If you’ve read my first post, you’re probably ready to learn how I ended up anaphylactic in Amsterdam. I was too. So going into my allergy appointment the Friday after my reaction, I was there for an answer.
I wish it would have been as simple as walking into a doctor’s office, listing my symptoms and what I’d eaten that day, then walking out with a diagnosis. Or as simple as a skin-prick test, blood test, or any test that could tell me that sulfites were my problem. But then I would’ve known a long time ago and of course that would’ve been too easy. The thing is that sulfite allergies are confusing, hard to pin-point, and vary from person to person. My diagnosis was based on my medical history, what I’d eaten in the 4-5 days leading up to the reaction, symptoms day to day over the past 6 months, and a very long conversation with a doctor who had heard of sulfite sensitivities/allergies before.
Luckily for me, I had been actively going to doctors the past 3-4 years and had created a strong overview of my symptoms and history. To help you better understand, here’s what it looked like:
- 2011: Severe reaction to Wisdom tooth surgery, hospitalized for fainting, excessive swelling, low blood pressure, etc. Followed by a gastro reaction to antibiotic the following week.
- 2012-2014: Generalized anxiety, food aversions, fogginess, bad moods, trouble sleeping, acid reflux etc.
- 2014:
- January: Small reaction after eating a peanut butter sandwich and cookie following a party with a buffet.
- August: “Allergies” to peanuts, spinach, tea, soy, and some other random foods diagnosed via skin prick test.
- 2014-2016: Anxiety worsened, terrible at sleeping, IBS diagnosis, acid reflux worsens, etc.
- October-November 2016: Developed upper right side pain in my stomach/under my ribs when running. Felt like a runner’s “stitch.”
- 2017: Stitch keeps worsening, difficulty catching my breath when walking, couldn’t run or complete high intensity cardio or lifting, stomach was also continuing to worsen.
- January: Anaphylactic reaction to a sulfa drug I was on for strep throat. E.R. visit and a lot of prednisone helped me recover from it.
- March-April: My breathing was so bad some days I thought I had pneumonia, chest infections, etc. I also began to believe my gallbladder was not functioning due to the side pain, bad IBS, episodes of vomiting, and right shoulder and chest pain. One night in April was so bad I ended up going to the E.R. because I was sure something inside me was really wrong.
- May: I had extensive gallbladder tests that confirmed nothing was wrong and doctors also didn’t believe it could be my gallbladder given my physical build, diet, and lifestyle. This was discouraging because I was desperate for an answer.
- 2017 (cont’d): I stopped all physical activity, had friends driving me to class because I couldn’t breathe in the cold, was sick every weekend/party/event, and learned to deal with alarming stomach issues. I was working with doctors in gastroenterology, my general practitioner, allergists, and even a surgical oncologist. I had endoscopies, CT scans, chest X-rays, neck and spine X-rays, circulatory CT tests, allergy testing, etc. It was exhausting and no one had an answer.
- December: Finally in December 2017, I went to an allergist I had never seen before (the one who eventually diagnosed this allergy) and described my symptoms and history. She diagnosed me with asthma and I was placed on a rescue inhaler. HALLELUJAH! I had my answer and my side pain subsided (mostly) and I could run (slowly) and workout again.
- 2018-2019: With asthma treatments and a tonsillectomy in early 2019, I began feeling a lot better overall. My IBS, acid reflux, and immune system were all still struggling, but I thought my body was simply defective and the stress of grad school could’ve been wearing me out. (For the record I never believed that, but so many people told me that and what else was there to blame?
- May-October 2019:
- Okay, THIS is where things went downhill. Beginning on a trip to Chicago in May, my acid reflux was so bad I couldn’t hold down food or drinks and was extremely uncomfortable. I even had one “episode” -as I would call it- where I woke up in the middle of the night towards the end of the trip and thought I was going to vomit, pass out, die, etc. (dramatic, maybe). When I returned home I began taking omeprazole to try and help the reflux. My IBS was severe and I had a hard time ever feeling full, satisfied, or content with eating because I wasn’t absorbing any nutrients.
- After deciding to train for a half-marathon in October, I increased my activity and began learning how to train and run from June-August. I had to run slow, due to my asthma, but I was making it further and further. However, the more I ran, the hungrier I was and the more difficult it became to hold a decent pace. I was supposed to be getting better at running, but it only continued to get more difficult. My breathing was particularly bad on weekends we spent at the beach (i.e. eating and drinking and hot air). And a weekend in August was so bad I needed to take a steroid because my lips were discolored, I was lightheaded and dizzy, and I really felt I wasn’t getting air into my body.
- September was full of running, schoolwork, work, more eating, more weird symptoms, and illness. I was focused on school and busy in general and I assumed my ailments were because I was stressed. However, I did have one very scary “episode” on a Friday in September where I went for a 4 mile run and had to cut it short due to feeling faint and unwell. I came home and nearly passed out on my kitchen floor and my dad had to come home and make me toast to help me recover. I had just finished an antibiotic, had a severe IBS episode the night prior, and was of course stressed, so the cause of the episode was never uncovered.
- October: FINALLY the month my whole life made sense. I ran the half-marathon October 6th. I finished and survived, but let me tell you I’ve never used my inhaler more in a workout, had never felt worse physically, and the anxiety was severe. But I did it, I was happy, and I was still up and moving. Four days later was when I left for Amsterdam for a nice break from school, running, and work. Fast forward on that trip and you can read about the last day and scary reaction I had in my last post (if you haven’t already).
Okay that’s done. Props to you if you made it through that extensive, yet somehow simplified, history of my medical issues and crazy symptoms. It’s long, but to explain how I was diagnosed with a sulfite allergy, I need to include the whole story.
Providing this information to my doctor and walking her through what I’d eaten the day of my reaction, she looked at me very seriously and told me she was 99% sure I was highly sensitive to sulfites. It was a vague diagnosis, but the first time someone hadn’t said “I’m not sure” or “I have no idea.” She handed me a list of foods high in sulfites, I read the first column and told her I don’t drink wine anyway (because it makes me sick…weird), then went on my merry way. I was confident I could cut out wine, processed lemon and lime juices, and corn starch (some foods in the highest category). Easy enough. And all my weird reactions would make sense right? Wrong, very wrong. But to fully explain the extent of sulfites and my learning process, I’ll need another post. So stay tuned and get ready to learn all about sulfites and what it means to have a sensitivity to them!
