Where do I begin in terms of when my symptoms started, and how I found out that all along it was sulfites causing me harm?
As far back as I can remember, I have always been tired and my stomach always hurts. I couldn’t run in the fun run like the other 4th graders. I took a book study of bowling as an elective in high school so I didn’t have to do PE. I slept more than all my siblings. Walking upstairs was tiring. Sometimes for no reason, I felt like I couldn’t catch my breath. Being lightheaded when I stood up was almost normal. Every time I got nervous my stomach hurt (not butterflies – it really hurt, like bloating, cramping) and I felt that physical effort was a lot harder for me than others. Everyone including me just thought I was lazy. Now when I meet people from my past and we talk about this, I say ‘well you know how I used to be so lazy, it turns out I’m just allergic to sulfites’. I made several appointments and spoke to so many doctors about my fatigue, shortness of breath, and nausea. Some worked me up for anemia, some attributed my symptoms to anxiety or being a busy medical student, and some frankly just blew me off.
I was diagnosed with Idiopathic Angioedema in 2008, and while I knew that physical and mental stress triggered my symptoms, I sometimes had flare-ups that I just could not explain. Many times a year I would have severe abdominal pain, nausea, vomiting, and diarrhea all night. The next day I would be worn out, but otherwise, I was okay. I remember a friend commented on how prone I was to get the ‘stomach bug’ to which I agreed, but felt maybe something else was going on. One time I got a ‘stomach bug’ twice in one week after going to the movies twice that week. In hindsight, red slushies, red #40 and high fructose syrup were upsetting my stomach (no more slushies for me). Not surprisingly, I didn’t have many flare-ups when I was living out of the USA. European countries have stricter restrictions on additives and preservatives.
In 2012 my husband and I enjoyed an amazing trip to Napa Valley. I indulged in plenty of wine, cheese, and dried fruit and after a once-in-a-lifetime sunrise hot air balloon ride, I drank some mimosas at brunch. That night, we stayed at our family’s house and as usual when I was around people, I acted like my stomach didn’t feel like it was exploding from the inside and that my whole world wasn’t spinning. As I would do during my flare-ups, I made secret trips to the bathroom to throw up all night.
When I got home my brother asked me about my trip. This was the day my whole world changed. He made one of the most impactful statements of my entire life. See, my brother is an incredibly intelligent, analytical, and brilliant person. He said “You doctors are all dummies sometimes. It’s not food. It’s a common link. There’s a common link in what you are eating that is making you sick”. I will be forever grateful for my brother. Having someone like him in my life is such a blessing. He is better than most in so many ways. He made that statement and prompted a question that would give me my life back.
Since the episode I had after visiting Napa, I started researching wines. I thought maybe it was the tannins in the wine. A search for tannins ultimately led me to discover sulfites. When I looked at a list of foods that contained sulfites, I was hit with a MAJOR ‘aha’ moment that would change my life forever. Going down the list of sulfite heavy foods I thought, ‘yes, yes, yes…’. All the foods that I would eat before I ever felt sick were on that list! It hit me like a ton of bricks, or maybe it felt like a heavy cloud lifted off of me. My life as I know it began that day.
[…] of reading labels or frustrated not being able to just grab something and go. At the beginning of my sulfite sensitivity discovery, I had to plan each meal out in detail. Over time, I’ve found many foods that I can eat safely […]
[…] I now know as flare-ups of Chronic Idiopathic Angioedema and abdominal pain after eating too many sulfites, I would fall behind. As soon as I felt better, I would make a push to catch […]
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