April 10, 2009 7:22 am
Eureka! My Disease Has A Name And I Finally Found It!!
Posted by Will under health
[17] Comments
It’s Eosinophilic Esophagitis. EE for short. Kinda cute as disease acronyms go.
I didn’t always have EE. It arrived about 6-7 years ago (around the time I moved out of the Valley and into Silver Lake… hmmmmm). Pretty much came from out of nowhere. But in that time since, I’ve been at a total loss as to identify it — and not for a lack of googling, let me tell you. And the one time I attempted a diagnosis from a doctor several years ago I was told it was probably gastroesophageal reflux disease (GERD). Nevermind that I told the so-called medical professional that it wasn’t GERD, I was given some prescription anti-acid meds and sent on my way. They had absolutely no effect whatsoever.
What would happen is that on occasion during meals, my esophagus would basically swell shut and trap whatever food I’d swallowed. At first and unawares, I’d keep shoveling food down my gullet, which would eventually build up pressure down there and send me into a steady fit of building hiccups until I’d be forced to adjourn to a bathroom and, uh, reverse engines so to speak. Fun stuff, especially when it would happen at dinner parties or restaurants. Compounding the dilemma was the subsequent worry while bent over a toilet that I may have had some sort of ulcer or cancer. The good news was that when it happened, I could usually bring up only the stuff stuck, leaving alone whatever had made it into my stomach. Usually.
But as time went on and I became more aware of its onset, I’d simply stop eating when I felt the constriction beginning. More often than not if there wasn’t more than a biteful of food in transit, things would remain manageable and eventually my esophagus — like a doorman before a velvet rope at a Club Stomach — would relent and let the food pass and I could continue my meal without further interruption.
Eventually, I narrowed down the source to white rice. Of course, that didn’t stop me from eating white rice, such as last night when I got home late from work and sat down at my desk to a plate of breaded tilapia, corn and rice Susan had left on the stove for me.
Almost immediately I felt the sensation, but I was really hungry and this time I stupidly kept on eating. Sure enough within a few minutes I was sitting there hiccuping until I had to get to the bathroom and, uh… yeah: expunge.
After all that joy, sitting back at my desk I typed “goddam esophagus allergies,” into the Google slot of my browser window, which I’m sure I’d typed countless times before but with no specific result. This time, thanks perhaps to the “goddam,” up popped several sources of information on EE, including the nugget that it’s a “newly recognized” disease.
Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults. This increase is thought to reflect an increase in diagnosis as well as a true increase in EE cases. Fortunately, the medical community is responding and new scientific information is emerging to guide management of this disorder, which often persists with ongoing or recurrent symptoms.
Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines.
The good news is that from what from the information I’ve digested (ha!) EE doesn’t seem to be something that becomes something worse. That good news is made better because the bad news is for an official diagnosis I’d have endure an endoscopic exam with biopsies taken from one end of my digestive tract to the other.Don’t ya know that’s at the top of my Things To Do list.
I may get that done some day, but for now, the best treatment is to Stay The Hell Away From Rice. It has happened with other foods, but rice (or whatever is in rice that triggers the affliction) is the primary culprit.
17 Responses to “ Eureka! My Disease Has A Name And I Finally Found It!! ”
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Pingback from Don’t Blame Me, Blame My Immune System » [sic]
November 5th, 2009 at 9:44 am[...] severe and prolonged onset of Eosinophilic Esophagitis (EE), which you might recall I finally was able to self-diagnose last April after years of dealing with its mysterious occasional [...]
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April 28th, 2010 at 8:38 pm[...] leftover chicken as I was getting ready to leave for work and it triggered that allergic reaction I’ve written about finally self-diagnosing in the past in which my esophagus basically plays the Black Knight and closes up in full [...]


April 10th, 2009 at 5:37 pm
Looks like you may already be a member of the Disease of the Month Club!(I’m assuming you can take a small teasing).
But seriously, it’s usually good to finally know.
April 10th, 2009 at 9:49 pm
Uh, congratulations?
Sounds like miserable condition you got there, but there is relief in knowing what it is you’ve got. If it’s an allergic reaction, have you tried taking an antihistamine before dinner? Might help, might not. If nothing else, I switched to brown rice a few years ago, and have grown to prefer the flavor — though it did take some getting used to at first.
April 10th, 2009 at 11:42 pm
Sorry to hear about your eating difficulties. I was once allergic to many foods, fortunately grew out of it. If this is an allergic reaction, you may want to avoid combining other foods with the ones you react to, you could become allergic to them as well. Doctors still do not know what causes allergies to start, and they can crop up any time. There are de-sensitizing shots for allergies, perhaps they’re not far from relief of your condition.
April 11th, 2009 at 7:31 am
Thanks for the kind words and suggestions (and you should know Rollers that I’m totally good on teasing).
April 11th, 2009 at 11:55 am
Will, I’ve been under treatment for GERD for some time now and your symptoms do not sound like GERD, as you note. You need to see an internist ASAP, my friend. Not to scare you but your symptoms almost exactly mimic those of esophogeal cancer and I base that observation on first-hand experience. My ex, Josephine, lost her father a few years ago to metastasizing cancer and dinner time experiences at her parent’s home sound exactly the way you describe in this narrative. Don’t fuck around. Get to a doctor.
April 11th, 2009 at 11:59 am
Good advice Rodger. I’ve been dealing with it for so many years on such an infrequent and relatively stable basis — coupled to the fact that the doc I went to snap-judged the mystery symptoms — now that I have a better idea what it is I’ll get to a doc to have it checked.
April 11th, 2009 at 1:29 pm
If you’ve been trying to manage it for years, Will, chances are good that it is not cancer but better safe than sorry and all that. Food allergies begin to rear their head as we age, often with no warning. I’m having an in-home visit next week (paid for by Medicare) from a nutritonist. I’ll let you know what she says this 50-year-old man dealing with GERD, gout, hypertension, and moderate to severe psoriasis (as well as psoriatic arthritis) can and cannot injest.
April 11th, 2009 at 5:52 pm
Congratulations on getting the bottom of this. At least now you know what it is, and can move on and go to the doctor, a good one.
I’m with bikinginla on the idea of brown rice. I introduced it to my family years ago, and now my kids eat it, too.
Does brown rice have the same effect?
April 12th, 2009 at 11:37 am
I know that I had a problem of swallowing rice from Beef bowl (probably from not drinking enough liquids) and that choking could kill you…
There are several types of rice. Balsamic rice, short grained Japanese rice (at Beef Bowl) and Texas long grained rice are a few examples. I wonder if you have trouble eating rice at home or only at restuarants? Maybe they aren’t washing the talcum powder off of the rice?
Well so far as I know you are the only victim I know but I will ask around about if there are anyone else.
April 12th, 2009 at 3:42 pm
An article for you, Will, on Oral Allergy Syndrome, something else you may want to consider:
http://www.cnn.com/2009/HEALTH/04/08/oral.allergy.syndrome/index.html
June 3rd, 2009 at 6:19 am
Wow! Your description sounds *very* similar to what I’ve experienced for the last few years and am currently trying to take care of. While rice appears to be the leading hiccup predecessor for me (~90% of the time), I see a slight relation to beer or wine, and on rare occasions anything can be the trigger (usually when I’m hungry and stuff my face without chewing properly).
Do your hiccups only occur with rice, or can other foods or drinks occasionally bring on the fun?
June 3rd, 2009 at 8:16 am
Hi Chris,
Yeah, rice seems pretty much the main culprit, but sometimes the onsets are compounded when wine is included. I’ve also experienced the symptoms with hamburgers/french fries, but that usually comes when I’ve tried to inhale it instead of eat it in a less gluttonous manner. Good luck with keeping your symptoms in check.
June 9th, 2009 at 1:41 am
Yay, someone else has this too! I just Googled today – has only happened a few times, but talk about uncomfortable! It’s ALWAYS with rice from one restaurant (Greek food, that lemon rice pilaf) and so strange. I don’t actually throw up, but it’s like this weird anti-swallowing reflux on top of a gas bubble… Goes away until I try to swallow or take another bite – hurts like hell. Have encountered a few times with beer, but that’s it. It happened again today with the rice; this time I almost gagged myself just to relieve the pressure. I’m really glad someone else has similar symptoms with the same food type. Thanks for sharing!!!
October 6th, 2009 at 8:31 am
My husband had the exact same experiences. After years of being dismissed by doctors, he went to a GI doctor. He has had an outpatient procedure every couple of years where they use a balloon to open up the opening to his esophagus. This has changed his life! Also he is not on an inhaler that is supposed to help with the food allergies. Unfortunatly, the procedures last only a couple or years, even with taking prescription antacids daily. The inhaler is new and hopefully will help.
Good Luck.
December 13th, 2009 at 3:27 pm
Normalmente no voy a publicar en los blogs, pero me gustaría decir que este post realmente me obligó a hacerlo! muy buen puesto, se debe crear un libro sobre el tema.