Patient Comments: Eosinophilic Esophagitis - Experience

Question:

Please describe your experience with eosinophilic esophagitis. Submit Your Comment

Comment from: Thankful, 65-74 Female (Patient) Published: January 08

Fasenra injections for eosinophilic esophagitis have changed my life dramatically. No more choking, food impaction or esophageal spasms.

Comment from: BOYZMOM, 13-18 Male (Caregiver) Published: August 24

My 18 year old son was diagnosed with eosinophilic esophagitis a few months ago. He is on inhaled steroids and PPI (proton pump inhibitors). He did initially get better, but now is away at college and all of his symptoms have returned. Nausea, vomiting, diarrhea, severe abdominal pain, and he consistently feels the need to spit out his saliva. He has had two EGDs and a dilation. We are now moving forward with allergy testing. Looking back, he had symptoms all through his childhood.

Comment from: B.V., 19-24 Female (Patient) Published: July 03

I've had eosinophilic esophagitis all the way back at age 10 or even before. It runs in my family. Eating quickly, stress, and starchy textures cause dysphasia and/or vomiting, very painful. Lots of hiccups too. Started an elimination diet but stopped after taking out wheat and dairy didn't work. Skin-prick allergy test showed I'm sensitive to essentially everything they tested for. Drinking a lot and eating slowly helps. For me, it can be psychosomatic. Eventually I'll have to find out the root allergy.

Comment from: Jax, 45-54 Male (Patient) Published: April 16

I'm 50 years old and feel like the poster-child of eosinophilic esophagitis (EoE). I had it 20 years before they knew what it was or had a name for it. I think I was the 1st one with the EoE label from my gastroenterologist when they coined the term. I've always had food allergies. The scary ones are the anaphylactic reaction to food where my throat tries to close up. I have to drink large quantities of soda to keep it open and dilute the food. I probably should have used an EpiPen many times, but I would just guzzle soda and maybe the natural adrenalin from panic helped me. Typically, 20 minutes of drinking and it subsides. Interesting that water makes that reaction worse, but soda (Dr. Pepper usually) helps. At the same time, I have EoE which is a different kind of reaction that slowly closes up the esophagus and makes it very difficult to eat. I've had esophageal dilation (where they stretch your esophagus open) about every 3 years since I was 20 (30 years of them). If it wasn't for that I would've probably been dead at 25. My stricture was always way up high so food stuck would stop breathing. Thankfully they have dilations down to a science now-a-days. When I first had it done it was barbaric. I was awake and fighting the doctor as he crammed the tube down my throat. If you have trouble swallowing I highly recommend the procedure. It usually helps a lot and they've found the risks are less than they always thought since they do so many now. For the last few years my EoE has gotten worse, and I'm now on budesonide (swallowed steroid). It doesn't seem to help much. I'm looking for the best allergist around so I can get very serious about finding all the things (which are a lot) I'm allergic to and eliminate them. I'm tired of risking my life every time I eat. Hopefully I'll be able to follow up and tell you it worked.

Comment from: Peppermint patty, 45-54 Female (Patient) Published: May 15

I am 53 years old and I have had issues since I was 17. I have been on omeprazole and ranitidine for over 20 years. Eight months ago I started to have such severe chest pains I was in the emergency room 5 times. I got a new gastroenterologist and with an endoscopy I was diagnosed with eosinophilic esophagitis. I was put on nitroglycerin short term. It helps open the swollen esophagus. I was also put on budesonide mixed with honey. This is a swallowed steroid (watch out, CVS doesn't want to fill it). It worked well but didn't end my pain. My doctor added sucralfate. That helped more but again still didn't cure me. I went to get allergy tested for environment and food. I found out I am allergic to all environmental things and strange foods. I am allergic to lettuce, pea, asparagus, oranges, oregano and many more foods. I am in shock. I thought lettuce was water. After taking out all the food allergens I am feeling better, still but not totally cured. I highly suggest you all get food tested. It's hard to stay away from foods I know are 'good' for me but it has helped. From someone who has been living with this horrible problem for over 30 years, good luck to all you young people. Take my information to your doctors and if you can find a medical practice that also uses holistic medicine, it is better to combine western and eastern medicines. You need a combination of many things to cure yourself. Good luck.

Comment from: EE in Colorao, 55-64 Male (Patient) Published: July 11

Flovent helped me with my eosinophilic esophagitis within 2 weeks. Due to insurance coverage, I had to switch to QVAR.

Comment from: worriedmom, 13-18 Male (Caregiver) Published: May 05

My son is 15 and was just diagnosed with eosinophilic esophagitis. He has it throughout his digestive system. It was found after a biopsy. The reason for the endoscopy was he had a perforated duodenal ulcer a couple of weeks ago and had emergency surgery. He started an elimination diet yesterday, which for a 15 year boy is going to be hard. He has always had problems swallowing, and lower back pain recently. He has always been an extremely picky eater and struggled to gain weight. Now he is losing weight. He has had lots of joint issues and broken bones also. Looking for all the information we can find. We are still trying to figure out what is going on with him and what's causing all of this.

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Comment from: Worried mother, 7-12 Female (Caregiver) Published: November 15

My son has eosinophilic esophagitis and was recently diagnosed at the beginning of this year. I have been doing my research about it and cannot seem to find any answers as to why my son has prolonged diarrhea symptoms. As this disease seems to be a primarily upper esophageal issue I am concerned as to why he has the added symptoms. He also has vomiting and abdominal pain. He will get sick at times for weeks and nothing seems to help to ease his pain. We have been giving him prescribed acid reducing medications which have helped reduce his symptoms for several months, however now his symptoms are spiking up.

Comment from: J., 35-44 Female (Patient) Published: June 01

After pills and pills that never worked for heartburn and chest pain, I was diagnosed with eosinophilic esophagitis after 12 years of problems. I finally got a food allergy test where they put food patches on your back for three days. With this method, they finally diagnosed a chicken allergy. Once I stopped eating all poultry products, all symptoms were gone after one month! Hang in there and persist to find the culprit. I have not taken any medicines, not even an acid reducer in over a year!

Comment from: Cullensmum, 35-44 Female (Caregiver) Published: March 30

My 15 year old son has been diagnosed with eosinophilic esophagitis, and we've done the allergy testing and it came back negative (food and environmental). We've had 2 biopsy procedures and he's been taking Nexium 40 mg daily since late November late year. The last biopsy showed there were still changes going on in his throat. We're now heading back to see the specialist tomorrow to see what our next move is. I just wish I knew what was causing it!

Comment from: EoEchick, 55-64 Female (Patient) Published: February 17

I have confirmed diagnosis of eosinophilic esophagitis, after endoscopy, dilation and colonoscopy, and nonfunctioning gallbladder removal. Currently I feel fabulous. My best advice is to get skin prick allergy test. I strictly removed all confirmed allergens from my diet (soy, dairy, tree nuts, and gluten). Inhaled confirmed allergens (grasses, pollens, dust mite, etc.), who knows, can't stop breathing, guess time will tell. I keep on hand swallowed steroids, used for approximately 3 weeks. Good result. But I feel allergenic food elimination is vital to feeling so much better. I still take Prilosec generic every day with super enzymes 1 per day. Can't tell you how much better I feel every day! Hope this helps anyone going through this right now, research on web may help.

Comment from: Michelle, 25-34 Male (Caregiver) Published: February 02

My husband has this eosinophilic esophagitis. It's terrible. He is allergic to almost all fruits and vegetables. He can't eat healthy because of this problem. He's getting older and heavier as a result. The acid reflux medications don't really help. He needs an endoscopy every year or two to release stricture in his esophagus and break up scar tissue. I'm really worried that he will end up with cancer because of this. Now every time he gets sick, his sore throat and coughing are much more painful. It's frustrating that there is nothing they can do about it.

Comment from: Katie, 19-24 Female (Patient) Published: October 27

It all started when I started having random bouts of severe chest pains that mostly occurred on my right side. After making multiple trips to the emergency room and having tons of bloodwork, no one could find out what was wrong with me. They first thought it was my heart or possibly a clot in my lungs. They even checked on my gallbladder and pancreas and nothing would show up. I finally visited a gastroenterologist to have my gallbladder checked and she decided that my symptoms were quite a bit different than the typical gallbladder/pancreas problems. I had an upper endoscopy done and sure enough, eosinophilic esophagitis showed up in the biopsy. I am now on Prilosec 20 mg and a Flovent inhaler for treatment. Symptoms have dramatically improved, but I still have days where my chest pain returns if I eat something I shouldn't have or if I'm under a lot of stress. Lately I was on doxycycline for a respiratory infection and it flared my acid reflux up so I'm going through some pain right now. I have quite a lot of food allergies so it's incredibly difficult to find out which is the trigger for the pain. The only thing I haven't ruled out is wheat, which I'm about to try going wheat free to see what happens. I'm a 20 year old college student so it's hard to keep the stress levels down at times, but I have noticed it flares up more when I feel stressed, which is aggravating because the pain stresses me out at times, which only makes things worse. Very annoying disease, but I'm so glad to have found a doctor who knows what's wrong with me. I wish the best of luck to anyone with this condition. It's not an easy thing to live with.

Comment from: Adamo41, 35-44 (Patient) Published: September 30

I have eosinophilic esophagitis; was diagnosed earlier in the year. I am on pantoprazole and Flovent. My symptoms went from feeling like I had major chest pain and a constant burning in my throat, to feeling better and then now I feel like my throat is constricting and it won't stop day or night. I've tried the elimination diet for a week at a time with each food group and no success. I wonder if there is anything out there that would make the constricting feeling go away. I feel like I am going to throw up and I can't breathe.

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Comment from: Millakaus, 35-44 Female (Patient) Published: September 17

I was just diagnosed with eosinophilic esophagitis. I had trouble swallowing for years. This past May I ruptured my esophagus and almost died. Prior to this rupture I had several scopes and not one doctor could find anything wrong. I finally got a team of doctors and am glad that I have eosinophilic esophagitis as opposed to the alternative diseases that could have caused my rupture. I still need to see an allergist and find out what I'm allergic to. Right now my doctor told me to eliminate wheat and dairy. Good luck everyone. This has been a long road for me and I now have a diagnosis and a start of a plan.

Comment from: BuckeyesFan, 19-24 Male (Patient) Published: July 24

I don't actually know if I was diagnosed with eosinophilic esophagitis (EE) but from what I read here and from the blood work I had done it seems like it is what it was. I had two separate choking incidents within about 3 weeks, thus I finally decided it was time for the doctor visit. I had an endoscopy done and my lower esophagus was actually way smaller than it should be and they had to inflate it. I am not exactly the same as other EE patients but I have been started on a regime of omeprazole which so far seems to be working.

Comment from: Julien, 35-44 Male (Patient) Published: July 15

I'm 35 and I was diagnosed with eosinophilic esophagitis EE a few months ago. I've just had some allergy tests done and the result is that I'm allergic to milk. So I've got to go on a dairy-free diet for a month and have another endoscopy to check if it makes a difference. So no more milk, chocolate, cheese, etc., for me. I'll miss it but I'll just have to get used to it. I believe I've had EE since I was a kid. Now that I think back on it, I remember getting a feeling of having something stuck in my throat, especially after eating some types of cheeses. I knew there was nothing stuck but it was uncomfortable and could last for 20 to 30 minutes, as if my throat was swelling on the inside. Every once in a while I would get a piece of food stuck. I didn't choke, could still breathe and talk normally but could not swallow anything at all, even liquid (including my own saliva). When I was younger, the food blockage often dislodged after a few minutes, usually when I forced it down with another piece of food, or by trying to swallow water. My parents always put it down to me not chewing my food enough. But as the years went on, when something got stuck it seemed to be stuck for longer (sometimes as long as 30 or 40 minutes and it was really uncomfortable. Until last October when I had my worst episode ever and I had food stuck in for 48 hours. As I couldn't swallow, I couldn't eat or drink anything for 2 days. I had to go to Accident and Emergency to go on the drip as I was getting quite dehydrated. And then finally after 2 days it went down on its own (10 minutes before I was due to see a gastroenterologist). It's after I went for a couple of endoscopies that the doctor diagnosed me with EE.

Comment from: Sian, 45-54 Female (Patient) Published: June 11

I have just accidentally stumbled upon this article about eosinophilic esophagitis and for the first time have found something that accurately describes my symptoms of approximately 20 years. Usually, it is within the first couple of mouthfuls of food that my attacks occur and never with puddings! I get the feeling of choking, increasing pain in chest, dizziness and what feels like a huge amount of saliva. At this point it is extremely difficult to even swallow water. Afterwards, I feel a bout of tiredness. My husband and I have worked out that if he slowly and firmly rubs my back close to spine in area that I indicate each time it happens, then this dissipates the pain; I feel a sort of slow bursting of a bubble feeling and the problem calms down. Contrary to all sorts of advice, I also find that drinking a glass of ordinary sparkling water (not sugary, flavored) before a meal seems to stop the attacks occurring, which might relate to reflux, but everything else sounds like eosinophilic esophagitis. I was once given coca cola during an attack and the result was frightening. I thought I was going to choke and die (not being a drama queen - this was an extreme reaction). My father, 79 years old, also suffers with the same symptoms. I have been tested by various specialists (videofluoroscopy, barium meal, electrodes on toes, MRI, etc., all advised by doctors, not my request) and told that I have a form of reflux, but not a recognized one.

Comment from: WorriedMom, 7-12 Male (Caregiver) Published: May 27

My son was diagnosed with eosinophilic esophagitis (EE) when he was 6 years old. We did the steroids and had the allergy tests. His allergy test did not show anything other than the medical tape they used. He is now ten and can't swallow steak, ribs and those sort of things. He does ok with chicken. He also has a cough that doesn't go away. He is scheduled for another endoscopy in June. I'm sure it is his EE again. He is on Nexium to try and see if it will help. But, I think we are back to square one.

Comment from: tejasg, 55-64 Male (Caregiver) Published: April 09

As a 63 year old gastrointestinal physician with reflux symptoms since the age of 20, I was convinced that GERD was my diagnosis. Prescription with proton pump blockers such as omeprazole would help. I also have a host of food allergies, including legumes, peanuts and walnuts. After an endoscopy with biopsy 2 years ago, I was diagnosed to have EE (eosinophilic esophagitis). I was surprised since I avoid all foods I am allergic to. I had started consuming cashews as a 'healthy diet' a few months prior to my gastroscopy. I knew I wasn't allergic to cashews, and could not figure out why my GERD symptoms had worsened after beginning my cashew diet. Looking at the label, I realized that the cashews had been roasted/prepared in peanut oil. I stopped eating that brand of roasted cashews and have stopped using omeprazole since my symptoms have disappeared.

Comment from: Nate M., 19-24 Male (Patient) Published: March 06

I am 21 years old, and I was diagnosed with eosinophilic esophagitis (EE) two years ago when I lodged a chunk of beef in my throat. I've had problems with swallowing from at least age 10, but never had something stuck in my throat for more than 10 minutes until my episode at 19. I've always made sure to have liquid with meals and am not aware of any food allergies, so I am as yet uncertain to what foods may cause the problem. I also had an incident last year where I had meat stuck in my throat for 17 hours. Luckily, it dislodged itself in the emergency room waiting room. My pain and panic endurance are higher than average after years of this experience, and at least I drink more water than otherwise.

Comment from: Sailor girl, 35-44 Female (Patient) Published: March 02

I am a 44 year old female that was diagnosed with eosinophilic esophagitis (EE) 10 years ago after going to the emergency room (ER) with food impacted in my esophagus. After having an endoscopy with dilation and biopsy my gastroenterologist started me on a regimen of 40 mg omeprazole and Flovent swallowed, not inhaled. This seemed to help with my symptoms but I still continued to have swallowing problems and had to have the esophagus dilated several times. I was then referred to an allergist who found out I was allergic to peanuts, cashews, wheat, oats and pears. These are things I had eaten all of my life and had no idea I was allergic to. Since avoiding these allergens and continuing with my medications my symptoms have greatly improved. I had a routine endoscopy last fall and everything looked good. No dilation needed. I have two sons ages 17 and 10 who are both now exhibiting signs of this disease.

Comment from: trainerboy, 25-34 Male (Patient) Published: December 10

I am 31 years old and was just diagnosed with EE (eosinophilic esophagitis). Since a teen I had issues with swallowing food and pills and always needed a lot of liquid when eating. There isn't a worse feeling than knowing you're probably going to need to force yourself to vomit up some stuck food. I procrastinated and didn't seek treatment until one night while eating steak my esophagus tore because it was less than 8 mm in diameter at this point. Don't procrastinate on this. It could save you a few weeks in the hospital and USD 65K, and maybe your life.

Comment from: mjbkdg72, 35-44 Female (Patient) Published: October 10

I was diagnosed with eosinophilic esophagitis (EE) a few years ago and given Flovent, 2 squirts/twice daily. Although the Flovent worked great for the EE, no more chest pains, throat clearing, heartburn, I had side effects. They were insomnia and weight gain. I have, through trial and error found that citric, barbecue sauce, red sauce (ketchup etc.), are foods that affect me the most, so I try to avoid those foods. I have also found that drinking lots of water, especially after eating seems to help.

Comment from: Sharon, 55-64 Female (Patient) Published: October 10

I was diagnosed with eosinophilic esophagitis (EE) two years ago after having it for more than 20 years. No doctor had figured it out before the last one did. What had been frustrating was the way the previous doctors just shrugged it off when there wasn't a stricture or ring to blame it on. Anyway, I was very happy to finally know what it was and how to fix it. I used the Flovent inhaler for six weeks and the problem went away. What a relief it is to go out to dinner and know you'll be able to swallow your food. The cure lasted for about 8 months and then I did another round of six weeks on the inhaler. I don't plan on doing an elimination diet. Using the inhaler for six weeks every 8 months works just fine.

Comment from: dazzlingd, 35-44 Female (Patient) Published: July 31

I am a 39 year old female who got food stuck in my throat (it never goes down) occasionally 4 years ago. Eventually it progressed to a daily event, and I had chronic voice loss and sore throat. An endoscopy provided me with an eosinophilic esophagitis diagnoses, and swallowed fluticasone sprays and Prilosec held me for a while. But after eating sushi last week, it flared up badly. I started a NEWSSROOM (the only way I can remember nuts, eggs, wheat, soy, shellfish, rice, milk) diet and starting budesonide mixed with Splenda, swallowed twice daily, instead of the fluticasone and it seems to be helping.

Comment from: BeckyinCA, 55-64 Female (Patient) Published: June 30

I am a 56 year old female who started having swallowing issues about two years ago. In the last six months, it was getting worse; food would get stuck and I would have to vomit since I couldn't get the food to move. I also had chest pain when it happened. After having an endoscopy, I was diagnosed with eosinophilic esophagitis (EE). I was then seen by an allergist who told me to avoid gluten, dairy products, all nuts and soy. I had another endoscopy three months later, and everything was normal. I also was put on Prilosec. I'm happy that everything seems fine now and I haven't had any issues for over two months.

Comment from: Laura E., 3-6 Female (Caregiver) Published: May 02

My 5 1/2 year old daughter was diagnosed with eosinophilic esophagitis (EE) when she was 20 months old. She was biopsied and allergy tested by the Atopy patch method. She ended up reacting to all animal products, corn, rice and green legumes. We eliminated all of the indicated substances from her diet (and a few more as her body indicated), and she started growing. We have been able to avoid all medicine intervention in her case. Her treatment is strictly dietary. She is now a very healthy child who is looking forward to kindergarten next year. Good luck to everyone dealing with this infuriating disease, may you find your answers as we have!

Comment from: IowaGuy85, 25-34 Male (Patient) Published: April 14

I was diagnosed with eosinophilic esophagitis (EE) about 5 years ago, and am currently 28. I always assumed that my food allergy was random, because I would choke on different things, and be fine with that same thing the next. I recently started a diet, and eliminated pop and processed foods, switching to fruits and vegetables. I discovered, with an emergency trip to the hospital, that orange/citrus was a major culprit. I used to drink a lot of Mountain Dew, whose main ingredient is concentrated orange juice. Since eliminating oranges from my diet, I have gone from choking every other meal to not having an issue at all.

Comment from: Paul, 45-54 Male (Patient) Published: March 31

I was diagnosed with eosinophilic esophagitis (EE) about 4 years ago. After many allergy tests were basically inconclusive, I found that taking Multizyme took care of my problems in most cases. I still could not consume my culprits (eggs, beer, wine and champagne). About 6 months ago, I discovered that after doing the Daniel Fast for 2 weeks, I could resume eating everything that caused me problems (mainly anything with eggs), without taking any medications. After having some champagne, my symptoms have returned, so I am planning on doing the Daniel Fast again (the full 3 weeks this time!). Hope this helps most EE sufferers!

Comment from: Silver, 35-44 Male (Patient) Published: February 07

I am 41 and have just been diagnosed with EE (eosinophilic esophagitis). I have had it since I was a kid and have had several endoscopies. I have had food stuck twice that have needed medical attention. I used to force the food down with liquid but stopped after blocking my airway twice with the piece of food. I now "swallow air" to clear the food and find it works the best. I have several food allergies that cause my EE. I have just been put on Flovent and hope that it will help. I am thankful to my latest doctor who gave me a diagnosis and treatment.

Comment from: Portland Dude, 25-34 Male (Patient) Published: January 13

I am 33 year-old male. I was diagnosed with EE (eosinophilic esophagitis) a few years ago after experiencing repeated swallowing trouble. My EE is caused by acid reflux, and my symptoms disappear if I take a PPI (proton pump inhibitor) or if I follow a gluten-free diet. If I follow a strict gluten-free diet, I don't have to take the PPI and my symptoms are eliminated.

Comment from: Gina, 45-54 Female (Patient) Published: January 02

I am 49 years old. Since I can remember, even as a young teenager, approximately an hour after I would eat eggs, not every single time, I would get a feeling in my throat like food was stuck there and on the inner right side of my sternum I would get pains. In order for it to stop or get any relief at all, I would drink a Diet Coke. It sounds dumb, but the carbonation of the soda would make me belch and give me some relief from the pain. The pain was intermittent then for approximately 48 hours. I had an endoscopy in 2009 and was told there was nothing wrong. Two weeks ago after going out to breakfast, the pain in my chest from the eggs was the worst it had ever been and lasted for days. I had another endoscopy done a week and a half ago, was diagnosed with eosinophilic esophagitis and prescribed prescription antacids and an inhaler of medicine. I will be getting tested for food allergies next week.

Comment from: Tammy W., 13-18 Female (Caregiver) Published: December 16

My son who is just shy of being 15 years old was diagnosed with EE (eosinophilic esophagitis). He has been put on medications and we have done elimination diet of corn, soy, milk, eggs, peanut, tree nuts, carrots, beans, peas and celery. He is allergic to all trees and weeds etc. He is still having issues with vomiting and feeling like he has something stuck in his throat. I am very concerned. This is scary.

Comment from: Sambo, 35-44 Female (Patient) Published: November 14

I have been suffering with EE (eosinophilic esophagitis) since my early twenties. It's been an occasional episode of food getting stuck in my throat, which would release quite quickly. Over the years this has worsened and now it happens pretty much every time I eat. The food gets stuck in my throat and my body behaves as though I am choking. I produce a huge amount of saliva which I can't swallow so have to spit out. I have tried forcing the food down with various types of drinks to no avail. I can't even force the food back out by vomiting. I am able to vomit food from my stomach but not the "stuck" piece, which remains firmly in place. I suffer with heart burn regularly and an irritating cough, especially when lying down. I have tried the steroid pump swallow, the proton pump inhibitors, antihistamines, allergy testing and elimination diets which have highlighted certain allergies but not enough to alleviate the issue. I am pushing to be put on an elemental liquid only diet and start from scratch. Fifteen years is far too long to be suffering with this and the doctors seem only to know the same amount as I have been able to find out for myself online.

Comment from: Sean, 19-24 Male (Patient) Published: November 14

I am a 19 year old male and I was diagnosed with EE (eosinophilic esophagitis) about 2 months ago. I began having serious symptoms in February of 2013, the last stretch of my senior year in high school. I never had any issues with swallowing, the symptoms I experienced were a severe sensation of the need to gag and severe heartburn. I never did gag much because I kept telling myself that it was simply anxiety. I did not think I was going to be able to finish out my high school career with having to throw up all of the time or continue on to college. It took me 6 months to realize that it was not anxiety and to go see the doctor about it. The endoscopy showed that I had multiple ulcers on my esophagus from the daily heartburn. After being on Flovent to reduce the inflammation and heartburn medication and an exclusionary diet I feel so much better. I still have a bit of residual anxiety about it though, but I am really working on it. I also had allergy testing done and it showed that I was allergic to yeast, oats, barley, and rye. Doing all of this has helped so much in not only making me feel physically better but also putting my mind at peace knowing that this feeling wasn't all in my head.

Comment from: 19-24 Male (Patient) Published: October 22

I am 21 years old and was just diagnosed with EE (eosinophilic esophagitis). Since my EE was so bad and not taken care of at a young age it traveled from my throat and into my stomach. That caused a lot of issues for me when eating food. If something didn't bother my throat it would bother my stomach or the opposite. I have been on Elecare for about 10 months now and have gained close to 20 pounds (weight gaining has always been an issue for me). I no longer throw up or have stomach pains. I have gotten color back and look healthy. I tried all of the steroids and none of those worked for me. The formula Elecare has been a life saver for me.

Comment from: kmesaaz, 65-74 Female (Patient) Published: November 02

Fortunately, my eosinophilic esophagitis (EE) is under control. But my EE (absolute) scores on a CBC with differentia/platelet are out of range; 4 times higher than the high end score. The testing was done because I have had a nasty rash going on 4 months. This confuses me no end.

Comment from: EEMom, 13-18 Male (Caregiver) Published: February 20

My son was diagnosed with eosinophilic esophagitis one year ago at age 16, although he was displaying symptoms as early as 4.His symptoms were excessive chewing, pocketing food in cheeks and reluctance to swallow without liquids. We tried prednisone, and two elimination diets. Now on budesonide "slurry." He is going this week for 5th scope in 13 months.

Comment from: Jenn, 25-34 Female (Patient) Published: January 31

I've had EE (eosinophilic esophagitis) since high school but wasn't diagnosed until 15 years later when it got much worse. I have found that there is a strong connection between my stress level and the EE. When life is good and stress is low so is my difficulty swallowing. Also, I had a lot of success reducing my acid reflux by taking apple cider vinegar regularly.

Comment from: Frustrated, 19-24 Male (Caregiver) Published: January 08

My son was diagnosed with EE (eosinophilic esophagitis) at 17 after two years of weight loss and he was almost bedridden. After a few months on Neocate Splash he began to eat and gain weight with a very restricted diet. About 4 months ago he lost his appetite and in turn has lost about 20 lbs. He really doesn't have a swallowing issue.

Comment from: sagtech, 55-64 Male (Patient) Published: November 18

I have had EE (eosinophilic esophagitis) for the past 7 years. It became prevalent 5 years ago, restrictions went down to 12mm. After 8 months of dilatations to 20mm to normal, taking 110-220 Flovent seemed to help a lot. Two to three puffs twice a day and instead of inhaling, I swallow the Flovent.

Comment from: yellsmom, 13-18 (Caregiver) Published: October 15

My daughter was diagnosed with eosinophilic esophagitis when she was 14. I refused to allow her to use steroids. That only covers up the problem. We went through the 6 food elimination process, which was a very hard and long process. Her problem is milk, as long as she has no milk she has no problems or symptoms

Comment from: Lucy, 45-54 Female (Patient) Published: October 08

I have been diagnosed with eosinophilic esophagitis (EE). My gastroenterologist told me to use Benadryl, Nexium and Flovent. But my primary care physician drew labs to let me know exactly what to avoid in my diet. I'm highly allergic to gluten, rice, white potato, soy, eggs and peanuts. I'm eliminating these from my diet and have lost 15 pounds in 3 weeks (previously impossible), and my choking has resolved. Ask for labs. Don't cover symptoms with medications. I think it's better this way.

Comment from: Babby, 35-44 Female (Patient) Published: December 02

I have been having swallowing problems for about one year. One day, I ate some Swedish meatballs with noodles, and the meatball was jammed in my throat. No one knew what to do because the food was not blocking my airway. I was frustrated because nothing not even water would budge the meatball. About three hours later, it went down on its own. Fortunately, I was already scheduled for an endoscopy procedure a few days later. The doctor found the Schatzki's Ring and biopsied the area. On a follow-up visit, he told me I have esinophilic esophagitis. I was started on Flovent. It made things better but did not prevent the swelling. I began to have chest pain. I thought I was having a heart attack. It turns out that my EE was causing the chest pain. This amazed me. I have found that I cannot eat anything white like bread, rice, pasta (white and wheat), potatoes or things like potato bread (my favorite). I have to carry an Epi Pen and Benadryl with me at all times. I am scheduled to see a dietician in a few days. I don't know how to cook without the above listed items. I can eat corn products. So for Thanksgiving, I made cornbread stuffing. I find that I can eat meats if I don't eat the items listed above. I can't eat biscuits. I am a southern gal, and I think this is a sign of the end of time!

Comment from: kcmyers, 35-44 Female (Patient) Published: November 17

I am a 38-year-old female who has been diagnosed with EE for about four years now. I have had multiple dilations, and my esophagus has been torn three times. One time, I landed in the hospital for about a week. The Flovent didn't work, and I have been on and off Prednisone for the last four years. The best advice I can give others is be patient with your diet and try to be attentive to your body. I have changed from Prevacid to Protonix since the heartburn never goes away. As well, I radically changed my diet. My dilations are now down about every three to six months. As soon as the swallowing becomes difficult, get back on your steroids as soon as possible so that you can attempt to get the swelling under control.

Comment from: Lisa M. , 0-2 Female (Caregiver) Published: November 17

My son is 2-and-a-half years old and was just recently diagnosed with eosinophilic esophagitis (EE). My son has vomited from birth. He also has severe eczema, asthma, and has had pneumonia three times, and seasonal allergies as well. I have been to every specialist under the sun and my son is constantly sick between EE and asthma. The only saving grace right now is that he will vomit and still sit down to eat typically, although the last few weeks he has been starting to refuse to eat, especially meats. No allergies have come back positive after performing skin tests for about 30 foods. The allergist gave us no hope and brushed it off saying we just have to deal with the symptoms. He has been on steroids and Prevacid. Hopefully he will get some relief. I was glad in an odd way that there was a name for what my son had. We were starting to think we were crazy that so many things could be wrong with him. Most people have no idea how it is a quality-of-life issue for the little ones that have to live with EE or the pain a parent feels to see there child suffering.

Comment from: KellyB, 35-44 Female (Patient) Published: October 16

I am a 38 year old woman just diagnosed with EE. I have taken antacids several times daily as long as I can remember. Not necessarily for a burning feeling, but more for the pressure. Last month I had a severe attack and knew it was that same feeling but so much worse. I ended up in the emergency room after three days of not being able to eat or drink anything and sleeping sitting upright with a heating pad on my chest and another on my back. The pain was severe and scary. After six hours of testing (for a heart attack, pulmonary embolism, etc.) a CT scan with contrast dye showed my severely swollen esophagus. Prior to that I had just started a diet program that is very high in lean protein, low in carbs and includes a weekly hCG (Human chorionic gonadotropin) injections. I'm not sure if the increased protein levels or hormones in my system triggered the severe case, but I'm glad it lead to the endoscopy and biopsies that ultimately allowed the doctors to properly diagnose me. I'm already on Protonix (80mg daily) and it seems to help a lot! I've only taken antacids a few times over the past week, instead of a few times a day! I go to the doctor next week to see about an anti-inflammatory, etc. I have had allergies and asthma for years, so this makes a lot of sense to me. I look forward to learning more about this.

Comment from: protective mommy, 0-2 Male (Caregiver) Published: October 16

My 21 month old son was diagnosed with EE 6 months ago. We knew there was something wrong from the time he was 6 months old. He has many food allergies: milk, wheat, eggs, beef, yeast, peas, but he was throwing up food we knew was safe for him. At 15 months, we finally had the referral when he had lost 3 pounds at his 15 month appointment instead of gaining and the GI doctor told us he had EE. He was on Flovent for a few months and did great! After about 5 months, he started to occasionally show signs that concerned me, but I think we wanted so badly to believe that he was okay that we denied it. We are now on Prednisolone for the past 5 days and he is eating again. But, it gets to the point where we almost have to reteach him how to eat again. He is so fearful of food and what it might do to him. He puts his hand up to his throat and says, "ow". It is awful! This is a terrible disease and I do hope they can find out what is causing it or can find something to cure it completely.

Comment from: Afgex, 25-34 Female (Patient) Published: September 26

On Thursday morning I went to the dr and had multiple allergy tests performed. Thursday night I took my normal doxycycline antibiotic and went to bed. I woke up at about 3:00 am with severe heartburn. I have not had heartburn since I was pregnant over 3 years ago. I have had severe heartburn pain and pain swallowing food for 3 days now. I have taken every OTC medicine possible including a bottle of Mylanta, several glasses of baking soda and water, TUMS, Pepcid, and Zantac. I am a healthy 30 year old female. I have read your article and am wondering if I didn't swallow the antibiotic completely and it dissolved in my esophagus or if I am having an allergic reaction to a test that was performed. I'm going to take some Benadryl now just in case it will provide some relief. I can't wait until Monday when I can call on my doctor and make an appointment. I think this is the most pain I can remember feeling.

Comment from: M.L., 45-54 Female (Patient) Published: September 26

I just found out today that I have EE. I've been having gastric reflux for a couple months and then had a couple episodes of feeling like something was stuck in my throat. Initially, I was prescribed Prilosec but am now on Protonix. It's helped but has not entirely eliminated the problem. Two weeks ago, I had an endoscopy and had my follow-up appointment with my gastroenterologist today. He had taken tissue samples to biopsy during the procedure. The biopsy was + for EE. He prescribed Flovent, which I just dropped off at the pharmacy. I also am going to be seen by an allergist next month for extensive allergy testing. I do suffer from a lot of sinus drainage that I've been treating with a neti pot to cleanse my sinuses as suggested by my family doctor. The sinus washes have been very helpful in reducing my sinus congestion but has not eliminated it entirely. My doctor thinks the EE may well be caused by a food allergy. I am hoping the Flovent will be helpful and am hopeful the allergist will be able to identify a cause for my EE. I just hope it's not a gluten allergy because I love bread and pasta.

Comment from: ufgatoralum2004, 25-34 Male (Patient) Published: September 26

I am a 26 year old male who just today was diagnosed with EE after 6 years of trying to figure out what was wrong with me. The symptoms began when I was in college. About every 2 months or so I get food stuck in my esophagus and on every occasion I have to spit it out. Usually I can go right back to eating and drinking, but in some instances I have been unable to swallow for a few hours after having an episode. About a month ago, I finally had an episode that put me in the hospital. While on a weekend vacation, I got a piece of steak stuck and spit it out as normal. However, I was unable to swallow again, even my own saliva, for 3 days. I became severely dehydrated and lost 20 lbs. Once my esophagus opened back up I went through a series of barium swallow tests and a couple EGDs for them to finally come to this diagnosis. I have to say I am relieved just to finally know what is wrong with me. For those of you already being treated with the fluticasone propionate, has anyone had any bad reactions to it. I have read that it can cause thrush, a white fungus in your mouth. I am relieved to have my problem fixed, but I am not too excited about the possible side affects.

Comment from: 19-24 Female (Patient) Published: September 17

I am a 21 year old female who was recently diagnosed with EE. This has been an on going problem through out my life but I always thought that it had to do with just taking bigger bites than i should be taking. My doctor is now confused however because my symptoms are the same as most patients but i have one more symptom that does not make sense. Along with a not being able to pass food properly i also regurgitate about 50% of my food. However I do not do this voluntarily. Does anyone else have these problems? I have had asthma my entire life and have had eczema multiple times through out my life which has been know to correlate with EE.

Comment from: Terri, 35-44 Female (Patient) Published: August 26

I am a 36-year-old female, recently diagnosed with eosinophilic esophagitis (EE). I have had problems swallowing for more than 16 years. I have had three different barium swallows over the course of those 16 years, and the doctors only said that I probably had some type of stricture and gave no recommendation on how to fix the problem. I could not take large pills, or talk while I ate, or even participate in family meals, without getting food stuck, which caused severe pain until it came up or went down. I only suffered from heartburn during the tail end of my pregnancies. I decided to try one more time, and the doctor recommended an endoscopy. It was awesome: He found out I had a Schatzki ring, dilated it and took tissue samples that showed I had EE. The dilation alone fixed the big problem. I am sure my EE was caused by the constant irritation of food getting stuck, and or vomiting due to food getting stuck. I did have hay fever that I have been treated for, and I am on Flovent and Prilosec. I can now participate in family meals. I don't have to scout out the restroom in restaurants for emergency food problems. I am enjoying eating again.

Comment from: Let me eat , 25-34 Male (Patient) Published: August 26

I am a 34-year-old male and started having difficulty swallowing in high school. I had been diagnosed with an esophageal web at the top of my esophagus and a ring near the bottom after a barium swallow in 2001. I was told the only treatment was periodic dilation. Nurses and office personnel often stated I was young for these dilation procedures. The dilations didn't really seem to help either. My health insurance changed and I wanted to try another doctor. This time he suspected eosinophilic esophagitis (EE) and performed a biopsy. I was diagnosed with EE and was given the Flovent inhaler with Fluticasone. I just started taking the medicine, and I am very hopeful.

Comment from: Joe, 35-44 Male (Patient) Published: August 20

I am a 43 yr old male recently diagnosed with EE. I have had no recurrences in the six months since my dilatation and Nexium Flovent treatment. My first difficulty swallowing was at age 11. At 16 I had barium swallowed/x rays but nothing showed up. At 17 the radiologist had me swallow a marshmallow first then drink the barium--it showed a stricture. Over the next 25 years I would be dilated every 3-5 years. The last 13 years I was on Zantac. The symptoms (difficulty swallowing—typically, rice, tuna fish, etc., sticky things not pieces of meat) would return steadily over time until I would get dilated again. Six months ago I went to a new GI who immediately thought it sounded like EE and did the biopsy which showed the increased levels of eosinophils. It's nice to know the cause and hopefully further treatments will be needed less frequently

Published: July 30

My 8-year-old son has had EE since birth. He was first definitively diagnosed at 1 1/2-years-old. Later, at 3-years-old, more allergens were identified that had not shown up on previous skin tests. We eliminated 20+ allergens and used Flovent. He has been free of disease (on 3 biopsies) for 3 years. Prior to that he suffered with cyclic vomiting syndrome and asthma. Now he no longer requires medication and eats without difficulty. His only remaining allergies to food include milk, nuts/peanuts, melon and teff. At one point we were desperate as parents and didn't feel equipped to handle this problem of EE. Now all the hardship is a distant memory. I hope this is an encouragement to other parents and children who are dealing with this annoying disease.

Comment from: Hopeful, 3-6 Female (Caregiver) Published: October 08

My son was diagnosed with eosinophilic esophagitis when he was 4. We went to specialists/allergists, did elimination diets and all kinds of things. I truly believe what helped him was the Ayurvedic approach. In this approach, the concept is very much in tune with nature. Keeping the person not constipated which is the root cause of lot of conditions.

Comment from: mm, 35-44 Male (Patient) Published: June 28

Sulfites! I have been suffering from EE for 10+ years. I finally figured it out. Do the research on what food contain sulfites. It cuts across a variety of food groups so you wouldn't necessarily make the connection. Drink wine? sulfites. Eat dried fruit and granola bars w dried fruit? sulfites. Lemon juice concentrate? sulfites. Sulfites cause asthma symptoms in asthmatics...EE is the same cell, but in the esophagus instead of the lungs!

Comment from: Female (Caregiver) Published: January 16

My daughter is a 12 month old female. She's had some severe symptoms of eosinophilic esophagitis since birth. There was never a formula that agreed with her and we tried everything from neocate to elecare resulting in failure to thrive. She is allergic to milk, nuts, eggs, wheat, soy, shellfish, dogs and dust mites. I have to make all of her foods from fresh vegetable and fruit. Recently we were put on a vegetarian diet until our further allergy testing in three weeks. They wanted us to try another form of steroids (pulmacort) to see if she improves. These medications are our last option. Next stop will be the research hospital. She had been admitted to our local medical center many times since birth for dehydration and most recently was two weeks ago, she was admitted to be put on iv steroids b/c the oral wasn't enough. She has lost weight and the ending result was always back on predisone. We'd do great and as soon as we finished the steroids, we'd be back to vomiting and refusing to eat. Her other conditions are asthma, allergic rhinitis, acid reflux, asthma, atopic dermatitis, and severe food allergies. It has been a battle.

Comment from: ATP, 35-44 Male (Patient) Published: November 17

I'm a 39-year-old male who has had sporadic episodes (eight to 10 times per year) of choking on food for about 20 years now. I have never had any experience with heartburn, reflux or anything else. I was always able to bring it up with relative ease (although a fair amount of embarrassment), until this past weekend when I could not swallow anything for 18 hours. I had a trip to the ER for an endoscopy and cleared the impaction. The doctor did a biopsy that suggests EE.

Comment from: Judgenut74, 25-34 Male (Patient) Published: November 17

I'm 33 years old, and I was just recently diagnosed with EE. EE is a very scary condition before you are properly diagnosed. It has a lot of the same symptoms as GERD, and if you have your first attack, you would think you are having a heart attack. My very own experience was scary when I couldn't pass even a banana or properly chew food. I suffered from anxiety attacks and even start thinking that I had cancer. So if you ever experience difficulty swallowing, and you have a history of asthma or allergies (even child asthma that you have outgrown, that's what I have), the best thing to do is to talk to your doctor and see a gastroenterologist. Schedule an endoscopy and wait for the biopsy to treat your condition properly. Good luck to all, and be safe.

Comment from: Robert, 45-54 Male (Patient) Published: October 30

I am a 48yr old male who has been suffering from a chronic cough six months of the year, going back to 1987. I have had numerous allergy tests, three full pulmonary breathing tests, have seen an ear,nose and throat doctor who performed a nose job. I have tried just about every med the Docs could come up with to stop the cough. Finally, after having several bouts of the hiccups, followed by heartburn, followed by severe vomiting, I was referred to a gastrointestinal doctor. After performing his gastro scope procedure, they discovered I have a severe case of eosinophilic esophagitis. He prescribed Flovent and Prilosac. I was told to swallow the mist after puffing. I am excited about the fact that we finally believe we found the reason for my cough, which is extremely aggravating. I am optimistic that the treatments will work. On a side note, I am looking forward to losing some weight. I was told I could not eat or drink anything for 3 hours after my medications. I use the Flovent after breakfast and dinner.

Comment from: Lisa, 25-34 Female (Patient) Published: October 28

I am a 29 year old recently diagnosed with eosinophilic esophagitis. After several episodes of food getting stuck in my throat and emergency room visits for the "medical grade pop rocks", my GI doctor finally diagnosed me with eosinophilic esophagitis (EE). Blood tests also indicated a gluten allergy. Following a complete gluten elimination diet made a 100% difference. All tummy upset, acid, GERD, and bowel symptoms disappeared on the gluten free diet, including near complete reversal of asthma and nasal allergies. Since eliminating gluten, I have also discovered I have oral allergies to fresh melon, bananas, and pineapple. I strongly encourage everyone with EE to check into their food allergies, and to be ever vigilant in reading food ingredient labels, especially at restaurants.

Comment from: Dom's Mom, 45-54 Female (Caregiver) Published: October 24

My 17-year-old son was just diagnosed with eosinophilic esophagitis. The doctor could barely get the scope down. He's just started mediation and needs to be on a liquid diet for two weeks before having another endoscopy. I'm writing to alert parents not to ignore the symptoms. He had sporadic choking issues his whole life which I attributed to not chewing properly or eating too fast. He could never swallow pills. This past year he had to choke up food almost every day (in school, out with friends, at home). Thankfully he was able to get the food up or down and still breathe. If your son or daughter exhibits any swallowing issues - get it checked out right away.

Comment from: 35-44 Female (Patient) Published: August 20

I have recently (1 year ago) been diagnosed with Eosinophilic Esophagitis. I am a 40 year old female without allergies. I started having symptoms almost ten years ago and was told that my problem with swallowing was due to trying to swallow too large amounts of food and that I should chew my food more and take smaller bites. I would urge anyone who has been told this to continue to seek care and don't stop until you find help. I currently take use an inhaler, which I swallow, and have found that it helps, but not 100%. I am also told that trying to dilate my esophagus is dangerous and not recommended. My symptoms are problems swallowing, choking, chest pain, a constant sore throat, heart burn and acid reflux. I also have a hiatal hernia, which I attribute to my reflux and will have surgery to fix that. I am hoping that it will help with my Eosinophilic Esophagitis.

Comment from: brenda47, 45-54 Female (Patient) Published: September 17

I am a 47 yr female with EE, I just started with the inhaler, we'll see. I would feel like the food would get stuck, and then get chest pain. I also get short of breath when I lay down after eating certain foods. I also get nausea, epigastric pain. I am finding I get symptomatic with some foods and not with others. Starting to think this is an allergic response and I will feel better if I avoid these foods. Just have to figure out. Doctors are not helpful so far with that part.

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