Ep. 276: Suspect A Food Allergy? Start Here!

What do you do when your child has that first allergic reaction—and your allergist appointment is still weeks, maybe even months, away? That in-between time can feel overwhelming, with so many questions and not enough answers. We’re sitting down with FAACT Medical Advisory Board Member, Dr. Justin Greiwe, to walk through practical steps families can take right now to stay safe, feel more confident, and navigate this uncertain window. 

Resources to keep you in the know:

• FAACT's Newly Diagnosed section
• FAACT's Newly Diagnosed Guide
• FAACT's  Living With Food Allergies Resource Center

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Sponsored by: ARS Pharma

Thanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

Transcript

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Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions,

each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast.

I am a food allergy parent and advocate and the founder of the Grateful Foodie Blog. And I am FACT's Vice President of Community Relations.

Before we start today's podcast, I just want to pause for just a moment to say thank you to Ars Pharma for being a kind sponsor of FAACT's roundtable podcast.

And please note that today's guest was not sponsored or paid by ARS Pharma to participate in this specific roundabout podcast.

What do you do when your child has that first allergic reaction and your allergist appointment is still weeks away, maybe even months away?

That in between time can feel overwhelming with so many questions and not enough answers.

So today we're sitting down with FAACT's Medical Advisory Board member Dr. Justin Greiwe to walk through practical steps families can take right now to stay safe and feel more confident and navigate this uncertain window.

Welcome Justin, to FAACT's Roundtable Podcast. We're absolutely thrilled you're here with us today because this is a topic that we need to all discuss.

Dr. Greiwe: Awesome. Thanks for having me. I appreciate it.

Caroline: You're very welcome. For listeners tuning in for the first time today, please share your background and why you were interested in food allergy altogether.

Dr. Greiwe: Sure. I'm board certified allergist immunologist in Cincinnati, Ohio at Advanced Allergy Services.

I've been in practice for almost 12 years now, which sounds insane. Trained at the Cleveland Clinic and when I first got out of fellowship, OIT was in its infancy and so I was interested in food allergies and fellowship, but thought it was a great time to kind of dip my toe in the water with oral immunotherapy and that really got me started in the food allergy space and it's been a wild ride ever since.

But we've had a lot of fun and have treated a lot of food allergy patients in our clinic.

Caroline: I love how you're using the term wild ride. It feels like if there's so much change and there's so many things going on, but it's a good wild ride.

Dr. Greiwe: Yeah, for sure. No, there's lots. There's been lots of advancements over the last decade, for sure.

Caroline: Oh, absolutely. Both my kids who have food allergies are 27 and almost 23. It's just mind blowing to me to see everything that's happening.

So we're very excited about these times.

Dr. Greiwe: Yeah, for sure.

Caroline: Let's dig in now to a moment that so many families face. And it's that time between the first allergic reaction, or even a suspected one, and the first appointment with an allergist.

So we know this can feel very overwhelming, very uncertain.

And for parents and caregivers in that window, what practical steps can they take to stay safe,

gather the right information, and just feel more control before that first visit?

Dr. Greiwe: Yeah, I mean, you explain a period that's pretty scary for patients and parents where you kind of get first reaction and really don't have much guidance. And so, you know, before you have that first visit with an allergist, you know, there's a few steps that you can take to really provide some impact immediately and really keep you safe in that wait time.

So definitely, of course, strict avoidance of the suspected food. So if there's a reaction, whether it be eggs or milk or peanut, strictly avoid those foods. In the interim, don't experiment or do any trials, but just kind of hold off and wait until you get seen so you can get some testing.

If you can have a kind of a clear emergency plan in place. I know oftentimes you can't get an epinephrine right away if you've had the reaction that required an urgent care or ER visit.

Oftentimes they will prescribe an epinephrine, but it's important to have that plan in place and then, of course, using antihistamines and things like that, if there's any mild symptoms,

it's important to document things as well. You might think you'll remember things in a month or two when you see the allergist, but, you know, while it's fresh, definitely document what food was eating, the timing of the symptoms,

exactly what you know, what occurred? Were there hives,

vomiting,

shortness of breath, wheeze? How long did the symptoms last for?

Did you give any medications at the time? So, you know, a really kind of comprehensive, detailed analysis of that day can be helpful because you sometimes forget things over time.

And oftentimes it's important not to overreact either, and not like completely eliminate all foods or just eat chicken and rice or something like that. We've seen patients who have severely restricted their kids diet based on concerns and just make sure you're prepared when you show up.

Have that detailed history, have that timeline ready when you see the allergist, have all those medications and everything available so that when you do get in the office, you're ready to go and you can really have a detailed and fruitful conversation.

And I think that's a really good place to start for sure.

Caroline: Now what would you say for the family that might turn to Google and start Googling things?

So in this time period, so now they're going to take good notes, it was really good information and document everything that's going on. But you know us, we can't help ourselves from going online.

So do you have any suggestions?

Dr. Greiwe: So I mean, again, it's impossible to say don't go onto Google. But I mean, I think things have improved a little bit now with AI and better tools. I mean, if you use certain tools like open evidence or AI tools that are geared specifically for evidence based medicine, sometimes those can actually provide pretty accurate assessments of what you might do in the interim before seeing an allergist.

Of course I wouldn't use it to officially diagnose, you know, you need to be seen by someone in person and have testing completed and all that. But I think, you know, when used appropriately and not used as a sole,

you know, decider of next steps, I think can dabble in those areas and look some things up. That's fine.

Caroline: Good. Thank you.

So now let's shift just a little bit to something that's equally as important. But the emotional side of this. You already mentioned that you have people who are just eating maybe chicken and rice.

So that period of uncertainty, again, it just can feel so overwhelming, so confusing. And again, there's a lot of fear going on.

So what strategies or tools can help parents and caregivers stay grounded, manage stress, and just keep moving forward when everything just feels so unknown and frightening? Do you have any wise words of wisdom?

Dr. Greiwe: No, you're absolutely right. This is the hardest part for families. And it's not just medical uncertainty, it's emotional weight of it all. You know, what if? And those types of questions.

And the goal here isn't to eliminate the anxiety completely, it's just to help families manage kind of a healthy, productive way forward. So normalizing the anxiety is fine, but we want to make sure that we keep patients vigilant and safe.

But we don't want to make that anxiety overwhelm or be paralyzing because that can really lead to, you know, long term consequences. So I think a healthy respect is needed at the beginning.

But once you have that visit with the allergist, hopefully they'll be your guide and be your safety net moving forward where they can give you the tools necessary to feel safe, ongoing, but.

And also kind of focusing on what you can control. You know, uncertainty always feels overwhelming,

but there's definitely things you can control. As a family with a child with food allergies, as we talked about, avoiding the suspected trigger, reading labels, and then having that plan in place.

So building these kind of simple safety routines creates a better sense of control and confidence, I think. And creating some structure, too, I think reduces stress. I'm a big checklist guy.

But, you know, routines are grounding for sure. So, you know, when you go to the grocery store, kind of, you know, stick with the same safe foods and the same emergency plan and the same grocery habits.

So, you know, you develop these predictable patterns that make things more manageable. And that's,

of course, always easier with kids. I mean, that's why we love structure with kids and patterns. They thrive with that. And I think in a situation where you have an unknown,

that makes it even easier. So.

And definitely be mindful about how you communicate with your kids as well, because, of course, they absorb everything. But again, we want to create a healthy respect, but we don't want to paralyze them with fear, as this can really bleed into other social interactions and cause a lot of anxiety.

And then, of course, eliminating that noise,

especially online. We talked about avoiding social media or, you know, these very kind of fantastic or very scary stories. Use trusted medical sources, lean on your allergist when you're able to get in, and really focus on those trusted sources and not the online community.

Now, there are some great online forums with parents and people that have been through this before. I'm talking more about kind of the quick videos and clips that can be concerning and.

And like I said, stay connected with people who are going through the same thing you are. So those support groups, those Facebook groups, other families in your neighborhood or area that are dealing with food allergies, there's lots of community resources.

Those are all really helpful and, you know, give yourself permission to take it all in and lean on your family members for support, and your parents or wherever it is, approach it like a team.

So that's all helpful when it comes to this very scary new diagnosis.

Caroline: And I love how you're saying, just take it all in, because I remember when my son was first diagnosed, my husband and I literally were just like, let's just clear the day.

And we just have to sit with this,

you know what I mean? We have to sit with the diagnosis and just get your head around it. And then once you get your head around it, then you're like, okay, now let's move forward,

let's get the strategies. And you know, I'm glad you mentioned support group so I can tag onto that.

I would advise listeners too, if you are looking for support, look for support group that has a medical advisor to it, such as fact. You can actually go to our website and we have a link to help you find support groups that are fact recognized.

And to become a fact recognized support group, you have to have a medical director.

And what's nice with support groups either online or in person, is if there's a medical director, then we know that they are turning to medically vetted sources and we know someone's engaging to make sure that you are getting good information.

And like Gregory just said, you're not just picking up information off of a reel in 30 seconds.

Dr. Greiwe: Yeah, yeah. And I think when families anchor themselves on reliable information like you just mentioned, from trusted sources, the routines,

having a clear plan, a lot of that uncertainty starts to shrink and it's replaced with more confidence. And it's not because the risk is gone. It's just people then feel like they know how to handle the situation.

And again, I think that breeds, you know, a better outlook and more confidence long term. So, yeah, all those things go together for sure.

Caroline: Great advice. And just for a quick second, if you don't mind talking about emergency action plans, you had mentioned them briefly, so just in case someone's listening today and they've never heard of one.

Dr. Greiwe: Yeah, I mean, we try to kind of review in detail when patients come in about how they're going to respond when a reaction does occur. Because, you know, usually it's you're, you're, you're prepping and training for these occasions and so, you know, in the rare occasion they do occur, you're ready and it's kind of like practice.

So we sure that patients of course have up to date epinephrine auto injectors that they've used the trainers and know how to use them, not just the parents, but the child,

grandparents, babysitters, whoever it is, you know, have a list of potential medications that could be available and know the symptoms that you're looking out for. Again, not just for you, but for any caretakers.

Maybe you've been having a paper or a PDF where, you know, people can refer back to it in case of emergency if they're nervous or don't know what to do.

You know, having a stepwise, consistent approach with any reaction can just help get rid of any doubt or questions from patients or caretakers in an emergency situation. So, and ultimately, you know, when in doubt, use epinephrine.

No one's going to yell at you for using it, even if you, you know, in the end didn't really need it. It's always important to err on the side of caution when you have a good relationship with your allergist.

And I tend to provide my personal contact information for all my patients. It's nice when they can just call and say, hey, Johnny's having a reaction. Is this something that I should treat epinephrine with?

Or can we hold and wait? Or do we use, you know, antihistamines? So it's nice to have that immediate contact with a physician. It's not always possible, but a lot of allergists are fine giving out those cell phones so that in case there's any issues, especially with oit, we want to make sure that we have instant contact with our patients.

So all those things can be helpful.

Caroline: That's wonderful.

So now let's talk about the real life. In the meantime, in between again,

the potential reaction or reaction and seeing the doctor. So for families who don't have a diagnosis yet but still need to cautious,

how can they navigate everyday moments like sports and visiting friends or family or going to graduation or something?

So do you have any tips for communicating with schools or hosts or others to help keep their child safe? But they're still figuring things out. So it's that weird in between time where you don't have a diagnosis, you can't say, well, my child has food allergies, but we suspect dairy is a problem.

Any tips for families?

Dr. Greiwe: Yeah, I think, you know, from a standpoint of this scenario, I think most families realize that life doesn't pause while you're trying to figure this out. So, you know, kids have sports, as you mentioned, birthday parties, school,

and the key is learning how to navigate those environments safely without completely pulling back or removing yourself from daily activities. So I think defaulting to just a simple consistent rules is important.

Putting it on yourself to bring your own safe snacks or meals, avoiding shared food situations, and of course, when in doubt, just don't eat it. And I think as you mentioned, while you don't have the official diagnosis yet, if you're concerned and there's a trigger that's concerning.

And there's a food that you're particularly concerned about, you can address it like, hey, I think my child has an allergy and treat it like he does or he or she does in a similar way that an allergic patient would have a go bag, you know,

have, you know, an anti histamine and an epinephrine and a simple written plan on hand which just helps reduce your anxiety and caretakers around anxiety. So, you know, simple communications, maybe even a script that gives people an idea of what to do and why you're avoiding things.

So just being clear, calm, direct is perfectly fine. I think more and more nowadays people are more than willing to listen to food allergy concerns and complaints. Not always, but I think people are getting better.

And give any caretaker a clear action plan and make sure it's concise. You can use resources from fact and other places, you know, guys have great resources, those types of things.

So schools, coaches, babysitters, family members, you know, everyone should be on the same page. So I think, you know, you don't have to treat yourself different just because you haven't received the official diagnosis yet.

If there's enough concern and there was concerning history, I think you can treat it like you have a true food allergy until you get that official discussion with the allergist.

Caroline: Such good advice. You're right. Just treat it as if it's there until you know that it's not there.

Yeah, good, really solid, sage advice. We're coming to the end of our time together, so before we say goodbye, is there anything else you'd like listeners to hear from you?

Dr. Greiwe: Yeah, I mean, I think there's one thing I want families to hear, it's that you're not alone and feeling overwhelmed. What you're feeling is completely valid and we know that.

Even research shows us that dealing with food allergies and families and patients often experience much higher levels of stress and anxiety. And, you know, there's a lot of uncertainty and especially when the food allergy isn't diagnosed yet, so that these are all real feelings and you're not alone.

But the good news, it is manageable and it gets easier with time. As you understand more, as you learn more,

you're going to gain more confidence and your caretakers are going to gain more confidence and your child's going to gain more confidence.

So the beginning days are really tough. Does get better.

And again, you don't have to be perfect. You just have to be prepared. You're not going to have a flawless approach every time. As long as you have a plan in place, you know how to respond and you take those consistent steps moving forward, you know you're going to keep your child safe.

But there's an accidental exposure. It's not anyone's fault. These things happen. What we don't want to do is make food allergy diagnosis shrink your life or make you feel like you can't enjoy life because you have this new diagnosis.

We want you to enjoy social experiences with confidence and feel like you have a normal social life. So we'll give you the tools to do that. But it does get easier.

So that's kind of my final thoughts here today.

Caroline: Well, I appreciate them. And I have to say I think you just came up with the newest T shirt slogan. You don't have to be perfect, just prepared. I can see this on T shirts.

That is such a great statement.

Oh my goodness. We really appreciate you being here. You are super busy and again we just always appreciate your engagement with the community.

You're so easy to understand and just warm and you speak to us in lay terms where we can take what you say and do something with. So thank you so much.

Dr. Greiwe: Of course. Thanks for having me again. It was a pleasure.

Caroline: You're welcome.

Before we say goodbye today, I just want to pause for one more moment to say thank you to ARS Pharma for being a kind special sponsor of FAACT's Roundtable Podcast.

And please note, today's guest was not sponsored by or paid by ARS Pharma to participate in this specific podcast.

Thank you for listening to FAACT's Roundtable Podcast.

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