COLUMBIA COUNTY, Fla — WATCH First Coast News 11 p.m. Monday for Heather Crawford's special report on Raymond Peeler.
What was supposed to be a fun trip to Jekyll Island in 2012 turned into an unexpected trip to the hospital for Raymond Peeler and his wife, Alice Peeler.
"He looks at me and says I feel funny, and I soon as I looked at him I knew," Alice Peeler said. "He was white. He was sweating profusely. It was within a matter of seconds that he was unconscious."
It was the beginning of a six-year, tumultuous journey for the Peelers as Raymond Peeler continued to inexplicably pass out.
"When it happened, my heart would be racing," he said. "I would get blurred vision and not long after I'd get blurred vision I would go unconscious."
Doctors thought it was problem with his heart and prescribed Nitroglycerin, which lowered his blood pressure.
"It was the worst possible thing you could do to treat what we didn't know at the time was an anaphylactic reaction so it put him into full-blown cardiac arrest," Alice Peeler said.
Lucky to have survived, they still did not have any answers.
"We were exhausted spiritually, emotionally, financially, all of those things and we just got on our knees and cried out to God to please show us what this was," she said. "I had been on the internet hundreds of hours previously over that many years looking and had gone back to internet and typed in beef allergy. We had danced around that answer for years but had always been told no it's nothing related to beef because a food allergy happens right away."
Her search online turned up what the Peelers call an answer to prayer, Alpha-gal syndrome (AGS). It's a recently identified type of food allergy to red meat.
"I knew that's what he had so I contacted our allergist," she said.
A simple blood test confirmed he had Alpha-gal.
"Once I got the diagnosis and knew all it took was eating differently, I had my life back," Raymond Peeler said.
He now avoids beef, pork, deer and lamb, along with mammal-based products including dairy. Since changing his diet, he has not had any more episodes.
"You have to avoid magnesium stearate and gelatin," Alice Peeler said. "Those are two of the major ones that are in most medicines. The shingles vaccine he should have never had because it has gelatin in it."
The red meat allergy as Dr. Michael Young with Baptist Health explains is caused by a simple tick bite that transmits the alpha-gal sugar molecule into the body.
Raymond Peeler, a pool contractor and an avid hunter and fisherman, has spent countless hours outdoors.
"You get it, the most common thought right now is from what's called a Lone Star tick," Young said. "This is a very common tick found in the South and East. It actually causes an immune response once someone eats red meat."
Different people can react differently. Unlike with most food allergies, symptoms with Alpha-gal are often delayed. They commonly appear three-to-six hours after eating the meat of mammals like beef and pork and can include hives, wheezing, a rash, stomach pain, vomiting, and in severe cases anaphylaxis.
"Allergic reactions can wax and wane," Young said. "One time you can just have a runny nose or swollen lip, but the next time you can actually have an anaphylactic reaction."
More than 5,000 cases of Alpha-gal syndrome have been documented in the U.S., but experts suspect there are many more. Since getting diagnosed, Raymond Peeler has had several relatives test positive.
"My son was diagnosed," Raymond Peeler said. "He was fatigued. Also my sister and brother-in-law both have been tested and same thing, fatigued, just tired, unexplained so they got tested and both have it."
The Peelers don't want anyone to have to go through what they went through for six years.
"He was misdiagnosed with so many things so many times, through the fault of no one," Alice Peeler said. "The physicians were doing their absolute best, but you have to be the advocate and if something does not fit, it just does not fit. If you are having hives, extreme GI upsets, unexplained fatigue, you've been bitten by a tick, those are all things to be thinking about."
Experts say the Alpha-gal allergy can go away over a period of months or years if you're not bitten by another tick. Avoiding tick bites is the key to prevention.
Dr. Scott Commins, who specializes in Alpha-gal, answered some of the most common questions:
In addition to beef, what other types of meat and mammal products are people with Alpha-gal allergic too?
"Essentially any mammal that's not a human or a monkey – so pork, lamb, deer, rabbit, buffalo, bison, etc. There are some mammal-based products that can be issues such as dairy, gelatin, and pancreatic enzyme replacement medication which comes from pigs."
Are people with Alpha-gal allergic to chicken?
"No, if it flies or swims, it's ok."
Should people with Alpha-gal avoid dairy?
"Some patients need to avoid dairy, but this is typically handled on an individual basis. This is similar to patients with peanut or tree nut allergy where some patients can eat things that are processed in or 'may contain' nuts."
What should someone with Alpha-gal syndrome avoid?
"Definitely avoid fatty mammalian meats. From there we individualize avoidance diets and this can include avoiding cow's milk, rich cheeses, gravies or sauces with pork/beef fat, ice cream, gelatin (in marshmallows, gummy bears, etc.)"
Are people with Alpha-gal commonly misdiagnosed with other food allergies?
"They are often misdiagnosed as having no food allergy because the reactions are delayed, so it makes it difficult to associate the reactions with foods at all."
Is a blood test the only way to detect Alpha gal syndrome?
"It is the most reliable way to diagnose AGS but in some instances, skin testing can be performed. Overall, we prefer the blood test."
How accurate is the test, and specifically what type of test should people ask for if they think they have it?
"There are insufficient data to assess how accurate the test is but if suspected, people should ask for alpha-gal IgE testing. Here's the link."
Can you get Alpha-gal syndrome if a tick is not embedded in you?
"Yes, the bite itself appears to be sufficient to trigger the immune response (e.g., the allergy). In general, I tell patients that if the tick 'bites' enough to cause an itchy, red spot then that's probably long enough."
Do ticks other than the Lone Star tick cause Alpha-gal syndrome?
"Yes, other ticks definitely are important. This allergy is found in Australia, Europe, Scandinavia, South Africa – all places that have ticks but do not have Lone Star ticks."