic. I knew there was no way I could drive 30 minutes with a foggy brain to get my blood work done. So I ate half a bagel, thinking I was safe. What I thought was no big deal actually made the results confusing.
Here lies the first problem about this disease: it’s hard to test for Celiac unless your body is attacking itself and the only way to do that is if you’ve eaten the food that causes the attack. So, because the blood work had such low levels for Celiac and my stomach sample didn’t, he dismissed the results. I left the office with a diagnosis of IBS and a new prescription.
Well, when you take six pills that may cause drowsiness, they will cause drowsiness. So I took all the pills, and I still could not eat. This problem brought me to gastro number two and three.
I wasn’t sure if I had anything left to test after two colonoscopies and countless amounts of blood work later. I was getting blood work done so often that I was in the lab twice a week every two weeks. This happened because of a fault in the medical system. I had requested the labs to share the information with all my doctors, but the results were never sent to the offices simultaneously. The doctors were all looking for different reasons for my illness but, none of my symptoms was a perfect match for the ailment they thought plagued me.
My rheumatologist sent me for a bone scan. When the results came in, he said my bones looked like they belonged to a 45-year-old woman, not a 20-year-old. I took more pills to help my bones heal, and for the most part, they did help. I felt a weight lifted off my shoulders and that I might have finally figured out what was wrong with me.
That was until one night when I was drinking Guinness beer, and my throat started to itch. Shortly after, it was becoming tight. Thankfully I was with a friend who had a shellfish allergy. They suggested that I should take a Benadryl. Things did get better, not 100%, but I didn’t die, so I racked it up as a win.
I told one of the gastro I was seeing about what happened they said it was unrelated. Yet, they gave me even more pills to combat the newest problem.
I use the term function lightly because 95% of the time, I was left with a head fog when I ate gluten. The fog was so aggressive that it felt as if I had taken sleeping pills and stayed awake for far too long. Taking ten pills that may cause drowsiness and living with a constant head fog, it was a wonder that most of my professors didn’t think I was constantly high the entire time I was in class.
After that lovely dialogue, I found a new fourth gastro. This time it was a woman, and while we were in her office, she listened to me explain my medical history while reviewing my chart. I stopped talking when she chuckled, closing the folder.
“I don’t know why they didn’t see this before,” Dr. K said. “Because the first doctor, if not the second but most certainly the third doctor should have seen you have Celiac Disease.”
“What? What is that? What pills do I need to take” I was so excited to hear that I wasn’t crazy, and there was a name for everything I felt.
“There isn’t a pill. It’s just a diet””
This was all in 2006 or 2007. I can’t remember specifically, but gluten-free food was awful. The bread tasted like sponges. There weren’t many options out there for me. I would “fall off the wagon,” as my mother called it, eating a whole bag of goldfish and laying on the bathroom saying the pain was worth it. Some days I’d sneak out and get a spicy chicken sandwich from Chick-fil-A.
In 2009, I said, “Fuck it. The pain isn’t worth it” Gluten-free started to become a fad, and there were more options for me. But really, my health was all that mattered. I couldn’t spend days anymore lying in pain. I was done with college and had to grow up. People weren’t going to excuse me because I was an idiot. This was the last year I was under 100 pounds.
Now I am healthy.
In the beginning, it was weird to not feel sick or in pain every single moment of the day. I almost missed the feeling because it was so normal.
It’s been out of my system for so long that the attacks happen quickly and painfully. Now, if I “get gluteneted,” I know within minutes. Even a tiny amount like eating french fries that could be cross-contaminated has become a big decision. I chose to eat naturally gluten-free things unless I wanted pasta or a burger with a bun. But I do love lettuce-wrapped burgers, so they tend to win.
My journey isn’t over.
This a lifelong process, and with 30 closing in on me, I know kids are in my future. I have to be even more careful than if I get pregnant. I do not eat a single thing with gluten because it can cause a miscarriage. Thankfully that chance is slimmer since I have been pretty good about following my diet, but there is always that chance that a waiter doesn’t take me seriously or someone in the kitchen misses it.
Maybe more people will start to understand this isn’t a fad but a disease. I still cringe when asking for my special menu because I know they are thinking, “Look at the skinny girl just being trendy.”
Sorry, I’m not being trendy. I’m just trying to stay alive.