Don't Feed the Fear: Food Allergy Anxiety & Trauma
Welcome to "Don't Feed the Fear," where licensed psychologist Dr. Amanda Whitehouse offers expert guidance on managing the social and emotional challenges of food allergies and related conditions. Tune in for compassionate advice, practical strategies, and inspiring stories to help you navigate anxiety and trauma with confidence and resilience.
For more info on resources from Dr. Whitehouse, go to www.thefoodallergypsychologist.com
Theme song: The Doghouse by Kyle Dine, www.kyledine.com
Used with permission from the artist
Don't Feed the Fear: Food Allergy Anxiety & Trauma
The ADINA Act: Fighting for Allergen & Gluten Labeling in Medications
In this episode of Don’t Feed the Fear, the family behind the ADINA Act joins me to talk about the federal bill's recently reintroduction to Congress. The Act seeks to require clear labeling of the Top 9 food allergens and gluten in prescription and over-the-counter medications. It's a critical step toward safety and transparency for people living with food allergies and celiac disease.
We explore the story behind the bill, the urgent need for allergen labeling in medications, and how families, advocates, and clinicians can come together to push for this change.
What you’ll learn in this episode:
- Why allergen labeling in medications matters for millions of families
- Common challenges faced by patients and providers without clear labeling
- How the Adina Act could change the future of allergy care and safety
- Practical ways you can support this legislation right now
Instagram: @the_adina_act_effort
Facebook: The ADINA Act
Find Your Representative | house.gov
U.S. Senate: Contacting U.S. Senators
Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com
Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com
I think that the biggest piece is just. getting the word out. Beyond that, I think that by and large, when we communicate with organizations and individuals, everyone is on board and really this mindset of why is this not already a thing? I didn't realize it wasn't already, and let's get this passed. And our issue is really spreading the word and having people like, share, talk about it, engage with their doctors, talk about it with, you know, their pharmacists, they have. Friends that are in the industry have conversations. That's really kind of where we're at in making sure that we're sharing it as much as possible.
Speaker:Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence..
Today's conversation is such an important one. We are joined by the family behind the Adina Act, a bill that was recently reintroduced into Congress, and that would require labeling of the top nine allergens and gluten. In all medications, This is Jen and her daughter, whom the bill is named after Adina the title of the bill Adina stands for Allergen Disclosure in Non-Food Articles Act. This the Adina Act would require all medications, prescription and over the counter to clearly label any ingredients that are major food allergens or that are derived from gluten containing grains. This legislation is crucial for enhancing transparency and safety for individuals with food allergies. As many medications contain allergens that aren't currently disclosed on the labels, many people don't realize that the laws for food allergy labeling don't apply to medications, and it's so important that we change this, This is about safety and transparency for the millions of Americans living with food allergies and celiac disease. And the story behind this act is deeply personal. It was inspired by a terrifying experience that Adina had, and so I appreciate her and her mom coming on the show today to talk to us about the power of advocacy, persistence, and turning our unfortunate lived experiences into change.
Amanda Whitehouse, PhD:Thank you so much to Adina and to her mom, Jennifer Adina is the inspiration for the Adina Act, which we've all been following and getting excited about, and I'm really happy to have you here today to teach me more about it and spread the word with everybody
Jen and Adina Togal:thanks so much. It, it's really nice to be here.
Amanda Whitehouse, PhD:I think a lot of people who are listening already know who you are, but do you mind, telling us a little bit about yourself
Jen and Adina Togal:Hi everyone. My name is Adina Togal. Have celiac disease eoe, which is eosinophilic esophagitis and a dairy allergy and fructose malabsorption., A couple years ago, while I was at my summer camp, I was diagnosed with strep while I was in the Recovery area. were going to give me the strep medicine when they didn't know if the strep medicine was gluten-free. They contacted my parents and my parents did everything they could, you know, like with the little time that they had to find out. It was a Sunday when they called, which means that all of the pharmacies and manufacturers were closed. It was just really hard to find an answer. with my parents, knowing that all of the staff were gonna be keeping a really good eye on me like they do all the time, but me being a little bit more now because we're taking a medicine that we aren't A hundred percent sure on, I took the medicine and I would say close to after taking the medicine, I started having symptoms, like severe stomach pain and dizziness. And your heart was racing. Yeah. And then I threw up. And it kind of went down from there. It didn't get better for about, like, hours. My blood pressure was severely low. Around somewhere in the, like very early in the morning, like three in the morning, my, the camp called my parents. And they said, Adina needs to go to the hospital, whether we call an ambulance or we drive her ourselves. Would you like to meet us there? So drove me there and once I was there, I got my vitals back and, you know, recuperated from everything that that had happened. And then once I got home. We were still trying to figure out what was in that medication because we wanted an answer, the manufacturer just kept giving us the same answer. Like, it's classified, it's only for pediatrician. So we got my pediatrician to approve, like get, try and get an answer from them. They didn't really give a clear answer to her either. And so we noticed that this was a really big trend that had been happening a lot, especially like in our, like in past years with us and so many other families. So we decided to take action and we emailed representative Dean Phillips's office to ask, to schedule a meeting to talk about this, to find a solution so that this doesn't have to happen anymore because it really adds so much stress. Onto families and children themselves, maybe taking a medication they don't know is safe and not being able to find an answer. And just the manufacturers not being cooperative at all and not being able to give a good answer. So we finally got a meeting with Dean Phillips office and they helped us find a solution. rough draft that they were gonna try and fit my name into it. And it ended up being the Adina Act, the Allergen Disclosure and Non-Food Articles Act. It was really great. Once we heard about that, we took immediate action, we started finding co-sponsors to add, so we were reaching out on all of the different groups on social media to have them talk to their state representatives and have them jump aboard. joined Faires Courage for Congress, and we went on the Capitol with hundreds of other people in the community and lobbied for not only the Dina Act, but others too. The ADINA Act was mentioned at EV almost every single meeting, which is great we, and we got so many co-sponsors in just that day, which was such an amazing leap. And now that the new congressional session is in. Session.
Amanda Whitehouse, PhD:Right.
Jen and Adina Togal:The ADINA Act has been reintroduced and is now awaiting more co-sponsors.
Amanda Whitehouse, PhD:Wonderful. So it's a long road. You can have your guesses, I assume, but you never were able to get a straight answer about what was in the medication that you took that caused the obvious response that you had.
Jen and Adina Togal:Yeah, so from the parent perspective of that story is we did get a call. It was the weekend, like Adina had mentioned. We had done everything we could on our end to try and verify the safety of the medication because camp does an incredible job at making sure to ensure safety, making sure that they're working with us diligently reviewing not only what she does, but what she eats, how she interacts with others, what could have caused issues because there have been circumstances where she got cross contaminated without ingesting anything. I mean. There was some pretty unique experiences that result in a cross contact, but this one in particular, we ran through every single action item thing that she ate and nothing made sense, but the symptoms were very consistent with a cross contact response. And as things progressed, it was very clear. There was no other question that this was a cross contact situation. And, you know, when we got that call, we called every pharmacy we could get ahold of. We called all of our friends who were physicians or in the industry. We tried to call the manufacturer themselves, and of course, it was past business hours, so they weren't open. We, we made every single phone call and effort we could. We googled every single ingredient, but the answers received were varying at best. Never really identified what is the source of this, you know, it could be corn or it could be dairy, or it could be nothing. We don't know. So at that moment we kind of, we kind of had to make the choice of do we let her take the medication and have them watch her like a hawk. Or do we risk not having her have medication, her strep throat advancing and being in a position before knowing how long it can take to get an answer. The reality is, is even if we waited until the next business day to try and get information, it might be another. Two to three business days at best before we actually had an answer, and we couldn't leave her untreated for that long. so we, we made the choice to let her have that and unfortunately, the response was pretty clear. What was disappointing was that when we reached out to the pharmaceutical manufacturer that the response we got was essentially a non-response, then a refusal to include us in a conversation of escalation without a licensed pediatrician or pharmacist being involved. And then from that point, it took, in total about three and a half weeks before we got an answer of them refusing to provide details of whether or not any allergens or gluten were in that medication. And that was the moment of pure frustration and anger. As a parent, when you think to yourself, my child was in a rural place, that it was an hour away for her to get to a hospital that was safe enough for her to be cared for, and this should never be an issue. Because medications are ingested, inhaled and applied to our bodies, and they elicit the same type of potentially life-threatening reactions or GI distress or body responses as food does. one study recently found that up to 92% of oral medications contain gluten food allergies or dyes and. Commonly food allergens are found in the inactive ingredients. Well, what people don't know is that 72% of oral medication, on average, a capsule or a pill, is in, in inactive ingredients. And of the, upwards of a thousand different inactive ingredients used in medications. Today, 38 of those ingredients are documented to cause allergic reactions in sensitive individual populations. So the fact that this is a known issue and. There are very clearly real life cases where this is a response, not just to Adina, but we receive multiple comments from people who had similar cross contact reactions or responses from gluten or other allergens that this information should be readily accessible 24 7. I shouldn't have to wait on hold, escalate to a manager, include a pharmacist. Include a pediatrician, you're, you know, a parent or a caregiver trying to do this round robin of medication or God forbid, and in a lifesaving. Emergency situation where you need medication, it should be available.
Amanda Whitehouse, PhD:Mm-hmm.
Jen and Adina Togal:if it's a QR code, a website, something printed on the bottle. It should be there just like it is on
Amanda Whitehouse, PhD:Mm-hmm.
Jen and Adina Togal:can pick up a bag of chips and it says, contains soy, contains wheat, contains milk, it should say the same thing on medication. We're not looking for proprietary information. We just want access to the basics.
Amanda Whitehouse, PhD:Yeah. Everyone did everything right to protect Adina and keep her safe. And yet You did not, not have and could not get all the information necessary. Nobody should sit there with a child's health in their hands. Weighing Well, what's worse? You know, letting her be sick with strep, which obviously can lead to complications very quickly, or risking a chance this could be in here. It's horrible and it should never be a decision that anyone has to make for a child or an adult for that matter.
Jen and Adina Togal:Mm-hmm. I mean, that was one of the most terrifying phone calls I've ever received in my life. It was, I will, I will never forget getting that 2:00 AM call. the person on the other end simply saying heart rate has dropped. She's no longer medically stable enough to remain at camp. The hospital I want her to go to is an hour away. Do you want us to drive her or call an ambulance? It wasn't if she was going to the emergency room. It was, how was she getting there? My poor husband. I mean, I was, we joke about it now, but. I was halfway down the driveway before I realized I didn't have shoes on, and I hadn't even told my husband,
Amanda Whitehouse, PhD:Oh no.
Jen and Adina Togal:just grabbed the
Amanda Whitehouse, PhD:It's a mom in action.
Jen and Adina Togal:the door.
Amanda Whitehouse, PhD:Yeah.
Jen and Adina Togal:back in, he was like, where are you going? I'm like, camp, call me bye. Don't have time to wait for you.
Amanda Whitehouse, PhD:Oh my gosh. Yeah. Wow. Wow.
Jen and Adina Togal:it was a, it was a pretty scary situation and you know, the only reinforced that it was. That medication, not the medication, because Adina had strep throat and the, you know, typical medication for that is amoxicillin. And amoxicillin is known to cause some tummy troubles and adverse reactions in those responses. But this was far beyond what was a traditional response from that. And once she stopped taking that medication and her body recovered with all the things that were needed we worked with her. Pediatrician to find a medication that was confirmed safe of her allergens and she immediately went back on it without any issues and that only further reinforced that it wasn't the medication, it was that medication. And
Amanda Whitehouse, PhD:Mm-hmm.
Jen and Adina Togal:to send it every year. Yeah, every
Amanda Whitehouse, PhD:I bet.
Jen and Adina Togal:just in case. And now camp won't give her any medication. Justifiably, they're like,
Amanda Whitehouse, PhD:Right.
Jen and Adina Togal:to send all of her medication, including, which is only fair. Yes.
Amanda Whitehouse, PhD:Well for your safety, for your sake.
Jen and Adina Togal:I can see how they want that.
Amanda Whitehouse, PhD:Yeah.
Jen and Adina Togal:I don't blame them at all. But,
Amanda Whitehouse, PhD:Yeah.
Jen and Adina Togal:you know, that experience really taught us that it's not just about our need, that there are so many other families and individuals out there struggling with the same lack of access to information and beyond that. Not having the labels on medication impacts availability of some medication or even coverage of medication. Things like I never even thought about. For example, if you're looking for a medication and you need it to be dairy free, well, if the pharmacy doesn't carry that, sometimes you're outta luck and you can't get it. Or you have to pay for it out of pocket because the one you picked up from the pharmacist, you call the manufacturer and find out it didn't actually not contain your allergens or, you know, it wasn't. It wasn't the best choice for you and your, you know, prescriber kind of says, well, that's what your insurance will cover, and we can't do anything else beyond that. There's the consideration of who knows how many adverse reactions have been reported, but we're actually based in the foundation of an allergic response rather than a medication response.
Amanda Whitehouse, PhD:Right, and many parents, especially if you're newer to allergy life, and it sounds like you've had some very interesting experiences we have in my house too, but it takes some time to build that knowledge. When I was a new allergy mom, I wouldn't suspect that I would never think my child's medication. Could be causing an allergic reaction. So I see what you mean. People might think it's an adverse reaction and never even suspect
Jen and Adina Togal:Yeah.
Amanda Whitehouse, PhD:the medication was unsafe for the allergies,
Jen and Adina Togal:That, and prescribers can't even identify it as a potential reason for an adverse reaction because they don't know what's in it either.
Amanda Whitehouse, PhD:Right, and they're not allowed to. I specialize with this in my private practice, I never share anything from my clients, obviously publicly, unless it's happened to many people. And I can tell you that many of my clients have had. Especially with the dairy. You mentioned, the stats, that's one of the common ones that's included. People with dairy allergies getting a prescription, including from their allergist that has it in it. How can they stop it if they don't have the information? Right? Like. If it's just a recipe for scary stuff to happen.
Jen and Adina Togal:Yeah, and there are so many factors included in that, even beyond just simple allergens themselves, for example. 75% of the world is lactose intolerant, right? nearly half of all medications contain a small, but you know, cumulative amount of lactose. And a patient, for example, suffering from hypertension and high cholesterol may be on a daily regimen of, you know, three pretty standard medications that combine up to one milligram of lactose, which is the equivalent of a shot glass of milk. So those are things to be considered, and if properly labeled. They could be considered when being prescribed, and not only beyond just the medication, but the intake of foods throughout the day or at that time of the patients, you know, taking their medication. There are so many different layered things to consider and why the Adina Act is so important, not only just to the food allergy community, but the Celiac community and EOE community, the Alpha Gal community. And the. Foundation behind the Adina Act is, is that it's not solely focused on one. So it really pulls together the entire community as a whole and together our voice is Much louder. I.
Amanda Whitehouse, PhD:Yeah. Well thank you for starting that. And Adina, I'm sorry you had to go through something so scary for that to be the inspiration. I can't imagine what it was like for you to be at camp so far away from your parents and get so sick and have to be rushed to the hospital.
Jen and Adina Togal:Yeah, it was. It was, it was really tough, especially when I was taking the medication, knowing that there wasn't a firm answer on it, and I just, I had a gut feeling that I knew this was gonna happen. It just. It happen often that it just goes by perfectly. So it was really scary, just like waiting for the response to happen at any time, and especially like going through it, like it can be really hard as kid, especially going through it because you could be really embarrassed of like some of the symptoms that you're having. When you are around medical professionals, even though they've dealt with a lot of this stuff, can just be really hard, like not being around your family when it's happening, or even your friends that you feel comforted by. Especially since I go to a summer camp, my friends are my family, so I go to them for literally anything that I might need help with. And so not even being able to have them. It kind of hard and I just felt like a little bit alone, even though I was friendly with the medical staff and they knew me and we had history. It was just hard. And then once I had woken up, because I had been going in from consciousness once I woke up one time, they were like, we're going to the hospital. I'm like. What, who died? I'm like, why? Why are we going? It was really hard. And also one of the symptoms that I get is I lose some of my memory, like for the meantime, not just like entirely. So I just like sometimes don't quite remember what's happening or like what has happened. With all of the reactions that I probably happened over the years, I could probably only name four.
Amanda Whitehouse, PhD:It's okay if you don't wanna talk about it, but I felt like you would be a good person to try to explain to people what is it like to have, not just this, but a handful, unfortunately, of scary things like this happen. And then just marching on, go back to camp the next year and take medicine when you get strep again, and just keep going forward after you've had these awful things happen to you.
Jen and Adina Togal:Yeah, I'd love to. So I like to think of myself as just a really happy person all the time because when I know so many things have happened to me. How my brain works is I kind of just push it to the side and think about it later, which I know is not very healthy, but it's a way
Amanda Whitehouse, PhD:It can be helpful.
Jen and Adina Togal:everything that's happened. And I just think that having a positive mindset is the biggest thing because if you go in knowing that like, like. I am never gonna be able to recover from this, or I'm always gonna be worried that this or this or that. Like it's gonna take a big toll. And while I do have those, that anxiety, like all the time, I try to think of the positive sides. Like, okay, I have my family and friends near me that I can go to. I have, I'm not alone. So I'm not going through this alone if I need someone to talk to, I have my doctors with any concerns. I always have my medicine near me in case I need anything. and even in like public situations, like when I go somewhere, I always locate the bathroom and the trash cans, you know, if anything were to happen. So just like knowing that you have a, a place to go or a person to go to is really nice, especially as a kid like. I have so much family and community around me, like after going to some of the FARE Summits, I have met so many friends that go through the same thing I do, and it's just so great to know that there are more people out there like me, and I don't feel alone like I did a couple of years ago. I did a school project and my topic was, people ignoring their, allergies, celiac. how it affects children's mental health. And it was a large majority of people. And I think that if you just ignore it, it'll only make it worse. And if you think that ignoring it is going to make like your life better because you don't. You just don't wanna be thinking about your allergies. You wanna blend in with everyone else. And especially being a teenager when you're older and not younger, you have to think about it on your own personal level because you don't always have your parents near you. If you're going out with your friends or just out and about, it's, it can be a lot. And so just like, you know, having your resources, making sure everything around you still like having that anxiety, but not. Ignoring it is really good because you don't want to ignore it if you wanna still be safe, and especially if you have dietary restrictions that impact your life so much when you get sick. also having a willingness to talk to your yeah. Therapist. So is it okay if I share? Sure. Yeah. So Adina does have a therapist that she sees regularly, and part of that is managing her mental health in regards to her food anxiety and things related to her responses and reactions and. You know, the very real trauma that's caused from having responses from her celiac and food allergies. And I think that largely in part, helps her manage the mindset in knowing, you know, I can go into it with a positive mindset, but also I have someone. talk to about those feelings that is not just mom and dad or my friends, like a neutral third party person. And we take mental health very seriously in our house. And the recognition of the mind to body and gut is so critical. And you know, her therapist does a lot of work with like nervous system resets and making sure to provide resources on how to calm those or redirect your thoughts so that you can pause yourself. In those instances. And I think that has been something that we started really early on in her diagnosis. And has since progressed, since things have gotten a little bit more advanced in her awareness of the world and the experiences that she has to manage as well as the things that have occurred to her in her life. But the project that she did just speaks volumes to the mindset that she has and how. Celiac and food allergies and her, EOE is not just a, a part of her life. It's a part of so many people's lives and how they manage it is not just with the things that they ingest or put on their bodies. It's mental health is critical in,
Amanda Whitehouse, PhD:Yes.
Jen and Adina Togal:to.
Amanda Whitehouse, PhD:Yes, and I think you said it really well, Adina, thank you for pointing out. Being positive doesn't mean just. Thinking everything's gonna magically work out and nothing's wrong, and not focusing on it it's a very real danger. It's a real risk with all of the medical stuff that you manage. So you're absolutely right. It's about being positive, about the fact that you have supports, you know what to do. I have the resources at hand. That's the positivity, not just the like, you know, we call it toxic positivity. Like everything will just be fine. I don't have to do anything. It'll work out magically by itself.
Jen and Adina Togal:Yeah,
Amanda Whitehouse, PhD:Thank you.
Jen and Adina Togal:really feel like it's more relevant in teenagers lives. wasn't diagnosed as a teenager, so I heavily relied on my parents, but as I grew up. Having my allergies and like knowing how to take care of them. It really, it was hard to change that mindset of, oh, my parents will just take care of it too. Now I have to be taking care of it and I have to be ordering for myself and I have to be making sure I don't touch this surface or I wash my hands or I talk to my friends about this so that they're understanding and it can just be a really big change in your life. But. I really implored myself to go out of my bubble and to really like, try to not be embarrassed about my allergies, but to more speak out about them and like make sure everyone knows so that I don't get sick, because I'm really not looking forward to getting sick any other time.
Amanda Whitehouse, PhD:That's a really hard thing especially in the teenage years to do. Can you talk about how you got yourself to that point? And maybe your therapist helped with that too, but you know, for us as parents, we're like, of course, tell everyone, there's nothing embarrassing about it, but it doesn't always feel that way, even though it's true. Right.
Jen and Adina Togal:My parents helped me a lot to be this outgoing with my allergies. When I was younger, like nine or 10 or eight, they had me order for myself, or they had me at least start with sharing my allergies to the like point that I knew how to, and then they would sub in or then after would give me tips. I'm like, next time make sure you say you have a dairy allergy, and make sure you say cross-contamination matters, because every little thing you say. Plays into how the chefs make your food, how your friends act around you. Like it really makes a bigger D, it really does a lot more than one may think it does. And so I was just really grateful to have them to guide me in this. also when I was out, I really challenged myself to be nervous around my friends because. When I was like, would say 10, I was really nervous to be out to lunch with my friends and like have to say to the waiter like, I have all of these allergies. Please make sure you don't kill me like say all of these different requirements. And it, I was just really worried that my friends would think I was different. But obviously my experience isn't going to be the same than everyone else's. I have a really strong community that is there for me all the time and they understand, and it was even better when another classmate in my class was diagnosed with Celiac. So it was really great to be able to guide him on how to do this, especially since he was diagnosed in his teenage years. It can be really hard to be so old. Well, not so old, but like.
Amanda Whitehouse, PhD:Right that far into life. Yeah.
Jen and Adina Togal:like with your brain management and like how you act rather than you did when you were like five or six, like going into this lifestyle of being able to eat all the foods you like to now, none of them probably, and like you have to change your diet. You have to eat more. Make sure staying healthy, but also like all this stuff plays into it. Like when you're a little, it's a lot easier to just say, oh, we're eating new chicken nuggets
Amanda Whitehouse, PhD:Right.
Jen and Adina Togal:of,
Amanda Whitehouse, PhD:You might not remember what the old chicken nuggets tasted like
Jen and Adina Togal:So being able to guide him on that was a really big step in my process of still figuring out my own. So I think being able to teach him more than I had actually thought about in my life was great because I saw way more in the world I saw how other people take care of their allergies rather than how I do, and it really just gave me a great sense of direction and understanding of how to live this way. Hmm.
Amanda Whitehouse, PhD:Yeah.
Jen and Adina Togal:never forget getting that first phone call of her with her friends, and she was so excited. I remember she called me from the bathroom at Starbucks and was like, oh my gosh, mom, I just made an order for myself and I'm so excited. And I watched them do it, and it was so safe, and she was just so empowered with her own ability to have that conversation without a parent present, without like. She just did it on her own and the excitement in her voice and being able to have that like autonomy and ability with comfort level says so much as a food allergy parent where you're like, okay, that's great. I'm so thankful that we've reached that point. This is one little baby step in the big world we have to live in.
Amanda Whitehouse, PhD:Yeah. And that's how you have to do it is little steps at a time. Like you said earlier, Adina, like I ordered, but then they said, oh, you forgot to say this part, but you still were starting to take the reins and take responsibility and now it sounds like you've realized how much you have to teach other people And you're doing that in so many ways.
Jen and Adina Togal:Yeah, I also went on a school trip and being away from my parents for so long. Was one a gigantic leap my allergen life because I now had to, when I was ordering out, had to make sure I watched them so precisely. I had, I was like, oh, what questions do mom and dad ask? What things do they look out for before I eat my food and like make sure I see all these things like, oh, does this look like dairy? Does this look like a little bit of onion on there that I can't have like. It was just really, while it was overwhelming, it was so amazing and just genuinely so exciting to be able to order out for myself like that. It was of the same of how it is like at home, but this was like more often, more frequently, and we didn't have our phones, so I couldn't just like. my mom, be like, what am I checking out for at this place? This kind of food? Like what am I looking for? Like I had to rely on what? She had told me before what I knew, what my, she had told my teachers what they were gonna help me with.'cause my teachers were really supportive in the endeavors that we went through. While they also really made sure that I had all the food I need, if there wasn't a place that we were going to that was safe, they made sure I had food. So it was just really, really exciting to, or be able to order like that for myself and it just really, that I feel like was the most breaching point that made me not anxious to. Order in front of my friends because we would be going in groups so I would have to order on my friends and it was just so, I just, I loved it. It really made me not nervous and I was so excited when I called my parents af, like when we were allowed to have our phones at the end of the day. It was great to be able to have that. Kind of free, like be that free in that kind of circumstance, because I got to like take the reins and
Amanda Whitehouse, PhD:Yeah.
Jen and Adina Togal:gave you, I kept myself safe. It
Amanda Whitehouse, PhD:Yeah.
Jen and Adina Togal:you time to settle into it.'cause it was a, it was like a two week long trip. So like, it was, it was a, a very long trip that required a lot of traveling. It was international, there was foreign language involved. It was. It was a large endeavor that took a lot of planning and prep, but the empowerment that it gave her was beyond words. And she came back such a much more confident person.
Amanda Whitehouse, PhD:Yeah. I love the confidence for you. I hope will seep into all of the parents. It's mostly moms that listen to my podcast and we all need the reminder it's so scary for us, but it's so good for you and it makes you feel so good. It makes you feel so strong. And like you said, it went from being this thing that's like uncomfortable in front of your friends to. I'm so mature and responsible and independent. I've got this. You said earlier, you're complex. Everyone has something complex about them and this is yours. And look how you just take charge of it. I love how you're able to talk about how good it makes you feel.
Jen and Adina Togal:Yeah.
Amanda Whitehouse, PhD:This is making me curious you may not know yet, and you may be sick of people asking you this, but what do you think lies ahead? You did the school project, do you wanna contribute to allergy research and knowledge? What do you wanna do?
Jen and Adina Togal:So I've really been thinking about this a lot lately and talking about it with my friends and mentors, and I really want to specialize in like psychology with pediatric patients, specifically with dietary restrictions. Because I, I, because I'm so active in the allergy community, it just plays such a big part in my life. Then it may some, then it may someone else's life. Letting other kids know that it is okay. And like they can talk about it like, I think. Personally, when I was younger I didn't wanna talk about it with anyone. Like I kind of kept it to myself. It was like a me thing, but I want kids to be able to talk about it and like verbalize their feelings and how while it may be hurting them physically, how it's making them feel mentally, because it takes such a toll while also on parents, it takes such a toll on kids having these allergies and. It can just be so hard. So I know what it feels like, and I think that me having that experience and growing up in this kind of community and knowing other people's experiences, I think it would be a great way for me to keep contributing to the allergy community, but helping in a way.
Amanda Whitehouse, PhD:Yes, you'll be so good at it too.'cause you're right, when people come to me. The feeling of like, oh, you get it. There's a different level of relaxation and trust. So for kids to talk to you and you to 100% understand all of those emotions will be so powerful for them. I, I am here for you forever as a resource, as you venture into that career. I'm sure you've made a lot of other good connections too along the way that, that will help you with that. But that's amazing. It makes me really excited that you'll be doing that.
Jen and Adina Togal:Thank you. Our biggest piece is just making sure that. First and foremost that people understand the legislative process when it comes to federal bills. So while our bill was initially introduced in the hundred and 18th Congress in January of 2025, when the administration changed over all bills that had not passed to that point were wiped off the slate and had to be reintroduced. So if your rep House, US Health House of Representative was previously a co-sponsor on the Adina Act in last Congress, you need to call them again and ask them to ign on as a co-sponsor. Now from our, our internal tally. Within our family and running our numbers, it looks like of the 54 co-sponsors, I believe offhand that were our bill the last session, 41 of them are still in congress. Which is incredible. And if we can reach out to all of those and get them to sign back on, we would be in an incredible position considering when we ended the hundred 18th Congress we were in the top 5% of legislation. And in December we were actually officially endorsed by the Problem Solvers Caucus, which is a huge deal as well as being largely bipartisan. So if we are able leverage the previous co-sponsors to get them back on board by having our constituents in their own areas call and request them to re rejoin. We should be in a really good position, even though we're already starting off really well. We have our initiating co-sponsor list, and I think currently there's. Six on the bill, including US rep Kelly Morrison, which is incredible. But we have a lot of headway to go, and I know that the biggest hurdle that we need to cross is making sure that we get the word out to everyone to call, write, Email. And persistence with kindness is the key. So don't just call once, feel free to call twice, maybe three times, say hello. Get to know your reps.
Amanda Whitehouse, PhD:Right. Make yourself remembered and make the the cause stick out in their minds. Right.
Jen and Adina Togal:Exactly.
Amanda Whitehouse, PhD:Are there places you want to point people to, follow you?
Jen and Adina Togal:You can follow us on the Adina Act effort on Instagram. There's also a Facebook group that you can follow us for the Adina Act effort as well. And we share tidbits, status updates, information throughout all the platforms that we can. Feel free to tag us as much as possible. If there are any collaborators out there that wanna help spread the word, we're always open to it.
Amanda Whitehouse, PhD:Awesome. I will share all that with everybody and I'm sure that they'll be excited to, support you with this next loop. Do you have a timeline of what we can expect to be the next step or what we're waiting for? Next.
Jen and Adina Togal:Really waiting for some more co-sponsors, federal bills like this typically take between five to seven years to pass. We are taking a really strategic and intentional path in that Considering the fact we're already two years in, we've got some really great headway. Additionally this time around we're looping in, other big players to be part of the conversation, to be positive and making sure that we're, you know, playing nice within all the realms possible. Because our entire goal is to get this passed. So you know, we wanna have those conversations with pharma. We wanna have those conversations with medical teams. We wanna talk to, not just the parents and people who are impacted by this, but the people in industries that are affected by it. So really. In that regard, that's kind of the backend that we're working on. And that the more co-sponsors that we can get on board, from my understanding, once we hit about the 70 mark, is when we really make some heavy progress. So you know, we hit our first milestone by hitting 54 at the end of last Congress, which is phenomenal given the length of time from the point in which it was introduced to the end of the hundred 18th Congress and we're starting strong with a really large number of pre-existing, past co-sponsors still in the US House of Representatives, so we're feeling really hopeful.
Amanda Whitehouse, PhD:Great. Thank you so much for sharing all of this with us and for doing this on behalf of everybody that it will benefit. This would affect a lot of people
Jen and Adina Togal:yeah. Well, we're so thankful for you having us on and sharing and letting us just spread information and learn from your experiences and.
Amanda Whitehouse, PhD:Absolutely. We'll have you back, we'll share updates and hopefully we'll have, you know, we'll have a success update party, so you can tell everybody when, when things are done.
Jen and Adina Togal:thank you. It was really great being able to talk to you. Thank you.
After hearing all this today, I know that you wanna get involved, so here are three steps you can take action on and be part of this movement. Number one, follow the Adina Act to stay updated on their progress. On social media, you can find them at the Adina Act effort, And their website is adina act.com. You will find a sample letter that you can use to take step number two and reach out to your members of Congress i'll put those links in the show notes. A quick email or a phone call can really make an impact. And number three, share the information with other people that you know care about individuals living with food allergies and with celiac disease. Share this episode. Share all of the content that the Adina Act family is posting online. Share the website, get the word out. We'll all keep supporting Adina and her family to make big changes that will make medication labeling safer for everyone. the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.
