For several years now, I have been ruminating over the idea of adding a section to the blog about Alpha Gal Syndrome. You can tell when I started thinking about it by the change in my book review post titles; I added the “Book Review” designation in preparation for the day when I started including “Alpha Gal” posts. I get a lot of questions. I love to answer them; it is very important to share what I have learned with others, but have often thought it would be super helpful to be able to refer people who want in depth answers to a blog post or series. Today is that day I start to make that happen.
In my next AGS (Alpha Gal) post, I will go into more about what it is. For now, we will go with the most simple explanation: I am allergic to anything that comes from a mammal. It’s sort of like how getting bitten by a radioactive spider gave Peter Parker Spidey sense, except that AGS is transmitted by ticks and I itch furiously on contact with mammal products instead. Instead of Spider-Man’s origin story, which has already been done much better than I can do, I give you this Alpha Gal’s origin story.
It was a bright and sunny day in small town America, fourteen years ago today. There was a big family celebration to honor the matriarch on her milestone birthday. The pictures of Momo surrounded by her great-grandchildren pop up on my social media memories every year; several of them are now married or in college, every one of them has grown significantly since that day at small-town city park. It was a BYOB party: Bring Your Own Burger. There were no food allergies to worry about, and many of the families attending brought beef burgers from the cows raised in their own backyard pastures, including ours. Afterward, our family went back to sit on the porch and watch the kids run around the yard. And then I started itching. Furiously. Everywhere. Within hours, I was covered in hives, my throat was swollen to an alarming point, and I was struggling to breathe. I had taken a couple mega doses of Benadryl at the advice of a multiple family members who were nurses, and they had decided a trip to the Emergency Department was in order.
In 2010, in a small town ED, my beloved husband told the doctor we had no idea what triggered a reaction of this magnitude. I had no known allergies, but the only unknown of the entire day is that I may have eaten a beef hamburger that was not one we brought to the birthday party. The grillmasters had tried to group by family, but there’s a chance there was a mix-up. In the ED, we were informed that I could not possibly be allergic to beef. We were literally told, “No one is allergic to beef.” I was stabilized and released with orders to follow up with my doctor promptly. And we were promptly seen by our family doctor, who referred me to an allergist in the state capital, where they know all about obscure food allergies. State Capital Allergist told me, “No one is allergic to beef,” did a skin test that was inconclusive, and sent me home. At some point, ridiculously expensive Epi Pens were prescribed, and I was told to treat symptoms with Benadryl until they reached emergency level. Since all the highly trained medical professionals said, “No one is allergic to beef,” I continued to eat it.
Note about the quote: It is one we often use in our house, because it is uncanny how many people have said the same thing the same way in the course of our experience.
There were a couple more ED trips over the next five years. The slightly bigger small town where we lived finally got a Western Sizzlin’ and our friends would come from Small Town to eat dinner there with us periodically, finally realizing that we needed to end our evenings with dinner, because I developed digestive distress every time we ate. And then we moved to our current Big Small Town. Our first place here was in an apartment; we had some delightful neighbors, several of whom became friends and were very supportive after my beloved had to take me to the ED in the middle of the night. One came to me, intrigued by what I had told them about my experiences and certain it had to be the result of something systemic; E had been practicing as a hematologist in Iraq before her family came to the US and was in the process of becoming licensed to practice here. E collected all the information I could give and went into research mode. She came back to me after a week or two and asked if I have ever been bitten by something called a tick. I have lived and played in an area highly populated by ticks since middle school; it’s not uncommon to pull several off after walking out in the yard. Although E had never heard of such a creature - she informed me her neighborhood had bombs, not bugs - I could say with confidence that I have been bitten by something called a tick. She recommended that I cut out meat from all mammals for six weeks and see if I could detect a difference. Within two weeks, I felt better than I had in years! With no accurate blood test for Alpha Gal Syndrome at that time, diagnosis was based solely on symptoms and the results of an elimination diet. Unfortunately, information was extremely limited, and the sum of the information was to eliminate meat from mammals.
In 2020, I found a support group on social media and learned that there had been many advances in understanding AGS. I had not eaten meat from a mammal in six years, but was still having digestive issues. I had also developed a less-than-stellar reaction to the goat milk lotion I was purchasing from a friend who handcrafted her delightful products from the goats her family raised on their farmstead. Anywhere I applied the lotion would promptly itch, burn, welt, and peel. On flashbacks of that one time when I was a kid and watched The Silence of the Lambs to prove to my cousin that I am not lame, I promptly discontinued the lotion. But information from the support group helped me realize that products made from mammals can also trigger AGS reactions. I then went fully vegan. My digestion got better, my skin got better, the full body itching and perpetually slightly swollen throat got better! And then I found out that several people had gotten some relief by using a specific acupuncture procedure. I was skeptical, but the procedure cost was the same as a trip to the ED and I might not have to worry any more about cross contamination or ambiguously labeled ingredients. Arrangements were made, needles were placed for a 4 week stay in my ear, and six weeks after the needles were placed, I was able to eat a slice of cheese pizza at a social event and did not embarrass myself with GI distress! It’s not a cure, and relapse happens. However, I don’t know about you, but I am a huge fan of a GI distress-less life!
The last fourteen years have been quite a learning experience. Now, I would like to share those experiences with you, dear reader. Though, I have to confess that there are some parts I am not as eager to share; I do believe it is important for people to understand. In the case of someone who is also struggling with AGS, the embarrassment of sharing some of these experiences are worth it if they validate something strange you also experience. And while I do enjoy some creative writing, there will be no embellishment, hyperbole, or speculation on this topic unless clearly noted. So, buckle up, Buttercup… but not with a leather belt, if you are also an Alpha Gal (or Guy!)
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