Eosinophilic Esophagitis: Accolades and Achalasia
Preface:
I have recently been diagnosed with a rare condition called eosinophilic esophagitis (EE). When I eat certain foods my immune system floods my food pipe with a bunch of overzealous white blood cells that screw everything up. Unfortunately, it's a delayed reaction, so it seemed to me that there was no link between what I was eating and when I was getting 'attacked'. Thankfully I now know which foods cause my reactions, so eliminating them has allowed me to get well on my way to recovering.
My point? Well, I've spent the last year of my life going from doctor to doctor trying to figure out what was wrong with me. They ran the gamut of every test possible but EE is a low-flying ass that stays off the radar extremely well. Below are the trials and tribulations I have gone through to get to this point. I urge anyone who is having trouble getting a diagnosis and experiencing similar symptoms to ask your doctor about getting tested for EE - you may save yourself (and your mother) a great deal of grief.
Story Time:
Note - the names have been changed (childishly) to protect the identity of those involved.
(August 2009)
My heartburn has gotten out of control. Every meal is being followed by some artificially flavored chalk. I bought a large container of TUMS last month and I'm already out. I decided to go ahead and schedule a doctor's visit - asked around and Dr. BigHouse was recommended.
(September 2009)
Hurricane Ike delayed my trip to the doctor a bit. Finally got to see him and explained that I'm now having dizzy spells after eating and feeling nauseated as well. He gave me a trial of heartburn medication.
(October 8, 2009)
Went back to Dr. BigHouse and told him the heartburn meds wern't helping. He did some blood draws and an Ultrasound. All my tests were within range. He recommended I see a GI specialist, Dr. Saddam, about my stomach problems.
(October 12, 2009)
Woke up this morning with stabbing pains in my chest. Went to the ER for 7 hours. The nurse ordered Chest X-Rays, EKG, and a GI cocktail. Everything came back clean - they released me (still with chest pains) without every having the doctor see me. But, joy of joys, they gave me more heartburn medicine (apparently telling them you've already tried it is irrelevant).
(October 15, 2009)
Dr. Saddam performed and EGD on me (that's fancy medical lingo for sticking a camera down your throat and taking samples). My tonsils are enlarged, I've got white plaques lining my esophagus, and gastritis.
(October ?, 2009)
Dr. Saddam informs me I have a yeast infection in my throat. He gives me some antifungals to kill it, but says that this is typically a symptoms of a greater underlying condition. I ask him other causes and he says it's typically cancer, diabetes, or HIV. Cancer would've appeared on the EGD and diabetes had been ruled out by blood work. HIV required another blood draw and a painfully long two day wait. Thankfully, I'm negative. (Ladies!)
(November 10, 2008)
I revisited Dr. Saddam because I'm still experiencing bizarre symptoms after eating. Changing my diet hasn't helped and neither did more antifungals. Dr. Saddam does a metabolic panel and some other mumbo-jumbo and, as usual, everything is negative or in range.
(December 23, 2008)
Haven't been able to eat much. Trouble eating plain rice, trouble eating a banana, trouble eating oatmeal. I've lost 15 pounds over the last couple of months and the pain is worse than ever. Dr Saddam orders a CT scan of my abdomen. Everything comes back normal - except I have a kidney stone. Dr BigHouse says it's small and not to worry about seeing a urologist because I'll pass it without even feeling it.
(January 2009)
Went back to Dr. Saddam's - parents came with me because they are worried. He thinks it may be stress/anxiety/depression. I think it may be time to get some new doctors.
(February 2009)
Went to see Dr. OldMan. He ordered a barium swallow and suggested I see a different GI specialist - Dr. Aaron. Sadly, Dr. Aaron isn't convered on my insurance, so I have to see Dr. NoGood instead. (Aside: Dear Fox News, please stop saying we have the best health care system in the world. It's a load of bullshit and you know it.)
Barium swallow came back clean - no achalasia, no reflux, no nothing. Dr. NoGood is thoroughly convinced I have heartburn, despite me telling him I don't and that I've been on a slew of heartburn mediciations. We try prevacid, aciphex, kapidex, prilosec, nexium, and protonix.
(March 2009)
Dr. NoGood decides to perform another EGD and a colonoscopy. Other than inflammation in my upper GI the scopes show nothing out of the ordinary (then again that's taking his word for it because he only took one god damn picture through the entire procedure). He decides to treat me for SIBO and after no marked improvement tries to give me another heartburn medication.
At this time I decide to call up my insurance company and see how much it will cost me if I pay Dr. Aaron out of pocket. Turns out Dr. Aaron is covered by my plan, but only at one of his two locations. How is that possible? Ask the best healthcare system in the world.
(April 2009)
I've lost 30 pounds since last September, I've been suffering from insomnia because the pain is keeping me up at nights, and I've had to drop my college courses for the semester. Dr. Aaron reorders all my blood work, and has small intestinal study done on me. Everything comes back clean.
(May 2009)
I wake up in the middle of the night with a stabbing pain in my side. I call for an ambulance and the driver informs me I most likely have a kidney stone. He can't give me any pain medication on the way there because he's afraid it might act with something I've taken for my stomach problems. Upon arriving at the hospital then make me go into the waiting room and ask me to fill out paperwork (keep in mind the pain has gotten to the point where my hands are shaking uncontrolably). Thankfully my mother arrives and does all the work for me. After another half a days and a few shots of morphine I pass the stone (I've already had a camera in my throat and bottom, I'll be damned if they're putting one anywhere else). Dr. BigHouse is now on my shitlist. Lesson: If you have a kidney stone of any size, go see a urologist.
(June 2009)
I schedule an appointment to follow up with the ER doctor to see what my stone was formed out of. Fortunately, because we have the best healthcare system in the world, I can't because he's not with my provider. But, my other doctors can order the results so all is well, I guess.
Dr. Aaron orders a HIDA scan to test and make sure my gallbladder is functioning properly. As can be expected, my gallbladder is functioning properly.
(July 2009)
For whatever reason, my stomach is feeling better. I take this as an invitation to eat as much food as possible and start putting weight back on. I'm still having the symptoms but to a lesser extent. I get the first full nights sleep I've had in a long time. I go back to Dr. OldMan and he suggests I see Dr. Breath about getting my allergies retested (I had allergy problems as a child, but grew out of them in my teenage years).
(August 2009)
I see Dr. Breath. Apparently I've developed a strong sensitivity to a decent portion of the food pyramid. She diagnosis me with EE and suggests I see a nutritionist to figure out how to restructure my diet. After so long of a wait and such an emotional rollercoaster I expect a parade or streamers to accompany my diagnoses. A few celebratory high fives was about it.
(September 2009)
A little bit of follow up this month, but I don't want to put the cart before the horse. Will rewrite and touch up a bit after revisiting Breath, OldMan, and Aaron.
I have recently been diagnosed with a rare condition called eosinophilic esophagitis (EE). When I eat certain foods my immune system floods my food pipe with a bunch of overzealous white blood cells that screw everything up. Unfortunately, it's a delayed reaction, so it seemed to me that there was no link between what I was eating and when I was getting 'attacked'. Thankfully I now know which foods cause my reactions, so eliminating them has allowed me to get well on my way to recovering.
My point? Well, I've spent the last year of my life going from doctor to doctor trying to figure out what was wrong with me. They ran the gamut of every test possible but EE is a low-flying ass that stays off the radar extremely well. Below are the trials and tribulations I have gone through to get to this point. I urge anyone who is having trouble getting a diagnosis and experiencing similar symptoms to ask your doctor about getting tested for EE - you may save yourself (and your mother) a great deal of grief.
Story Time:
Note - the names have been changed (childishly) to protect the identity of those involved.
(August 2009)
My heartburn has gotten out of control. Every meal is being followed by some artificially flavored chalk. I bought a large container of TUMS last month and I'm already out. I decided to go ahead and schedule a doctor's visit - asked around and Dr. BigHouse was recommended.
(September 2009)
Hurricane Ike delayed my trip to the doctor a bit. Finally got to see him and explained that I'm now having dizzy spells after eating and feeling nauseated as well. He gave me a trial of heartburn medication.
(October 8, 2009)
Went back to Dr. BigHouse and told him the heartburn meds wern't helping. He did some blood draws and an Ultrasound. All my tests were within range. He recommended I see a GI specialist, Dr. Saddam, about my stomach problems.
(October 12, 2009)
Woke up this morning with stabbing pains in my chest. Went to the ER for 7 hours. The nurse ordered Chest X-Rays, EKG, and a GI cocktail. Everything came back clean - they released me (still with chest pains) without every having the doctor see me. But, joy of joys, they gave me more heartburn medicine (apparently telling them you've already tried it is irrelevant).
(October 15, 2009)
Dr. Saddam performed and EGD on me (that's fancy medical lingo for sticking a camera down your throat and taking samples). My tonsils are enlarged, I've got white plaques lining my esophagus, and gastritis.
(October ?, 2009)
Dr. Saddam informs me I have a yeast infection in my throat. He gives me some antifungals to kill it, but says that this is typically a symptoms of a greater underlying condition. I ask him other causes and he says it's typically cancer, diabetes, or HIV. Cancer would've appeared on the EGD and diabetes had been ruled out by blood work. HIV required another blood draw and a painfully long two day wait. Thankfully, I'm negative. (Ladies!)
(November 10, 2008)
I revisited Dr. Saddam because I'm still experiencing bizarre symptoms after eating. Changing my diet hasn't helped and neither did more antifungals. Dr. Saddam does a metabolic panel and some other mumbo-jumbo and, as usual, everything is negative or in range.
(December 23, 2008)
Haven't been able to eat much. Trouble eating plain rice, trouble eating a banana, trouble eating oatmeal. I've lost 15 pounds over the last couple of months and the pain is worse than ever. Dr Saddam orders a CT scan of my abdomen. Everything comes back normal - except I have a kidney stone. Dr BigHouse says it's small and not to worry about seeing a urologist because I'll pass it without even feeling it.
(January 2009)
Went back to Dr. Saddam's - parents came with me because they are worried. He thinks it may be stress/anxiety/depression. I think it may be time to get some new doctors.
(February 2009)
Went to see Dr. OldMan. He ordered a barium swallow and suggested I see a different GI specialist - Dr. Aaron. Sadly, Dr. Aaron isn't convered on my insurance, so I have to see Dr. NoGood instead. (Aside: Dear Fox News, please stop saying we have the best health care system in the world. It's a load of bullshit and you know it.)
Barium swallow came back clean - no achalasia, no reflux, no nothing. Dr. NoGood is thoroughly convinced I have heartburn, despite me telling him I don't and that I've been on a slew of heartburn mediciations. We try prevacid, aciphex, kapidex, prilosec, nexium, and protonix.
(March 2009)
Dr. NoGood decides to perform another EGD and a colonoscopy. Other than inflammation in my upper GI the scopes show nothing out of the ordinary (then again that's taking his word for it because he only took one god damn picture through the entire procedure). He decides to treat me for SIBO and after no marked improvement tries to give me another heartburn medication.
At this time I decide to call up my insurance company and see how much it will cost me if I pay Dr. Aaron out of pocket. Turns out Dr. Aaron is covered by my plan, but only at one of his two locations. How is that possible? Ask the best healthcare system in the world.
(April 2009)
I've lost 30 pounds since last September, I've been suffering from insomnia because the pain is keeping me up at nights, and I've had to drop my college courses for the semester. Dr. Aaron reorders all my blood work, and has small intestinal study done on me. Everything comes back clean.
(May 2009)
I wake up in the middle of the night with a stabbing pain in my side. I call for an ambulance and the driver informs me I most likely have a kidney stone. He can't give me any pain medication on the way there because he's afraid it might act with something I've taken for my stomach problems. Upon arriving at the hospital then make me go into the waiting room and ask me to fill out paperwork (keep in mind the pain has gotten to the point where my hands are shaking uncontrolably). Thankfully my mother arrives and does all the work for me. After another half a days and a few shots of morphine I pass the stone (I've already had a camera in my throat and bottom, I'll be damned if they're putting one anywhere else). Dr. BigHouse is now on my shitlist. Lesson: If you have a kidney stone of any size, go see a urologist.
(June 2009)
I schedule an appointment to follow up with the ER doctor to see what my stone was formed out of. Fortunately, because we have the best healthcare system in the world, I can't because he's not with my provider. But, my other doctors can order the results so all is well, I guess.
Dr. Aaron orders a HIDA scan to test and make sure my gallbladder is functioning properly. As can be expected, my gallbladder is functioning properly.
(July 2009)
For whatever reason, my stomach is feeling better. I take this as an invitation to eat as much food as possible and start putting weight back on. I'm still having the symptoms but to a lesser extent. I get the first full nights sleep I've had in a long time. I go back to Dr. OldMan and he suggests I see Dr. Breath about getting my allergies retested (I had allergy problems as a child, but grew out of them in my teenage years).
(August 2009)
I see Dr. Breath. Apparently I've developed a strong sensitivity to a decent portion of the food pyramid. She diagnosis me with EE and suggests I see a nutritionist to figure out how to restructure my diet. After so long of a wait and such an emotional rollercoaster I expect a parade or streamers to accompany my diagnoses. A few celebratory high fives was about it.
(September 2009)
A little bit of follow up this month, but I don't want to put the cart before the horse. Will rewrite and touch up a bit after revisiting Breath, OldMan, and Aaron.
posted by TJH at
2:09 AM
3 Comments:
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Wow, I read your story and can't beleive how similiar this is to mine. I've been dealing with the same issues for almost a year now and have been put on every acid reducer medication known to man. Nothing has worked. I changed my diet, have the head of my bed propped up a foot, etc etc. My Gastro Dr just kept pushing more acid crap on me so I went for a blood test on my own to test for allergies and now have a referral to see an allergist. I am making the appt in a couple days (I cant now since its the weekend) but I am eagerly looking forward to hopefully getting some answers. I have started to take benedryl and although it makes me tired as hell, it has seemed to help with my constantly swollen tonsils,red throat, and throat closing up. My wife and I went to San Francisco this summer and I decided to "cut loose" and ended up feeling like shit the entire time there due to my "eat everything" diet. I ended up feeling sick and dizzy almost the entire time there. Anyways, I am wondering how you are doing now? Thanks again for posting...this made me feel a lot better.
(To anonymous - nov 7th)
I genuinely hope that they can figure out what's wrong with you.
I've changed my diet dramatically and while I'm still having symptoms, they are a lot better and I'm able to live with them. Still have occasional 'heartburn' and my running isn't what it used to be (my GI problems flair up after about the first mile), but compared with my worst days there is a huge difference. I'm enrolling back into school and I feel like everything I've lost in my life over the last few months is coming back to me. (Minus half of the food pyramid)
The most helpful test I got out of everything I went though was the EGD (upper scope) - they'll look at your upper GI tract with a camera and check for any irregularities. Also they can do a biopsy of your esophagus and stomach to check for elevated eosinophils in the tissue.
Don't be afraid to change doctors either. I went to my first GI literally in tears about my digestive problems and he wanted to give me antidepressants.
Again, I wish the best for you and let me know how the allergen tests come back!
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