Alpha-gal symptoms & the mammalian connection
Sharon Forsyth, founder of Alpha-gal Alliance, wants people dealing with alpha-gal syndrome (AGS), also known as the “red meat allergy,” to have all the information they need to help manage symptoms. AGS is an allergy to mammal meat and mammal products resulting from the bite of a lone star tick.
AGS doesn’t develop unless the person has had a bite from a tick carrying the sugar molecule in its saliva. Anyone who has had a tick bite followed by itching or other allergic reaction days or weeks later may be developing AGS.
“You don’t need to eat a mammal to react to one,” said Forsyth, listing cows, pigs, goats and sheep as the primary culprits. “Of all the livestock exposures, fluids, such as amniotic fluid, seem to the most dangerous. Assisting during calving or other mammalian birth processes could result in a severe, life-threatening reaction.”
Mammalian saliva and blood are troublesome for those with AGS. “If you’re processing carcasses or have another kind of blood exposure, you could have a severe reaction,” said Forsyth.
Exposure to livestock waste, contact with animals such as touching or milking, fumes from waste or the animals themselves can illicit allergic responses. “People with AGS tend to react to airborne exposures,” said Forsyth. “Also problematic are products used for livestock care, especially balms such as those used on cow udders that contain lanolin, which comes from sheep’s wool.”
For many, AGS causes typical allergy symptoms such as itching, rashes, hives, abdominal pain, nausea, shortness of breath and wheezing. Severe reactions can result in a dangerous drop in blood pressure, dizziness or loss of consciousness. Some reactions are delayed, and reactions don’t necessarily happen with each exposure.
Some of the more unusual alpha-gal symptoms include itching and swelling of the palms or soles of the feet. “This is often the first symptom that lets us know we have a serious reaction coming on,” said Forsyth, who has AGS. “With the GI variant, there are no hives or other classic allergic symptoms … Instead, you get abdominal pain, diarrhea and other IBS symptoms.”
AGS can also cause joint pain, and for some, this is the primary or only symptom.
Some who have AGS symptoms are initially diagnosed with IBS or sometimes IBD. Some have had their gallbladder removed simply because doctors couldn’t find any other cause for the physical symptoms.
Children can have any variation of AGS, but one unique presentation for youngsters is abdominal pain during exercise or sports practice, or only after eating certain foods. Some children may tolerate pork or other alpha-gal-containing foods, or may react only to beef or only to pork.
One of the most serious and life-threatening allergic reactions associated with AGS is anaphylaxis, which comes on rapidly with symptoms such as difficulty breathing, swelling of the tongue, lips or face and a dangerous drop in blood pressure.
“Seventy-five percent of us get this reaction, which is a higher percentage than any other food allergy – even peanut allergy,” said Forsyth.
Some people with AGS have only cardiac symptoms, and close to half experience cardiac symptoms during anaphylaxis. This is related to a drop in blood pressure. The result can be heart attack. Forsyth noted that sometimes that’s the first symptom, and it isn’t uncommon to find someone who has had a heart attack resulting from an alpha-gal reaction.
Forsyth urges those who know they have AGS to recognize all possible symptoms of an allergic reaction and know how to manage them. It’s also a good idea to teach family and friends to recognize the signs of a severe reaction so they can provide necessary assistance without delay.
Many people develop AGS without recalling a tick bite. A cluster of bites on the ankles or groin often appear to be chigger bites but are also the classic appearance of bites of the lone star tick’s larval stage.
“If you get larval tick bites, you’re more likely to develop AGS,” said Forsyth. “If you’re working or spending time outdoors in areas where there are ticks, don’t rule out the possibility of alpha-gal just because you don’t remember the tick bite.”
The most obvious clue that AGS has developed is a reaction after eating red meat – usually several hours later. However, due to the lapse of time or not reacting each time, people don’t always connect the consumption of alpha-gal-containing foods with their reactions.
Another important symptom is reacting in the middle of the night with hives, swelling, throat closure or severe abdominal pain. New GI symptoms or new joint symptoms that occur weeks or months after a tick bite are also suspect. AGS is now the 10th most common food allergy nationally, but in high-prevalence areas, it’s even more common.
If there’s any reason to suspect AGS, contact a physician, who should order an alpha-gal IgE blood test. However, many people who test positive do not actually have the allergy.
“You have to have a clinical history consistent with alpha-gal,” she said. “This means you have reacted to alpha-gal. Change your diet and see if symptoms improve. This is especially important if you have joint symptoms or GI symptoms because so many other issues can cause those.”
Standard skin prick allergy tests aren’t reliable for AGS because they tend to give negative results.
“The estimated number of AGS cases has grown exponentially,” said Forsyth. “This is partly because before, neither the general public nor doctors knew anything about alpha-gal, but now more people are being diagnosed. The other reason is that lone star tick populations are exploding. Lone star ticks are spreading farther north and west, causing a huge increase in AGS cases.”
For more information on AGS, visit alphagalinformation.org.
Find Part 1 here. Part 3 will include information on tick prevention.
