During the past two years more than 200 people at a regional allergy practice have been diagnosed with a newly identified red meat allergy that is related to tick bites.
This allergy may be responsible for up to half of recurrent anaphylaxis cases without known causes, researchers say.
In many ways the allergy doesn't behave like traditional food allergies, but it is causing people to feel sick to their stomachs, break out in hives and in some cases go into anaphylactic shock.
For Emily Masters of Bedford, the allergy seemed to come on without warning.
"I'm curious why all of a sudden this happened," Masters said. "I'm 28, so why have I been OK eating meat for so many years and then this happened?"
Masters was diagnosed after she had a severe reaction following last year's July Fourth cookout at her father's house.
During the party she ate some couscous, potato salad, hummus, a hamburger and a sausage. With a known wheat allergy, she said she was careful to avoid wheat, eating the burger without a bun for instance.
Several hours later her stomach started to hurt.
"I thought I must have eaten wheat that was hidden in something," she said.
But the reaction began to get worse than any reaction she had ever had to wheat.
Soon her arm began to itch just inside her elbow. She asked her husband to run to a nearby gas station to pick up some Benadryl.
He suggested she come along so she could take the medicine faster. By the time they were leaving she had hives on her legs. In the car, she began to swell and it became hard for her to breathe.
They called 911.
"By the time I got to the ambulance, I was a red lobster and looked like a blimp," she said.
Masters spent the night at Bedford Memorial Hospital being treated for anaphylaxis.
After she was discharged, she made up her mind to find out what caused the reaction. She asked her friends for the list of ingredients in the foods she ate. And she made an appointment at the Asthma and Allergy Center in Roanoke, where she had previously been treated for her wheat allergy.
"I freaked out and I'm assuming its some mystery food and I've never had this before," she said. "The last thing I imagined was it was beef."
While being examined, Dr. Luis Matos was brought in to consult. Matos has been among the chief specialists diagnosing patients with this new allergy. Matos and his partners in Roanoke and Lynchburg have diagnosed more than 200 cases since a researcher at the University of Virginia first discovered the allergy. In many cases, the patients don't have any other allergies, Matos said.
"It's so new that we don't know exactly the full story of how people develop this reaction and the history of the allergy," Matos said.
But as Matos has learned the symptoms of the allergy, he has quickly been able to identify patients.
"Just because we are looking for it, it is giving us an option that we didn't have before," Matos said. "It's similar to other new allergies -- once you know it is there, you find it."
The Asthma and Allergy Center also has identified patients who have had milder symptoms, such as chronic itching or vague intestinal problems, who test positive for the allergy. In some instances patients had gone decades without knowing the cause of their discomfort.
"They thought they were crazy," Matos said. "In some cases, they were told they were crazy."
Dr. Scott Commins of UVa is credited with discovering the allergy.
"In the world of food allergy, the notion that an adult could have a new onset food allergy is unheard of," Commins said during a recent interview.
Last week he was in Roanoke presenting his research to physicians at Carilion Roanoke Memorial Hospital. The hope is to alert more doctors to the research and the new diagnosis and how patients can be helped.
"I think you are seeing these patients and you may not know it," he told the doctors gathered for the presentation.
Since publishing his research in 2009, Commins said he has heard from patients and allergists throughout the Southeast. He gets multiple e-mails a day from patients looking for help.
Making the discovery
The home economics queen Martha Stewart has a small role in this story.
Researchers discovered some patients had a bad reaction after taking Erbritux, the anti-cancer drug at the center of the insider trading allegations against Stewart. Some of these patients would have anaphylaxis.
Researchers, who included Commins' boss Dr. Thomas Platts-Mills, ultimately showed the negative reactions to the drug were associated with an allergic reaction to a sugar called galactose-alpha-1,3-galactose, or alpha-gal for short.
A study about it was published in 2008 in the New England Journal of Medicine. Ultimately the drug manufacture changed the way Erbritux was made to stop the problem.
But because nearly all common allergies are reactions to proteins, not sugars, Commins said he was extremely interested in the discovery.
Areas in the Southeast appeared to be unusually hard-hit by the severe reactions to Erbritux, so Commins decided to investigate how common the alpha-gal reaction was among anaphylaxis patients where the cause was unknown. About 20 percent of anaphylaxis patients don't know the cause.
Alpha-gal is a sugar that is found in all mammals, such as pigs, deer and cows. Those who have an allergy to alpha-gal produce an antibody that binds to the alpha-gal sugar causing the body to produce hives or go into anaphylaxis, Commins explained.
A simple blood test will show if a person produces the antibody to alpha-gal.
Masters' blood test, which Matos sent to be tested by Commins, came back positive.
The connection to ticks
Figuring out why patients had suddenly developed a severe allergy to meats in which alpha-gal was present was the next step.
Commins quickly realized that the geographic range of the Lone Star tick matched the geographic location of people who had developed this allergy. Both were in the Southeast.
"It just fits perfectly," he said.
Commins started asking his patients about their exposure to tick bites and chiggers.
"A lot of science can be serendipity," he said. "My boss [Platts-Mills] goes out in the woods a lot. He got chigger bites or seed ticks. He developed this allergy. So we started to make the connection."
Masters too has had a lot of tick bites and chigger bites. Last year, prior to her July 4, 2009, reaction, she said she was bitten by about a dozen ticks and hundreds of chiggers.
Commins said outdoor enthusiasts, including hunters and hikers, are often the type of people diagnosed with the allergy. He strongly believes it is related to the seed tick bites that people get by the hundreds. These are the bites from the newly hatched tick larva, as opposed to a mature adult tick. Often, he said, people in this area call these tiny ticks chiggers.
It's unclear what in the seed ticks is causing people to develop the allergy.
"My honest gut feeling is it is something in the saliva," Commins said.
He said that unlike Lyme disease and Rocky Mountain spotted fever, he doesn't think it is an infectious disease carried by the seed tick. Instead he thinks something in the saliva triggers the antigens in the alpha-gal sugar.
He is developing new research to focus on the relationship to the insect.
Finding a cure
Masters said she misses eating a hamburger on occasion. Others, especially hunters, are more adamant about their desire to eat meat again, Commins said.
But for now, the only solution to treating the allergy is avoiding meat products. For Masters and many others, this includes avoiding foods made with beef broth.
"It's the hidden stuff that I worry about," Masters said.
Commins is planning a study to try to create a tolerance in patients. He's waiting on approval from an institutional review board that monitors studies involving people.
"Even though I don't really miss a big steak, a cure would be great, that way I wouldn't have to always worry when I get a twinge in my stomach or a little itch," Masters said. "I am always on edge wondering, 'What if it had beef or pork in it?' "
She always carries an epi-pen -- containing a dose of epinephrine to counter anaphylaxis -- just in case.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Member # 18524
Good question lou.
I guess if they can get rid of the reactions there would be more cases harder to discover---
which is exactly what some want.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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