My Celiac Disease Diagnosis Story
Did it turn out pizza was trying to kill you or a loved one? Me too!
I decided to create this blog to catalogue all the research I’ve done on diet, autoimmune health, and digestive disorders since being diagnosed with Celiac Disease in the summer of 2020. Here’s a little about my personal story.
I used to work in the film industry as a cinematographer (the person in charge of the visuals of a movie by directing the camera and lighting departments). Sometimes the locations were far and distant and the hours were long and brutal… and sometimes there was no work to be had at all! At the time I was starting my career, women made up 2% of cinematographers in the film industry. We faced a lot of job discrimination so we started a group for women to help other women. Before my Celiac diagnosis, you’d often me hovering around the charcuterie board at female-themed networking events feeling full of wine and cheese. On set, I’d be at the crafty table smearing wads of cream cheese on a sesame bagel simply the bagels are free comfort food and they remind me of growing up on Long Island.
On a film set there is the days are long, usually 12.5 hours in total, with days often going into overtime, and all the meals and food you need are often provided up until dinner. Catering supplies a buffet breakfast before the start of the day. Often the food is low quality, but if there’s an omelette station with a local who could make a mean breakfast burrito, loooook out! “Crafty” supplies a table with snacks on it for the day, and often a small meal at 3 hours and 9 hours into the day. When days are particularly long and brutal, food is the main motivator used by producers to perk the crew out of their zombie states. Ordinarily it’s towards the end of the day with pizza, ice cream, chicken and waffles, or something of that nature. Occasionally, an actor or producer would have a connection to a bougie place and treat everyone to something slightly more interesting or healthy, like acai bowls. The crew gets very excited about this, especially when going into overtime after 12 hours of work.
In this environment, I had no control over my food. The food would get worse the lower the budget of the film too. Once I witnessed a caterer who cooked out of his trailer, picking the mold out of a bowl of shredded cheese. I also found multiple hairs in my food throughout those weeks of production.
Away from work, I enjoyed cleansing my soul from Hollywood muck by hiking through the Angeles National Forest, always bringing a subway sandwich to enjoy on the top of a mountain peak. Afterwards, to ease any lingering anxiety, I'd whip up a quick batch of homemade chocolate chip cookies by following the recipe on the back of the chocolate chip bag. Only half of the dough would make it into the oven to actually be cooked.
Looking back over my life… there were small signs something was wrong, but hindsight is 2020. While the symptoms I had escalated over time, I never thought during any of it that it could be from food!
Where there signs?
1990’s - I grew up in an Italian family on Long Island, New York. Mike’s Bakery was a short walk up the block for Sunday rolls, honey buns, sprinkle cookies, crumb cake, and black and whites. Only a couple shops down, we’d grab a slice for lunch at Taormina’s Pizza. Gluten was a delicious part of every day living.
During elementary school, every time there was a holiday celebration or it was someone’s birthday during elementary school, I’d feel sick or get stomach aches. It stood out as something my family noticed and made fun of. I ate gluten everyday, I also was a little awkward and had social anxiety so I never thought it’d be from cupcakes. Besides, I’d get worse stomach aches after drinking warm milk with sugar my grandma would make and I was fine every other time.
2000’s - I played sports in high school, and was good, but never excelled. I felt I’d get more tired quicker. At this age I started to notice more how food made me feel. When the main entree menu was mystery meat for school lunch, I’d often just eat the crinkly fries and feel like crap after. Once I made the connection that eating a ton of fries for lunch wasn’t making me feel good, especially for sports, I switched to something plain like a buttered roll, or roll with just salami on it. People would ask if that was all I was eating for lunch. I think I was looking for something that didn’t make me feel bad. In the late 2000’s I became a vegetarian, but the kind that eats a lot of gluten, cheese, and processed food meat replacements.
2010’s - In this decade things started to go wrong. Since high school I’d lost some weight, but in a good way, maybe about 10-15 lbs. I thought it was because I became a vegetarian and was eating healthier. Blood tests would show low iron and low vitamin D. Doctors would tell me, “Everyone has these results! Your iron is low because you’re a woman with a period, and everyone has low Vitamin D!” I didn’t think twice about it.
Then things started getting weird.
Feeling faint - Around 2010, I struggled to stay awake on overnight shoots. I thought everyone was struggling, but I was at a point I’d call “medically tired.” I thought I might just disappear. Also, my vision would start to black out when I was hot, or especially when standing still operating a camera too long. I’d simultaneously lose vision, get nauseous, and have to run to the bathroom. This happened on two significant occasions creating embarrassing moments for me in front of clients I wasn’t rehired to work for.
Actually fainting - I walked to Jamba Juice and right after I ordered my smoothie, I didn’t feel good and said “Can I have some water?” Then I actually fainted and hit my head on the counter. When I came to I couldn’t remember what happened, or hitting my head. They finally gave me water and said it looked like I was having a seizure, but no big deal. It was hot outside and I didn’t eat much earlier in the day. “I must not have been taking good care of myself.”
Fast Heart Rate - My resting heart rate was constantly in the 90’s and would shoot up to almost 180 when I was just laying around or walking. I saw numerous cardiologists and had monitors put on twice, but everything was normal except for slight SVT. I was going on hikes almost every weekend and my job was very physical. Always having a high heart rate didn’t make sense to me. After months and years of testing and pushing for answers that didn’t come, my doctor suggested I take beta-blockers ‘just because’ if I wanted to - but that solution didn’t address whatever was causing my problem so I declined.
Chest pain - I had en episode of such persistent excruciating pain on one side of my chest above my ribs that I went to urgent care. The urgent care doctor said the tissue around my heart was inflamed, I was having a heart attack, gave me nitroglycerin, and called an ambulance. At the hospital tests revealed it was “nothing, probably pleurisy” said a curt Russian doctor who walked away before caring to answer any questions.
Stomach pain - I went out for a movie and dinner with some friends. I had a glass of wine at the movie and we went to a pizza place after. During dinner, I had to step away, I suddenly felt so much pain in my upper stomach I couldn’t stand it. I didn’t need to go to the bathroom, it was just pain. I had to admit to my friends I didn’t feel good. “Oh, that’s happened to me” they’d say. I made it through the dinner, and home, then laid down on my floor trying to decide if I needed to see a doctor. I called my mom on the phone. “Oh that’s happened to me,” she said. “It’s probably just gas pain.” My level of pain was so high I couldn’t take a full breath in. I laid on the floor until it finally passed. I started guessing it was a reaction to the alcohol or some kind of malt or barley used in the pizza dough. I started looking up ingredients from the pizza restaurant to see what it could be. Maybe it was just gas!
2019 - I decided to be a part of a small (very low budget) short film. After a long shoot day and a night of wine with a friend, I’m traveling back from a location Seattle alone to meet a scuba operator to check out underwater film equipment early near LAX. It’s 4am that morning and I'm about to pass out inside a one room securely locked bathroom at the Seattle Airport. No one knows I’m in there. I make it out to tell the cashier at the cafe who I just bought a Gatorade from that I don’t feel well, just so someone knows. Then I disappear onto the bathroom again. I don’t just feel like I have to go to the bathroom to vomit, I have anxiety and feel like I might disappear off the planet. I barely make it on my flight. The next day filming in an indoor heated public pool I start to black out twice, but I wait for it to pass. Clearly I need just need some rest. I must not be taking care of myself.
2020 - It’s January. Everything appears streaked, like film that popped out of a projector. My eye is red and the pupil is shaped like a peanut going through mitosis. The ER doctor asks, "Did you have any recent traumatic brain injuries?" No! It ends up I have recurring bilateral uveitis that requires steroid treatment. The condition is “idiopathic,” but I decide to start looking into everything. Despite treatment it continues to recur for the entirety of 2020.
February - My head feels like it's going to explode from constant migraines. My vision is flashing and vibrating. Nothing shows up on MRI’s.
March - My rib pain is back and lungs sound like they're made out of rubber bands. No one can figure out what it is. It persists for three months.
April - Eventually I'm in the emergency room with severe chest pain thinking it could be the last day of my life, staring up at the ugly fiberboard white and black-speckled hospital drop ceiling, while a nurse futzing with a broken EKG machine is busy telling me I look exactly like his niece.
Summer 2020 - Many doctors appointments later, I finally got a Celiac Disease diagnosis, along with Crohn's Disease and Ulcerative Colitis. Is it the answer to all of my problems? I thought so. Little did I know it was only the beginning of my journey to wellness.
Over the past few years I realized wellness is a collaboration of medical help, lifestyle choices, diet, and mental health. I hope you can share my journey as I figure out how feel to confident sitting at my favorite pizza restaurant smelling the delicious aroma of fresh baked dough with nothing in front of me but a tasty drink.