Not really knowing where to start, I turned to Google. Typing in “Angioedema” and the name of the town in which I was currently living led me to a holistic allergy and asthma specialist who actually had angioedema listed on his website as one of the conditions he could help treat. I was amazed and booked an appointment right away. It was my first experience with holistic medicine and I was very surprised that he took so much time to review my medical history and talk to me about my symptoms. He ordered a full allergy panel, along with a test for gluten sensitivity. He was not surprised when my tests came back and showed a gluten sensitivity that was OFF THE CHARTS, followed by a recommendation to follow a “strict and permanent gluten free diet.” He explained to me that the way wheat is grown and processed in America is much different than in Europe, hence why I had no reactions while living abroad…until the Girl Scout cookie incident. He even jokingly offered to write me a prescription to move back to Ireland—if only it were that easy! So I cut out the gluten, (along with eggs, milk, peanuts, sunflower seeds, pineapple, and bananas—according to my allergy tests) and followed a Candida diet for a few months to get that under control. I remember at my first appointment he asked about my energy level and I said it felt pretty normal. At my next appointment I asked if I could change my answer, because removing all those things from my diet had made me feel SO much better—I just hadn’t realized that my “normal” was so bad. My swelling seemed to subside for a while, but within a few months it was back in full force—accompanied by the dysmenorrhea and general fatigue. But I had moved to a new town, 4 hours away, and it didn’t seem practical to make the drive back to see this practitioner. They wouldn’t refer me to any holistic doctors in my new town, so I learned to just live with the symptoms, sticking to my gluten free diet (while adding the other foods back in since I hadn’t seen a direct correlation), in the hopes that it would help.
It was during this period of “self-management” that I started to pay more attention to my symptoms, and thought I saw a correlation between my hormone cycles and the angioedema. Usually the swelling would be worse during the week before my period, which oh-so-nicely accompanied the dysmennorhea. During a routine visit to a new “holistic” OBGYN, I mentioned this, and she immediately put me back on birth control pills to regulate my hormones along with an antibiotic, which seemed to make it all worse. After a horrible three months, I decided that was not working for me and I stopped taking the medications. I went back to thinking that I was crazy and there was nothing that could be done about the random swelling and other symptoms. It probably goes without saying that I was also not impressed with her supposed “holistic approach” and ended up switching practitioners.
It was a few months later that I began to get horrible stomach pains, especially after drinking alcohol or eating sugar. I would wake up in the middle of the night with horrible stomach pain that usually led to vomiting. It was also during this time that I was continuously sick—colds, stomach flu twice in one quarter, and even the dreaded hand, foot, and mouth disease. I seemed to pick up every single bug that was out there and it would knock me down with a vengeance. I also continued to endure the monthly dysmenorrhea, with symptoms such as nausea, vomiting, feeling faint, diarrhea, and horrible cramps. All this to say, I was spending a lot of time laying on the bathroom floor (not my favorite place in the whole world), and missing a lot more work than I should have. Enter my roommates, co-workers, and a new man in my life (who happens to now be my husband), who finally convinced me that just because this was MY “normal” doesn’t mean that it actually IS normal. I showed up to work on a Friday with ANOTHER ridiculously swollen face and my boss lovingly said “why are you here? You need to go to the doctor.” She recommended an internal specialist, but when I called there was a 2-month waiting list. So I tried a naturopath who a few of my friends had recommended (and who normally had a 2+ month waiting list) and miraculously they had a cancellation for that very afternoon! That is where Part 4 begins….