I have been living with Eosinophilic Esophagitis (EoE) for about 10 years now. I still struggle with it to this day. Read more about my journey with allergies and EoE HERE. I am featuring this post this week because I am in the middle of an EoE flare-up. I am having an upper endoscopy today for a check. If you have been diagnosed with EoE, or suspect you may have it then this post is for you. Or maybe you don’t know what it is. I hope this post will be informative and helpful as you seek to find answers and healing. Don’t wait.
What is Eosinophilic Esophagitis?
The Mayo Clinic defines Eosinophilic esophagitis (e-o-sin-o-FILL-ik uh-sof-uh-JIE-tis) as “A chronic immune system disease in which a type of white blood cell (eosinophil) builds up in the lining of the tube that connects your mouth to your stomach (esophagus). This buildup, which is a reaction to foods, allergens, or acid reflux, can inflame or injure the esophageal tissue. Damaged esophageal tissue can lead to difficulty swallowing or cause food to get stuck when you swallow. Eosinophilic esophagitis has been identified only since the early 90s but is now considered a major cause of digestive system (gastrointestinal) illness. Research is ongoing and will likely lead to revisions in the diagnosis and treatment of eosinophilic esophagitis.”
So what does this all mean in basic terms? Your esophagus becomes inflamed due to some type of allergy. This allergy is usually one or more foods or environmental allergies such as pollen. Acid reflux is also a likely cause. My Gastrointestinal Doctor describes Eosinophilic Esophagitis as, “An asthma attack in your esophagus.” With Asthma, your lungs become inflamed making it difficult to breathe. With EoE your esophagus becomes inflamed causing difficulty swallowing. This makes living with eosinophilic esophagitis extremely difficult to manage.
What are the Risk Factors for Eosinophilic Esophagitis?
There are several risk factors associated with EoE. People with atopic dermatitis, asthma, food allergies, or environmental allergies are more likely to develop Eosinophilic Esophagitis. It is found more often in males than in females. A family history of EoE is also considered a risk factor for this disease.
Since I have food and environmental allergies and atopic dermatitis, it is no wonder I developed EoE. You can read more about my Journey With Eczema and how I manage it HERE.
Eosinophilic Esophagitis Symptoms and Eosinophilic Esophagitis Diagnosis
Children were the first to be diagnosed with EoE, but it is now becoming more common in adults as well. Here are signs and symptoms of EoE for both adults and children, and how doctors diagnose this disease.
Signs and Symptoms In Adults:
Difficulty swallowing (dysphagia)
Food getting stuck in the esophagus after swallowing (impaction)
Coughing and/or choking when eating
Chest pain that is often centrally located and does not respond to antacids
Vomiting (regurgitation)
Signs and Symptoms In Infants and Children:
Difficulty feeding, in infants
Difficulty eating, in children
Decreased appetite
Vomiting
Abdominal pain
Difficulty swallowing (dysphagia)
Food getting stuck in the esophagus after swallowing (impaction)
No response to GERD (Gastroesophageal reflux disease) medication
Failure to thrive (poor growth, malnutrition, and weight loss)
Diagnosis of Eosinophilic Esophagitis
The key to diagnosing Eosinophilic Esophagitis is that doctors find patients with EoE don’t improve with Gastro-Esophageal Reflux Disease medications. Since EoE was discovered and is continuing to be researched, diagnosis is more accurate.
According to the American Academy of Allergy Asthma and Immunology (AAAI), “Currently, performing an upper endoscopy with biopsies of the esophagus is necessary to diagnose EoE. Small pieces of esophageal tissue the size of the tip of a pen (biopsies) are taken to be examined under the microscope for the presence of eosinophils and for signs of inflammation.”
Eosinophilic Esophagitis Treatment
There are some basic options for the treatment of EoE. Usually, treatment involves a combination of several techniques to keep the disease under control, but remember each patient is unique and treatment will differ for everyone.
EoE Diet
Dietary therapy is one effective treatment for Eosinophilic Esophagitis. This involves following an elimination diet. It’s no surprise that the most common foods that cause EoE are the same foods that are the most common food allergens. These include milk and dairy, wheat, egg, soy, peanuts and tree nuts, fish, and shellfish. An elimination diet is when the patient avoids all foods that trigger inflammation. This is a tedious process, but one that will help identify which foods may be causing your EoE symptoms.
How to do an Elimination Diet
Here are some basic steps of an elimination diet according to the Oregon Clinic. Check out more information on their website HERE.
Step 1. Plan
Work with your healthcare team to identify which foods might be causing symptoms. Plan a time to start the diet when you know you can be successful. Prepare yourself by having the foods you will need on hand and prep as much as possible in advance.
Step 2. Eliminate
Remove all 6 foods (dairy, wheat, egg, soy, peanuts and tree nuts, fish, and shellfish) from your diet for 4 weeks without any exceptions. It is important to read food labels and use caution when dining out since you have less control over the ingredients in restaurants.
Step 3. Challenge
If your symptoms have not improved after 4 weeks, follow up with your health care provider.
If your symptoms have improved, start the challenge phase with ONE of the foods you stopped eating at a time. As you do this, write down your symptoms.
Introduce ONE new food per week. (Dairy, wheat, soy, eggs, nuts, or seafood/shellfish)
Add 1 serving of the food in the morning. (Example: a glass of milk or 1 slice of bread)
If you don’t notice any symptoms, eat 2 larger portions in the afternoon and evening.
Over the next 3 days, continue to eat at least 1 serving of the food per day.
If the food does not cause symptoms, it is considered safe.
Wait to add the safe food back into your diet until the other food challenges are complete.
Medication for Eosinophilic Esophagitis
There are several types of medication treatments for EoE. First, doctors usually prescribe a PPI (Proton pump inhibitor). Examples include over-the-counter medications like Omeprazole, Prilosec, and Pepcid AC.
Doctors also prescribe topical steroids such as fluticasone or budesonide, which is a liquid that is swallowed to treat eosinophilic esophagitis.
A final medication used to treat EoE is a corticosteroid. Corticosteroids are natural substances found in the body that help fight inflammation. An example is Flovent HFA. This is a common treatment for Asthma, but for Eosinophilic Esophagitis the patient inhales the medication dispensed from the inhaler into the mouth and swallows it. This opens up the esophagus and reduces inflammation.
Dilation of the Esophagus
In cases where you experience severe narrowing, or constriction of your esophagus, your doctor may recommend dilation. Dilation is simply stretching the esophagus to help make swallowing easier. This is done during an upper endoscopy.
Lifestyle and Other Treatments for Eosinophilic Esophagitis
Maintain a healthy weight: Exercising daily to maintain a healthy weight will keep pressure off of your abdomen which increases the symptoms of acid reflux and EoE.
Eat a healthy diet: Avoid foods that are known to cause heartburn such as fatty or fried foods. These will increase your symptoms.
Manage and Avoid Stress: We all know stress is a part of life but chronic stress and failure to manage stress are shown to increase symptoms.
Sit upright while eating/drinking: Slouching or lying down while eating and/or can cause an increase in symptoms. Also, stay upright up to 30 minutes after eating/drinking to prevent symptoms.
Elevate your head while you sleep: This will also help prevent symptoms and acid reflux associated with EoE.
Join EoE support groups: I recommend doing this. It’s a great way to get support and encouragement. There are a lot of great groups and forums out there. Pick and join one that is right for you.
What Happens if Eosinophilic Esophagitis is Left Untreated?
There is still a lot of research to be done for this disease since it is fairly new. Doctors and researchers are still determining the long-term complications of EoE. As of now, if left untreated, symptoms will continue and will cause permanent damage to the esophagus, and continued constriction of the esophagus may happen.
My Personal Experiences With Eosinophilic Esophagitis
As I mentioned at the beginning of this post I am having an upper endoscopy today to do a check of my esophagus because of a recent flare-up. This will be my 4th upper endoscopy since my EoE diagnosis. My esophagus was dilated in two of those 4 procedures due to severe inflammation and constriction. I experience most of the symptoms mentioned. I have used all of the treatments mentioned above both medical and lifestyle. My medical team (GI Doctor and Allergist) determined my EoE is caused by environmental allergies (pollens), as my symptoms are always worse in the Spring and Fall.
Sometimes it is very painful to swallow. I am usually the last one to finish eating because I need to eat slower than others. Once in a while, I choke on crumbs from bread, tortilla chips, or other similar foods.
In 2016 I had a severe flare-up. I choked every time I ate. Every time I ate I was afraid and it was so painful to swallow that I quit eating. I ended up in therapy for it because I literally could not bring myself to eat. It was just so scary and painful. I lost a lot of weight because of it and became dangerously thin. With the help of my medical team, I have since healed and am able to better manage my EoE flare-ups. But remember there is no cure for this disease. It does not go away. It takes a lot of diligence and management of medications to keep symptoms under control.
If you or someone you love experiences any of the symptoms mentioned in this post, please consult with your doctor immediately. Don’t wait. I hope this post is informative and helpful as you seek to find answers and healing.
Blessings, Laura xo
Additional Resources:
These may provide additional information and support for you, your family or your friends living with Eosinophilic Esophagitis.
American Partnership for Eosinophilic Disorders (Apfed)
Campaign Urging Research for Eosinophilic Disease (CURED)
Connecting with Support Groups
NOTE: Health information contained in this post is provided for general education purposes only and is not intended to be a substitute for a diagnosis and should never be used for specific medical advice. Please consult a health care professional for questions, concerns, or treatment.
