Patient Comments: Eosinophilic Esophagitis - Symptoms and Signs

What symptoms and signs did you experience with eosinophilic esophagitis?

Comment from: Connell, 13-18 Male (Caregiver) Published: March 13

My son is 13 years old and has been diagnosed with eosinophilic esophagitis (EE). He has a lot of medication and he suffers with food and he gets very constipated which leaves him very unwell. He is struggling with school. He has had a lot of allergy tests and he is not allergic to anything. And he has been in hospital for a number of clean preps and he has had the camera down and up the back passage. I cannot understand this condition it is heart breaking seeing him suffering.

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Comment from: SWEET CHLOE, 3-6 Female (Caregiver) Published: August 20

My sweet 5 year old daughter Chloe suffers w/ EE, asthma, allergies, eczema and autism. I recently took her to the hospital a week ago because she was so lethargic and had a blood sugar of 29.T doctors thought it may be diabetic related, but her EE was preventing her from eating.

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Comment from: PSwearin, 25-34 Male (Patient) Published: January 20

I'm a 31 year old male that was diagnosed with EE about 6 years ago. My experience with the disease has been a roller coaster ride. I've experienced some acid reflux, including waking up in the middle of the night choking on it. But thankfully those incidences are few and far between. My personal experience with swallowing issues has been that under most circumstances, I can force the food down that gets stuck by swallowing air. I don't like taking medications so I've dealt with the problem that way until it gets so bad that I have to go on a 2 week regimen of swallowing flovent, which seems to be necessary for me at least once year.

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Comment from: Jan, 45-54 Female (Patient) Published: October 11

I am a 52 year old woman and have just been diagnosed with EE. In hindsight I think I have been suffering with this condition for, at least, 15 years. I have been prescribed a steroidal inhaler but with instructions to swallow instead of inhaling. This has brought some relief but I have found the best thing for me is to eat any food in small mouthfuls and to try and eat as slowly as possible. It takes some practice, particularly when you're hungry!! Meat continues to be troublesome.

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Comment from: 25-34 Female (Patient) Published: June 20

With my eosinophilic esophagitis, I get a pain that feels as if I have swallowed a basketball. I don't think there is actually something stuck in my chest, but it feels as if there is. I find that it happens most often with raw fruits and veggies, baking soda (that I took for heartburn), eggs (only sometimes), bread-ish food if I don't have a drink, and peanut butter if I don't have a drink. Lately, though, I can't identify what it is that I ate that caused it. I have the pain now with no explanation. It almost feels as if a burp is stuck, but I don't think it is.

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Comment from: Muush, 55-64 Female (Patient) Published: February 09

I am a 56-year-old female. I have had a persistent cough since 1992. I was (incorrectly) diagnosed with asthma because of the cough. Albuterol really didn't help much. (No wonder!) In 2005, I decided that enough was enough and the cough had worsened. I was put on steroid asthma meds (Asmanex) and felt better, but I was still coughing. Finally, that doctor shipped me off to an asthma doctor who decided that it was not asthma. So, off I went to the GI in 2009 and finally got it diagnosed as eosinophilic esophagitis (EE). I did the Flovent treatment and felt great, but about six months later, all my symptoms returned. I requested allergy testing (the doctor felt it was an allergic reaction and just told me to avoid certain foods without the testing). I was 4+ allergic to several foods (soy, certain nuts) and 2-3+ allergic to many other foods and fruits. After the allergy testing, I repeated the Flovent medications, and I have avoided the foods and feel much better.

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Comment from: As1015, 25-34 Female (Patient) Published: May 16

I am 29 years old. I was diagnosed with EE about a year ago. I began to have episodes during my pregnancy and around the same time as spring began. I have had horrible chest and stomach pain on my right side. I could not burp or even breathe. It usually lasted for an entire 12 to 24 hours. This disease is very crippling, especially when you have children at home. I am on Deviant, which has helped quite a bit. Since I started taking it, I've only had two episodes. Occasionally, I get pain, but only when I eat something I am not supposed to (ex: shellfish, chicken, corn, chocolate, wheat, eggs, dairy, apples and bananas). I'd like to know if I'm the only one who suffers from this type of pain.

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Eosinophilic Esophagitis - Experience Question: Please describe your experience with eosinophilic esophagitis.
Eosinophilic Esophagitis - Treatment Question: What was the treatment for your case of eosinophilic esophagitis?
Eosinophilic Esophagitis - Diet Question: Did you try an elimination diet to treat eosinophilic esophagitis? Please share your story.
Eosinophilic Esophagitis - Diagnosis Question: Please describe the events that led to a diagnosis of eosinophilic esophagitis.

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