I Was Just Diagnosed – Now What do I do?

I Was Just Diagnosed with EoE – What Do I Do Now?

So you’ve been diagnosed with EoE? So what? What does it mean? What do you do now? Read on…

First – Welcome to the club! Not making light of suffering, but you’re lucky to be struggling with EoE at a time when there are MANY more options and solutions than ever before. That’s because EoE has become MUCH more common. So the more doctors treat it, the more treatments become available, and the more knowledge about it the more we can find solutions. So there is a silver lining to the timing of your diagnosis.

Second – Don’t panic! EoE is very inconvenient, but not typically life threatening. And you can get control of symptoms with effort. So hang on and join the ride with the rest of us to find relief!

Third – EoE is ONLY as bad as your symptoms! If you’ve been diagnosed, but you don’t struggle with major symptoms, count yourself lucky and party on! Some people have EoE and don’t really have many symptoms to speak of. In that scenario, do what you want. The only time you need to treat EoE is if you’re having trouble with it. Many have mild cases that only result in major symptoms later in life (after building up over time), and some might have an EGD procedure to stretch their esophagus so they can swallow better, and that’s it. They go back to normal and life goes on forever. If you’re one of the lucky ones like this, we’re glad you’re in the club with us, but there’s not much reason for you to worry. If you’re in this group, don’t panic and start trying treatments and worrying. Again…it’s only as bad as your symptoms, and if you don’t have any/much, you don’t need major treatment. So don’t let anyone scare you into taking them.

Deal With Severe Symptoms First

Ok, with that said, let’s talk symptoms. That’s the most important topic to start with. The first thing we do with EoE is figure out your symptoms, and deal with them first. For example, many people with severe EoE have the common symptom of having a hard time swallowing food down. That’s because the eosinophils have so inflamed the esophagus they have created a stricture and it’s hard to get food past it. Many don’t notice it that much (other than they’re naturally a slow eater for some reason) UNTIL it gets bad enough that they’re having scary “close calls” swallowing food, or worse, food impactions where it gets stuck. At that point you need to find relief so you can eat more normally and not risk impactions.

Other symptoms are common with EoE, but food impactions are typically the most severe and dangerous of them. Other issues might prevent someone from eating consistently (because of reactions) and they don’t thrive or they lose weight (unintentionally). But that’s at least not immediately dangerous and can be approached over time.

If you have EoE and are experiencing symptoms that are bad enough to consider treatment or lifestyle alteration, below is the typical progression of treatments. If your GI suggests anything different, or possibly a more potent treatment before trying others, do your research to make the best choice for yourself. Many times a GI might recommend a treatment that is far down the list before trying the early options, which might have helped without the more severe treatment.

Before any treatment, you should have been formally diagnosed with EoE with a high eosinophil count (over 15 eos per high powered field (HPF)). One note: if you had a biopsy that was higher than 15, that doesn’t necessarily mean that you ONLY have 15. The problem with EoE is that it’s a patchy disease and it’s an art form for a GI to biopsy the right place in your esophagus to find the problematic areas. So one part of your esophagus could be 15, but another could be 75. If you have been diagnosed, AND are having undesirable symptoms, consider the following progression of treatment.

NOTE: if you’re having severe symptoms, that’s the time a GI might prescribe a more severe treatment and skip over the early, less invasive ones.

Treatment 1 (self-driven treatment) – Immediate Removal of Known Allergens

Before any other treatment consideration, the first thing anyone with EoE should do is discontinue eating any foods they know or suspect they’re allergic to. For example, if you are sensitive to dairy, then remove it as soon as you find out you have a high eosinophil count. It’s a trial and error effort to identify your triggers, but you’re most likely to find those triggers in the foods you know you’re sensitive to. These are formally called “Elimination Diets”, and are commonly done by eliminating one or more of the most common allergy-causing foods (wheat, milk, eggs, seafood, nuts, soy). Many find by eliminating these they have less symptoms, and by identifying them can exclude them for long-term relief.

IMPORTANT: Some doctors will (because it sounds logical) send you to an allergist to try to do a prick-test or blood test to see what you’re allergic to. This sounds like it would be a right thing to do, but a positive result on an allergy test has been shown to NOT be an indicator of EoE triggers. So just because you have a positive allergy test to eggs, for example, does NOT mean eggs are a cause of your EoE symptoms/issues. Many people spend lots of effort trying to connect the two, but end up wasting time on it. It might be a move in the right direction at least, since it’s at LEAST some direction (rather than randomly selecting food), but don’t expect it to be THE answer.

Elimination diets are typically a better shot at identifying the culprits, since many EoE triggers are in the 6-food groups most commonly problematic for people.

Treatment 2 – “The Stretch”  EGD Procedure

NOTE: this is a severe treatment, but I put it here at number 2 for those that are having serious symptoms of not being able to swallow. If you’re at risk for impaction because of a stricture, then the most IMMEDIATE solution is to get your esophagus stretched. Read my blog post on this for the full story, but don’t listen to all the crazy things you read about EGD dilations of your esophagus. It’s a very safe procedure and can change your life IMMEDIATELY. You have the outpatient procedure, recover for a day or two (or a few), and suddenly you can swallow food again! Nothing else on the table can improve your lot faster than this. I highly recommend this procedure for strictures that cause dysphagia (trouble swallowing). It gives you time to function again, while you can investigate your food choices and try to identify your triggers (from a MUCH better place). If your symptoms are NOT severe enough to warrant an EGD, then continue on and see if the other options help you. You can use an EGD as a last resort if nothing else works.

Treatment 3 – PPI’s (Proton Pump Inhibitors)

You’ll read a lot of opinion on PPI’s. Some will share terrible side-effects from their experience (muscle pain, stomach issues, etc.). These are very rare, as PPI’s (i.e. Esomeprazole or Nexium) have been shown to be safe for short-term use. Many (including myself) have take them for decades with no issues. The slight risk factors or side effects don’t compare with the potential issues of having stomach acid consistently in your esophagus (throat cancer for one! Which is very low survival rate).

NOTE: there are 2 reasons to try PPI’s. First and foremost is if you have frequent heartburn (acid in your esophagus). That’s normally caused by GERD or GastroEsophagealRefluxDisease, which is where the sphincter between your stomach and esophagus doesn’t work completely and allows acid to back up into the esophagus. If you have this, you need to treat that specific problem even not considering EoE. Reflux over time can cause its own issues. This is a very common condition with people that have EoE. The connection between them is not fully understood, but it’s a common combination.

The 2nd reason to try PPI’s is that studies have found that up to 50% of people who suffer from EoE symptoms find some relief after starting on a PPI regimen. Something important to understand: This benefit is NOT related to the GERD or acid reflux you experience. Slowing acid down has not been shown to be a “fix” for EoE symptoms. It’s that PPI’s have been shown to have an anti-inflammatory characteristics, which can help with esophageal inflammation. Again, not connected to acid production.

Last word on PPI’s. If you cannot swallow pills (or it’s too risky to try), Nexium is one of the PPI’s you can break open the capsule and pour it in apple sauce or something to take it (I’ve done that for years). Not all PPI’s can be broken down like that.

Treatment 4 – Corticosteroids

This is a more potent treatment, simply because of the potential side effects. Note, this is NOT talking about systemic steroid treatments like Prednisone. Those high-impact steroids have severe side effects not present in Corticosteroids we’re talking about here. BUT there still are some to consider.

Corticosteroids work like this. Corticosteroids are ones that are in meds like inhalers for your lungs. BUT what you’re trying to do is get them to coat your esophagus (like they coat your lungs when you inhale them). Then they can do their job on your esophageal inflammation and help bring it down. That’s what they do. So the 2 main options are:

1) Fluticasone – Fluticasone is an inhaler that you spray in your mouth and SWALLOW (not inhale) and attempt to get it down your esophagus. This is a challenge since it’s such a fine mist that it immediately hits all over your mouth and you have to try to get it down your throat. Then you have to wash your mouth out thoroughly so that you don’t develop thrush (candidiasis) which is a potential side effect.

2) Budesonide – Budesonide is another treatment for your LUNGS, but it’s an actual liquid that is meant to be put in a diffuser and inhaled (not a spray inhaler but more like an oxygen tank). For EoE, instead of putting the liquid in the machine to inhale, you mix it with Splenda or something to make a “slurry” so that you can swallow it and have it coat your esophagus.

The hope with either of these is that the corticosteroids hit the spots where your EoE is active and calm it down. Many have success with this treatment, but a good number have to stop because they develop thrush. Thrush is a treatable condition caused by Candida fungus, but you’ll need to stop the corticosteroids while you get rid of it (with an anti-fungal medication). The symptoms are pain / rash feeling in your mouth or esophagus.

The problem with these corticosteroids is that they are a temporary band-aid. They don’t fix anything (if they work) except the part of your esophagus they can absorb into. They can improve symptoms, but if you stop them it comes right back.

Treatment 5 – Very Promising Biologic Medicines

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:

1) 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.

2) 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 hospital where they can watch you.

All these are the common paths to find relief from EoE. There are other options, but these are the most accepted ones by the best GI’s in the country. Of all that has been said, please do your research and find a good GI that is knowledgeable about EoE and get in to see them and make a plan. Together. Then read, study and start figuring yourself out to find what will work for you. I call this the “needle in the haystack disease”. That’s because it’s not one size fits all and your triggers might be completely different than everyone elses. You’re on a mission to find them, and eliminate them.

Drop me a line and tell me how you’re doing and how I can help.
– The EoE Guru