Alpha-gal syndrome (AGS), characterized by the sudden onset of an often atypical allergic reaction to mammal products and sometimes carrageenan, was not described until 2009. As awareness of alpha-gal syndrome and the ticks that are known to trigger it spread, so too do the number of confirmed cases. Many of those unknowingly affected face an uphill battle as detailed descriptions of the various symptoms of alpha-gal syndrome are under published, and diagnosis is often preceded by misdiagnosis since alpha-gal syndrome is not yet listed as a differential diagnosis for a number of lookalike conditions in medical texts and databases.
The story of misdiagnosis is especially common for those who do not recall previous tick bites, or who live outside the most affected regions. Those who have gone through misdiagnosis and are now diagnosed frequently lament “I wish I had known what to look for sooner.”, “I didn’t know trace sources were behind my other symptoms.”, and most of all “I hope no one else has to suffer as long as I did.” when they uncover the full extent and cause of their personal symptoms.
Here we discuss a variety of anecdotal symptoms of alpha-gal syndrome, commonly reported by people with alpha-gal syndrome, that they have traced back to the condition and corrected with diet changes. Many of the differential diagnoses confused with alpha-gal syndrome lack effective treatment, so knowing the culprit is alpha-gal syndrome and having a way to recover is invaluable. If you suspect you may have undiagnosed alpha-gal syndrome, consider talking with your doctor about seeing a specialist and being formally tested or diagnosed.
Part of what makes AGS so difficult to recognize is the complexity and variability of the reaction pattern. As more variants and factors are documented, diagnosis and recognition continue to improve. The fingerprint of AGS is becoming clearer, and a detailed food and symptom journal can now easily unmask cases with clear reactions. Unfortunately, milder cases and less clear reactions remain difficult to distinguish from other common conditions. Only recently have these murky symptom sets come to light as more and more patients report having old chronic conditions vanish like magic when they finally develop clear reactions to alpha-gal and are forced to change their diet.
Disclaimer: We are not doctors, nor medical professionals. If you are experiencing any potentially threatening symptoms of alpha-gal syndrome, be sure to see your family doctor to receive the help you need.
Reaction Patterns and Influencing Factors
Beef, the meat of cattle, is usually the first mammal product to start causing clear reactions, and a delay of 2-6 hours is common for clear reactions from it.
Reactions in less than 2 hours, or even within minutes have been documented in people with AGS that have consumed organ meat such as pork kidneys which have especially high concentrations of alpha-gal. Some documented cases from Europe do not present with a clear reaction unless the affected individual specifically eats kidney, suggesting that mild sub-clinical forms of the allergy that do not produce a clear reaction with meat may be more common than realized in populations that do not consume organ meat.
Exercise and alcohol consumption can also make the difference between a clear and obscure reaction taking place as well as reduce the amount of time before a clear reaction begins. It is thought that alcohol increases absorption of alpha-gal and thus causes faster, stronger reactions. Exercise seems to play a role in worsening all food allergies and AGS is not an exception.
People who are reacting to a trace exposure from dairy, gelatin, or carrageenan may experience a much longer delay before a clear reaction, and/or only experience the less obvious low-level reaction symptoms.
Further complicating matters are biphasic reactions, which may result in two reactions as much as 72 hours apart without reexposure, either of which may be stronger than the other. Biphasic reactions expand the timeline even further for a major reaction, but a long term detailed symptom and food journal can help clarify that this is what is occurring.
Those experiencing the symptoms of classic anaphylaxis, including rash, hives, itching, swelling, blood pressure drops etc, for unknown reasons are usually diagnosed with idiopathic anaphylaxis or a mast cell condition unless a specific allergen can be found. Because alpha-gal allergic reactions can be delayed by many hours, and not every red meat exposure may result in a full anaphylactic reaction, it is easily overlooked that the source is, in fact, mammal meat. Additionally, standard allergy panels do not yet include alpha-gal specific detection. All of these factors complicate diagnosis, but many doctors are now aware of these facts, and most people suffering from classic anaphylaxis symptoms will be diagnosed through a specially ordered blood test and/or case history. However, the same can not be said for the less classic allergic presentations that often precede these reactions until another tick bite suddenly sends the patient over the edge.
For whatever the reason, many people with alpha-gal syndrome experience anaphylaxis symptoms as a combination of digestive distress, fatigue, and blood pressure drops without any sort of clearly visible external change. Again, these symptoms begin hours after the consumption of alpha-gal containing products like mammal meat, milk and/or carrageenan. Blood pressure drops may lead to cardiac arrest in severe reactions and are no less dangerous than classic food allergy reactions that impact breathing. Indeed, they may be more dangerous as warning signs may be few to none. While not as clearly allergic in nature as classic anaphylaxis, these reactions are very obvious when looked for and can be used just as easily in recognizing the characteristic delayed reaction pattern described earlier.
Digestive ailments can also occur in isolation or as part of anaphylaxis and follow the same delays as other symptom sets caused by alpha-gal syndrome. This can lead to misdiagnoses ranging from irritable bowel syndrome to acid reflux disease to gallbladder problems. Any idiopathic digestive condition is suspect. Digestive distress usually begins 2-6 hours after eating red meat, and by those sensitive enough to react to dairy or carrageenan, longer. The symptoms of digestive distress include any of the following: upset stomach, constipation lasting for several days (may be chronic in those who eat red meat frequently), diarrhea, gas, cramping, bloating, pain around the gallbladder, nausea and dizziness, vasovagal response, and heartburn. When alpha-gal related, removal of mammal meats will usually end symptoms, but some may also need to avoid cross contamination, dairy or carrageenan before recovering. Digestive distress may be the most common and least recognized presentation (outside of allergy specialist offices) of alpha-gal syndrome, but the timing of onset after eating mammal meat can be used as a clear indicator of a reaction when looking for the alpha-gal pattern.
Low Blood Pressure
Occasionally, someone may experience mild blood pressure drops without a large digestive reaction nor external signs. Symptoms of low blood pressure include dizziness upon standing, generalized dizziness, nausea, seeing stars, tunnel vision, syncope, anxiety attack or feelings of impending doom, momentary blackout without losing consciousness, loss of consciousness and/or cardiac arrest. Patients have reported being misdiagnosed with generalized hypotension or orthostatic hypotension prior to their alpha-gal syndrome diagnosis. Anxiety disorders may also be confused with frequent blood pressure drops. Tachycardia may also be experienced in some cases. When alpha-gal is responsible for these conditions, they will clear quickly once diet changes have been made but may persist while trace sources remain according to those who have experienced this symptom set. It is much harder to pair blood pressure changes with the diagnostic pattern describe earlier as blood pressure may continue to be erratic in the days following an initial reaction.
Although breathing difficulties are uncommon when a person reacts to ingesting alpha-gal contaminated products, for an unlucky few, airborne alpha-gal is a problem.
When mammal products are cooked, especially when fried or smoked, small amounts enter the air. When a person with a severely sensitive case of AGS breathes in these droplets they are at risk for major uncontrollable coughing fits and immediate responses typical of airborne allergies. Additionally, some people report experiencing mild digestive problems or joint pain the next day. Burning eyes, runny nose and areas with open cuts turning red and swollen are also frequently reported in those sensitive to fumes. Washing after an airborne exposure may help reduce further reactions if any of the vapors redeposited on the skin.
Surprisingly, few people with alpha-gal syndrome experience notable allergic reactions to pet dander. This is assumed to be because most household pets such as cats and dogs do not have a strong alpha-gal expression in their skin cells. However, reactions to pet saliva and even farts are frequently reported. According to alpha-gal patients with pets, changing your pet’s diet to one that uses non-mammal meat can help tremendously, and HEPA air filters are not a bad idea.
Reports of airborne reactions to skunk smell, or when near cattle and livestock are not uncommon. Candles, air fresheners, cleaning products, and personal scents are other sources of fumes to which reactions have been reported.
Those experiencing mild reactions with low tolerance are the most obscure group of alpha-gal sufferers. Often such individuals have had some of the other presentations in the past (and may have even been diagnosed via blood test), but have since recovered. Or they may still have reactions to large exposures, but experience additional symptoms compared to other patients when even small trace sources enter their diet. These symptoms include fatigue, headache, body aches, uterine cramps, wet itchy ears, hair loss and joint pain. These types of presentations have differential diagnoses of rheumatoid arthritis, fibromyalgia, and other idiopathic or autoimmune conditions.
Further complicating the matter is that evidence is building to suggest that other immune changes and conditions may be more common in those who have alpha-gal syndrome. It remains unclear what this relationship may be and preliminary work has yet to reveal any significant genetic risk factors for developing alpha-gal syndrome, though when scientist looked closer at patients with B and AB blood types, they found them to have several different antibody presentations beyond the classic igE that causes allergic reactions. Such complexities may account for some of these symptoms not normally seen with allergies.
According to patients previously diagnosed with autoimmune and/or idiopathic conditions, when alpha-gal syndrome is a factor, highly vigilant avoidance of trace sources brings relief/remission. This is reported anecdotally most frequently by those who were experiencing joint pain and/or fatigue, but the specifics and prevalence have not yet been formally studied.
Have you experienced strange symptoms of alpha-gal syndrome? How did you find out you had alpha-gal syndrome? Tell us about it in the comments section below. While many of the symptoms themselves can be (uncomfortably) manageable, building the habits necessary to avoid situations where a reaction may occur is one of the surest ways of avoiding them. This is where Fitfunner comes in. We’re striving to put together an effective and fun way to build the habits you need to stay reaction-free, all with the help of a fully supportive community by your side.