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As the fourth and final episode in our “Conversations on Food Allergy” series, patient JoAnne Van Tuyl joins Dr. Ron Falk and Dr. Scott Commins to talk about her experience with getting diagnosed with alpha-gal allergy. JoAnne recounts her first allergic reaction to meat, and provides some tips to others for coping and eating with this allergy. Dr. Scott Commins is an Associate Professor of Medicine in the Division of Rheumatology, Allergy, and Immunology and UNC Thurston Arthritis Research Center.

JoAnne, alpha-gal patient
Dr. Scott Commins

“I just laid down on the bathroom floor and called for my husband and he came in—you can imagine his surprise. A minute or two later, I felt the itching on my hands and then on my feet, and I looked around and it was everywhere—hives, just intense itching.”

– JoAnne, a person with alpha-gal allergy

Ron Falk, MD: Hello, and welcome to the Chair’s Corner from the Department of Medicine at the University of North Carolina. Today’s episode is part of our series focused on food allergy, and in our most recent episode we met with Dr. Scott Commins who discussed the whole concept of alpha-gal allergy. We welcome back Dr. Commins to this podcast, and today, we’ll get to hear from one of his patients, JoAnne Van Tuyl, who has alpha-gal allergy and she’ll be sharing her experience with us. Welcome, JoAnne.

JoAnne: I’m very happy to be here.

A Bit About JoAnne

Falk: Tell us a little bit about who you are. What makes you tick, if I can use that word?

JoAnne: Good pun. I have been in North Carolina for almost forty years now. I was a graduate student at UNC in comparative literature, and very surprisingly ended up teaching at Duke, and I’ve been there for about 29 years.

Falk: You should know that there is a relationship between Dr. Van Tuyl and me. My father was a professor of comparative literature, that’s why JoAnne pointed out that she is in comparative literature, and he was one of Dr. Van Tuyl’s professors. It’s a small world in the southern part of heaven.

JoAnne: Indeed.

First Allergic Reaction

Falk: So, you have had this allergy known as alpha-gal. Take us back to the time when you first had a problem. What was that really like?

JoAnne: This was last October, in 2016, and I had been eating meat all my whole life. In fact, up to the day that I first had this allergic reaction, I had eaten meat the night before, and the night before, and the night before, and for some reason, everything was fine on those days but not on this one day. I had been up in Washington visiting and on the way home I stopped in Richmond to get some ribs that are really good—a favorite barbeque place in Richmond—bringing them home for a meal for my husband, my daughter, myself.

Falk: You thought you were doing a wonderful thing, you were.

JoAnne: I did eat a lot of junk food in the car on the way down. So, by the time I got home, I had about two very small ribs and my husband and daughter ate most of the rest of it. So, I went to bed and in the middle of the night, probably 2:00, 2:30, something like that, I woke up just feeling nauseated, just feeling bad. I laid there for quite a while trying to decide if I was imagining it—you know, I was asleep—and finally, “Yeah, I do feel pretty bad.” I did feel gastrointestinal distress is the polite word for it.

Falk: What’s the non-polite word? Were you nauseated?

JoAnne: I felt nauseated, I ended up in the bathroom and had very bad diarrhea.

Falk: So, it was really diarrhea—suddenly.

JoAnne: Yes, and my face was flushed, I felt very hot. I literally had to lean over and rest my head on the toilet paper holder. I was just exhausted.

Falk: So this was sudden.

JoAnne: Very sudden, and then I just really wanted to lie own. I just laid down on the bathroom floor and called for my husband and he came in—you can imagine his surprise. A minute or two later, I felt the itching on my hands and then on my feet, and I looked around and it was everywhere—hives, just intense itching. We decided it was time to go to the emergency room. We went to the emergency room, a new one that was not crowded which was wonderful, so they treated me for anaphylaxis, basically. They gave me some fluids. They gave me maybe two Benadryl tablets, and then just observed me and after a while I was fine.

Falk: What did they think it was due to?

JoAnne: They had no idea, and I had no idea. They said, “You need to go see your regular physician, soon.” Two days later I was at my doctor’s and explaining everything to her, what had happened. I said, “I can’t imagine what I was allergic to. It’s like I was allergic, but I didn’t eat anything I’ve never eaten. I get bug bites all the time, it can’t be ticks because I get tick bites all the time..” And she said, “Hmm…” and this was here at UNC. She went over to her computer and looked some stuff up and she said, “There is a possibility you might have this allergy, they call it alpha-gal. I’ve never diagnosed it, but I know where you can go and find out.”

She referred me to Dr. Commins’s office. Unfortunately, it was a while before I got the appointment. It was about a month. Meanwhile, with that name of course, I looked up everything on the Internet, and it sounded like, “Yes, this is what it is”—but a lot of unanswered questions because I couldn’t imagine why four nights in a row and this one time suddenly I had this reaction. So, I can’t really particularly remember a tick bite that was extra itchy or anything. There are some bites that are itchier than others, but I couldn’t identify which one it might have been. I garden a lot.

Falk: So you’re a gardener and that would have been the source of a tick bite, but as Dr. Commins has suggested, it could have been anything, we don’t know it’s a tick. Dr. Commins, is that a pretty typical story?

Commins: Although alpha-gal doesn’t appear in textbooks yet, that is the textbook scenario.

Anaphylaxis & How to Respond

Falk: What is the word “anaphylaxis” mean? Dr. Van Tuyl just described the characteristics of it, but help us with what anaphylaxis really is.

Commins: It is typically thought of as an IgE or allergic immune response that causes one’s allergy cells, and those are thought of as particularly mast cells and basophils to release their histamine and other cellular contents after a particular antigen—whether that’s a protein, or a carbohydrate or a fat—is recognized by that specific antibody. So, if you’re allergic to peanut, your body makes a very particular response to peanut, and when you see it, you react. For alpha-gal, these patients make a very specific response to that sugar.

Falk: Let’s hone in on the issue of a reaction in which there are hives and you could take some Benadryl and she could have gone back to sleep. That’s not what happened here. There was profound diarrhea, a lot of gastrointestinal distress, unable to get from the bathroom back to her bed, was lying on the floor, had to go to the emergency room. What is the trigger point of having hives that could respond to oral medication in contrast to what we just heard? What’s the tip-off of, you’re having an anaphylactic reaction and you’re in trouble?

Commins: We worry a lot about what we think of as two organ systems. So skin being one, if you just have hives, we think you don’t necessarily need to rush off to the emergency department. That’s probably handled, as you indicated, with an antihistamine, but once you start to get a second organ system—for JoAnne, that easily would have been GI distress. Once your gastrointestinal system is now involved, you’ve got two organ systems. If you start feeling lightheaded, then your blood pressure is probably low, so your cardiovascular system—your heart and blood vessels are now involved. Any time there’s two systems, we really believe that that’s the appropriate time to go to the emergency department or call 9-1-1.

Falk: This is an emergency, flat-out. In Dr. Van Tuyl’s case, this was diarrhea first and hives later which would have been much more, at least in her mind, this is, “I ate something,” not an allergy—just, “I ate a bad rib.”

Commins: Absolutely. To be honest, we have patients who describe just gastrointestinal distress, severe—they use the term “hot poker”—terrible gastrointestinal distress without hives, swelling, or redness, and as you can imagine, making the diagnosis for those patients is really challenging.

Getting Diagnosed with Alpha-Gal Allergy & Avoiding Problem Foods

Falk: So, you went to see Dr. Commins and had this blood test. What did you think of this blood test and what did it mean to you?

JoAnne: I was pretty sure that I had this before I even walked into his office, from my reading of some of his articles online and other general descriptions. I would caution anybody against reading everything there is on the Internet about alpha-gal—but medical journal articles from reputable sources, that’s good. I didn’t really know what to think and I had a million questions about, “Will this last forever?” I can tell you that when I learned about it, I was surprised at myself. I was upset of course, about not eating red meat anymore, but maybe it’s because I’m 65 years old, I just thought, there a lot of worse things in the world. Having a reaction to gluten, for example, I think would impact my life a lot more seriously than the alpha-gal has.

Falk: Can you eat ice cream?

JoAnne: Very interesting question. I have not had a traditional, super-fatty, big bowl of ice cream—which trust me, I love, and would love to have—but I have stayed away. I have had other kinds of ice cream, soy-based or cashew milk-based—pretty tasty actually. I have had a couple of spoonfuls of regular, creamy ice cream but nothing untoward there.

Falk: And you’ve stayed away from beef, pork, and lamb.

JoAnne: Yes. I’ve made a couple of mistakes. I’ve intentionally stayed away from it. There was one time we grilled sausages—my husband wanted a traditional pork sausage and I was having a chicken sausage, and he’s normally quite meticulous about keeping things separate and organized, but for some reason this time that did not happen. I was very hungry and said, “Well, which one is which?” and he looked at me like, “Oh no, I don’t remember.” I just said, “I’m sure it’s this one, this is the chicken,” and just cut it up. I didn’t even think to look at the color of the meat. I just ate a bite. It tasted really good and I realized something was wrong. The chicken sausages are great, and I have no problem with them, but this was something special and thought, “Oh, dear.”

Falk: Did you take Benadryl right away?

JoAnne: I did, I took two Benadryl and nothing happened.

Falk: You knew you had made a mistake and solved it right away.

JoAnne: Yes, I had no issue whatsoever after that. One other time, we had subs, and my husband and I had a turkey sub and my daughter had Italian, which had all kinds of meat in it. Long story short, I took a bite of her sub, and that night I woke up itching and not too much intestinal distress. By then I had an EpiPen, and had the itching and even though it didn’t seem like it was an emergency, I kept hearing both Dr. Commins and my regular physician who said, “Don’t stop and think about. Especially if there are two things, you go to the emergency room. Something might change quickly.” The problem is, one of the things to look out for is,”Are you clearing your throat a lot? Are you having problems breathing? Well, just wondering and thinking about this makes me kind of anxious! So I didn’t know but I thought okay, “I’m just going to believe what they told me, and when in doubt go.” This time we went to a crowded emergency room, and they wanted to observe me for four hours. We were there, but nothing else happened, I was fine– I just a little bit of the rash, and eventually I figured out it was from that sub.

Tips for Someone Newly Diagnosed with Alpha-Gal

Falk: What tips would you tell somebody who is first experiencing this?

JoAnne: Well, I’ve already mentioned I think you need to be cautious about what you read on the Internet. You discussed this in the earlier podcast about various rumors, like it’s okay to eat beef not to eat pork, but maybe for some other reason they’re having some other experience, I don’t know where they’re coming from. My biggest tip is—and I don’t normally say these things—is to listen to what your doctor says, because I found the advice and information that I’ve gotten from Dr. Commins has calmed me down a lot, I’m not panicked about going into a restaurant, I just order smart. I cook a lot, so I tend to know what kinds of ingredients—I’m not going to order pea soup because it will probably have a ham bone in there. I’d say that’s the main thing, listen to them and get perspective on it. It really isn’t the worst thing in the world, and who knows, maybe it will go away at some point.

Falk: When you go to a restaurant, do you say to the wait person, I have a meat allergy, or do you just carefully order?

JoAnne: If I’m interested in something that has any chance of having a meat product in it, then I ask them. I ask if there is any kind of beef product—“Is there beef broth in this or bones?” Normally I don’t have to do that. I’m fine with chicken and fish, I’d like to add emu, which is quite delicious and does taste a lot like beef.

Commins: Fortunately, there are emu farms in North Carolina.

JoAnne: The color of the meat is an even deeper red than beef is.

Falk: You can trick yourself into thinking you’re eating beef.

JoAnne: You can, and you can make burgers and all kinds of things. One of the foods I have most missed is—I was diagnosed in October, and it doesn’t really get cold in North Carolina until November—usually when it gets cold I make beef stew, it’s just one of my favorite things.

Falk: Now it’s emu stew.

JoAnne: Well, it’s going to be. Last year, it was really sad, when I couldn’t make beef stew, and on St. Patrick’s Day, I like making corned beef and cabbage and the trimmings. There is no substitute for corned beef—ain’t gonna happen!—I don’t think emu’s going to do it either. This winter I look forward to trying the emu for beef stew.

Falk: When you tell people that you have a meat allergy, do they look at you askance?

JoAnne: Yes, usually. I just told somebody last night, an old friend of mine, and she said, “What?! I didn’t think people were ever allergic to meat.” So you get that sometimes. Some people have a preconception that nobody’s allergic to meat, and some people just didn’t know. Because I live in a university town, and because we have a local superstar of alpha-gal, more people in this area know about it. Once in a while, they say, “Oh, yeah I heard about that. I read an article..” Most often it’s: “Oh, really? Why? When did you get it?” – that kind of thing.

Falk: Thank you, JoAnne, for sharing your story with us today.

JoAnne: I’m very happy to, thank you.

Falk: It was really a classic story for people to understand and listen to. Thanks so much to our listeners for tuning in. If you enjoy this series, you can subscribe to the Chair’s Corner on iTunes or like the UNC Department of Medicine on FaceBook. Thanks so much.