When Nothing Else Worked, The Elemental Diet Healed My Eosinophilic Esophagitis (EOE).
Updated: Jan 4
Now, the reintroduction of foods beginning with fruits and vegetables has begun.
I suffered my first food impaction episode in May 1996. The best a GI doctor could do was to tell me that I had GERD and acid reflux even though I never experienced heartburn or reflux. He told me to stop eating acidic foods like tomatoes, tomato sauce, and oranges, and caffeine, chocolate, mint, and carbonated drinks. He told me to sleep on an incline. This would help to limit the amount of acid reflux that would go from my stomach to my esophagus. My husband Jon put two bricks under the headboard legs of our bed so, I could sleep with my head elevated.
I'd have scary episodes of stridor and aspiration that woke me up from my sleep. I couldn't breathe and gasped for air. I felt like I was dying. My husband would talk me through it until the episode passed. These incidents happened often. One time I had a sudden, unexpected loud stridor experience as I gasped for air while sitting in the audience during my son's school play - West Side Story. Another time I had an episode after taking a sip of water while proctoring an exam with a colleague in a lecture hall with over 200 students.
I had an esophageal motility test that involved a wire inserted up my nose, down my esophagus and into my stomach for 24 hours. The test indicated I might have scleroderma. The scleroderma doctor said I did not and told me to eat whatever I wanted.
I searched for a top GI doctor at a top teaching hospital and saw him for over 20 years. I had video swallow tests to see how safely and affectively I swallowed. I continued to have several food impaction episodes and endoscopies every two years. I had an emergency endoscopy on Christmas Eve 2015 when Chinese food got lodged in my throat while we were eating dinner at home.
My eosinophils (white blood cells) were abnormally high. By now I had already been diagnosed with eosinophilic esophagitis (EoE), a rare autoimmune disease of the esophagus. But the doctor could not explain to me why or the cause. It seemed nobody knew.
I was prescribed famotidine (Pepcid), a proton-pump inhibitor (PPI). That didn't work. Then I was prescribed over-the-counter Prilosec, another PPI. That didn't work; instead, it depleted my body of vitamin B12 which I cannot afford as I have myelopathy of the spinal cord due to severe B12 deficiency and am on B12 injections for life.
I continued to have frightening food impaction episodes that resolved themselves. However, in September 2021, I had a severe food impaction episode after taking a small bite of pork. It was the most frightening episode. I retched non-stop in the car as my husband drove me to the ER of another top teaching hospital and the home of my new GI doctor.
After a 6-hour wait in the ER during the pandemic and more retching of small food particles into a barf bag every 5-10 minutes, I was taken to the OR for an endoscopy to push the bolus of food jammed in my upper esophagus down into my stomach, and admitted overnight. Once again, I was told I had a very damaged esophagus. It was inflamed and drowning in eosinophils that should be in my bone marrow. My EoE had gotten worse. The biopsies results also indicated early Barrett's Esophagus, a precursor to esophageal cancer.
There is no FDA-approved treatment for EoE. This GI doctor wanted to prescribe fluticasone, an inhaler that is prescribed to treat adults and children with asthma to prevent wheezing, coughing, and difficulty breathing. This drug is used off label to treat EoE. With only a 40% success rate, and considering I don't have asthma, and have bad reactions to 11 pharmaceuticals, including severe anaphylactic shock with CT scan contrast, feeling like I'm burning alive with Lasix, and unable to dress myself for eight months after suffering Cipro toxicity in 2012, fluticasone was a big 'NO' for me. He suggested participation in an experimental drug study he was conducting. Another big 'NO.'
6-Food Elimination Diet
Then he offered another treatment option: the 6-Food Elimination Diet (SFED). You can read more about it in an earlier post. I liked this treatment option because it did not involve drugs. For six weeks, I could not eat dairy, eggs, soy, wheat, fish, and tree nuts including almond flour, a big part of our mostly Paleo diet. Unfortunately, this diet did not work. The biopsies results from the endoscopy showed that my eosinophil count increased as did inflammation. I cried.
And then he suggested the elemental diet. He said this diet has a 95% success rate in healing EoE. I had not heard of this diet as a form of treatment. Why didn't he recommended the elemental diet sooner? Not one of my other GI doctors ever prescribed the elemental diet. He explained I could only have this very strict liquid diet and nothing else. I said, "I'll do it." When I got home, I did my research.
The Elemental Diet
The elemental diet is a smelly, awful tasting liquid made of proteins, fats, and carbs broken down into amino acids, short-chain triglycerides and short-chain maltodextrins, combined with vitamins, minerals, and electrolytes. This was my nutrition for 7 weeks. To make this liquid a bit more palatable, I'd poured the carton into a glass of crushed ice, sprinkle salt on top, hold my nose, and sip with a straw. I began adding ice-cold seltzer to give this disgusting liquid some bubbly. Drinking it also made me nauseated so, I licked salt.
It’s a good thing I’m not a whiner and complainer, and have endured and survived a lot worse. I kept a journal and documented how many cartons I consumed per day. I found each carton to be very filling. I was never hungry. I also never craved or desired real food. But on three occasions early into the diet, I dreamed about food. In one dream, I was salivating over a platter of beef ribs and brisket but could only look.
The elemental diet did not cause any digestive issues. I did not suffer diarrhea or constipation. However, as expected, I lost weight. This is what happens when you cannot consume any solid food. I was concerned the diet would affect and interfere with my training and running. It did not. I ran strong. While on the diet for 7 weeks, I logged over180 training miles. I'm training for the Dawn to Dusk to Dawn 24-hr track ultra on Mother's Day weekend.
While on this diet I could not drink my usual Nuun hydration. I could only have water, seltzer, and tea. I mixed enough Vivonex with water, poured it into my hydration bottle, and off I'd go on my training runs.
Six weeks after starting the elemental diet, I had another endoscopy. Most patients with EoE, IBS, Crohn's, and other digestive autoimmune diseases are on the diet 2-4 weeks. While waiting for over a week for the biopsies results, I had to continue consuming only Vivonex.
When my GI doctor finally called with the results, I was so happy. THE ELEMENTAL DIET WAS A SUCCESS! "You have no more eosinophilic esophagitis. You have no more inflammation," he said. "That's the best news. One of the happiest days of my life. It's over!" I said grinning from ear-to-ear. My excitement was diminished when he took the air out of my balloon and said I still have scarring in my esophagus and that I now have to go through the long process of food reintroduction to see what food allergies I have that are the cause of my EoE.
Food Reintroduction and More Endoscopies
He went on to explain that after consulting with a pediatric GI, who treats children with EoE, my journey is not yet over. Reintroducing foods and eating again is a very involved process. The first foods introduced are fruits and vegetables for six weeks; then, an endoscopy. Then legumes and nuts are added to the fruits and vegetables for six weeks; then an endoscopy. Then more individual foods are added every six weeks, followed by more endoscopies. These foods, in order, are fish, meats, grains, except wheat; then soy, eggs, wheat, and finally, milk.
"You'll be doing these through the end of the year," he said. I counted nine more endoscopies. After we got off the phone, I slowly ate a mushed banana mixed with a mushed avocado accompanied by Vivonex. It tasted so good, the mushy stuff, not the Vivonex.
I've been eating only fruits and vegetables almost two weeks now. Never vegetarians, Jon and I have made several deliciously scrumptious and healthy vegetable dishes with tomatoes, potatoes, sweet potatoes, cauliflower, carrots, spinach, mushrooms, red, yellow, and orange peppers, yellow and green squash, spaghetti squash, acorn squash, avocado, eggplant, red and yellow onions, garlic, romaine lettuce, cilantro, and olive oil.
Fruits include bananas, oranges, apples, grapes, strawberries, pineapples, and blueberries. Because I can't have any kind of milk, we add Vivonex only to my smoothies, and mashed potatoes and sweet potatoes. Jon can't stand the taste.
Compliance and Cost
Not every patient will experience success. Research shows that lack of compliance will affect the success of the elemental diet. This diet is difficult for many people to adhere. Patients don't like the taste and smell, and claim it diminishes their quality of life.
The cost is also a factor. The elemental diet is very expensive. The APFED (American Partnership for Eosinophilic Disorders) website provides excellent information and a guide on how to approach your insurance company to cover the cost of the diet, which is classified as a Durable Medical Equipment (DME). These are the states where insurance covers the elemental diet. The state we live in covers it.
While many patients will have difficulty complying with the diet, I did not. It took some getting used in the first week or so but overall, it was not hard. I think my training as an ultrarunner for many years helped. I applied what I practice when training and running ultramarathons: patience, perseverance, endurance, discipline, and visualization. Just as I visualize crossing the finish line, I visualized the eosinophils leaving my esophagus and scurrying back to my bone marrow, where they belong.
A Personalized Diet Therapy Approach
Studies suggest that in the US, EoE (eosinophilic esophagitis) affects 0.5 - 1/1,000 patients. A 2022 study shows that EoE affects adults (42.2/100,000) more than children (34/100,000). If you, a family member, a child, or someone you know might have or suffers from EoE, I recommend Diet Therapy in Eosinophilic Esophagitis. Focus on Personalized Approach, a reader-friendly research article that discusses how to manage EoE, the elemental diet, the food elimination diets, how to manage food reintroduction and long-term treatment, nutritional considerations, and patient education. Every patient will have a different experience and opt for a different treatment option.
I can't believe it will be 26 years in May when I had my first food impaction episode at home. I can't believe that I have endured over 20 endoscopies, countless biopsies, and abnormally high eosinophils (white blood cell counts) and inflammation in my esophagus, multiple food impaction episodes, and unsuccessful treatment therapies including famotidine, Prilosec, and the 6-food elimination diet, and sleeping on an elevated bed.
And I can't believe that one of my GI doctors, until now, ever offered the elemental diet as a treatment option. In fact, I am my current GI doctor's first patient on the elemental diet! Maybe he has recommended it but his other patients have said, 'NO'.
Did my doctors think I wouldn't be able to handle it? They were wrong and I suffered needlessly. The choice was mine to make, and not theirs.
While training for the Dawn to Dusk to Dawn 24-hr track ultra to take place on its 25th anniversary on Mother's Day weekend, my only source of nutrition has been the elemental diet. My hydration has been water, seltzer, and home-brewed ginger root. On my training runs, my hydration bottle is filled with a mix of water and Vivonex. My nutrition on race day will consist of fruits and vegetables, water, seltzer, Vivonex, and ginger for nausea.
Flying high on fruit, vegetables, and Vivonex after a 15-mile track training run. Photo by Jon Gilbert
Six weeks from the day I received the good news that the elemental diet worked, I will have another endoscopy. Hopefully, fruits and vegetables will not produce eosinophils, and legumes and nuts will be reintroduced and added to the fruits and vegetables. And then another endoscopy six weeks later, and then a new food, and another endoscopy. This will continue until all foods are reintroduced and completed by the end of December 2022 or until my doctor finds what foods I am allergic to.
But I have a theory. And I'm going to test it. I'm convinced I'm not allergic to foods. I think I am allergic to the preservatives, additives, food coloring, pesticides, and hormones in our foods. The research on the dangers of these harmful chemicals, as well as medications like antibiotics and known to damage the esophagus, is jaw-dropping. For example, preservatives like sulfites, nitrates, nitrites, benzoates, sorbates/sorbic acid intended to extent the shelf life of foods are known to be have mild to life-threatening consequences. Antibiotics and other common medications like acetaminophen and non-steroidal anti-inflammatory drugs (NSAIDs) can injure the esophagus.
I will check the labels on all foods that will be reintroduced to make sure they are free of all preservatives, additives, food coloring, etc. I will buy only wild fish and not fish from the supermarket. I will buy meat and poultry from farms where cows, pigs, and chickens are grass fed and free of hormones, preservatives, and chemicals. And it's now time to remove those bricks from under our bed.
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Update: I battled nonstop winds and rain at the Dawn to Dusk to Dawn 24-hr track ultra. I placed 3rd female and 10th overall. My fuel was vegetables, fruits, and Vivonex.
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