Alpha-Gal Syndrome: It’s Not a Texas Thing

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Lone star tick

By Carolyn S. Frahm

It’s the lone star tick!

Three or four times a week I would break out in hives. This reaction would always happen around midnight. A cold shower and Benadryl would finally give me some relief. These symptoms persisted for five years.

One night, the hives covered my entire body and my throat started to close. With three young children asleep and no one to watch them, I hesitated to wake my husband. Yet I knew that I needed to go to the Emergency Room. We lived in the country and it was a race for time to get to the ER. With minutes to spare, we made it. I was having an anaphylactic reaction.

Finally, blood tests were ordered. The outcome was that I was allergic to red meat, pork and some cheeses. Yet no one knew why.

That all happened at least twenty-five years ago. Fast forward to 2009. I was reading the Washington Post and there was a front-page article in the Lifestyle section about a man who broke out in hives every time he ate red meat. I yelled to my husband: “A doctor at UVA has discovered a link to my allergic reactions!”

Dr. Thomas Platts-Mills, head of the University of Virginia’s Division of Asthma, Allergy and Clinical Immunology, had been bitten by a lone star tick and had the same symptoms I had. He and Dr. Scott Commins began to research into a possible link between tick bites and allergic reactions. Dr. Platts-Mills’ research began when he discovered that the sugar, alpha-gal (galactose-a-1,3 galactose), IgE, found in most mammals, was in the cancer drug cetuximab and it was causing allergic reactions in patients from certain geographical areas. The mystery deepened when reaction to red meat was happening in the same geographical locations.

After much testing of patients and on himself, Dr. Platts Mills determined that the bite of the lone star tick caused the allergic reaction. I spoke with the doctor recently and he said, “At first we didn’t believe the tick was the major cause.” But in November 2007, Dr. Platts-Mills ate three lamb chops and broke out in hives hours later. After testing his blood weekly, he realized his IgE (sugar) levels went up over a three-month period. He remembered that he had been bitten by a tick in August. 

Allergic reactions to, say, peanuts or bee stings, are an almost immediate, whereas the red meat allergy reaction takes three to six hours to occur after ingesting the meat.

The latest research shows a link to heart disease because of the build-up of plaque in the arteries. “We think it is real,” Dr. Platts-Mills said. “I eat lamb and five hours later, I’m covered in hives. What has taken five hours to get there? The only logical explanation is fat particles. That’s where our research is going.” 

Most causes of alpha-gal syndrome occur in the south, east and central United States. But,

the condition is spreading to the north and west.  

Deer are the primary breeding hosts for ticks. The process begins when a tick bites a cow, sheep, or goat and alpha-gal molecules are released into the animal. When a tick that carries these molecules bites a human, alpha-gal is released into the body. Alpha-gal syndrome is also found in Asia and Europe. Many people do not know they have the syndrome, but symptoms may include: 

hives

itching

swelling of the lips or face

wheezing or shortness of breath

stomach pain, diarrhea, or vomiting

    

I have also been in touch with Dr. Scott Commins, who met with a group of us from the Rockfish Valley in 2015. We all had the alpha-gal syndrome. Dr. Commins is currently the Associate Chief for Allergy and Immunology and Medical Director for the University of North Carolina’s Allergy clinic in Chapel Hill. His primary interest is alpha-gal syndrome. “Investigation into the alpha-gal syndrome [AGS] is likely to reveal novel insights into the causes and consequences of all allergic diseases,” he said. “The latest research published earlier this year formally establishes the long-held notion that tick bites are associated with the development of alpha-gal syndrome. Interestingly, in that case-control study there was an increased risk of developing AGS if a family member has AGS. The next studies are aimed at understanding whether the familial risk is an environmental one (e.g. exposure to same ticks) or a genetic one (e.g. predisposition of immune system to make an allergic response). Recently it has been found that AGS may associate with an increased risk of heart attack and research is underway to understand whether this link is due to tick bites, mast cell activity, red meat consumption, or the allergic response itself.” Dr. Platts-Mills also reiterated that the research now is the possible cardiac risk of alpha-gal.

No one knows how many people have contracted alpha-gal syndrome, but the latest estimates are 1 to 2% of children and adults in the U.S., according to the Nationwide Children’s Hospital. You can obtain a blood test at your doctor’s office to see whether you have alpha-gal, but extensive allergy testing should also be done to determine the severity of your allergy and the specific foods to be aware of that might cause a reaction.

Experts advise using Deet 20%, picaridin, when you are outside. If a tick is found it should be removed with tweezers by pulling it straight out and not twisting the tick. Dispose of the tick or take it to your allergist. The female lone star ticks are 1.5 to 2.5 mm in length, round and brownish in color, and have eight legs. They have a white dot on the female’s shield. These ticks do NOT carry Lyme disease.

The tick has to be attached for four hours or more to cause a reaction. Avoid uncut fields, brush, and grass. Dr. Platts-Mills said you can also get AGS from chiggers, but it is more likely to be transmitted by ticks.

The only way to avoid reactions to this syndrome after testing, is to not eat any mammal meat, dairy, organ meats, or products made from mammals such as gelatins. Symptoms may lessen or disappear overtime.

My reactions to red meat have not lessened over twenty-five years, but my reaction to pork has. I am enjoying bacon again! Yes, I miss hamburger, steak, roast beef, lamb and veal, but my cholesterol is good! Some people have to be careful about sauces, gelatins, even cosmetic ingredients and pills, but those have not been a problem for me. Everyone reacts differently and it can take years to figure it out. Always have Benadryl on hand or an epipen (epinephrine). Some people have had success with acupuncture. The good news (?) is that when you know what to avoid, you will be fine, unlike Lyme Disease and other tick diseases that can last a lifetime.  

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