It has officially been a whole month or so without knowingly ingesting any form of red meat. Notice how I said “knowingly”. There have been several instances where I have been served food that has certainly been contaminated with red meat.
This past Friday was my first follow-up with my allergy specialist after being told that I had contracted alpha-gal from a tick bite back in the Spring. The Dr had a few questions, and was very pleased to hear that I have not even bothered to try and eat red meat.
He went on to explain that my levels of the immunoglobulin E in my blood was the highest he had ever seen, and that I should never leave my house without my EpiPen because of how severe my allergy is.
Apparently, typical or normal levels are within 0.05%, the levels of immunoglobulin E in my blood tests came back at 8.5%.
Alpha-gal is quite fickle, in that I can sometimes tell within an hour, sometimes it takes around 3 – 6 hours before I can tell. But when it does eventually hit, it is clear that my food was not prepared correctly. For the most part the symptoms usually hit after a couple of hours after ingesting anything contaminated with red meat.
For me, it’s almost always starts out as a disorienting headache, bordering a migraine, and in some instances results in relentless I.B.S. style gastrointestinal problems that will leave you feeling like Harry in that particular Dumb and Dumber scene (yeah you know the one). Sometimes if the contamination is pretty bad, it gives me the worst heartburn/re-flux imaginable that results in me vomiting for hours on end. All in all, the experience is horrible and leaves me feeling completely drained of all energy. Alongside those symptoms, I have also noticed that it affects my asthma, making it a little more difficult for me to breath as well and leaves me with some cognitive/mental fog.
The first issue I had was just a few weeks after being told I had alpha-gal. My wife and I had went to dinner with a couple of friends and ate a Olive Garden. I had the Chicken Alfredo, as did one of our friends. I took the time to explain to our waitress that my food had to be cooked and prepared away from any red meat, she acknowledged that she understood my food allergy and actions that needed to be taken in order to safely prepare my food, well at least she said she did, she did not heed the warning.
We ate dinner, then went and watched HellFest at the cinema at the Huntington Mall. Later that night around 2am I woke up with horrendous heartburn so bad that I could barely breath and at one point coughed and stomach acid came out of my nose (it’s worse than having soda come out of your nose if you’re curious), so I went to the bathroom and the vomiting commenced. I tried several times to go back to bed but would have to get up a few minutes later to go back to the bathroom, so I finally just decided to fold up a towel and placed it between my head and the wall of the bathroom; this lasted for several hours before I could finally go back to bed.
Eating out at any restaurant has become quite difficult as there have been several instances where my food has just completely messed me up. Two most recently were Buddies BBQ in Huntington, yes I know; “Zach you ate at a BBQ place what do you expect?”. That is not the point, I explained to the waitress of my allergy, she said she understood and would notify the cooks, and 3 hours later I almost William Shatner’ed myself in front of two co-workers. The most recent incident was yesterday (Nov 18th, I’m slow on releasing these I know) at Outback Steakhouse. Once again, yes I know, eating at a steakhouse that I am asking for it, but that is why it’s called the food service industry, they are supposed to service my needs as well as everyone else’s.
Quick side note, I have come to realize that many restaurants will fry their foods in beef tallow (fat) instead of peanut oil which is quite common also. Since peanut allergies are much more common than alpha-gal, many restaurants have turned to beef tallow, which makes life much more difficult for me. Amber and I both told our waitress Haley that I have a food allergy and needed to speak with the manager before ordering. The manager (Clinton) came out and spoke with us and stated he understood, but his tone and body language seemed pretty apathetic towards the idea of someone being allergic to a steak.
Needless to say we ate, went and shopped around for a bit, and a few hours after we ate, the headache started. I had woken up with a headache that morning so I was not quite sure if it was that or that food. After we got home I could definitely tell it was from the food, severe stomach pains ensued, and a quick trip to the bathroom.
This is indeed a battle of sorts, but it’s honestly not THAT bad in comparison to many other things. I mean, it could always have been worse, I am so lucky that I don’t have Lyme disease. But the scary thing is that it has the potential to be very bad. An anaphylactic reaction is always looming, and I never know when it could happen. That is truly what makes alpha-gal so serious and quite terrifying. That’s why I called it fickle, it has it’s own kind of erratic changeableness, meaning that I could get tainted food one day and nothing happen, maybe I could get a headache, or an upset stomach/vomitting, or I could go into full blown anaphylaxis.
This diagnosis is very dynamic in that there is a wide variety of symptoms that one would normally associate with any number of ailments or illnesses. I was getting headaches almost every single day because of what I was eating for breakfast. I was getting what I thought was food poisoning almost every single time we ate out at a restaurant or at home, unaware that it was much deeper than just run of the mill food poisoning.
My plan in writing these posts is that you, your friend, or family member, or someone you know who may have these sort of symptoms regularly, or is already aware that they have alpha-gal, can read this and take something away from it. I am going to start compiling recipes and posting some of my favorites.
Some links to further assist with reading up on alpha-gal