Treatment and Cure for Eosinophilic Esophagitis
THE 3 D’S OF EoE TREATMENT >>> DIET, DRUGS, DILATION
Important! To date, there is NO CURE for, NOR any treatment “approved by the FDA” for EoE.
All treatment is “off-label”. BUT, that doesn’t mean there aren’t therapies that work. See below.
DIET - Food or Allergen Elimination
The first and best option to treat or cure EoE is to eliminate the food or other allergen that is causing the condition. This may be very difficult to figure out all the allergens, but if you can, you will have the best results.
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Find Your Allergens
This is the tricky part for anyone who has EoE. Frequently, EoE sufferers may be allergic to a multitude of foods or other allergens, and it’s difficult to identify them if the reaction is not noticed when they are eaten.
Often the reaction for EoE is internal and subtle until it goes on over time and it finally becomes difficult to swallow. So you may not know you’re eating or drinking something you’re allergic to until much later, making it even harder to identify the allergen.
You will read much about the reliability of allergy tests. There are 2 main types:
- Skin Test – The Allergist will lightly prick your skin with various foods to determine the severity of a skin reaction (if any). The allergist will likely counsel you to avoid foods that caused a high or moderate reaction.
- Blood Test – A more thorough test where they test your blood for many foods or other allergens. They will rate your allergies on a scale to indicate severity. Many times both a skin test and blood test are performed and compared to validate the severity between the two tests.
A note on allergy testing for EoE. There have been studies that put doubt into the effectiveness of allergy results in determining which foods are triggers for EoE. Allergists will admit that these tests are not perfect, but for EoE they might be the only real indicator of what could be causing your eosinophilic reaction (since you may not be able to feel it). This is a good first step to try to identify what you may be reacting to. Then you can eliminate those foods and watch for improvement. Keep in mind that it’s a process of trial and error to figure out, not just getting test results and finding the answer.
Note: There are many online companies that try to tell you they can test your blood, or hair, or other options you send in to them. Many of these are highly suspect in their methods. We recommend going to see a local allergist that has experience with EoE patients to determine which tests will be most reliable.
The most drastic version of elimination diet is the Elemental Diet. In this diet all food is removed, and replaced with consuming (or using gastric feeding tube or intravenous feeding) liquid nutrients containing amino acids, fats, sugars, vitamins and minerals.
In this diet the body does not have to work to digest food since it’s in its simplest form already.
Studies have shown that this diet either completely resolves or drastically reduces the eosinophils in the esophagus while on the diet. Over 90% of participants in the studies saw reversal of eosinophils, and the other 10% saw drastic improvement.
Summary: this diet removes allergens in the digestive system from consuming food causing EoE.
Reality: This stuff tastes terrible, and only in life threatening cases would someone want to be on this diet. 😛
6 Food Elimination Diet
The Six-Food Elimination Diet is much more “doable” than the Elemental Diet, well, because it allows you to eat! It still takes diligence though. If your symptoms are severe and you need to find rapid relief, you might consider this elimination diet.
In this diet, 6 categories of foods that are the most common allergens are completely eliminated from your diet. The idea is to do something drastic to produce quick improvement, then slowly add back in some of the food to identify which foods are causing you trouble.
These are the 6 foods that are eliminated:
To experiment on what kind of diet change this would cause you, next time you shop read labels and notice how many things you would have to eliminate. Wheat, for example, is in just about every bread, pasta, cracker, or cookie available (wheat flour). You’ll be surprised how much you eat these foods without even being aware.
It takes some diligence, but this elimination diet has been shown to be successful in getting control of EoE symptoms and putting you in a better position to identify the solutions you need. Studies have shown that over 70% of participants in this diet had dramatic improvements in eosinophil count and symptoms.
NOTE: You may need to modify this diet to suit what you know about your allergies. For example, I added corn, rice and a host of other things not included on this diet since I was tested positive for them as well. So maybe it’s called a “Six Food PLUS Elimination Diet”.
4 Food Elimination Diet
If your condition is not as serious as others, but you need to find what’s causing the reaction in you, you might want to try the 4 Food Elimination Diet. It’s similar to the 6 Food Diet, but you add back in Seafood and Peanuts / Tree Nuts. Even 4 foods are tough categories to exclude, but these 4 categories have been found as common allergens so they might be the triggers for your EoE.
These are the 4 foods that are eliminated:
Again, check labels when you shop to see how this would affect your diet.
Some studies have shown that even the 4 Food Elimination Diet resulted in up to 60% of participants found remission of symptoms, and up to 90% found noticeable relief.
Read up on the 4 Food and 6 Food Diets and determine which you will take on and learn about your reactions and results. If you want to formally track it, your GI Doc will need to take periodic biopsies and determine if it’s working by the eosinophil count in the biopsy. OR you can try it on your own and see if you can swallow better after eliminating target food for 4 weeks or more.
There are drugs that are used to counteract the impact of EoE. Doctors may prescribe swallowed steroids that might help reduce inflammation and reaction in the esophagus to help reduce symptoms.
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Proton Pump Inhibitors
The relationship between GERD (Acid Reflux) and EoE is still not completely understood. Many EoE sufferers also have GERD, but not all. And GERD sufferers might not have EoE. Acid from GERD can cause eosinophils to invade the esophagus like they do in EoE. BUT that doesn’t mean they have EoE. When acid gets up into the esophagus it causes irritation, and eosinophils are summoned to help with the healing process. So even a biopsy indicating eosinophils in the esophagus is not enough to know whether it’s just GERD or if it’s full blown EoE caused by allergies. Read more about differences between GERD and EoE here.
Proton Pump Inhibitors (“PPI’s” like Nexium and Prilosec) are frequently prescribed for either condition. For GERD it slows the production of acid so you don’t have reflux. Acid in the esophagus is the reason eosinophils are there for GERD sufferers. For those people, PPI’s may put them into full remission (no more acid, no more need for eosinophils).
This is why your doctor’s 1st order of business when finding eosinophils in your esophagus is to prescribe PPIs. That alone could be all you need. If your symptoms do not improve, you may be an EoE sufferer as well.
If your symptoms are severe and you need relief before going through all the effort to identify allergens and eliminate them, there are a couple of options that might help. These medicines have been shown to give relief to some EoE sufferers:
- Swallowed Fluticasone Corticosteroid – Fluticasone (Flovent) is a steroid inhaler, but instead of inhaling it, you spray it in your mouth and then swallow it. An inhaler can be difficult to swallow because the mist is so fine it immediately hits the inside of the mouth, but must be swallowed to have effect.
- Swallowed Budesonide Corticosteroid – Budesonide is a steroid that is in a small liquid vile that is normally inserted into a nebulizer and inhaled for asthma sufferers. For EoE it is swallowed instead of inhaled and coats the esophagus to help reduce eosinophil reaction and inflammation.
NOTE: Many people worry when they hear the word “steroid” because steroids are associated with undesirable side-effects, especially if taken over a longer period of time. These corticosteroids are not to be confused with the steroids athletes take for performance. They are totally different. For EoE, these steroids represent a new class of corticosteroids called nonsystemic steroids, which do not target the whole body. 90% of the drug is inactivated before it reaches the rest of the body, so it causes fewer side effects than traditional corticosteroids such as prednisone.
That being said, there are risks of side effects to consider. Thrush or yeast infection in the mouth or esophagus can be common with this kind of steroid. So washing the mouth out thoroughly after every dose is very important. Even a yeast infection is treatable though if you experience it. Consult your doctor about any risks before beginning treatment.
Emerging Medicine / Trials
There are promising new medicines that are showing improved symptoms or even eliminated symptoms of EoE. These are called “Biologics” and are NOT approved for EoE by the FDA yet, although they ARE approved by the FDA for other conditions (like Eosinophilic Asthma and Eczema) so they have been through the process of trials and such. The reason they also help with EoE is that they target the source of all of these conditions; the Eosinophil cells themselves.
One problem with the fact that they are NOT approved by the FDA for EoE yet is that most insurance companies will not cover them for conditions they are not approved for. Talk with your doctor and see if there are ways around that, OR look for a trial where the medicine and biopsies are included for free in the trial. Some manufacturers also do promotions where they may pay for some or all of your costs for the drug.
Some of these medicines are:
- Fasenra (Benralizumab) – Fasenra is an injecction that you get monthly for 3 months, then bi-monthly thereafter. It is for Eosinophilic Asthma, but the medicine targets eosinophil cells (it’s an IL-5 Inhibitor) and inhibits their life, so they die off.
- Dupixent (Dupilumab) – This drug works like Fasenra in inhibiting eosinophils.
Both of these drugs are injections. The main risk with these is that if you are allergic to the medicine you could have a severe reaction (small risk). Because of this they give the 1st dose under supervision in a clinic or hostpital where they can watch you.
DILATION - EGD Procedure
A Gastroenterologist does an outpatient procedure called an EGD with Dilation of the esophagus. This “stretches” the esophagus open more so it’s easier to swallow food. A scope is also used to see how everything looks.
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EGD "Scope" Procedure
When you first have enough of a problem with pain or swallowing to see a Gastroenterologist, he will likely suggest an EGD procedure and put a scope down your esophagus to see what’s happening. He may also take a biopsy to see if there is anything like a high concentration of eosinophils (how EoE is diagnosed).
An EGD is done in a hospital or clinic and you are put under for the quick procedure. Risks are just the normal risks of being put under for any procedure, and very small for anything going wrong during the procedure itself with the scope or even when being dilated (stretching the esophagus).
Recovery is quick if the GI only looks to see what’s going on or takes a biopsy. If he dilates your esophagus it’s typically a half day or a day before you’re mobile again, but with a sore throat and some pain swallowing for a couple days (more about that below).
Dilate (Stretch) the Esophagus
The most immediate benefit for difficulty swallowing is to have your esophagus dilated by a Gastroenterologist (GI) during your EGD procedure. Your GI could use either a “balloon” dilator if your stricture is simply a “ring” stricture, or he will use “savory” (tapered) dilators if you have a longer stricture.
The normal esophagus is 20-25mm in diameter. People who suffer from EoE can have diameters as small as 5mm or less. That’s why they’re the slowest eaters in town. They have to chew 4-5 times as much as normal to swallow safely. Your GI will see if the scope goes down your esophagus without resistance first to get a look at it. If it’s too tight, he/she will need to stretch your esophagus so the scope will fit (after trying the neonatal scope for children since it’s smaller).
Your GI will gauge how tight your esophagus is with a small dilator and increase with larger ones to get you up to a point where you will feel the benefit of swallowing better, but not push so far to risk any tearing. This procedure is done all the time now, so GI doctors are very good at it.
10 years ago, doctors believed that EoE patients had a greater risk of perforation during an esophageal dilation, because of the tightness caused by inflammation from eosinophils. Now they know from doing so many that the risk is minimal even compared to non-EoE patients. They used to say the risk was 10% of tearing, now that risk is known to be much less than 1%. It’s a safe procedure.
A typical procedure goes like this: let’s say your GI finds your esophagus very tight, say it’s 7mm in diameter. He/she may use a 9mm (assuming the savory dilators) to stretch you up some.Then he may look and see how your esophagus is doing since he should be able to fit the scope now. Then he could do it again with maybe a 12mm dilator or larger. Usually for severe cases, your GI will want to do 2 separate procedures a few weeks apart. In this example he might go up to 12mm the first procedure, then go to 15mm or more the 2nd procedure. It completely depends on the condition of your esophagus and what he sees in the scope.
The entire procedure usually takes up to a half hour once you’re in the room, then you wake in the recovery room and get ready to go. The GI doctor will talk to you (or the person who brought you) and tell you what he/she found, with recommendations. You’ll recover in a few days and you’ll notice that it’s a little (or a lot) easier to swallow food (once the pain is gone).
How often you have this procedure depends on your esophageal reaction to your allergies. A dilation might help you for many years. Or you may find you have trouble swallowing again in a matter of months. This procedure is not meant to be a “fix” to your condition. It’s a bandaid to help you swallow so you can find what your allergic to and change your habits so you don’t have to do it over and over. Read my blog post that tells all about EGD’s with dilations here.
I’ve had extensive experience trying all of these potential solutions. You can read all about my experiences on my blog page.
For those who can’t seem to eliminate the source of allergens causing their eosinophil infestation in the esophagus, we hope and wait for a drug that does what others do for other types of allergies. One that will tell the body to stop producing so many eosinophils in the esophagus. We look forward to that day, and we’ll watch and keep you posted on progress.
Since Eosinophilic Esophagitis is more and more prevalent, there are more and more clinical trials in attempt to find the best solution. If you want to keep up to date on what trials are happening, this resource will let you know.