Ep. 256: Tips for the Newly & Previously Diagnosed

A new food allergy diagnosis—whether it’s your own or a loved one’s—can feel overwhelming. What many people need most in those early days are practical, real-world tips to make life feel manageable again. We’re joined by FAACT-recognized support group leader, physician's assistant, and advocate, Charity Luiskutty, who shares down-to-earth advice for those newly diagnosed, as well as smart reminders to help seasoned patients stay confident and on track. 

Resources to keep you in the know:

• FAACT's Newly Diagnosed Guide
• FAACT's Tips for the Newly Diagnosed
• FAACT's 'A Caregiver's Guide'

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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

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 FAACT's Vice President of Community Relations.

Before we start today's podcast, I just want to say thank you to ARS Pharma for their kind sponsorship of FAACT's Roundtable podcast.

A new food allergy diagnosis Whether it's your own or loved ones can feel overwhelming.

What many people need most in those early days are practical, practical, real world tips to make life manageable again.

Today we're joined by fact recognized support group leader, Physician's assistant and advocate Charity Luiskutty. She's here to share down to earth advice for those newly diagnosed as well as smart reminders to help seasoned patients stay confident and on track.

For those meeting you the first time, can you share a bit about your journey, both your background and what led you into the food allergy community? Because you are quite the leader.

Charity: Oh,

I appreciate you saying that Caroline.

I am a mom to three food allergic children, all with multiple and different food allergies and a wife of a food allergic adult. They were all born with food allergies and they are multiple and different and so they are young adults now.

I have a daughter that graduated from college a year and a half ago and she actually traversed off to Tanzania last summer fully confident. I don't know that I was that confident, but she was and she had a great time and handled that very well.

I have a son who's a junior in college and my third is a senior in high school this year and they're all doing really well. The current allergies that we deal with in our house are peanut tree nut, egg, dairy, sesame and sunflower seeds.

So over the years we've outgrown a lot because we had dealt with all of the top nine plus more.

I had counted up last year for an event how many oral food challenges that we've done over the years and it's been over 50 food challenges that we have completed.

Some successful, some unsuccessful. But even with those unsuccessful ones we've learned so much. Our children are very comfortable with the use of epinephrine.

We've also learned some different tolerances of different food allergies that maybe they didn't complete where they could eat full servings. But then we felt comfortable with using shared lines for some of the allergens that they deal with.

So all of those have been very empowering. Even when they were younger,

those food challenges were very empowering. So those were things that we've learned over the years. We've done different therapies like oral immunotherapy, sublingual immunotherapy.

My husband and one son were on Xolair, not for food allergies, but that is a new treatment for food allergy. They were on for a different indication.

I have a lot of different experiences personally with food allergies over the years and the different treatments and such,

but then I've been able to also utilize these experiences professionally. For the last three years, I've worked with our pediatric allergy and immunology practice at our children's hospital and that's been a really beautiful way to incorporate my personal experience professionally working with these food allergic families.

I had been part of the local support group that was fact affiliated for the last 10 years or so, but now to be able to use that professionally has been a really beautiful experience.

Caroline: Charity, I think you are the only person I know that has that much experience in the home.

I can't believe it. 50 food challenges. But with all the food challenges and all the different allergens and treatments and then, you know, the medical side and I just love how you're able to bring it all together and to share all of that with your support group and all of us.

You are always there when anyone needs you and you're always there sharing this great information.

So I just think your background is so unique and just absolutely so stellar. So thank you for sharing.

Charity: I appreciate that encouragement.

Caroline: You deserve it. So now you, with this great vast knowledge, if a parent or caregiver came up to you right after their child got diagnosed with food allergies,

what three practical pieces of advice would you want them to walk away with?

Charity: Yeah. So I think the three most important things to keep in mind after a new diagnosis, because it can be overwhelming and there's such a huge learning curve,

but the three most important things that I think of, number one, would be always to carry your epinephrine.

That is the most important thing. Because if there were to be an allergic emergency epinephrine is the treatment of choice, not antihistamines,

not waiting it out. But epinephrine is the treatment of choice. So you have to carry your epinephrine and it will be prescribed in packs of two, because a certain percentage of people may need a second dose.

Sometimes in an emergency, someone may get nervous. It has been known that people may inject themselves in the thumb or misfire it for some reason. So you always want it in a set of two, so don't separate those.

But you can't use the medication if you don't have it. So you need to get in the habit of carrying the epinephrine with you. The second thing I'd say is never hesitate to use the medication if you are having a reaction and you think you need it.

So understand how and when to use it and never hesitate to use it.

So we always say in our house, if you think it, use it. That's what we taught our children and their caregivers.

If it crosses your mind, do I need to use it? If you're wondering, that's the answer to your question. If you think it, use it. We also came up with the mantra, EPI first, EPI fast, ask questions later.

I think I may have heard that from another podcast somewhere along the way.

In the event of an emergency or a reaction, you don't have to be a detective at that time and try to figure out what's happening or what may have caused a reaction.

If something's going on, you use your epinephrine and you use it quickly. And then later you can try to figure out what may have happened and course correct or try to figure out how that cannot happen in the future.

That's a good thing to do. But in that moment, you just need to treat with the epinephrine. So don't hesitate to use it. It cannot hurt you to use it, even if you may not have needed to use it.

But withholding that can cause issues.

So that would be the second thing I would say is never hesitate to use the epinephrine if you think you need to use it. The third thing I would is to have your action plan.

If you are newly diagnosed, you should have come up with an action plan with your allergist or with your physician.

So have a written action plan and know how to use it and how to follow it. And if you have any questions, ask about that and to be prepared for when a reaction may occur and what you'll do.

A very smart allergist that I know when I started going to a local support group. She would talk about what are you going to do when a reaction occurs? And I got a little offended by that and I thought,

what do you mean when a reaction is going to occur? And she'd say, yeah, not if a reaction happens, but what are you going to do when a reaction happens?

And that kind of reframed my thinking. Because there's food all around us. You can be exposed in different ways. You have to eat so many times a day, every day of your life, and it's just something to think about, that it is likely to happen at some point in your life or your child's life,

and you want to be as careful as you can, but the reality is as likely something is going to happen. You're, you're aiming and your, your goal is to live the most normal life that you can and that's going to look different to everyone.

But an accident is likely going to happen at some point in time or an exposure is likely to happen. So just know your action plan and be prepared for when a reaction may occur and how you're going to handle that.

So just become familiar with that and be comfortable with your action plan.

Caroline: These tips are amazing and perfect and I would love for all our college students to listen to this podcast to hear this because even though we're talking newly diagnosed, I think they need to hear this.

That is such a great question to ask of a young adult, even in high school, right?

Charity: Yeah,

I agree with you. Because for a while the parents are carrying that responsibility or carrying that burden. And then to make sure that as you're transitioning that, that responsibility, that those,

those kids and those teenagers, those young adults are familiar with that as well.

Caroline: This is stellar, absolutely perfect information.

So now turning our attention a little over to the adults now. So for an adult who maybe just got diagnosed with food allergies, what practical tips do you have for them outside of the ones you just shared, which are absolutely fantastic.

But what would you recommend to them to help them adjust with confidence?

Charity: So the first thing I would say is if you are an adult,

learning that you have food allergies is just to make sure that you have the correct diagnosis,

that you're not self diagnosed with a food sensitivity kit or even by your primary care provider. They are wonderful and likely very well meaning. But even primary care providers or even general pediatricians,

sometimes there can be a lot of false positive diagnoses with food allergies, especially in those with eczema. I see a lot of false positives with food Sensitivity testing. So I would say an adult with food allergies, that is new onset.

Yes, there are new diagnoses. But make sure that you have a correct diagnosis from a board certified allergist so you're not living in fear or avoiding foods that you don't need to be avoiding.

So that would be my number one thing that I would mention.

But then to have a few close people around you that you can talk to, maybe in each circle, one or two at work, one or two in your family, one or two in your social circle that you can explain what your new diagnosis is,

maybe how you can eat safely, how to use medication should a reaction occur. Show them your devices so that you can have their support and have them backing you. Maybe they can give restaurant suggestions or food that might be brought into the workplace place so it's not you having to take that burden on.

And I think that might help you build your confidence as you're navigating this new diagnosis.

Caroline: Again, highly pragmatic tips that our listeners can just take and run with.

That is so important too, that you brought up making sure you have the right diagnosis.

I've met so many people that will tell me, oh, I have a shellfish allergy. The last time I had it, my mouth was itchy. But then they've never been to see an allergist and they've never sought out medically vetted resources, professional medical help.

It's stunning to me.

Charity: Yes, I think it's really important to have that correct diagnosis. I couldn't agree more.

Caroline: So now for those who've been managing food allergies for years, what are your best tips for staying on track and making sure that nothing important slips through the cracks? And you know, I asked this because I saw that with my own kids when they were in college and they completely forgot about calling manufacturers and they completely forgot about setting up annual appointments,

like just whoosh.

Charity: Yes, exactly. I think of those things and I have my young adult children and I was just having a conversation with one this weekend about medication that should be refrigerated and not put in the freezer and things like that.

Caroline, So I get it.

I think it's back to the basics.

One thing that really comes to mind about things not slipping through the cracks, and you just said that the most important thing would be to see your allergist each year to check in.

I think a lot of people may get discouraged if they have the same allergy or allergies and the testing keeps coming back the same and they think nothing's going to change,

but it may. But I think you really need to check in,

see if it's time for testing,

see if there might be food challenges that you could do to see if something may have changed. My one son, he was surprised at the age of 18 when all of a sudden his tree nut allergies all just almost disappeared out of nowhere.

We never expected that.

There are new therapies on the horizon and available.

So don't just discredit or think nothing's going to change. Check in and see if there's new treatments available that might be of interest to you or an option for you.

There are new epinephrine options available now within this last year, and there's a new, very, very exciting one on the horizon that is likely going to be available in early 2026.

If you don't check in, you won't know about those new options and again,

potential testing for you. Or maybe something has changed. But that's probably the biggest thing that comes to mind for me is checking with your allergist to make sure those things don't fall through the cracks.

Have there been new reactions or new concerns or have things changed for you?

Caroline: Those are so huge. And speaking of the epinephrine devices,

one of my son's childhood friends was visiting and the families got together and the family was surprised to hear that there are new devices and that there are options because they literally have not checked in the last, like, 15 years.

They were so shocked and so happy and excited, and I was like, how did you miss this? And I thought, wow. But if they're not going to their appointments and they haven't been in years,

and their regular doctors just writing the prescription, they have no idea what's been happening in the allergy world.

Charity: I think that's really easy to do for people.

You just get so used to your routine and that thinking nothing's going to change and you could miss out on really exciting opportunities.

Caroline: Really good tips. Excellent, excellent tips. So our time is actually coming to an end. That just went so fast. Way too fast.

Charity: Actually, it did go way too fast.

Caroline: It really did go fast. But before we say goodbye, is there anything else you want our listeners to hear from you?

Charity: Well, if you're listening to this podcast, you. You found a great resource and the library of podcasts that are available. I just love everything that comes out. I learned so much from the people that you have on and the resources that you have available.

But I would just say seek out great resources that are available. There's a lot of information online,

some wonderful and some not so wonderful and some that can be anxiety provoking and such. So just be careful of what you're finding online. But FACT is probably one of my just favorite organizations of all times in the allergy community.

It's empowering, it's encouraging, it's uplifting, it's so thorough. And so fact's website is just probably one of the best resources out there for information that you can provide to your schools, to grandparents when you have students going off to college.

Mental health for children and adults. So please check out FAACTS website,

check out their in person events that they hold.

We just had our FAACT summit in Chicago, which is just a phenomenal time of bringing the whole community together.

Experts,

it's for patients, it's for providers, it's for everyone. And you do not want to miss that. It takes effort to get to these events,

but you learn so much. In the summertime, there's a camp for kids.

The teens come and they're the counselors. And those teen spots fill up sometimes faster than the kids spots because those teens just build such a community and they do things in the evenings.

The parents get together.

So check out everything.

I always tell people everything that FAACT touches is just magic.

And it has just been such an uplifting and encouraging thing to our family. And I know my kids have been impacted so much from FACT over the years.

So that is one big takeaway, I'd say,

is seek out those resources.

If you need online resources, FAACT has online support groups.

There's one for college and high school families that you can seek out and maybe we can post those links in the podcast notes. So those are the things that I would just speak so highly of and encourage people to seek out.

Caroline: Thank you so much for those kind words.

Charity: I mean every one of them.

Caroline: And thank you for that. And I'm obviously wickedly biased, but I do agree. I mean, I've made some of the best friends from these types of events and things for the teens and things for the children.

And just meeting people like you who I know I could pick up the phone and say, hey, can you help me out with this? And I think that's what's so cool about this community is we're just all so together.

But thank you so much for your time and for sharing your knowledge and these well thought out, beautiful tips for everyone. So thank you so much, Charity.

Charity: I appreciate you having me. Thank you, Caroline.

Caroline: You're welcome.

Before we say goodbye today, I just want to say thank you one more time to ARS Pharma for their kind sponsorship of FAACT's Roundtable Podcast.

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