The People's Perspective on Medicine

Why Is Alpha-Gal Allergy So Misunderstood and Misdiagnosed?

Imagine experiencing a life-threatening allergic reaction after eating a burger or barbecue. A marshmallow can also trigger an attack of alpha-gal allergy. Many doctors don't recognize it.

According to the CDC, “illnesses from mosquito, tick, and flea bites have tripled in the U.S.” in recent years (May 1, 2018).  Ticks are on the move. These disease vectors are found from California to Maine. They transmit Lyme disease, Rocky Mountain Spotted Fever, anaplasmosis, ehrlichiosis, Powassan virus and several other nasty conditions. One mysterious and potentially deadly allergic reaction often goes unrecognized. Alpha-gal allergy results from a lone star tick bite. No viruses or bacteria are involved. Many physicians are not aware of this potentially deadly disorder.

Alpha-Gal Allergy Is NOT New!

Doctors are busy. They put in long hours seeing more and more patients. By the time health professionals get home, they are usually exhausted. Spending additional hours poring through medical journals can be overwhelming. That’s why it can take longer than you would imagine for doctors to learn about a new health threat.

For example, health care providers are not yet thoroughly informed about the sensitivity to a mammalian sugar called alpha-gal. That’s short for galactose-alpha-1, 3-galactose. It is a carbohydrate found in the meat of mammals such as cows, pigs, sheep, goats, bison and deer.

Alpha-gal allergy occurs following a bite from a lone star tick (Amblyomma americanum). Saliva from the tick triggers an immune reaction that can cause life-threatening allergic symptoms. This condition has been known for at least a decade. We have been writing about it for many years and have interviewed Dr. Thomas Platts-Mills, who started researching alpha-gal allergy over a decade ago (Journal of Allergy and Clinical Immunology, March, 2015).

You can listen to our interview with Dr. Platts-Mills at this link (Show 830 Alpha-Gal Allergy). The mp3 download is free.

Symptoms of Alpha-Gal Allergy:

Most allergic reactions occur pretty quickly after exposure to the allergen. If you are highly sensitive to bee stings, the signs of an anaphylactic reaction can occur within minutes. People who are allergic to peanuts can start experiencing hives or breathing difficulties shortly after exposure to food containing peanuts.

Symptoms of alpha-gal allergy can take hours to show up. Someone could have a burger or steak for dinner around 8:00 pm and not begin to feel bad until 1 or 2 in the morning (Current Allergy and Asthma Reports, Feb. 2013).

That’s why many health professionals have a hard time identifying alpha-gal allergy. Some people show up in the emergency department with nausea, severe stomach cramps and diarrhea at 2 or 3 am. The nurse who takes the initial report could easily think the problem is digestive in nature. By the time the emergency physician shows up she is already primed to consider food poisoning, not allergy.

Symptoms of Alpha-Gal Allergy:

  • Skin reactions (rash, hives, itching especially on palms or soles)
  • Digestive upset (nausea, diarrhea, heartburn, abdominal pain)
  • Respiratory tract problems (runny nose, sneezing, breathing difficulties, wheezing)
  • Headache
  • Low blood pressure, anaphylaxis, collapse

A Doctor Shares His Experience and Outrage:

We recently received a letter from a physician in North Carolina.

“Seven months ago I was bitten by a Lone Star tick. I now have the alpha-gal disorder.

“I’ve had 25 significant allergic reactions since then while I’ve learned to cope by avoiding things that cause attacks. I had serious problems for months before the diagnosis was made. Because of a variety of symptoms, I consulted family physicians, an internist, an ear, nose and throat specialist, a health department physician and a neurologist before my wife made the diagnosis while listening to a program about alpha-gal on The Peoples Pharmacy radio show.

“My symptoms were just as described on your radio program, and I had had a tick bite. I went to see an allergist and he told me I probably didn’t have alpha-gal because my symptoms were not typical, despite the fact that my blood test was 15 times higher than normal.

“When I spoke with each of the other physicians and told them what I had, they admitted they had never heard of the problem. What is wrong with this picture? When a life-threatening problem exists, it seems there is little professional education or knowledge of how to prevent, diagnose or treat it.

“During a typical attack my face, head, tongue and lips swell. The lips have gone to the point of bursting (requiring ice packs for six hours). I also suffer from cloudy thinking, visual disturbances, shortness of breath and increased phlegm, abdominal swelling, pain and eventually diarrhea.

“I take a course of steroids for the worst episodes and I take a daily antihistamine. I keep an EpiPen handy but have only come close to using it twice.

“I now go to a specialist who understands my condition. I have learned what causes the episodes. In my case that includes, in addition to all mammalian meats, at least these following ingredients: stearic acid (as in Advil and other pills), mono-, di- and triglycerides, glycerin, whey, milk, cheese, butter, gelatin and vitamin D3 (cholecalciferol) in some orange juice. Natural flavors made from meat products are found in lots of foods. I have my medicine made in vegetable capsules to avoid gelatin.

“I have a set of foods that I can eat safely and I stick with them carefully. A simple mistake will make me sick for a week. I’ve found great fish and fowl. I eat a lot of eggs. You can lead a really good life despite alpha-gal with education, but a casual approach to food won’t work.”

What to Learn from This Story:

People who live in areas where the lone star tick is common must be aware of this potentially life-threatening reaction. In addition to pork, beef, lamb and venison, alpha-gal shows up in dairy products like ice cream and in gelatin found in Jell-O, marshmallows, gummy vitamins and many capsules. The only protection is avoidance.

You can listen for free to our most recent interview with Dr. Thomas Platts-Mills at this link:

Show 1003: From Lyme to Alpha-Gal: The Latest on Tick-Borne Diseases

If you experience symptoms of alpha-gal allergy, head for the emergency department pronto! And if the emergency physicians there are unfamiliar with this allergic condition, tell them to log onto our website and search for alpha-gal.

This article provides access to journal articles that will help your doctor better understand this still mysterious illness.

Share your own story about tick-borne illness below in the comment section.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
Show 1003: From Lyme to Alpha-Gal: The Latest on Tick-Borne Diseases
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It took me about 2 years to work out what caused my ‘adult onset acne’ at age 51 because it wasn’t that at all. For me the responses to eating low fat beef and pork were tiny blisters on my face; similar to a poison ivy reaction. It wasn’t until I ate a burger from McDs that my tongue and throat swelled up about 6 hours later. I’m sure had I drove myself to the clinic just a mile down the road they would have given me an epi pen, but in truth, since I was still able to breath, I went back to bed. However, I haven’t eaten any mammal meat since. My tongue probably swells a little when I eat ice cream (I usually eat it late at night, then go to sleep for 8 hours, so I really don’t know) and I’m not sure about gummies (I found this site while searching about just that subject) since they have gelatin. I could easily never eat gelatin again, but I am concerned about medicines I may need in the future that may contain alpha-gal, so the info about having medicines made in vegetable-based capsules was good to know. I’m in NC and not enough doctors know about alpha-gal. I sincerely hope more and more doctors learn about this allergy. Thank you for posting this information for us and them. :-)

I am having bad itching and big aeas of red rash doc put me on prediaone cleared in 10 days now back in a vengeance she didn’t know what it was don’t know what a chigger loks like if so what do I do benedril pills and salve not working please help me thanks

I have developed nasty bites and in some spots a large area very red and itchy went to doc was prescribed prednisone took 10 days and cleared up a couple of days later back in full force don’t know from what she asked if dog itched I said no washd her and all bedding and is a fairly confu=ined to houe with all precautions for bugs doc didn’t know what I took benedril 4 x day and the itch crème didn’t help I am miserable don’t know what a chigger is or looks like help please what to do

Why in the world does the CDC not list Alpha Gal as a tick borne disease?

I have had alpha gal allergy for many years and was finally diagnosed after listening to The People’s Pharmacy’s first program on the subject when I had the AH-HA moment. This was after years of waking up with everything from hives, horrific abdominal pain and GI problems to anaphylaxis.

Not one problem since I discovered what the problem was. However, just as a heads up, don’t forget that gelatin and other mammalian products are often found in medicines, vitamins, and vaccinations of all kinds and it is extremely difficult to ferret out what is in some of these things, particularly vaccinations.

In 1983, my family and I were traveling from Arizona to Tennessee on a vacation. Along the way, I broke out in a serious case of hives and was very ill. I tried everything possible for the itching, but nothing helped. We returned home and I went to my family doctor.

He put me on 3 different medications, antihistamine, steroid, and something else that I can’t remember. I had a friend whose husband was “in to” health food, etc. He suggested that I go on a fast to see what was causing the problem. After 24 hours, I was completely clear, then I began to add food groups like fruit, then raw vegetables, etc.

When I added meat products, the hives and illness hit full force. So, I became a vegetarian! We have since moved to Texas and become aware of the lone star tick bites. It completely matches the symptoms I had/have. Of course, back in 1983, no one new of such a thing. Now I am interested in finding out other long term health issues that can result from the bite. I am glad it is being studied.

Nature’s best repellent is lemon grass oil.

When I had an allergic reaction to meat, I knew what it was because I listen to Public Radio. I went to the emergency room.

They didn’t know what Alpha-gal was. I went to my GP who laughed and said how he loved to learn new things but wouldn’t give me a prescription for an epi-pen.

I went to an allergist who laughed and joked about Texas and told me it was idiopathic and I would never know what caused my hives. He then agreed to skin test me. Positive to Lamb, pork and beef. He then showed me how to use an epi-pen.

I went to my GYN. I had sent him information before hand but he hadn’t read it. He laughed and sat behind his desk and chanted “Lock her up, lock her up, lock her up.” I then pulled out my blood work results proving what I said was true. He asked if I could eat nuts. He hurried me out of his office and closed the door.

Good Luck to all of you Alpha-gal sufferers out there. Know that you are not making it up and that no you should not be locked up like your doctor says.

I have had Alpha Gal for 2 years. Thanks to hearing of it on The Peoples Pharmacy a few months prior, I suspected the diagnosis by my second bad reaction.

The emergency clinic doctor was reluctant to test but I insisted. The results were a low positive that was discounted but required follow up. The allergist I saw at a well respected university clinic had no knowledge of Alpha Gal and reluctantly retested but said avoid beef and lamb. He said pork was ok as it is ‘white meat’.

I say this so anyone who suspects this syndrome realizes you must be your own advocate and inform yourself as to safe practices. Pork is the MAMMAL meat that caused my first two reactions! It took me about 4 months to learn of all the mammal exposures causing periodic low level reactions and a lot of itching.

I travel to a knowledgeable research doctor now and am careful to avoid unsafe exposure. It is life changing in that I rarely risk eating out but otherwise my life is healthy and happy. This syndrome is different for everyone but knowledge helps find a path to what works in your own life.

Thank you, Peoples Pharmacy, for keeping this valuable information in the public eye!

What blood level constituted a low positive? Thanks.

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