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5 Big Myths About Alpha-Gal Syndrome

Updated 10/9/2017

Red meat allergy, also known as alpha-gal syndrome would seem like a pretty straightforward condition, but as it turns out, it’s anything but.  It’s no surprise that the internet caught wind of an allergy to red meat and ran with it; as tends to happen, a concept popped up with viral potential, and in the process of creating snappy headlines and attention-grabbing copy, facts have been distorted along the way. We’re here to clear up, in particular, 5 myths about Alpha-Gal Syndrome you’ve probably seen floating around in one form or another.

 1. Myth: Alpha-gal syndrome is like any other food allergy.

Reality: When alpha gal syndrome was discovered, it shook the scientific and medical communities to their core.  For the first time ever, a carbohydrate rather than a protein was found to cause life threatening allergic reactions, but the weirdness didn’t end there.  

Unlike other food allergies, alpha gal reactions take an average of 3-8 hours to start once a contaminated food item has been eaten, as opposed to your standard immediate sort of reaction.  This delay is generally credited with why it took so long for the condition to be recognized by science, and to this day it misleads people about why they are chronically and “randomly” ill on and off. What may seem like a cluster of strange symptoms (that are often misdiagnosed) is actually alpha-gal syndrome at work.

Add into the mix that it appears to be triggered by tick bites that cause a major immune system disruption and you have one seriously strange syndrome.

2. Myth: Red meat allergy is a vegetarian/vegan plot.

Reality: While offered up in good humor, this common response to first learning of alpha-gal syndrome ignores the full scope of the condition.  Were it actually a vegetarian/vegan plot, we’d certainly recommend a trip back to the drawing board to avoid the self-sabotage.

Vegetarians may be surprised to find they have developed the syndrome when milk products such as ice cream or whey powder supplements suddenly cause reactions(sometimes including anaphylaxis).  This is because the alpha-gal molecule can be found in any product derived from mammals, not just meat.

What about vegans then, surely they’d be safe? Not quite. A plethora of anecdotal reports supported by recent research has revealed that carrageenan, an additive made from red algae – used heavily in dairy substitutes and baked goods – can cause reactions in patients suffering from the so-called “red meat allergy”.  

On the bright side, if you do fall victim to alpha-gal syndrome, poultry, fish and other non-mammalian meats remain on the table as perfectly viable alternatives.  Many people say that ostrich and emu taste just like beef; while we’ve certainly cleared up the myth that AGS is any sort of vegetarian/vegan plot in particular, we’re not taking the ostrich/emu farmer plot concept off of the table quite yet.

Eat more Ostrich!

3. Myth: Alpha-gal syndrome only happens to people bitten by lone star ticks.

Reality: While the lone star tick is frequently given flack for causing alpha-gal syndrome (AGS), it may be unfairly singled out (yes, we’ve just defended a tick) simply by being the first tick species proven to trigger AGS in North America.  Like many initial culprits, the first one proven isn’t by any means the only one to blame.

In Australia, an unrelated species of tick called the paralysis tick is the main culprit cited, while over in Europe a third species has been identified that’s called the castor bean tick. Recently, a 4th species has been found in South America.  All of these ticks have one particular thing in common: they’re all aggressive hunters of human hosts. More aggression towards humans tends to mean more bites overall, and more bites mean more potential for inducing AGS. With an estimated 899 different types of tick species out there in the world, it’s safe (and quite probable, for that matter) to say that there are plenty of other species that can also induce the syndrome – we just haven’t found them yet.

Unfortunately, many people with alpha-gal syndrome are unable to recall having ever been bitten by a tick to begin with. It seems the full extent of what can cause alpha gal syndrome remains largely a mystery, but one thing is clear: new tick bites make the condition worse regardless of how it begins.

The takeaway here is that yes, you should be mindful of yourself and surroundings when in an area that has a high prevalence of lone star ticks – but you should be just as mindful of ticks everywhere else too.

4. Myth: Alpha-gal reactions are obvious.

Reality: While some people with alpha-gal syndrome do experience the classic combo of rash, hives, itching, swelling, throat closing and blood pressure loss associated with anaphylaxis, others do not.  

Oddly enough, throat closing is especially rare as a reaction in AGS. In fact, where many other anaphylactic reactions have symptoms and tells that can be easily recognized and acted upon, AGS’s life-threatening reactions sometimes consist almost exclusively of a drop in blood pressure that can then lead to cardiac arrest. Considering a drop in blood pressure isn’t as easy to spot as swelling or the blossoming of hives and rashes across the skin, alpha-gal syndrome anaphylactic reactions are especially dangerous when outward symptoms may be next to non-existent for some people.

Less dangerous reactions are just as strange with the most common symptoms manifesting as various forms of digestive distress with or without rash/hives/itching. What may seem like discomfort to something that simply didn’t sit well from last night’s dinner or a stomach bug may actually be an allergic reaction; this is one of the many reasons why alpha-gal syndrome tends to get misdiagnosed.  The biggest danger of misdiagnoses when reactions are minor is that symptoms can suddenly take a turn for the worse after years of being little more than digestive upsets.  Incorrect treatments also mean people continue to suffer needlessly.

To make things even more confusing, and difficult to pin down, rare other reactions reported by patients include wet itching ears, joint pain, fatigue, menstrual cramping (including post menopausal) and sleep disruptions. While we’re not trying to create a readership of hypochondriacs, it goes without saying that it’s quite likely that you may not see people jumping into action when they see an early AGS reaction the way they might with other allergic reactions – simply because they likely won’t even know one has begun.

5. Myth: Alpha gal syndrome will go away with time.

Reality:  Unfortunately, this is not always the case.  

While there have been reports of patients recovering, some do not.  Those who have recovered usually do so by avoiding further tick bites and exposure to alpha-gal containing products, but this is by no means a guarantee that the condition will go into remission.  Those who do experience remission may find themselves suddenly reactive again in the future, either after a fresh tick bite, or seemingly at random and there is no long-term data available yet to predict the outcome decades down the road.

Due to the unique nature of this allergy, conventional allergy shots are not yet considered an option, and no real treatment beyond avoidance has been found to date. With the absence of a treatment, the only way to minimize reactions is to work on the formation of habits that’ll help avoid putting yourself into situations where a reaction may be likely. From avoidance of mammal products to a heightened awareness of tick-populated areas and how best to minimize the risk of exposure, the condition can ultimately be managed, but it’s not by any means something easy to accomplish. Fitfunner can help with the development of these habits. 

If you’re tired of seeing these myths spread around, join in with us to test out Fitfunner! We’re creating a game to help those with diseases like alpha-gal syndrome to create better habits in a way that’s both educational and fun. Shoot us a message on our Facebook page (or click the icon below) to get to be one of the first to play. It’s totally free, and you’ve got no obligation to stick around if you don’t want to – but you might just change somebody’s life with your feedback.

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3 comments on “5 Big Myths About Alpha-Gal Syndrome
  1. Tami says:

    Hello. I read your stories on Alpha Gal online. They were very good! Thank you for the coverage. I have had it for years and have had many anaphylactic reactions. My allergist, Dr Scott Commins, is one of the top researchers in the country.
    Thank you for sharing! It is a very scary disease.

  2. Cyndy says:

    I see Dr Scott Nov 1. I was told Tuesday that I test positive for alpha gal. I haven’t had need or pork for over a week. I feel very sick and not sure why. How long before u felt better?

    • MrD says:

      I hope you are starting to feel better, but if not try an extreme week of veganism and see how you feel at the end of it. Then add one thing at a time and read every label for any mammal products like milk powder or gelatin or whey.
      I’m no Dr but that’s how I fixed my diet to accommodate alpha gal

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