Portal de Periódicos da CAPES

Becoming the Patient

2023; Elsevier BV; Volume: 165; Issue: 2 Linguagem: Inglês

10.1053/j.gastro.2023.04.002

1528-0012

Jenny Huang,

Eosinophilic Esophagitis

In the summer of 2021, I was diagnosed with eosinophilic gastritis (EoG) after months of symptoms that I attributed to stress and the rigors of residency. At the time, I was a third-year internal medicine resident applying for an allergy fellowship and I had not heard of the eosinophilic gastrointestinal disorders (EGIDs) outside of eosinophilic esophagitis (EoE). I made an appointment with an allergist who happened to be the assistant program director for the allergy fellowship program to which I was actively applying, a uniquely interesting situation that I did not think I would ever find myself in. He was the first person to mention EGID to me, but also cautioned that the condition is quite rare. I met with my gastroenterologist a few days later. As a trainee, it’s strange to see a physician because of how you have to open yourself up, and if you need a GI doctor, that occurs in the most literal sense. After my initial consultation, my GI doctor mentioned the 6-food elimination diet: milk, wheat, egg, soy, seafood, nuts. “Think about it,” he said, “We’ll see what we find on EGD and colonoscopy.” I did not think about the elimination diet. I did, however, think about the box of bowel prep in my hands. A few weeks later, I lay on the hospital gurney in the one-size-fits-none gown, waiting for my scopes. In what seemed to be the blink of an eye, I was done. A week later, I got a telephone call from a local number. It was Monday morning and the last day of my vacation. It was my GI doctor. I don’t remember the exact words he said to me, but I remember the gist: You have EoG, here are the treatment options. He went through the elimination diet with me, and offered prednisone and oral steroids. What did I want? I knew I did not want steroids, so I chose the elimination diet. I had no idea what I was getting into. As a physician, I have recommended treatment options to patients countless times: Take this medication 4 times a day for 10 days, do moderate exercise for 150 minutes a week, try a Mediterranean diet. However, I can say I am guilty of not understanding how difficult these recommendations can be for someone who is busy, working several jobs, or just does not have the means to obtain healthier food. I started looking at nutrition labels of food I had at home and there was basically nothing I could eat. Food is a vital part of life; it gives us energy and sustenance, and to have the ease of eating taken away and morphed into a chore was terrible. My boyfriend and I went to Trader Joe’s that first day and got a crash course in trying to decipher nutrition labels. I almost had a meltdown in the snack aisle. Suddenly, my usual routine was blown up and my favorite restaurants were inaccessible. I could no longer have a Saturday morning donut or get a burger with my friends. For me an Asian person, all of the food I loved and was used to eating suddenly contained things I could not have. My world was turned upside down. I suddenly couldn’t have my parents’ home cooked tofu soup or stir fry, their way of showing love and care. I couldn’t eat birthday cake. My boyfriend and I ended up making all my meals at home and rarely went out to eat. It was too difficult to ask restaurants what foods were safe while following this extremely restrictive diet. I learned that nearly everything has one of the 6 foods in it. When I went out with friends or colleagues, my first thought was not excitement, but rather, will there be anything I can eat? Luckily, I found a few safe restaurants that became staples. I had the opportunity to attend the American College of Gastroenterology annual meeting that fall and attended a talk given by the world’s experts on EGIDs. During the question-and-answer period, my boyfriend asked the questions I was too afraid to ask: What is the natural history of this disorder? Does mucosal involvement lead to deeper disease? How do you monitor the disease? What is the goal of remission, is it endoscopic, histologic, or symptomatic improvement? We never said out loud what we were really trying to ask. Hiding behind the scientific questions were the real questions of what was going to happen to me. Would I be able to continue the career I worked so hard for? Would I be okay? They did not know the answer; no one is sure of the natural history of EoG. As a patient, that is terrifying to hear; you desperately want to know if you are going to be okay, but no one can predict the future. One of the last nights of the conference, I found myself having a meal in a restaurant with members of the gastroenterology department in attendance. I happened to be sitting next to my own GI doctor. There was a preset menu for the meal, but a quick glance told me that there was no way this meal was going to fit my diet. Caprese salad, pasta, and parmesan chicken followed by ice cream. I asked the waiter if he could help me find a meal I could have without milk, wheat, egg, soy, and seafood. He looked at me like I had grown a second head and went to talk to the chef. My doctor turned to me and said, “Wow, I’ve never had a meal with someone on the elimination diet, I did not realize how hard it was.” That moment has stayed with me. As physicians, we sometimes recommend treatments or interventions that turn our patients’ lives upside down without knowing it. I am certainly guilty of this. I had no idea of the consequences of an elimination diet until I went through it, but now I know. Thankfully, I am doing well now. I have gotten used to avoiding milk, cheese, and ice cream. I am an allergy fellow who has the opportunity to see and counsel patients on this disease that has personally affected me so deeply. Although I closely follow the rapidly developing research being done in this field, what’s most memorable to me are the faces and stories of those who are going through the process of diagnosis and wondering what the future holds. One of the greatest resources I had as a patient during my treatment was access to a knowledgeable dietician who helped me navigate through the elimination diet maze. She provided me with resources on safe brands and alternatives to the foods I was avoiding. In addition to a list of foods to avoid, I recommend providing patients with a list of foods that are safe so that the diet is not surrounded by fear and hesitancy. Although the elimination diet for EGIDs is not the same as for IgE-mediated food allergies, I found food allergy resources to be extremely helpful as I was learning about what foods to avoid. The Food Allergy Research & Education (FARE) website has helpful resources and tips for patients. For patients receiving the diagnosis, I encourage them to take time to process and share with loved ones. Some of the hardest parts about being diagnosed are the changes to everyday life and the emotional component of the disease. I found the support of my family to be invaluable as I was learning how to cope. I encourage patients to do their own research and reading but also to follow up closely with their doctor to ask questions and develop a plan together that fits their lifestyle. Campaign Urging Research for Eosinophilic Disease (CURED) and the American Partnership for Eosinophilic Disorders (APFED) are patient advocacy groups that have resources for patients who would like to learn more. The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) consists of researchers who are dedicated to investigating EGIDs, I encourage patients to learn about current research and what future treatments may look like. I challenge those who treat patients with EoG, EoE, or other EGID to try the elimination diet for a week. Walk a couple of steps in our shoes and see what it is like. Knowing the feeling of helplessness and frustration will help you to be able to empathize with your patients and help them make an informed decision. They will appreciate you all the more for it.