If you’re just joining us, don’t forget to take a look at Part 1 of this interview. In Part 1, we discussed Lori and Mary Jo Strobel, what eosinophilic esophagitis (EOE) is, and the mission of APFED. Today, we’re going to discuss Lori’s journey with EoE.

Lori’s Story

By the time Lori was just three years old, she was already a constant presence in her home kitchen. By the time she turned nine years old, she was cooking family dinners every night after she came home from school. She laughs as she says:

“Willingly. I did that willingly. I was just absolutely obsessed with food; I even used to read cookbooks for fun.”

When Lori was twelve years old, she learned cake decorating and how to bake. Her weekends would be spent crafting the perfect cakes for her loved ones. In college, she would “shop” at the dining hall, picking out the perfect ingredients before heading back to her dorm room to cook. She would create delicious meals like chicken cordon bleu on a hot plate, the smells drawing people in until she was holding dinner parties on her dorm room floor. By 22 years old, she launched her own restaurant. Eventually, she transitioned to catering for the film industry and working as a personal chef. Then, in 2005, Lori moved to North Carolina, bringing her personal chef business with her. So it’s no secret that food has been an integral part of Lori’s life:

“To me, food is everything. It’s how my family would get together for fun. It nourishes and comforts us. Food has always tied me to other people socially. Fast-forward to having a disease where I can’t eat much. It feels abnormal.”

Just one year after moving back to North Carolina, Lori began experiencing some weird issues. In particular, she experienced difficulty swallowing. She thought maybe she was eating too fast or taking bites that were too big.

It was yogurt – and her inability to swallow it one morning – which finally brought her to the doctor.

The Dual Eosinophilic Esophagitis Diagnosis

After visiting her first doctor, Lori received her first diagnosis of eosinophilic esophagitis (EoE). The doctor provided Lori with medicine and told her that, after taking the medicine, the EoE would go away. At the time, she also had her esophagus dilated, which provided some relief. When she finished her medication, Lori stopped thinking about EoE; after all, the doctor said that it was gone.

When her symptoms came back more severely after another year or so, Lori visited another doctor who once again gave her a diagnosis of eosinophilic esophagitis. Lori explains:

“I told him that I had already had EoE a few years ago and he looked at me and said, ‘No, you’ve had it this whole time.’ He told me that it was chronic and incurable. I couldn’t understand why my first doctor hadn’t told me that. Maybe he thought I understood and I didn’t, or maybe he wasn’t that informed about EoE, but it was definitely a huge shock.”

Lori was stunned but knew that she needed to take action. So she began asking her doctor questions about her prognosis, what to expect, long-term issues, and any studies. But again, she found herself shocked as her doctor rolled his eyes and told her to relax. She says:

“He looked at me and just said, ‘Oh, you’re one of those patients. I’m your doctor. Just listen to what I’m telling you.’ Having been told my entire life to listen to what the doctor says, it’s incredibly frustrating when he wouldn’t answer my – what I thought were pretty expected – questions. He told me it was rare and new, but didn’t want to give me any information?”

At the time, Lori had been experiencing a lot of chest pain and inflammation. She shares that it can be difficult to be your best advocate when you’re not feeling well, but that it is crucial to do what you need to do for your own betterment. So Lori asked if she could have a referral to another doctor that better suited her needs.

Lori was referred to a specialist in 2010, whom she still sees today. By the time she visited him, she was frustrated at the lack of information around EoE. She laughs:

“I kept asking Jeeves and the search would just show ERROR. When I finally visited this doctor, he explained my condition in ways that I could understand it. We did standard treatment protocols back then, such as PPI, but I didn’t have a lot of symptom relief. I did bariatric swallowing tests and allergy testing, but a lot of this was in real time as the medical community was still figuring EoE out.”

Eventually, Lori was placed on a steroid treatment that helped relieve her symptoms – but then her insurance declined coverage starting in 2012. Soon after, she began an elimination diet to see if it could help.

Elimination Diets

Being on the front end of treatments and research, Lori explains that there were a few different approaches to the elimination diet when she began it. First, she took out dairy and gluten, two common eosinophilic esophagitis triggers. But neither of these exclusions placed her into remission. Next, she took out eggs – and then more and more foods. By 2014, nothing was working, so Lori decided to only eat chicken, sweet potatoes, blackberries, spinach, kale, and lettuce. She figured that doing her own elimination diet could help her nail down where her reactions were coming from. After eight weeks, Lori was in remission. But then she had to begin adding food back to her diet to see what she could eat and what she could not:

“I passed fish and shellfish. I failed pork, nuts and nut-milks, all milks including cow, goat and sheep, all eggs, and rice. In fact, rice is one of my worst triggers. I just finished my last food trial on December 16, 2021. I’m in remission now but will keep following up with my doctor.”

Her experience has empowered Lori to work towards making a change for others. First, she is always willing to have conversations about EoE, take part in trials or research, or engage in organizational advocacy efforts. She is also working with a registered dietitian to potentially co-author a cookbook on elimination diet survival. Lori explains that this is not necessarily just a recipe book, as:

“Your lifestyle has to change if you’re going to change your diet to be gluten-free, dairy-free, soy-free. You have to learn how to read labels and how to cook everything. I would be rich if I could be compensated for the amount of times it takes to read labels in grocery stores because there’s hidden rice, soy, egg, and all sorts of things. Many people don’t know the difference between fructose and sucrose, or ‘natural flavors,’ or caramel color. If people don’t know what these ingredients are they could eat foods that are triggers. I know how to work around tough diets so I’m hoping that this e-cookbook could be helpful for not just recipes ideas, but how to navigate the world of dietary restrictions.”

Doing the Work: An Advocacy Mission

In terms of advocacy, Lori attempts to get involved in as many ways as she can. She is a member of CURED and APFED, helps out online, and participates in speaking engagements to educate on what EoE is like from a patient perspective. One thing she shares for patients and doctors is to remember that every journey is different:

“I’ve done a lot of the work, participated in any study I qualify for, and have given lots of tissue and blood. But I would never tell anybody to do what I do. Since being diagnosed, two of my neighbors, my best friend, and a few other people I know have all been diagnosed. Some have eliminated gluten and they’re in remission; others use steroids or PPIs. There’s an acceptance that EoE affects everyone differently.”

Lori has also played a role in helping to build the EGID Partners database, an online cohort of patients with eosinophilic gastrointestinal diseases. This database, which comprises of around 474 people so far, helps to guide and advance research. She reaches out to patients and caregivers to encourage them to participate in the surveys which help give a voice to the EGID community.

Join us soon for Part 3, where we’ll discuss Dupixent, eosinophilic esophagitis myths, and final advice from Lori and Mary Jo.