Sunday, December 13, 2020

Newly Diagnosed with Eosinophilic Esophagitis

Because one rare disease (Ramsay Hunt Syndrome) in my lifetime wasn't enough — and because it is 2020 after all  — I got slapped with a new rare disease this week, Eosinophilic Esophagitis (or EoE for short). 

Okay so truth be told, 7.5 years ago, I had an upper endoscope and my GI doctor mentioned "inflammation" to me.  I drank this nasty stuff for a couple of weeks (mixed up from a compound pharmacist) and told to see an allergist.  At that time, I told myself  "if I had food allergies I would know" and moved on.

Well yeah, I wasn't as smart as I thought because here I am again.  But let's start with the basics. 

Eosinophilic Esophagitis according to Mayo Clinic is "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."

Image by Anastasia Gepp from Pixabay

Disclaimer, I am not a medical professional. You should always discuss medical issues with your own physician.

In a nut shell, there is a large amount of white cells (inflammation) in the inner lining of my esophagus. (To get dx'ed a patient's biopsies must be 15 eos/hpf or higher.)  

My symptoms include chest pain, nausea, stomach aches, trouble swallowing, GERD -- as well as vitamin deficiencies (Iron and B-12).  And the scariest, impaction. (One day last week a french fry got stuck down in my chest.  Fortunately I could still breath but it was the worst feeling. I tried drinking a sip of water but the water came back up. Fortunately after a few seconds the fry finally moved down.)

Right now you are probably thinking, "Easy enough; just stop eating what foods cause an allergic reaction."

Well this is where it all gets complicated! I mean really complicated. 

When a patient goes to an allergist/immunologist to get tested for a food allergy, a scratch test or blood test is done which tests immunoglobulin (IgE) antibodies. For example my daughter is allergic to peanuts and sesame seeds.  If she eats either she breaks out in hives.

However, an EoE allergy is a totally different response.  As a reminder, an EoE allergy shows up in the white blood cells that line the esophagus causing chest pain, trouble swallowing and reflux.  So a scratch test will not show my allergies.

(This has been the hardest thing for me to wrap my brain around.  I thought an allergy was an allergy.  It took me a couple of days to understand that they're different types of allergies in our body.) 

Don't get me wrong, it's still a good idea to know what foods cause an IgE response because they can affect how you feel going into anaphylactic shock would not be fun.  But what I am trying to point out is that if I have a peanut allergy and stop eating peanuts, I can still have EoE because something different -- say milk -- may trigger inflammation in my esophagus.  

(Complicated right? Feel free to reread that last paragraph again. Just remember this:  EoE allergies give a different response than IgE allergies! Or to say it another way, my list of EOE triggers may be completely different than my IgE allergies — although in some cases they could be similar — it’s really different for each person.

So if an normal allergy scratch (IgE) test won't tell me my EoE triggers, how do I find how what I am allergic to?  This is where the fun begins. To start off it is suggested I try the Top 6 Allergen Elimination Diet which means I need to avoid the top 6 allergy triggers (eggs, tree nuts, cow's milk, peanuts, shellfish, and wheat), have a biopsy done under anesthesia to show I am in remission (numbers 15 or under), and then slowly add one food type back until I see if I am "triggered" or not. 

How do I find out if that food is a trigger? Well that would involved another to trip to the GI, another round of anesthesia, and another round of biopsies.  If my numbers are still under 15, I am not triggered and can reintroduce a new food/allergen. If they are higher, we found a trigger food.

So this is my new world.  My new realty.  I see my GI next week to further discuss my treatment (my guess would be more of the awful slurry drink and a proton pump inhibitors medication) and plans (referrals & diet), but I thought laying out the details here on the blog could help me explain what I am dealing with to my family and friends.