Patti Johnson
Patti’s Journey with EoE
Patti's journey with EoE began long before her initial diagnosis. From the age of 12, Patti was under the care of an allergist and was plagued by recurring tonsillitis, pneumonia, ear infections and sinus operations. Patti’s allergies included mold, dust, cats, dogs and birch trees, allergies that are so severe Patti went into anaphylaxis shock from taking allergy shots.
Allergy shots are regular injections over a certain period — generally around three to five years — to stop or reduce allergy attacks. Allergy shots are a form of treatment called immunotherapy. Each allergy shot contains a tiny amount of the specific substance or substances that trigger your allergic reactions.
Anaphylaxis is a severe, potentially life-threatening reaction to allergens. Symptoms include a skin rash, nausea, vomiting, difficulty breathing, and shock.
Patti was 38 years old when food began sticking in her throat. For Patti, this felt like having a heart attack as it was accompanied by severe chest pain. After the sixth event in under a year, she became so concerned that when she passed a gastroenterologist colleague in the hallway, she stopped him to ask his opinion. He initially thought it was Schatzki ring (also known as steakhouse syndrome), an esophageal condition which causes certain foods to get stuck in the throat.
Steakhouse syndrome or Schatzki ring is when food impaction of the esophagus occurs after eating food, especially meat, without adequate chewing. Symptoms cay include chest pain, drooling, difficulty swallowing, coughing, and choking.
He carried out a procedure to dilate her throat. However, when he examined Patti, he found that she was completely swollen the entire way down her esophagus. He realized it was not Schatzki ring as he had initially thought. He ran tests, including biopsies, and confirmed that she had EoE.
At this point, the diagnosis of EoE was relatively new and there was limited information available about the diseases and how to treat it. She was put on medication to decrease the swelling and a proton pump inhibitor to decrease her acid reflux. Patti’s main concern was taking medication, particularly the possible side effects.
Proton pump inhibitors are medications with the purpose of reducing stomach acid production.
After Patti’s formal diagnosis, her allergist (a doctor who specializes in the diagnosis and treatment of allergies) put her on an elimination diet, which involved eliminating wheat, dairy, eggs, soy, fish, seafood, nuts, corn, and peanuts, and then reintroducing them after three weeks. The results showed that Patti was allergic to corn, which she soon discovered is in many foods—even eating chicken or beef from cows fed with corn could cause her problems. Years later Patti discovered that corn was even in her allergy medicines.
When Patti eliminated corn from her diet, she took an important first step in managing her health, but the full extent of her allergies was yet to be determined and her struggle with symptoms continued.
A New Chapter
In 2017 Patti was hospitalized for 11 days with influenza pneumonia. This was a crucial turning point. Her doctor explained that when people with allergies are constantly exposed to allergens, their immune system declines, making them more susceptible to illnesses. With Patti’s EoE possibly out of control, and with her original allergist retired, the doctor suggested she see another allergist. Patti was concerned but in her search she found Dr. Alaaddin Kandeel.
Patti was immediately impressed with how knowledgeable he was about EoE, and surprised with the amount of time he spent with her to develop a plan to improve her health and quality of life.
He scheduled an esophagogastroduodenoscopy (EGD) to examine her esophagus, stomach and duodenum. The EGD results showed that her eosinophil count was “off the chart”. When he told her that she needed to do an elimination diet again, Patti couldn’t help but feel cynical, “Oh, great here we go again!”
Dr Kandeel explained how this elimination diet was going to be stricter. He also did a skin test highlighting additional foods as potential triggers and warned of the role environmental factors can play.
In only two and a half weeks of the elimination diet, Patti’s sinuses greatly improved; she could breathe again and no longer needed her inhaler. And after following this new restricted diet for three months, Patti had another EGD. The eosinophil count had decreased to a healthy factor.
The difference in how well Patti felt and her increased energy levels were transformational. Patti found new ways to relax which included yoga and quilting. She became an avid journal writer which helps her monitor health changes and plot reactions.
Armed with vital information about her allergy footprint and a more confident understanding of EoE, Patti has found her new normal and integrated this new way of living and eating into her family life.
A Drive to Support Others
Patti knew the challenges of home cooking well, especially for people with allergies. This was the catalyst for writing her own cookbook. Previously, a cookbook that supports home cooking while eliminating the top eight food allergies (milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat and soybeans) plus corn did not exist. To create the recipes for her EoE-dedicated cookbook, Cooking with EoE, Patti drew on inspiration from many others she has read over the years as well as her own extensive research into food and allergies.
While every EoE patient has different preferences, Patti’s cookbook has something for everyone. She also recognized the importance of including recipes for the whole family, like spaghetti, but with rice noodles—after all, food is better when enjoyed with friends and family!
Initially Patti thought only her family and close friends would buy the book. However, the response from the EoE community has been overwhelming and sales have already exceeded Patti’s expectations. The heartfelt comments and feedback from other people with EoE have been incredible, and Patti was relieved to find a community that experiences the same struggles with food. She has gained a great sense of achievement in being able to help this community through her recipes.
“Although everyone is on their own individual journey and has different allergies and reactions, there are a lot of shared experiences with many ways we can support each other through this commonality.”
Patti hopes that her cookbook will help others with EoE to regain confidence in the kitchen and inspire their own culinary creativity. Her motivation has been to inspire people in the global EoE community, to restart their love affair with food and cook up a storm in their own kitchens.
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