Eosinophilic esophagitis is an allergic disease of the upper gastrointestinal tract often caused by various allergic triggers, including foods and aeroallergens (such as pollens, pet dander and dust mite particles). Symptoms depend on how old the affected person is, with younger children having more symptoms of nausea, vomiting and weight loss, and older children and adults having food impaction and difficulty swallowing. How did you find out that you or your child had eosinophilic esophagitis, and what the determined to be the cause of your symptoms? Share your story! Share Your Story
28 EE, feel like I'm dying
- Diagnosed after years of being treated like its all in my head. I choked and was in the hospital for 6 hours before they flew a doctor in from Chicago by helicopter to actually grind the food out. My current GI doctor thinks I'm a lost cause and there's nothing he can do for me so see me in 6 months he said. I went to an allergist who ran a few tests and said I'm not allergic to anything. Put me on allergy mess anyway and it helped out with the sinus issues. Pushed for me to go back to my GI doctor which is a major waste of time and money. I went and yea wasted my time. I'm extremely frustrated and hurting. My throat hurts, stomach is bloated and hurts 24/7. It's embarrassing.
I was diagnosed with an allergy to milk from birth. I have had trouble choking all my life, and allergies (that allergist said wasn't ever there).
- —Guest Drew
- I'm a 43 year old woman who was just diagnosed. Thankfully I DO NOT have choking episodes, my main symptoms are almost constant nausea with the tiniest bit of heartburn. The doc put me on omeprazole, which seems odd to me because I've read it doesn't help EE. I've put myself on a no wheat no milk diet to see if it helps. It SUCKS not eating wheat or milk, I swear bread, pasta, and cheese are my favorite things to eat.
- —Guest Aileen
Hurts so bad
- I was diagnosed with EE age the age of 38. I had previously been treated for H-Plyori. I have allerigies out of the wazoo! I was also diagnosed with a "feline Espohagus." I also suffer from IBS and other GI issues. Sometimes, I currently take PPI's, and on a Nasal Cortosteriod. Sometimes life is miserable and the last couple of days have been horrible. Diarreah, bloating, vomitting, stomach pain.
- —Guest Suffering in Silence
- Just found out i have EE. Have had food get stuck and couldnt breath, just manged to cough it out in time, also have trouble swallowing potato mash sometimes, im not sure whats causing it but i think it may be milk. im 31 now and i have been having pain for maybe 15 years in stomach, also lack of energy wondering if this is caused by EE
- —Guest bb
- I am 28 years old and two months ago I was diagnosed with EE after having an endoscopy. For years I would have severe abdominal pain after eating (occurred several times a year). After being treated for what doctors thought was acid reflux and ulcers, my GI doctor finally determined it was EE that was causing the stomach pain. I was referred to my allergist for testing and it turns out nuts were causing the EE. Fortunately, I do not have the choking feeling that food is stuck in my throat. My only EE symptom is severe abdominal pain that can last from three to six hours. For now, I am very careful to avoid any food with nuts.
- —Guest NikGall
- My 15 year old son Brendan was just diagnosed with Eosinophilic Esophagitis. He has a lot of difficultly swallowing food. This is very upsetting to me. My son went from eating five, six, or even ten times a day, like a typical teenager, to once maybe twice a day and that is if he's having a good day. He has lost interest in eating and he has become some what withdrawn. If there is any one person out there that can help with any advise please let me know.
- —Guest Sheila
EE for 16 years undiagnosed
- I started having "food sticking" issues in my mid teens. After a barium swallow they just said inflamed esophagus and put me on heartburn meds. Now at 31 I got diagnosed with EE after getting scoped and tested positive for wheat allergy. Many embarrassing instances of food getting stuck in my esophagus, then drinking water to wash it down. The water would fill up past my windpipe and I would have to vomit it out. I would just repeat this process till the food washed down for as long as an hour. Very painful, embarrassing and sometimes scary. Hope to never go through that again.
- —Guest Brian
EE diagnosed after 6 years
- Thought I was the only one dealing with this crazy thing! First noticed symptoms at 31. Was told I eat too fast. Over time it kept getting worse. Food felt "stuck" and I'd have to throw up. It started happening in public and was embarrassing. I eventually went to a GI, he ordered a barium swallow. They found nothing - so I dealt with it until one day I choked at work. I couldn't breathe for almost a minute and then once it dislodged it took almost 45 minutes of throwing up to get the food "unstuck". That incident led me to another GI, he did an endoscopy and diagnosed me with EE. He said it's triggered by allergies so I got tested. For those of you still trying to figure out what triggers your EE, make sure the allergists does the regular as well as delayed testing. Nothing showed up during scratch tests but patch tests showed corn and potatoes. Also, GI said a BIG false negative is milk, meaning it could be triggering EE but doesn't show up on testing. Good luck everyone!
- —Guest J Carter
Decades of Unbelievable Suffering
- After DECADES of unbelievable stomach pain, hundreds of stomach polyps, GERD that felt like a flaming torch and did not
respond to meds., increasing esophageal pain, multiple EGDs including two
dilations, etc., I was finally diagnosed with esophilinic esophagitis! Over those decades, I was very badly treated by many doctors, including at a major teaching hospital, who acted like I was exaggerating symptoms and needed a "shrink". I had so much pain that other medical conditions got worse and I seldom slept.
I recently had a battery of allergy tests and learned that I have a milk allergy.
Dairy was about 90% of my diet since fruit juices, and many other things caused immediate severe burning of my espohagus. I just started the Flovent
treatments and am also still on Prevacid.
I have replaced dairy milk with soymilk and occasional almond milk. I can no longer eat my beloved yogurt and cheeses.
I am feeling a little bit of relief now, and am hoping there will be more.
- —Guest PainPain
22 just diagnosed EE
- Im now 22 I was told yesterday I have EO. Food has been trapped in my throat since I was 1 1/2 year old my mother has spent my younger years taking me to doctors. They tested for enlarged adenoids and sleep apnoea. Then ruled out my mum as neurotic. Problems continued through school and work. Visits to A&E for food trapped longer than 3 hours and sometimes all night cause I didn't want to go into casualty. I was told it was a motility problem and there was no cure. I have had pressure tests, x-rays,barium meal and two gastroscopes with the last biopsies. I am a recent type 1 diabetic and had ITP as a child
- —Guest Julia
Its at the point where it scares me!
- When I start to eat it starts with the first bite.I have to wait on it to clear in order to take the second bite.Depending on what I eat I have to eat very slow,At any point during eating if food acts like it did not clear, I must excuse myself and go to a restroom and use my fingers too try and clear it by gagging myself.Its emberrising and sometimes does'nt go away until I get whats stuck,back up and out.I know longer have teeth which I know makes it worse ,but it started when I had teeth.My Doctor is sending me to a specialist,I pray it helps.
- —Guest Bradley Lawson
used to think i was crazy~
- i am 23 years old, i was finally diagnosed about a week ago(after the 3 scope and 1st biopsy). it was a long time coming . i was asked if i had bulimia when i mentioned it to family twice while growing up-so i stopped talking about it. doctors always just put me on prilosec (at 16), which never helped so i had been on it 40mg for 7 years. i have had ulcers in my esophagus and stomach (20 at one time now) and had a pic line while pregnant with my son (2.5 yrs ago)because i had so many ulcers in my esophagus. i always thought i was crazy that everyone had pain and that i just couldn't function as well as everyone else was able to... i have constant back, stomach and chest pain. constipation*maybe another disease- getting a colon scope soon* headaches, fatigue, regurgitation, muscle and joint pain and coughing.
- —Guest Michelle
- @Sand44 : I'm 26 and I'm diagnosed with EE since few months, I'm allergic to cats, and I've got 2 cats also ... its weird but I had (sneeze, eyes) since I'm 7 and I've been living without cats since until 3 years ago ... at first I had symptoms (sneeze) but just as it disappeared, EE began ... so it seems related ... I really love my cats ... why me ?:(
- —Guest JP
I thought I was alone with this
- I am 32 I have been regurgitating and choking on food since I was 7. I can only describe the feeling like the food is going nowhere and is leaning on my wind pipe. I have learnt to deal with this myself as no medication helped and until my diagnosis, when I was 29, I was also made to feel like it was my fault. The only advice I can give anyone is try and stay calm. If I start to choke and people around me panic it makes me worse. I know its easier said than done but if I just take a min and wait I can almost feel my throat easing off. This doesn't always work and the food comes back up. I also have to stay vertical after eating or food/acid will trickle back up, I also can't bend over, I describe it like being a bottle with the lid not on right
The only advice I can give any parents is be patient, stay calm (not always easy) and give your child little meals and often. Also stay away from acidy foods especially orange juice, doughy bread also causes problems and gets stuck. Good luck
- —Guest fclark
31 yrs old
- early on i had mild asthma(that i outgrew)woke up with croup ocasionally, then 7-yrs i had heartburn, couldnt drink milk, if i ate ice cream i woud pay for it all night(regurgitate clear fluid with intense pain in my chest) as an adult the heartburn went away but i still had problems with many foods. at 29yrs old food started to get stuck and i would make myself vomit out of discomfort. so i had an endoscopy and was diagnosed with EE. allergy tests showed i was allergic to nuts, milk,eggs,wheat,soy,corn, pork, malt,grains. ive had 3 allergy test so far and although the main ones are always the same sometimes the minor reactions are different. i avoid food triggers as best i can, i take omeprazole, 2 puffs of flovent, and I am getting better. Its funny but if i eat one bite of something i shouldn't, i burp up air immediately. i can't eat before bed or lay down for a while after meals. has anyone researched or tried hookworms as a treatment? i would love to be able to eat normally again
- —Guest greg nj