“You’re sick, you’re starving, you’re scared.”
That’s how one woman explained the first stages of suffering with alpha-gal syndrome (AGS), a rare, tick-contracted disease that can cause an infected person to become highly allergic to mammalian meats – even just their fumes – and dairy.
“You need to sit with the suck a little bit,” Courtney from Alpha-Gal On A Dime told newbies. “This does suck. It’s going to be a life-changer. But it’s doable.”
And that’s what AGS seems to be: a life-changer.
What is alpha-gal syndrome?
AGS is a type of food allergy to red meat and other products made from mammals, often caused by a Lone Star tick bite, as described by the Mayo Clinic.
A bite from the Lone Star tick can transmit a sugar molecule called alpha-gal, or galactose-α-1, 3-galactose, into a person’s body, which triggers an immune system reaction that later produces mild to severe allergic reactions to red meat – such as beef, pork, or lamb – or other mammal products, according to the medical center.
Though some folks say they have found relief from the allergies with things like acupuncture, the Mayo Clinic says there’s currently no proven treatment for the syndrome, aside from food restrictions.
The emerging syndrome has been reported in 17 nations worldwide, according to Frontiers, one of the world’s largest research publishers. Data show the number of cases in the United States has risen from just 12 confirmed in 2009 to 34,000 by 2019.
What are the food restrictions?
People suffering with AGS have varied symptoms and reactions, but, overall, it seems red meat is effectively off-limits. Some people, though, also develop an intolerance to dairy.
A post from Dietitians On Demand noted the food restriction challenges. “Once alpha-gal allergy is diagnosed, all mammalian meats and by-products should be avoided,” the post outlined. “Again, this includes, beef, pork, lamb, venison, mutton, goat, and bison, plus any food that contains red meat extracts. Some individuals with alpha-gal allergy must also avoid dairy products made from cow’s, sheep’s, or goat’s milk.”
The Centers for Disease Control (CDC) noted that some people with AGS can also be allergic to products made from or cooked with mammalian fat – such as lard, tallow, or suet – as well as meat broth, bouillon, stock, and gravy.
Fruits, vegetables, grains, nuts, legumes, poultry, eggs, and seafood are acceptable food sources.
Digging a little deeper on open online support groups, it seems those with severe allergies have much more to worry about.
One woman described the struggles of eating out at a restaurant, noting that even a veggie burger prepared on the same grill with meat patties is problematic.
“Eating out at restaurants has got to be the hardest problem for us with Alpha-gal,” the woman said. “Usually there is very little I can have. And if there is something, half of it has to be taken off.”
“I am also shocked that most restaurants grill veggie burgers on the same grill as regular meat hamburgers. Dangerous for us,” she added. “I feel totally out of control.”
Another person described a severe reaction from just fumes of mammalian meat.
“Just breathing it in causes a reaction,” the person said. “My fume reactions were almost immediate and respiratory. So I could not go into a grocery shop or a store with ready-to-go food. Eating in a restaurant was out of the question.”
“In our town we have a bike path that goes by restaurants,” the sufferer continued. “I would have a reaction from just riding by the area.”
“Final straw was when my son opened a can of chili in the house (to cook it outside) and I had a reaction,” the person recounted. “I wasn’t even in the same room.”
Others in the support group echoed their struggles with “fume reactions.”
There were also shared struggles about medications and vitamins being intolerable.
“Joint pain? I have removed all red meat, dairy, and pork from my diet,” one woman explained. “The only thing I can think of, which I have just recently found out, is the gelatin in my medicine I take. I take daily vitamins/fish oil and they have a lot of gelatin caps. If I remove it, will it go away? Should I take anything for it?”
One group member replied “YES,” adding that they “go vegan on the vitamins.”
Another post discussed struggles with blood pressure medicine that wouldn’t cause a reaction.
According to GoodRX Health, there are medications that “may contain animal byproducts that are important for their effectiveness or production.” Though, there are alternatives in some cases.
Sugar can be a struggle, too.
Radical Animal Rights group PETA said some sugars, including white and brown, can be processed through animal bone char. Folks in support groups online expressed reactions to some sugars, with some completely cutting it out of their diets.
Can it ever go away?
The Mayo Clinic says no cure is currently available for the life-changing allergy, but some of the “research is optimistic,” one diet site said.
“Research is optimistic, indicating that some individuals may be able to reintroduce mammalian meats back into their diets after a period of abstinence, as long as no additional tick bites have occurred,” Dietitians On Demand said.
Some AGS sufferers seemed to promote types of acupuncture to quell their reactions, specifically Soliman Auricular Allergy Treatment (SAAT), but it’s unclear if the treatment is proven effective.
A case series on the treatment, published in the National Library of Medicine, however, found that the “SAAT method showed effectiveness in the large majority of patients.”
“This alternative medicine approach to AGS management should be further studied in prospective trials with laboratory confirmation both before and after the procedure,” the abstract said. “This low-risk treatment shows promise in treating a medical condition that causes distress in an increasing number of patients.”