The kind of loopy name – alpha-gal syndrome – belies its significance. The alpha-gal syndrome is no joke and may even be mimicking diseases like post-treatment Lyme Disease, irritable bowel syndrome, mast cell activation syndrome (MCAS), orthostatic intolerance, or even fibromyalgia or chronic fatigue syndrome (ME/CFS). One paper stated:
“This case series illustrates the need to consider a diagnosis of AGS in patients with prolonged, nonspecific symptoms such as GI distress, fatigue, arthralgias, and mild cognitive dysfunction following a tick exposure.”
Alpha-gal syndrome is an allergic reaction to a sugar found in red meat (beef, lamb, pork, rabbit) that’s produced by a tick bite. It’s apparently been around for a long time but wasn’t discovered until 2002. Oddly enough, it first showed its face when a cancer drug trial of cetuximab – which contains the alpha-gal sugar – caused up to 22% of people in Tennessee to develop anaphylaxis within minutes of taking the drug. The fact that only about 1% of people in New York developed anaphylaxis suggested that something in the Tennessee patients’ environment was causing the reaction.
It’s the result of a strange process: a tick inserts a sugar called galactose-alpha-1,3-galactose into the skin. That same protein is also found in red meats, but apparently, the presence of the protein in a place it shouldn’t be – the skin – triggers an IgE antibody response to it called “anti-gal”.
When those affected by alpha-gal eat red meat again (or in some cases gelatin or dairy or other products), their immune system attacks the protein causing the symptoms. Note that the vast majority of people bitten by these ticks will not come down with alpha-gal – but a small percentage will.
A recent review of the syndrome called it a “fascinating new entity (that) has completely changed the paradigms of allergy because it’s directed against a carbohydrate or sugar (oligosaccharide) and the reactions can be both immediate and delayed. Because the alpha-gal sugar is found in many pathogens (Borrelia, Leishmania, Trypanosoma, Mycobacterium), our immune systems are primed to respond to it. Never before, though, has it triggered a chronic allergic reaction in humans.
Most websites state the reaction includes rash, hives, nausea or vomiting, joint pain, difficulty breathing, drop in blood pressure, dizziness or faintness, and possibly severe stomach pain and anaphylaxis. A published case series, though, suggests that fatigue and brain fog commonly result as well, and a survey added anxiety, depression, sleep disturbances, and irritability to the list. (It also suggested that the sensitivities might be able to spread to things that don’t contain red meat such as household chemicals, etc.)
Jennifer Platt, DrPH, cofounder and director of Tick-Borne Conditions United and adjunct professor at the University of North Carolina Gillings School of Global Public Health, reported in Healio that “AGS impacts every body system” and that “Many patients are still told, ‘it’s all in your head,’ prescribed anxiety/depression medication, and sent on their way.”
Most websites report that the alpha-gal sugar is carried by the most common tick in the southern and central regions of the US – the (Ixodes holocyclus) in Australia.
A recent review, however, which tracked alpha-gal allergy in people taking the cancer drug cetuximab, reported that of 76 patients studied in the southwest US, 33% developed hypersensitivity, and 21% of healthy controls from the same region had detectable cetuximab sIgE (i.e. had an IgE immune response to the drug). The number dropped to 6% in California and just 0.6% of healthy controls in Massachusetts. The authors concluded that cases clustered in areas with a high prevalence of Rocky Mountain Spotted Fever transmitted by Amblyomma americanum and Dermacentor variabilis.
Indeed, other websites noted that alpha-gal is suspected to occur in other ticks and cases have been reported in portions of the Western and Northern United States where the lone star tick is not present. The syndrome appears to be most prevalent in southern, central, and mid-Atlantic regions of the U.S. and has been reported on every continent except Antarctica.
- Alpha-gal syndrome is an allergic reaction to a sugar found in red meat (beef, lamb, pork, rabbit) that’s produced by a tick bite.
- A tick inserts a sugar called galactose-alpha-1,3-galactose into the skin. That same protein is also found in red meats, but apparently, the presence of the protein in a place it shouldn’t be – the skin – triggers an IgE antibody response to it called “anti-gal”.
- The reaction includes rash, hives, nausea or vomiting, joint pain, difficulty breathing, drop in blood pressure, dizziness or faintness, possibly severe stomach pain and anaphylaxis, fatigue, brain fog, anxiety, depression, sleep disturbances, and sensitivities to other factors.
- The alpha-gal sugar is carried by the most common tick (the lone star tick (Amblyomma americanum)) in the southern, central, and mid-Atlantic regions of the US – but is clearly present in other ticks as the condition is found in other areas of the U.S. It appears to be the most common in the southern, central, and mid-Atlantic regions of the US and has been found on all continents except Antarctica.
- It may mimic other conditions such as post-treatment Lyme disease, irritable bowel syndrome, ME/CFS, fibromyalgia and orthostatic intolerance.
- Alpha-gal syndrome made the headlines last week because of two CDC studies that reported: a) alpha-gal syndrome is much more prevalent than previously thought; and b) many doctors don’t know how to diagnose or treat it. With physician ignorance high, the data suggested that almost a half million people in the U.S. may have alpha-gal syndrome, most of whom don’t know it.
- The reaction is often missed because it usually occurs 2-6 hours after eating red meat (beef, pork, lamb). Note that if you have alpha-gal syndrome you may also react to a wide variety of products that contain meat by-products.
- Several antibody tests are commercially available (see blog). Note, though that most people who have antibodies to the sugar do not come down with alpha-gal syndrome. Still, a test could indicate if you are a candidate for it.
- Treatment usually involves staying away from red meats (beef, lamb, pork) and possibly foods or substances with red meat by-products in them, but one case series reports that twice-daily oral antihistamines can often help. After abstaining from red meat for a time some people apparently can resume eating it without symptoms.
Alpha-gal syndrome made the headlines last week because of two CDC studies that reported: a) alpha-gal syndrome is much more prevalent than previously thought; and b) many doctors don’t know how to diagnose or treat it. With physician ignorance high, the data suggested that almost a half million people in the U.S. may have alpha-gal syndrome, most of whom don’t know it.
Little Known, Hard to Recognize Syndrome
The syndrome is harder to recognize than other allergic reactions because it usually occurs 3-6 hours after eating something that contains the sugar. Even in people with alpha-gal syndrome, it doesn’t always occur. Leading one doctor called the reaction “consistently inconsistent“, plus one survey reported that the reaction can sometimes occur within ten minutes in some people. Plus, the reaction often takes months after a tick bite to manifest itself.
Because red meat products can make their way into many foods, the Allergic Insider reports that some people with alpha-gal may also react to soup-stock cubes, gravy packages, flavor ingredients in prepackaged products, meat extracts used in flavoring, dairy products (e.g., milk, cheese, yogurt, butter), canned tuna (which can be contaminated by dolphin or whale), chicken or fish cooked on a grill contaminated with red meat, pork-gut casings for sausages, pork fat (used for cooking and often found in pastries and venison burgers), and suet.
Gelatin-containing foods (readymade meals, marshmallows, dips, glazes, icing, some processed meats; yogurts and ice cream as a fat substitute; wine and juices as a clarifying agent) present another possible issue. An Australian study found that most people with allergies to red meat were also allergic to gelatin products.
There’s more – some shampoos, various vaccines, antivenom, and medical tablets (e.g., acetaminophen, oxycodone, lisinopril, and oxycontin), some ingredients made from red algae, such as carrageenan (sometimes found in beer, condiments, infant formulas, salad dressing – and “much more”.
Skin-prick allergy testing for an allergy to meat to meat is ineffective. If you suspect you might have alpha-gal syndrome, the Allergy Insider recommends that you ask your doctor for an alpha-Gal allergy blood test. You can also get “an allergen component test for alpha-Gal allergy which may help to pinpoint the specific sugar molecule that is causing symptoms” and helps to assess how severe your reactions are. Another test that assesses skin and basophil activation is reportedly the most sensitive but is costly.
Lymedisease.org reports that Viracor is the main laboratory for AGS testing and that “the Viracor specific IgE galactose-alpha-1,3-galactose” test can be taken at most commercial laboratories like Labcorp and Quest and shipped to Viracor. It also provides a warning:
“Warning: The test for alpha-gal is often mistaken for ‘alpha-galactosidase’ or ‘a-galactosidase A deficiency’—note these are the wrong tests! Because the test is so new, it is recommended to take the proper testing codes with you to the doctor and the laboratory. Click here to download and print a PDF on the proper testing codes for alpha-gal syndrome.”
Note, though, that because people can have the antibodies without having the syndrome it might be better to carefully monitor your reaction to red meat over time.
Given its transmission through a tick bite, it’s not surprising that a Lyme misdiagnosis is common. One survey found that 12% of respondents had been misdiagnosed with Lyme and treated accordingly. Sixteen percent of 518 Swedish patients who had been diagnosed with Lyme disease had detectable α-gal antibodies. The gut symptoms the syndrome produces – some alpha-gal patients only have gut symptoms – has led some to be misdiagnosed with irritable bowel syndrome. Given the syndrome’s ability to rapidly drop blood pressure, orthostatic intolerance is another possible outcome. Given the many symptoms the syndrome can produce, ME/CFS and fibromyalgia are two other possibilities.
Treatment usually involves staying away from red meats (beef, lamb, pork) and possibly foods or substances with red meat by-products in them, and possibly dairy products, but one case series reports that twice-daily oral antihistamines can often help. After abstaining from red meat for a time, some people apparently can resume eating it without symptoms.
Alpha-gal syndrome – an allergic reaction to red meat and red meat by-products caused by a tick bite – is a little-known disorder that appear to be much more prevalent than previously thought. While the exact number of people with alpha-gal syndrome in the U.S. is unknown, one estimate suggests it may be as high as 500,000.
It appears to be much more prevalent in the southern, central, and mid-Atlantic regions of the United States but has been found across the country. Several tests are available, but note that most people who carry the antibodies are not affected. The test would seem to be a way to indicate, though, if you are a candidate.
Charting one’s reactions to red meat (beef, lamb, pork) and possibly red meat products (which occur in a wide variety of foods and substances) – which typically occur 2-6 hours after ingestion or exposure – is one way to assess if alpha-gal syndrome is present. The reactions should be observed over a period of time as they may not consistently occur.
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