Ep. 261: Life of the EGID Patient

Just like with food allergies, there are other conditions where avoiding certain foods is essential. One of those is Eosinophilic Gastrointestinal Disease, or EGID. To help us better understand this complex condition, we’re joined today by Melissa Sauter—an advocate, parent, and Founder of Eosinophilic Parents of Utah. Melissa brings both personal experience and deep knowledge, and her positive outlook will leave you not only inspired but also better informed about life with EGID.

Resources to keep you in the know:

• Eosinophilic Patients of Utah Facebook Group
• FAACT's Related Conditions and Disorders Associated with Food Allergy
• American Partnership for Eosinophilic Disorders (APFED)
• Campaign for Urging Research for Eosinophilic Disease Foundation (CURED)

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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 FAACTS 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 advocate and the founder of the Grateful Foodie Blog. And I am FAACT's Vice President of Community Relations.

Before we start today, I just want to pause for just a moment to say thank you to Takeda for being a kind sponsor of FAACT's Roundtable podcast. And please note, today's guest was not sponsored or paid by Takeda to participate in this specific podcast.

Welcome Melissa, to FAACT's Roundtable Podcast. I'm just so delighted to have you here. You are just one of those members of the food allergy community that are just so warm and kind and intelligent and you just do a lot.

But when someone meets you, they feel like they've known you forever and I just know everyone's going to feel this today.

Melissa: Oh, you are so kind. Thank you for those words and my pleasure to be here today.

Caroline: Thank you. We know you're so busy,

so now let's get to know you better.

Can you share your family's journey and then your inspiration to become a community leader?

You are involved in a lot of things, so we would love to dig into that just a little bit.

Melissa: Sure. I knew very, very little about the allergy world until I had my first child. My daughter, who is almost 16,

started having some health issues shortly after she was born. She was throwing up many, many, many times a day in pain and arching her back as an infant and just crying.

And there was blood in her diapers and blood in her vomit. And I, of course I took her in and the pediat patted my arm and said, you're a first time mom.

Babies throw up.

And I was like, no, no, no, this is not spit up. This is pain. This is a problem.

We went through all kinds of different testing and actually moved to a different state during that time and connected with the right physicians who were on the right track. And at nine months old then she was scoped and diagnosed with eosinophilic diseases from her esophagus all the way through her colonial.

So when she got closer to 1 years old then we did allergy testing and learned that she also had ige mediated food allergies in addition to multiple foods that were triggering her eosinophilic disorders.

During that time, I was nursing and I had eliminated so many foods from my diet. I was eating rice, pears, and apples. So I was extremely malnourished.

My hair is falling out, I weighed a hundred pounds. And I'm nursing this baby who didn't tolerate any formulas or anything like that. So once we finally had a diagnosis of the eosinophilic disorders, then she was able to get put on an amino acid based formula which kind of saved both of our lives.

I was able to start getting adequate nutrition again and so was she. That was a really,

really big step and I had so many things to learn at that time.

Caroline: That sounded like a very scary time.

Melissa: Yeah, I mean, it was. It was definitely a scary time. There were so many unknowns and when your child has multiple rare diseases, then it's not the first thing that everyone is looking for,

so it definitely takes some time. So, yeah. She was scoped and diagnosed at nine months old.

I just wanted to learn everything that I could. I had no idea what any of this was. I was just starved for knowledge. And I learned quickly that I needed to be well informed so that I could effectively advocate for her.

So I started attending conferences and doing research and. And learning everything that I could.

When she was 2, then we moved from Texas to another state and I met some people in the community who had some similar experiences and decided that we needed an online presence to try and connect all of these eosinophilic families.

And so I came up with a group called Eosinophilic Patients of Utah. And we have a group for parents of kids with eosinophilic disorders and also a group for adults.

And part of that was to share information and to connect with others who understood this crazy life.

Caroline: And I think that's so common when you meet a community leader in this realm, that the need for information was at the start of it, and then they just took the ball and ran.

Melissa: There's nothing quite like feeling included and feeling understood and just you. You don't meet people that their kids are allergic to food and you literally are formula fed and adding in one food at a time and have to go through all of these scopes and biopsies to figure out if it's safe for their bodies and whatnot.

And yeah, it was just. It was a really crazy time. And it was.

It was neat to try and meet Others in the community, we could get together and have non food events and,

and support each other and share knowledge when one of us was able to attend conferences and such.

And it's just, it's been, it's been really helpful.

Caroline: That's exciting. And so now you did found a special group and so do you mind talking about the group you founded and again, just what was your experience when everyone came together and what does this group do now?

Melissa: So this group started in 2012 mostly on online and then we started figuring out how to get together a few times a year. We have about 250 members now in my area and we have events in person a couple of times a year and they're always non food events.

Last year we got to go to a laser show at the planetarium and this fall we're going to the aquarium. So we find a place to go and meet up, just have a normal experience but there's, there's not food involved at all.

And it's been really inspiring to see these kids meet other kids who understand and they don't have to explain their, their health issues or their dietary restrictions.

And I think that just the smile on their faces of being like, oh, they, they get it, they get my life is, is really rewarding well.

Caroline: And I think that's what's so magical. I know that sounds like such a interesting word to use, magical,

but, but there is this something that is so heartfelt and so important when you meet someone who's like you and, and they understand you and they don't have to say a word, they just look at you and you know that they know and that you know that they understand and that you are a version of normal.

It's so amazing.

Melissa: Absolutely. Absolutely. Like nothing can take the place of feeling accepted and included.

Caroline: And the name of the group for listeners, in case they missed it in the opening is the Eosinophilic Parents of Utah. And I believe the group is still running right now, correct?

Melissa: Yeah, it is. Definitely is.

Caroline: So I'll make sure on the show notes I have the link to the group too. So if anyone's living in that area and want to join, there we go.

Melissa: Perfect. Thank you.

Caroline: So now let's dive a little bit deeper into EoE and EGID. If you don't mind explaining what those two diseases are and what those acronyms acronyms mean and then what your family deals with.

Melissa: Sure. So eosinophils are a type of white blood cell and they're really important to our immune system. They help us fight off infections like parasites and that sort of thing.

But when there's too many eosinophils in the wrong areas,

then they can cause tissue damage and organ damage and that sort of thing. So the most common eosinophilic disorder is in the esophagus. It's called eosinophilic esophagitis or eoe.

And that is definitely the one that you hear about the most. Most people have that.

What I didn't mention is when I had my second child,

then he started reacting right after birth and was scoped at 4 months old and diagnosed with eosinophilic colitis.

So I have two children with scope severe eosinophilic disorders.

And so this has become a focus of our family because we had to navigate life without food.

When your kids, friends are all toddlers and they're walking around with their little cups of goldfish and you have to be really, really careful about what your children can eat and candy and your kids are primarily formula fed, then it's, it's tricky,

tricky to try and keep everyone safe and try and figure out how to be included and have normal childhood experiences when you also need them to be safe. Because obviously keeping your kids safe is your first priority after keeping them nourished.

It's crazy. You have so much to learn and life is just very different than you expected it would be. And you don't go to restaurants and you don't celebrate birthday parties with cake and you do a lot of different things.

You have to become very creative.

And I think that's one thing that's so important in this community is you meet other people that have also figured out how to be creative and you can brainstorm and get ideas from each other and find different ways to include and celebrate and help your loved one feel special without food.

Caroline: Interesting what you just said. When my son was first diagnosed with food allergies,

the allergist said to me, and it was actually during a food allergy support group meeting that they had a support group out of this practice. And it was the first meeting I attended and I introduced myself and then the allergist said to me, you know what I'm going to diagnose and I'm going to give you medical information,

but the only way you're going to learn about this condition and how to live with it is from the people in this room.

Melissa: Oh, wow. Yeah.

Caroline: And I just thought those words were incredible. And that's exactly what happened. I learned from amazing people. So what you just Said resonated resonates so much. And I just applaud it.

It is so true. You talk to people who've been there and they've found something that worked and maybe didn't work and you get those conversations going and you get that exchange going.

And it's powerful.

It really is.

Melissa: And it's so necessary because no one wants to feel alone in this.

I don't think I explained what EGID is. EGID stands for eosinophilic gastrointestinal disorder, and that's any eosinophilic disease.

These diseases are diagnosed on where the high number of eosinophils are found. And so if it's in the esophagus, it's EoE or eosinophilic esophagitis, it fits in the colon, it's eosinophilic colitis.

So that's just a way to that's differentiate the area that is having the problem.

Caroline: That's a great example. So now can you give us a little glimpse into what a typical day looks like? And we'll say EGID, because that's what your family's dealing with. But what does a typical day look like?

Melissa: Typical day at this point, where my kids are now teenagers, both of them are still primarily formula fed. They get most of their nutrition from amino acid based formula with this disease.

Then they react to food proteins and so amino acids are broken down proteins so that their body can absorb it and get the nutrition that they need. A normal day involves a lot of planning.

We don't do anything spontaneous because we can't get food on the go. We have to take formula with us or safe foods with us.

And so it's mostly planning. There's a huge spectrum with eosinophilic disorders. Some people only have to avoid one food. Or some people like my children, it's easier to just list the few safe foods that they have that they can eat because it is so very limited.

Another thing that,

that you look at is this is definitely an invisible illness.

You don't know what symptoms are going on.

Are you feeling okay? Are you nauseous? Are you fatigued? Like, there's a lot of different side effects with this disease. And so you kind of have to evaluate how everyone is feeling and are we meeting our nutritional goals and what do we need to adjust and do we need extra formula because you have a soccer game and you'll burn more energy or things like that.

So we just plan ahead and try and prepare and have Safe snacks and safe formula for the day because it has to be with us.

Caroline: It sounds like there's a lot of strategizing taking place because you mentioned you have soccer and you have a lot of athletics and things where you're burning a lot of energy, then you're going to strategize the day.

Melissa: Yeah, definitely. One of my children is a healthy weight and the other is definitely underweight. With him especially, we need to be really careful about watching nutritional intake and calories burned and such because we're trying to help him gain some weight here and now.

Caroline: Do you need to work with a registered dietitian nutritionist or is this something you work with your doctor?

Melissa: Yeah, we definitely have a fantastic registered dietitian at Cincinnati Children's that helps us and can offer some suggestions and it can be definitely helpful.

So I have met with some other dietitians where I felt like I spend most of the session educating them because they have never dealt with people with such limited diets.

They're like, wait, you can't do any of my 50 ideas. And it's like, yeah, I know, I'm sorry. It is important sometimes if you're extremely limited to go to some of these fantastic clinics that they have experience with your situation.

Caroline: Now when it comes to the day to day life, what challenges stand out the most to you and then how have you found ways to manage them? Like is there any type of situation or challenge that really was tough but you figured it out?

Melissa: Well, I think when the kids were younger it was definitely birthday parties because they were so cake and ice cream oriented and, or you know, let's have a pizza party and then we'll have cake and ice cream and, and things like that.

So we were extremely fortunate to have a few friends that were just amazing and they would make their birthday party safe for my kids and then invite them and you're just so grateful and have lifelong friends.

But at this stage in their lives, I think that social situations are tricky because when you have teenagers, especially teenage boys, then they like a lot of food.

And some of our kids friends are really, really thoughtful and very aware and that sort of thing. And others are worried about what they want to do and you meet all types.

And I think that for us it's been easier to host and to plan things. Not during meal times like hey, how about you eat dinner and then you come over and,

and hang out and,

and do an activity and we'll have some safe snacks or things like that. But timing can definitely make a difference.

Social Activities are hard. We've also tried to figure out ways to spend time together as a family. Like, rather than a family dinner every night, then we'll have, like a family game and everyone has, you know, different things that they tolerate.

And that's just not the focus of our day. But we still want to spend 20 minutes together. So we'll do a family game night or things like that.

Caroline: That really sounds like you are the master of the positive redirect.

Instead of it being the family dinner, we're just gonna do family games. When we do family games. My kids are in their 20s now. It's so fun because that's where a lot of talking is happening.

And you're right, the same amount of talking over dinner is happening over the games.

Melissa: I think that at this point, we just realize everyone has their own thing that they need to do to stay safe.

You know, rather than being upset about what tradition looks like, what our expectations were, then let's create our own traditions and set new expectations and find a way that everyone can be safe and everyone can be included and have a good time and create some fun memories.

Caroline: That is just brilliant.

This went really, really fast. That's what I think I say in every single podcast, because I just want to keep talking, but. But it really did go fast. Before we say goodbye today, is there anything else that you want our listeners to hear from you?

Melissa: I think just that life without food is a reality for some and just try to make the most of it, keep learning and support others.

And people with invisible illnesses definitely appreciate when you validate that this is something that they're really dealing with and that they can count on your support.

And it's just having a good friend is. Is definitely not overrated.

Caroline: Thank you so much for. For your time. And then those parting words of wisdom and then most of all, your knowledge and your real life experience that really helps all of us understand better.

So if we're not dealing with these conditions, we can support people that have them or people who might be experiencing this now. They have this really lovely opportunity to engage with you and connect.

And so we just thank you so much for that. So thank you for being here today.

Melissa: Well, thank you so much for having me and for taking the time to learn more about this and raising awareness and educating your listeners. So I very much appreciate it. Thank you.

Caroline: You're very welcome.

Before we say goodbye today, I just want to pause one more time to say thank you to Takeda for being a kind sponsor of FAACT's Roundtable podcast. And please note that today's guest was not sponsored or paid by Takeda to participate in this specific podcast.

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Have a great day and always be kind to one another. Another.