Pediatric Food Allergy: UChicago Medicine FACET

32 million Americans suffer from food allergies. These can range from mild annoyances to very dangerous conditions that people have to battle every day. On this program, we'll introduce you to a food allergy expert, who will talk about UChicago Medicine's new Food Allergy Care, Education, and Translational Research Center or FACET. Our expert will take your questions, and we'll hear from patients who will share their stories. That's coming up right now on At the Forefront Live.

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And we want to remind our viewers that today's program is not designed to take the place of a visit with your physician. We're going to start off, Dr. Ciacco, with having you introduce yourself to our audience and tell us a little bit about what you do here at UChicago Medicine.

Sure. I'm Dr. Christina Ciaccio. I've been here for the past seven years building the Food Allergy program. I currently serve as both the director of the Food Allergy Program and our new Center, FACET, as well as the chief of the Allergy Immunology program here at the university.

You know, I had no idea. In the intro, there was a statistic there of 32 million Americans suffer from some type of food allergy. I had no idea the number was that significant.

Yeah, it's two kids in every classroom in America right now, we think, has a food allergy, as well as one in 10 adults. It really has skyrocketed in prevalence over the past couple of decades. And we really don't have a handle on why now, but we're left with just a significant amount of Americans that we need to help.

Do you see that number continuing to increase, do you think?

Possibly. It's difficult to understand what's going on. Certainly, one of the things that we study is how the lifestyle that we live in the United States right now has contributed to this. And since we really don't see a significant change in what we're eating or the amount of antibiotics we're using, for example, that may be contributors, it's certainly possible that it will continue to rise until we get a handle on exactly what's driving the phenomena.

One of the things that I think is going to be pretty interesting in our program today-- we're going to talk with a couple of family members who have-- a couple of family members who have people who have food allergies. And in one case, there are several food allergies within the family. So immediately, when I saw that, I'm thinking to myself, is this hereditary?

Yeah, we know that there is a genetic predisposition. So it certainly runs in families. We see it among siblings, between parents and children now. But it's not the only factor. Really, the increase in prevalence has happened much faster than we can explain by genetics alone. When I was a kid, I'm not sure I knew a single person in my class who had a food allergy. But, again, now, my kids, on average-- and I feel this is true, just as a mother-- probably have two kids in every single one of their classrooms who have a food allergy.

Yeah, I was just going to say-- I was going to make that point-- I remember when we would have-- back in the old days-- it's been a long time ago, but kids would bring treats to school for birthdays or whatever, and they were never really any restrictions there. And it was kind of the Wild, Wild West. But today, there are pretty significant restrictions because there can be significant reactions to various things.

Yeah, absolutely. And really, any public space, we have to be very, very careful about what food is available. But really, even in family events, almost any family event that you plan foods around-- Thanksgiving, Christmas. Those are some of the real high-risk times for our families. Certainly, grandparents who are well-meaning but did not grow up with the experience of having folks around them with a food allergy are just not aware of what they need to do to keep the children and the host safe or even the adults who have food allergy.

Yeah, we do want to remind our viewers that we will take your questions. If you want to type them in the comments section, I'll try to get to as many as possible during the course of the program. I think there is-- and I think it tends to probably be people my age and older that probably look at a lot of this and say, they're making a big deal out of nothing. Give them some peanuts. And that's really not a very safe attitude to have in some of these situations because these can be life-threatening situations.

Yeah, unfortunately, we still lose probably about 150 individuals a year here in the United States to severe anaphylactic reactions. And trying to stay away from food is more difficult than it sounds. We eat several times a day, every single day. And every single meal, we have to be cognizant of what's in the food.

So it's very difficult, and it's really debilitating to families who really just want to enjoy themselves. They want to go to a baseball game and feel safe if they have a peanut allergy. It may just not be the right environment for them. So really, it takes the entire community pitching in to make sure that these food allergy families stay safe.

We were fortunate enough to talk to some families earlier in the week, and I want to play a couple of sound bites, John. We're going to start with a woman named Kerri Wiman. We're going to play the first sound bite. She talks about her son's first reaction and when she discovered that he did indeed have a pretty significant food allergy. Let's go and play that sound bite, and we'll talk a little bit about that coming out.

Yeah, and his first reaction was actually from a product called Burt Bees Butt Paste. It's a diaper cream. And he was one year-- like I said, a year old, maybe 13 months old, and had had a diaper change. He didn't usually have a diaper rash, but that day, he did. So we pulled out the Burt Bees that someone had given us as a gift and applied it. And within about 45 minutes, he started crying uncontrollably.

So we're trying to give them a bottle. That didn't seem to help, and so we thought, well, maybe the diaper is too tight. And when we went to take off his onesie pajama, he had welts forming all across his torso. So we went to-- I think we started at the Convenient Care. We went to the Convenient Care, and by the time we were there, I think they administered some Benadryl and told us to drive to the hospital to the ER.

And I think that indicates just how serious something like that can be. He didn't eat that even. That was something that was just put on him, and he had a really significant reaction.

Yeah, absolutely. Really, that's the fear. You don't know what any reaction's going to be. Reactions can change over time. They can start out as just hives, but maybe 10 years later as a 10-year-old, the same exposure could cause anaphylactic reaction, swelling, trouble breathing, and the hives altogether.

So what do parents do? And I guess I'm saying parents, but it could be any age group. What do you do if you suspect that maybe you do have a food allergy?

Well, the first step is to see your physician, either your primary care physician or an allergist. And really try and bring as much information as you can. The more we know, the more it helps us figure out really what's going on. If you had a reaction to a food, try and bring the list of ingredients that were in that food with you. And then we'll probably recommend some sort of testing, whether it be blood testing, skin testing, oftentimes both, to really nail down what the risk is and the importance of avoidance.

Yeah, the other interesting point-- we mentioned earlier how this can kind of run in families. And, John, I want to play Kelly Richardson's first sound bite, where she talks about her various family members who have battled food allergies now for several years.

With Kaden, who is my oldest-- he's 13-- he developed food allergies pretty early. So just trying to figure out as much information that I can about food allergies. Then Cameron was born, and he was born with severe milk, egg, tree nut, and peanut food allergies, so just trying to-- then that was him. And then we had Layla, who was born with peanuts and tree nuts allergies. And then we have Leah, who has an egg allergy so far. So just trying to get as much information and to get the best health care for the kids.

You know, it's interesting. In our conversation, she was telling me about a vacation they had planned and they have to be very, very aware when they even plan a vacation where they're going to stay. Where are they going to eat? They, obviously, take food with them for the road trip, but what restaurants they'll visit-- that sort of thing. And that's a pretty significant worry and a lot of work.

Yeah, absolutely. Anytime there's a change in environment, it's another kind of high-risk period for folks with food allergy-- leaving home, going on vacation, certainly, times when kids leave for college, and they have to live out of a college cafeteria for the first time. Sometimes, it prohibits children from studying abroad in college, where they want to go. They just maybe can't trust their own command of the language of whatever country they're going to. But we really are working hard in the work we're doing in FACET to try and normalize lives, increase opportunities, and make some of these things that really make life fun and complete not so challenging if you have a food allergy.

So let's talk about FACET for a little bit. That's something that's pretty new. Describe to us what that is.

Yep, absolutely. So we have long had an interest in advocating for our families with food allergy, both in the research side and the clinical side. And this year, we decided to finally formalize it into our center, where we really want to integrate everything that we're doing into a robust program to help our families from across the lifespan, from infancy through adulthood. So far, we really don't have a way to prevent food allergy. We don't have great diagnostics, nor do we have treatments for food allergies. So we have a lot of work to do on the clinical side and the research side, optimizing each of these steps.

But there is hope. I mean, there are things that families can do to help mitigate the issue, and there's quite a variety.

Yep, absolutely. So every day, we have a robust clinical trial program. We have a prevention program, so we're taking very young infants, and we're trying different methods to prevent them from developing food allergy, especially those at high risk, if they've already had a sibling who developed food allergy or a parent who has food allergy, taking them into the program early on. The next step will be to enroll mothers before they even deliver and starting some different programs to see if we can prevent development of food allergy.

But we also have treatment options, whether they're FDA approved or not. We, of course, try not to turn away any family at all. We really want to understand what your treatment goal is. Is it just living a more normal life, being able to eat where you want, having some protection against anaphylaxis, or, really, are you wanting a cure? We want to work with every family and create our programs and our projects to meet the needs of all of food allergy patients.

You know, it's interesting. John, I'm going have you play that second sound bite from Kerri Wiman here in just a second. But she talks about one of the things that-- one of the treatments, I guess, that you prescribed for her son. And I kind of got a kick out of it, but it's also still challenging. Let's go ahead and play the bite. We'll talk about it afterwards. She'll do a better job describing it than I could.

He does have to do maintenance. So that's probably the hardest thing right now, is the ongoing maintenance that's required. And I know that any time someone's told you need to take this for the rest of your life, that has its own challenges. But I think it far outweighs the cons of what happens if he has an ingestion. If he is exposed to nuts, he doesn't have any tolerance built up.

So yeah, as a parent, I do-- I sleep easier at night, and I'm super proud of him. I want to say that because there were two challenges. When we first started, we used Palforzia. And he had two reactions to that, and that was hard. And it was very tempting to say, hey, let's quit because this is really hard for you. And I saw how much pain he had those days.

But he stuck with it, and you're-- the University of Chicago team said, why don't we try peanut flour? It's a slower process to graduate, but sometimes, people have less reactions. And he's never had a reaction since we've been under peanut flour. So to me, it's amazing. We're just-- when I say I'm shopping for his pharmaceuticals, I'm shopping in the candy aisle at Walmart, buying Peanut M&Ms or Reese's Pieces.

And it's interesting. It's-- although she did tell me that he doesn't like to eat peanuts, obviously, because of the allergic reaction. But that does help him kind of build up that tolerance, I guess.

Yeah, that's exactly right. An approach we're using now, really to just add a layer of safety for kids who have a peanut allergy, is to start very, very slowly, introducing what they're allergic to. It seems counterintuitive, but what we found is if we start introducing a food below that threshold that would actually start a reaction, then we can increase it slowly, and we can almost trick the immune system to learning how to tolerate it to an extent. So if we can gradually increase the dose of peanut, for example, up to a place where a child eats one or maybe two Peanut M&Ms a day, we know, actually, after a year, that they are likely to be able to accidentally eat three peanuts and not have a reaction.

After two years, that threshold continues to rise, and it looks like about seven peanuts. It's really hard to accidentally eat seven peanuts. So we think it's a nice layer of safety. But it's not easy. It takes, really, a lot of courage on all those kids who are going through this therapy. It's really-- like the Wimans and other families-- really, truly impressive. We've heard about these reactions, so we immediately went back to the drawing board when we started using this treatment, which we call oral immunotherapy, and we've designed a clinical trial around improving outcomes.

So we actually have implemented a stage before oral immunotherapy, where we're trying to optimize the bacteria in the gut, see if we can get a little bit better control of the immune system before we start introducing the food. It's a trial that we have ongoing now. But this is what we want to do through our center. Every time we see something that's not ideal, we just want to take the next step, and go after it, and see if we can improve it.

Yeah, she was she was very excited with the progress that he had made. And we don't want to make light of the Peanut M&Ms thing because I think it is a difficult thing for the families and, particularly, for the kids to, like you said, have the courage to actually even eat one of them after the negative reactions they've had in the past. So we look at it as maybe not a big deal, but it's a huge deal to the people that are doing that, obviously.

Yeah, absolutely. To the kids who are going through this, it's poison, and they feel that they're eating poison. And we can put sugar on it. We can sugar coat it, chocolate coat it, to try and make it a little bit easier, but it's still, mentally, very challenging. Most kids never really acquire a taste for it. If they've been allergic to whole lives, they just don't like it, and I certainly don't blame them.

But we do what we can. Kids have been doing a great job on those maintenance dosing. But we don't want them to have to do this forever, if possible. We really-- our next step is to see if we can do something that really sends them into remission so they're not obligated to continue eating the food every day just to prevent an anaphylactic reaction. So we're thinking hard. We're really doing a lot of research to see if maybe this is just an interim step before we can find a remission for these kids.

So part of the key to this is this is something where it will be lifelong care for these folks. Can you talk just a little bit about that? Because the food allergies just don't disappear as these younger people, younger patients, grow into adulthood.

Yeah, absolutely. Well, there's two phenomena we see-- one, that a lot of food allergies stick around. In fact, probably 70% of peanut allergy will stick around into adulthood, lifelong. So we have a need to develop therapies that are effective in adults and can fit the unique lifestyle of adults. But we have also found a surprising rate that adults develop food allergy.

Often, it's shellfish. You could be 60 years old, have eaten shrimp your whole life, and then all of a sudden have an anaphylactic reaction. And we really need to understand what's happening that someone, maybe at 50, maybe at 60, suddenly changes. Their immune system decides it doesn't want something anymore and starts the whole process later in life.

What happens if you're facing a situation like that? You go out to your favorite restaurant, you have shellfish, and, suddenly, you're having a difficult time breathing. What do people do? What should they do?

Yeah, well, certainly, if all's at available, we'd encourage them to get to diphenhydramine-- Benadryl-- some sort of antihistamine as soon as possible. We're working hard to increase access to epinephrine auto-injectors. That is the absolute best treatment for an anaphylactic reaction. Certainly, if this is the first time, it is unlikely that you're going to have epinephrine around, so you need to get to emergency care just as quickly as possible.

But if you've already been diagnosed, then we put into the hands everyone with a food allergy epinephrine auto-injectors. They're a life-saving device. I liken them to a fire extinguisher. Hopefully, in your whole life, you'll never use it. But if you cook in your home, you certainly want one there. Hopefully, in your whole life, you'll never have to use an epinephrine auto-injector, but if you have a food allergy, you certainly want one around at all times.

Is that what a lot of people call like an EpiPen?

An EpiPen, or a competitor may be an Auvi-Q. Exactly.

OK, was that a brand name?

It's a brand name, mhm.

OK, I got you. So, John, let's play the second bite from Kelly Richardson. This was interesting, too, because her children have a variety of different food allergies, and she talks about some of the challenges they face and how important it is to read labels.

It's pretty tough. Just sending them out every day to school and making sure they're safe because we know the plan and we know what they're allergic to, but those hidden dangers are everywhere. It's in every food. So we have to teach them and educate them on keeping themselves safe, like checking labels, not eating anything-- even if you've had it before, to always check the label. That's our thing is always check the label.

So allergy testing, I know, is a pretty lengthy process. Are there any tips that you can give folks to help that process run smoothly?

Yeah, it's certainly, again, helpful to us if you can really let us know what foods you ate before an allergic reaction came on. That can help us tailor your allergy testing so it's efficient, and we get accurate results. But whenever you see an allergist, I would really plan for a two-hour visit. Our visits are much longer, but we try and do testing right then and there so you don't have to come back. We have answers.

If you are coming in, my recommendation is, if it's possible, to stop taking antihistamines that you may be taking for your seasonal allergies, like Zyrtec or Allegra. Those prevent our skin testing from working correctly. So if you come, if you hold them for a few days before, we can usually skin test you. It takes 15 to 20 minutes, and then we can let you know on the spot. If, for whatever reason, the skin testing is not giving us the right answer, the next step is to bring you in.

If it-- assuming the blood testing doesn't help us either, then we do something called an oral food challenge. We have an entire facility specially designed for safety around oral food challenges. We have nurses that have been trained in the ICU and in the emergency room. They oversee all of our food challenges, and we actually slowly introduce the food into the child, the adult who we're questioning what caused the food reaction, and we see what happens. But we are prepared to treat a reaction, should it start. It takes all morning, but hopefully at the end, then we have undiagnosed a food allergy.

We've talked a lot about children having food allergies, And I know you mentioned that there are quite a few adults also. And FACET is one of the few programs around in the country that actually treat both pediatrics and adults. And tell us a little bit about that and why you went that direction.

Yeah, absolutely. Well, as it turns out, the food allergy epidemic has been going on for about two decades. So those kids who are involved in that first wave of developing food allergy are now in their 20s, and they're becoming parents themselves. And one of the techniques we use to try and prevent food allergy is to introduce a food very early. But if a parent's allergic to, say, peanut, it can be a little bit nerve wracking to introduce peanut to their infant.

So we meet with the whole family. We treat, again, all ages. We may sometimes have three generations of food allergy. We can bring them all in the room, we can see them all at the same time, and we can help the family really make a plan that works for them. We work with families like the Richardsons that have complex needs-- lots of different foods that they have to avoid-- and just make sure that they have everything they need-- access to dietitians if they need help, understand how to read labels, and certainly have access to those lifesaving devices.

And FACET is brand new. What do you hope from the center in the future?

Yeah, as we continue to grow, we want to expand our clinical program. So we want to integrate more dietitians. And we've also noticed that a lot of kids who have food allergy, they develop anxiety at a very young age. It's absolutely understandable. Every single meal they eat, they may be anxious about what they're eating and if it'll end in an allergic reaction.

So we want to bring more clinical psychologists into the program ready to go, and talk to families, certainly to help families through these very difficult clinical trials and the therapies, like the oral immunotherapy that may lead reaction. But we want to really expand the amount of support and treat the whole person-- a whole person of all ages, in every step of care, from diagnosis, prevention, and treatment.

Perfect. Well, we are about out of time. Appreciate you doing this. This was very interesting and, I think, really important information for not only parents but kids and, you know, anybody who might be facing something like this. And it's good information to have.

It's my pleasure. Thanks for having me.

Wonderful program. We are out of time. Special thanks for our guest for being with us today. And a big thank you to those of you who watched and participated in the program. Please remember to check out our Facebook page for our schedule of programs coming up in the future. To make an appointment, go online at UChicagoMedicine.org, or you can give us a call at 888-824-0200. Thanks again for being with us today, and I hope you have a good week.

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