top of page
  • Writer's pictureMiriam Diaz-Gilbert

I No Longer Suffer From My Rare Disease: Eosinophilic Esophagitis




February 29, 2024 is Rare Disease Day. There are approximately 7,000 rare diseases affecting 1 in 10 Americans; that's about 20 to 30 million Americans. Between 1 and 5 people per 10,000 in the US suffer from eosinophilic esophagitis (EoE), a rare chronic autoimmune disease of the esophagus. I was one of them. For twenty-six years, I endured EoE. I've blogged about my EoE journey and nightmare.


I recently found this fatalistic position on the Mt. Sinai Hospital website:


"There is no cure and no specific treatment for eosinophilic esophagitis. Treatment involves managing your diet and taking medicines. If you test positive for food allergies, you may be told to avoid those foods. Or you may avoid all foods that are known to trigger this problem."



"Currently, there is no cure for eosinophilic esophagitis, making long‐term treatment necessary. Standard treatments include diets, stretching of the esophagus (dilation), and drugs such as corticosteroids, biological medications, and proton pump inhibitor medications."


I disagree. In this article, I will offer a bit of optimism and hope based on my personal journey with eosinophilic esophagitis and how I cured it with a very specific treatment I created. This treatment involved creating my own healthy diet, avoiding medicines, and eating anything I want as I have no food allergies.


If you were recently diagnosed with EoE or have suffered for many years, I feel your pain and know what you are enduring. My first food impaction episode occurred in 1996. I had many more. I'd take a bite of any type of food: meat, chicken, bread, cake, bagel, Singapore noodles, and more. The food would get lodged in my throat. I couldn't speak. I felt like I couldn't breathe, like I was dying.


During this twenty-six year period, I saw three GI doctors, one of them for almost twenty-years. I was told I had acid reflux and GERD. I thought that was odd because I never experienced either. I was told not to eat acidic foods such as orange juice and tomato sauce. I was told not to drink seltzer, caffeine, and alcohol. I was instructed to put bricks underneath the legs of my bed headboard to create an incline and to sleep elevated with a stack of pillows. I was instructed not to eat three hours before going to bed.


Countless endoscopies revealed esophageal inflammation, strictures, Schatzki's rings, and a hiatal hernia. I've had many dilations. All three doctors said I might have Barrett's esophagus, but they couldn't be definite. Biopsy after biopsy revealed abnormally high eosinophil counts from 40 to 100. A count of >15 is an EoE diagnosis.


I was prescribed PPIs (proton pump inhibitors) such as very expensive prescription famotidine (Pepcid). That didn't work. Then I was prescribed omeprazole (Prilosec). Upon reflection, I still don't comprehend why I was prescribed a medication to decrease acid in my perfectly healthy stomach. They were both equally bad. They never reduced my eosinophils, nor did they ever prevent future scary food impaction episodes. And worst of all, Prilosec depleted my body of vitamin B12, which my body can't afford to lose. I have myelopathy of the spinal cord due to severe B12 deficiency. My body does not produce enough natural B12 to create myelin sheath around my spinal cord. I've been on B12 injections for life since 2009.


On September 7, 2021, I experienced my most severe food impaction—a small piece of challah and a small piece of pork got lodged in my throat/esophagus. After six hours of retching every five- to ten- minutes like labor contractions, and spitting bile into a blue vomit bag in the emergency room filled with a sea of masked patients in the time of the pandemic, I underwent an endoscopy to push the bolus of food into my healthy stomach. I was admitted overnight for observation. Below is an endoscopy picture of the food impaction: a large food bolus consistent with ingested meat completely obstructing the lumen (the inside of my esophagus).



The endoscopy revealed mildly severe esophagitis, a normal stomach, and a normal duodenum.

A soft diet and PPIs was recommended. Biopsies revealed a count of 45 eosinophils. Also present were eosinophilic abscesses, hyperplasia, and lamina fibrosis.


My now third GI doctor couldn't tell if I had GERD, Barrett's esophagus, PPI-REE (proton pump inhibitor-responsive esophageal eosinophilia), EoE or overlap as BE and EoE can live together. He wasn't sure I had EoE.


He suggested I try fluticasone. When I asked what it was, he said it was a steroid in an inhaler form, I said absolutely not. Besides, I was already allergic to eleven medications. When I got home, I researched fluticasone and discovered it's prescribed to treat asthma and skin diseases, like eczema. I suffer from neither.


He then suggested I try the six-food elimination diet (SFED), which meant eliminating soy, eggs, dairy, wheat, tree nuts, and fish for eight weeks. I met virtually with a dietician who sent me the Oregon Clinic Diet for EoE, a menu, and a list of all food items I could eat to my heart's content and purchase in the supermarket.


Unfortunately, while on SFED, I had another food impaction episode on Oct 2. After I got home from a six-mile run, I heated leftover chickpea spaghetti with small pieces of chicken, food allowed on SFED.


After one bite, the food got lodged in my esophagus. Another scary food Impaction episode and a painful ride to the ER. Luckily, the impaction resolved Itself four hours later while sitting in the emergency room and holding a blue vomit bag. No emergency endoscopy was required. From then on, to prevent potential food impactions, my husband Jon puréed all SFED foods until my next endoscopy and biopsies at the end of October.


Unfortunately, SFED failed. The endoscopy revealed new findings I had not seen in previous reports: LA Grade C, Edema Grade 1, Rings Grade 2, and Furrows Grade 2, but my esophagus was otherwise normal. The biopsy, however, revealed an eosinophil count of 100.


Convinced that it was all the corn products and corn starch in many of the food ingredients I was allowed on SFED, I told my GI that I wanted to continue SFED, but this time I would eliminate everything corn. I had read in Matt Siegel's The Secret History of Food that corn, which comes in many forms including high fructose and makes that shiny wax on apples, has no nutritional value. My GI humored me, and I continued on SFED for six weeks but without corn.

After six more weeks on SFED, the endoscopy again revealed fibrosis, hyperplasia, and abscesses. The biopsy revealed an eosinophil count of 100.


Now, my GI wanted me to try a topical steroid. I said no. And then he offered a treatment I'd never been offered by any of my GI doctors. Unenthusiastically, he suggested the elemental diet. When I asked what it was, he said it was a liquid diet that smells awful and tastes worse. He added that this diet has a 95% success rate but a 20% compliance rate because it's a hard diet to stick to. On the elemental diet, I would not be allowed to eat or drink anything else.


The 95% success rate intrigued me. I welcomed the challenge. I'm a disciplined ultrarunner, always training and racing distances from 50 miles to over 100 miles to multi-day ultramarathons. I was sold. And for the next eight weeks, the Vivonex elemental diet was my new best friend. It took me about two weeks to acquire the taste and to no longer hold my nose while drinking it with a straw. I always felt full and never craved real food.



And voilà! The elemental diet worked! I saw the results of my endoscopy and biopsies in my patient portal. My esophagus was no longer inflamed. And there was no mention of Barrett's esophagus, strictures, or hiatal hernia, and all the other "findings" in my previous endoscopies and biopsies.


My esophagus was a nice normal, healthy organ. My doctor called me over a week later to say, 'You have zero eosinophils. Your esophagus is healed. You don't have EoE." When I asked how many of his patients with EoE he had recommended the elemental diet, he said that I was his first. That surprised me. Why wouldn't a doctor offer a treatment that has a 95% success rate when all other treatments have failed? Food for thought.


But now he needed to reintroduce foods to see which foods were my triggers. I began a new diet treatment of only fruits and vegetables.


For the next eight weeks, I ate all kinds of fruits and vegetables. I love both. I really enjoyed this diet. Everything we read about fruits and vegetables is always how healthy and nutritious they are. And I continued to drink the elemental diet through a straw and with crushed ice, seltzer, and a dash of sea salt.


Some of the delicious veggie dishes my husband whipped up.

But how shocked was I when, eight weeks later, my endoscopy and biopsies revealed a damaged and inflamed esophagus, a mention of Barrett's esophagus again, and an eosinophil count of 100. The so-called healthy fruits and vegetables did more harm than good.


Now my doctor wanted to reintroduce new foods every eight weeks. That meant more endoscopies. At the moment, I put my foot down. I told him no more food reintroduction. I told him I had a hunch. I told him I was convinced the cause of my food impactions and EoE were the chemicals in the foods I normally ate, in the foods allowed on SFED, in the fruits and vegetables of the food reintroduction phase, and apparently, in the foods I'd been eating my entire life.


I told my doctor that while I was on the fruits and vegetables diet, I researched the ingredients in the foods I was consuming on his prescribed diets, with the exception of the elemental diet, which healed and did not harm my esophagus. I was convinced the chemicals in all of these foods—preservatives, additives, and food coloring in foods, antibiotics, hormones, and steroids in poultry and meat, and pesticides and insecticides in fruits and vegetables were harmful to my esophagus, and the cause of my EoE and food impactions.


I told my doctor that I would get one more endoscopy and biopsy eight weeks from the start of my new self-imposed diet I call the Miriam Diet, as a diet like mine does not exist. I wanted to test my theory. I told him I was going to eliminate all of these chemicals, eat free-range eggs and chicken, grass-fed beef and pork, make my own food and bread, all free of chemicals, and continue to grow my vegetable garden, free of pesticides and insecticides. I read every label on every food item. Anything with a preservative, food coloring, etc. was left on the supermarket shelf.


Deliciously homemade healthy foods free of chemicals.

And guess what my endoscopy and biopsy revealed eight weeks later — up to 0 eosinophils! Abscesses, layering eosinophils, and hyperplasia were absent. I had a healthy, normal esophagus. No more EoE!


Doing my research, eliminating harmful chemicals, creating my own diet, and advocating for myself healed my esophagus. Twenty-six years after my first food impaction, countless endoscopies (over 30) and biopsies, and twelve months from the day of my scary food impaction on September 7, 2021, on September 6, 2022, I no longer suffered from eosinophilic esophagitis, a rare disease that many claim has no cure.


While my healing is anecdotal, it is proof that EoE is curable when chemicals, and not foods, are eliminated from the diet. It took me twenty-six years of unnecessary food impactions, and way too many endoscopies that put me at potential risk for infection, bleeding, and perforation every time the procedure and biopsies were performed.


Everyone’s EoE journey is different. There are different types of eosinophilic esophagitis. Some people suffer EoE from atopic allergies like asthma and eczema. Others suffer from EoE possibly caused by environmental allergens like pollens and mold. For most people, food allergies are the cause of their EoE.


Had I not taken control of my EoE treatment, I would not have uncovered what I call a fourth type of eosinophilic esophagitis. This one is caused by the chemicals in our food supply — preservatives, additives, food coloring, antibiotics, hormones, steroids, pesticides, and insecticides.


Doctors don’t have all the answers. But doctors have just as much to learn from their patients, if not more, as their patients have to learn from them. Doctors need to listen to their patients and their healing success stories. These successes should not be dismissed.


I have reached out to several GI doctors and a GI journal publication with my story of healing my EoE. I have been essentially ignored, but one pediatric GI doctor responded. He appeared more interested in looking to poke holes in my success, and in trying to convince me my diet is not practical.


I'm curious—what could potentially happen if 100 or more patients who suffer from EoE and food impactions, and whose treatments have failed, are willing to try the Miriam Diet.


I would add that my diet requires a lifestyle change. However, I have discovered that my diet is less expensive and healthier than outrageously priced treatments such as over-the-counter PPIs that are not covered by insurance, but that don't always work and almost always offer side effects. My diet and lifestyle change is less expensive than endoscopies and biopsies, even with health insurance coverage.


The cost of my endoscopies and biopsies, and all other hospital charges associated with them during a 12-month period from September 2021 to September 2022 totaled $27,194.50. Our insurance, which my husband and I pay for, paid $21,921.39. I paid $5,273.11. It's much more affordable and healthier to eliminate chemicals, to make and grow my own food, and to buy foods from verified organic vegetable, fruit, meat, and poultry farms. They do not harm my esophagus.


A word of caution regarding organic: I've learned that many so-called "organic" foods, fruits, and vegetables contain chemicals and are sprayed. The term organic is loosely used and is a marketing gimmick to charge unsuspecting consumers more money. Read every label carefully. Do your research.


Because the Vivonex elemental diet is an over-the-counter treatment, it is not covered by insurance. To date, I have paid over $2,500 for the Vivonex elemental diet that I purchase online and is delivered to my home. I continue to enjoy Vivonex with my diet.


I find it interesting that no mention or effort is made to test for damage and harm that preservatives, additives, food coloring, hormones, antibiotics, steroids, pesticides, and insecticides do to the digestive system and the esophagus, the organ that transports nourishment to our bodies. Skin tests to test food allergies exist, but I'm not aware of any tests that test for the harm that the chemicals in our food supply cause to our internal organs.


An adult's EoE journey and treatment may or may not differ from a child's EoE journey. Every patient, regardless of age, is unique and will choose a treatment option that works for them and that impacts their lifestyle the least.


If you suffer from eosinophilic esophagitis and food impaction episodes, be curious, do your research, be your own advocate, and take your eosinophils by the horns. Don’t suffer needlessly, but be willing to make sacrifices and lifestyle changes whenever and wherever possible.


I am happy to say that I have not had a food impaction episode since October 2021. As of September 2022, I have a healthy esophagus, up to zero eosinophils, and no longer suffer from EoE. My husband and I do not eat in restaurants. We make and pack our own meals during our travels everywhere, including the national parks. I make and bring my own food to fuel and hydrate with at my ultrarunning races. I am fortunate that my family and friends accommodate my dietary needs during holidays, celebrations, and get-togethers.


Enjoying a homemade picnic lunch on the road: chicken, beans, salad, and apple bread.

Everyone's rare disease journey is different. What works for some might not work for others. Do not give up. Take charge. Be your own advocate. I hope my rare disease journey and how I healed myself gives you hope.


Eosinophilic esophagitis is increasing worldwide. The positive feedback that I have received from readers and followers from the US and throughout the world, who suffer with EoE, has inspired me to write my next book. I've gotten requests for a cookbook. I am currently working on a food memoir and cookbook about my EoE journey and how I healed myself.


©2024


I am also the author of Come What May, I Want to Run: A Memoir of the Saving Grace of Ultrarunning in Overwhelming Times. You can order the book here from from the publisher, Amazon, Bookshop, or Barnes & Noble.



Follow me on Facebook, X, and Instagram

Subscribe to my YouTube Channel 


Comments


bottom of page