Live Like You Were Dying

The miracle of life should be appreciated. If there’s one positive thing to come out of my near-death experience, this is it. Having been clinically dead for 30 seconds and being resuscitated, I do believe that I have a much deeper appreciation for my own mortality. Not to be morbid, but there is an impending danger in suffering unaccompanied anaphylaxis even though I carry my EpiPen religiously. So, I want to live life to the fullest. To that end, I did something this past weekend that I’ve never done: skydiving!

Doug’s First Jump

To give a little background, I’m afraid of heights and also get nervous on airplanes. I must admit, I was fearful all the way to the jump. But I also have the never-give-up attitude that got me onto the airplane and out the door. It was a tandem skydive, and one of the best experiences of my life. I cannot describe the emotions I felt other than to say there was sheer joy, and no fear, once I began the free fall.

The jump was from 14,000 feet and included 60 seconds in free fall to cover the first two miles, and then 5-7 minutes under the canopy until the landing. I thought I would be enduring a less than pleasurable free fall and then relax once the parachute opened. But in fact, the free fall was very gratifying. It didn’t feel like a roller coaster at all. The free fall was loud, and I was screaming from the thrill, but I couldn’t even hear my own screams. The view of the sunset over Kansas City was breathtaking. When the parachute opened, it was a different experience, but just as enjoyable. I could talk with my instructor (Will at Falcon Skydiving) and I was able to occasionally steer us left and right as I soaked in the beautiful view. I realized at the end of the experience that my biggest fear was not the height or the airplane or the falling, but was the unknown.

To that end, it helps me refocus my purpose for this blog and my website. I want those who are new to Alpha-Gal Allergy Syndrome to be armed with as much information as possible because there are so many unknowns with this new and developing allergy. I also hope that each of you is able to live your life like you were dying.

Video: Tim McGraw “Live Like You Were Dying”

Cheers,
Doug

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Don’t Be Negative (Be Positive)

I believe that attitude is everything. Having a positive outlook not only improves your quality of life, but it also affects your interactions with others. We are social creatures after all. I jokingly like to say “Don’t be negative” because the statement itself gives off a negative connotation. It’s just as easy to say “Be positive” which highlights the difference a positive attitude can make.

This is not to say that anyone’s troubles or tribulations should be trivialized. Surely many of us suffer at the hands of poor luck and being dealt bad cards, as the saying goes. But it’s how we handle these situations and our responses to them that are the forces which we can control.

It’s so easy to fall into the woe-is-me mindset, especially when our bad experiences are compounded or severe. But it’s those experiences that make us stronger, not just the good times. In fact, I would argue that’s where character develops.

When life gives us lemons, it sucks! One thing that makes the process easier is having a good support system. Ideally, this includes having family or close friends to confide in, who are supportive and encouraging. When this isn’t the case, local groups or online support forums may prove beneficial. As a last resort, and the most difficult of all, is finding the inner strength and wisdom to make the best of a bad situation.

Another helpful coping mechanism, at least for me, is finding something on which to focus. Maybe it’s physical health, like lifting weights or running, or maybe it’s a career path or a hobby. Finding something that makes you happy while also allowing you to focus your energy can be beneficial to the healing process. (DISCLAIMER: I am not a therapist!)

I have come to expect that life will knock me around, punch me in the gut, and keep jabbing the whole way. But you know what? I will keep getting up and fight the good fight because as much as I would prefer the bad things didn’t happen, I also appreciate the preciousness of life and am grateful for the time that I have.

When I was diagnosed with Alpha-Gal allergy, it changed my life. Having a near-death experience has that effect on people. My diet is more restrictive and I must be very cautious with what I’m eating, how it was prepared, as well as monitor skin and household products. But it has been a blessing in disguise. I appreciate others in my life more now. And, I’m pursuing hobbies and other interests, like camping and reading. I’m decluttering my life and finding what’s most important. I’m more open-minded and more social than I have been in the past.

So if I can close with just one message, it’s my hope that anyone suffering will persevere through your troubles and come out stronger on the other side.

Because I enjoy humor and video games, here’s a quote from a game called Portal 2. Take care my friends, and be positive.

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ER Visit

Yesterday, I had an incident which sent me to the emergency room. Admittedly, I don’t know if it was related to my Alpha-Gal allergy or not. However, it did turn into a learning experience for many of the medical staff who had not heard of this allergy.

It was a lazy Sunday afternoon of no physical activity. I am on-call (as a Software Engineer) and had just received an alert for a production issue. Not uncommon, so I didn’t feel particularly anxious about it. But as I’m looking at things on the computer, I feel my heart flutter. I check my watch and see that my heart rate is 120 beats-per-minute (bpm)…it’s typically 60 bpm. This is my first warning sign. This happened when I had my cardiac arrest last year, as well as once this summer when I developed large welts after a cross-contamination reaction while camping.

My next step was to get my chest strap heart-rate monitor because I find it to be more accurate. I’m a runner so I already had one on hand and have it paired to my watch. It was registering 110-120 bpm as well. I also felt a little off. It’s hard to explain, maybe it was jitters or shakes, but I knew something wasn’t quite right. I immediately took a Unisom Sleep Melt and a Prilosec for antihistamines.

Not wanting to be alone, I called my wife who was out grocery shopping and learned that she was 30 minutes out. I explained my symptoms and told her I didn’t feel right. She asked if the neighbors were home and wanted me to stay on the phone with her until I was with someone. I grabbed my battery-operated Blood Pressure Monitor and headed next door. There, I acquired the 4 AAA batteries I needed and discovered that my blood pressure was 174/125. As I tried to take a picture the screen timed out, and so I took another reading, this one was 179/125, even higher! I knew that it was time to go to the emergency room. I asked my neighbor to drive me, even though it was only a mile away. I had my Epi-pen on hand just in case I needed it and thought if I had one more symptom I would use it: closing airway, hives, or flushness.

No other symptoms developed besides the high blood pressure and fluttering heart, so I checked into the emergency room without using the Epi-pen. As each nurse, assistant, and doctor entered (there were approximately six altogether) I would explain the alpha-gal allergy and point to my RoadID identification bracelet just in case. At one point, I did feel a scratchiness in my throat which would have been more of a concern if I weren’t already at the hospital.

As I sat there at the hospital, my blood pressure and heart rate returned to normal. They took some blood and ran some tests to rule out larger concerns, like thyroid issues. My electrolytes were good, EKG and echo were normal.

As those of us with Alpha-Gal do when we have reactions, I thought back to what I had eaten a few hours prior. Mostly the same as usual, though there is a new vegan protein powder that I have only eaten twice, and there was a new skillet that the eggs were prepared in which was washed thoroughly before use.

While we still don’t know the root cause, whether anxiety or allergy related or something else, I know that going to the hospital was the right thing to do. It is a teaching hospital, and perhaps sharing my story with them will help other people in the long run. After they monitored me for a few hours, I left with a prescription for Prednisone and assurances that seeking immediate medical attention was the proper course of action due to the very high blood pressure.

Please keep in mind this is only my experience, and I know each reaction and each person’s situation is different. I’m fortunate that I knew which medications to take that work for me at the first sign of symptoms and that my neighbors were home so I wasn’t alone. I wanted to share my experience just in case it helps others, even though it may not be related to Alpha-Gal.

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Test Results – Year 1

After learning of my Alpha-Gal Allergy diagnosis last year, I decided I would take the blood test once a year, in hopes that it will someday go away.

From what I’ve learned, it’s possible that your body can “forget” about the allergy if you can gain zero exposure for some amount of time. This may or may not be the case, but I have heard of people who have had this allergy who eventually no longer have it. So I’m holding out hope!

From a post on the Facebook support forums, I learned that LabCorp offers this test, Alpha-Gal Panel, although it does require a doctor’s order. There are actually two tests. One is only the alpha-gal IgE level, while the other (the panel) is the IgE number as well as the breakdown for beef, pork, lamb. I recommend the panel, but it does cost a bit more. Costs will vary depending on your insurance. There’s information on specific costs in the posting, but it’s not terribly expensive. I believe you can get this test done at other places as well, just so long as they send the bloodwork to Viracor, as that is the only place that does the testing, at least to my knowledge.

The test measures your IgE antibody response to galactose-alpha-1,3-galactose (alpha-gal), on a scale of 0-100 kU/ml. Last year, my results were 1.73, and this year they were 12.60. I’m a little saddened but not surprised. Although I try to reduce mammalian meat and by-products from my life, I have made mistakes. I know this because I have had a few reactions throughout the year, as I learn about things like hidden ingredients and cross-contamination. My reactions have not been anaphylactic, more like hives/welts, or increased heart rate, or swelling/redness.

I have heard that the number doesn’t matter. That is if you’re positive, greater than 0.35, then you have the allergy, and there are no levels of severity, per se. There are some who suggest that the higher the number, the worse the condition, as the chart on this page suggests. While there are even others who suggest that it’s the symptoms themselves that determine whether someone should be diagnosed with this allergy. This surprising bit of information comes from Dr. Scott Commins himself in this podcast. Dr. Commins and Dr. Thomas Platts-Mills are early pioneers in discovering this allergy.

While my test results were not ideal, I expected that would be the case. I will do my best for the next year and get tested again, remaining hopeful that I can overcome this allergy. Meanwhile, I’ll keep eating chicken.

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It’s not just a meat allergy, or food allergy

One morning, a few months after my diagnosis of Alpha-Gal Allergy, I was swishing mouthwash as part of my morning routine. For some reason this morning, I noticed in the mirror that my face was turning beet red.

Looking through the ingredients list of the mouthwash, I see glycerin. Some quick online searches reveal that glycerin can be plant or animal based. A quick search on the Facebook support group shows many others react to glycerin and avoid items that contain it as an ingredient.

The surprising thing for me with this revelation was that this Alpha-Gal Allergy was not simply what I eat. It’s not just avoiding beef, lamb, pork, and even dairy. It’s much more than that.

Glycerin, according to Wikipedia, can be either plant or animal based. Animal-based glycerin is from tallow, or beef or mutton fat.

Glycerin is also widely used in various products.

From Wikipedia:

In food and beverages, glycerol serves as a humectant, solvent, and sweetener, and may help preserve foods. It is also used as filler in commercially prepared low-fat foods (e.g., cookies), and as a thickening agent in liqueurs.

Glycerol is used in medical, pharmaceutical and personal care preparations, mainly as a means of improving smoothness, providing lubrication, and as a humectant. It is found in allergen immunotherapies, cough syrups, elixirs and expectorants, toothpaste, mouthwashes, skin care products, shaving cream, hair care products, soaps, and water-based personal lubricants. In solid dosage forms like tablets, glycerol is used as a tablet holding agent.

 

Wow! So I’m potentially allergic to all that! And that’s just one ingredient. When you look at other ingredients like gelatin, lanolin, and magnesium stearate, you start to see that this allergy is much more than just a meat allergy, and it’s much more than a food allergy.

If you look hard, you will find many products that don’t contain mammal. The best course of action is to look for vegan or plant-based alternatives.

For vegan mouthwash, I like Uncle Harry’s Remineralization Liquid for Tooth Enamel, and for vegan toothpaste, I use Redmond Earthpaste. After you purge your pantry of potential hazards, be sure to look over your toiletries and other non-food items as well.

 

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What can I eat…in a vegan nutshell?

Some people call alpha-gal the “red meat allergy” but it’s not as simple as just removing beef from your diet. It can be confusing to know what you can and cannot eat, especially for someone new to the allergy.

You may be asking yourself what happens if you eat something bad. Although we each react differently, you may develop a reaction which may run the gamut from gastrointestinal distress to anaphylaxis. One difference between alpha-gal allergy and other food allergies is that the reaction may occur hours after you’ve eaten something that triggers a reaction.

Mammal byproducts are in more than just red meat. In fact, mammalian meat is in more than just food, and I’ll need to save that for a future blog post. On this website, I’ll have dedicated pages regarding specific foods for easier reference. For now, I’ll rattle off some of the more common things I learned in my first year of living with this allergy.

You may have heard pork referred to as “the other white meat” but that was just an old marketing slogan. It comes from a pig, so of course, someone with the alpha-gal allergy cannot eat it. Alpha-gal is short for the carbohydrate galactose-alpha-1,3-galactose which exists in the cells of all non-primate mammals. It’s in the muscle tissue, fat, hair, skin, pretty much every part of the animal.

So, what can you eat? For many, a whole food diet works best. That is, eating as close to raw and unprocessed as possible while avoiding red meat. This includes plant-based foods like vegetables, fruits, legumes, nuts, as well as eggs, chicken, turkey, and fish. However, you want to be wary of hidden ingredients, food preparation methods, and cross-contamination.

For instance, breaded chicken sometimes will contain pork fat or lard in the breading, so you cannot eat it. You can eat turkey bacon, but you want to be cautious of turkey sausage, as the casing will often contain pork. Fish is best if it’s wild, rather than farm raised. I’m not sure of the reasoning here, but I believe that the concern is with the food that the fish consume. If you buy fish, look at the ingredients. It’s likely not just the fish, but some sort of preservative as well. Just because something is labeled chicken, turkey or fish doesn’t mean that it’s automatically safe. You must look at all the ingredients.

Dairy is an unusual topic. It naturally comes from a mammal, and so I recommend avoiding it. Some people claim that they have no reaction and tolerate it just fine. My personal decision is to avoid it completely because I’m hoping that my body will eventually forget about this allergy and I will overcome it, and the best chance I have of that happening is to reach zero exposure to the allergy triggers.

Checking ingredient lists is something you will find yourself doing quite regularly as you shop. Eventually, I will have a page dedicated to this because there’s just so much to cover. For instance, I was surprised to see that pumpkin pie contained whey protein. Although nuts are good, Planters nuts use gelatin to help the salt stick. Gelatin is derived from various animal parts, usually from cows or pigs.

The biggest surprise was when I reacted to ginger beer and found the likely culprit was the ingredient cane sugar. Cane sugar is processed over bone char to give it that clean, white appearance. When the doctor told me I was allergic to “red meat” ginger beer certainly didn’t come to mind.

Some red wines use animal-derived products as fining agents. A great website for determining if your alcoholic drink is vegan or not is www.barnivore.com.

Finally, you want to be cautious of cross-contamination. Some restaurants just cannot accommodate this allergy, no matter how much it’s explained and seemingly understood. I avoid Mexican food restaurants because of the lard and fat that may be in the tortillas and even the chips. If you eat food that is cooked on the same surface as red meat or uses the same utensils, or if food is mixed, you can easily develop a reaction. For this reason, I eat out very seldom and prepare most meals at home.

Even people who lead active lifestyles or are constantly on-the-go can find something to eat with this allergy restriction. For instance, my go-to snack is an RXBAR protein bar and a banana.

I know I have mentioned many things to be cautious of, but there is no reason to starve or feel overly restrictive with this allergy. In fact, you may find that you are eating healthier than ever.

 

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Launch

Today is exactly one year after my sudden cardiac arrest due to anaphylaxis, which I would later come to realize was caused by Alpha-Gal Allergy. The diagnosis came two weeks after the incident. In a way, I was relieved to have found the root cause. But also, I was curious about this rare disease.

Scouring through information online, I learned that you acquire this allergy from a tick bite from the Lone Star Tick. I don’t remember being bitten by a tick at all. However, in the weeks prior, I do remember finding four to five chigger bites on the top of one foot. It’s possible what I considered chiggers were actually larval ticks.

I learned what I can and cannot eat. At first, these lists were small, but as time progressed over the past year, both of these lists have grown.

It’s my hope with this website that I can help consolidate much of that information into one place to make it easier for others to learn about this allergy.

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