Patient Comments: Eosinophilic Esophagitis - Symptoms and Signs

What symptoms and signs did you experience with eosinophilic esophagitis?

Comment from: EmilyS, 19-24 Male (Caregiver) Published: December 13

My son, 22 years, is autistic and has severe epilepsy as well. He was diagnosed with eosinophilic esophagitis (EE) when he was younger. He had to have a feeding tube into the stomach inserted 3 years ago after a severe duodenal bleed and a long spell in hospital. With rehabilitation, he resumed feeding orally, however since May 2016 he has slowly been refusing eating orally and has been vomiting almost daily. We have reverted back to feeding via tube but he will still vomit. I believe vomiting is one of the side effects of EE, but I am surprised this could still affect him when we feed via tube straight into the stomach.

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Comment from: Tootsieinoakland, 65-74 Female (Patient) Published: December 03

I have eosinophilic esophagitis and the worst part of it is the chest pain. I've found that drinking any liquid stops the horrible pain sensation within seconds. My son also has this and is the one that told me how to stop the pain. I was certain I was having a heart attack and now I go nowhere without having a liquid nearby; bedside, car, shopping, everywhere. It does not happen but maybe once a month but I guess that I am one of those people that is very susceptible to pain so I am very careful.

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Comment from: Dee, 13-18 Male (Caregiver) Published: July 28

My son, now 16, was diagnosed with eosinophilic esophagitis (EOE) 3 years ago. He had been a slow eater for several years, but began having trouble swallowing, began throwing up during soccer games (even when in very good shape), and began having stomach cramps. He was diagnosed with EOE and a small stomach ulcer after an endoscopy. He has a very small appetite for a 16 year old. Standard allergy test is clear. He is being treated with swallowed Flovent and Prilosec OTC (3 years now). Eosinophils are down to 11. He is better, but the nausea can be horrid during athletics. We have found acupuncture to be a huge help to return appetite and keep the nausea down. The nausea is definitely worse during the heat.

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Comment from: zinny, 55-64 Female (Patient) Published: July 15

I am a 62 year old female. As long as I can remember I have had an issue with food getting stuck, but not very often, maybe once a year. Several years ago it began to happen more frequently and with soft foods. At a regularly scheduled colonoscopy, my gastroenterologist also performed an EGD and found a stricture (which he stretched) and eosinophilic esophagitis. Treatment included Prilosec (every day for the rest of my life) and some thick sticky medicine that I was supposed to fill a syringe with and inject into the back of my throat. I did that 2 or 3 times. Each time it would send me into a coughing, choking fit, so I stopped it. It has been 2 years since my scope and I have not had a problem since. However, reading others' experiences with this disease makes me wonder if I have a gluten allergy. I have experienced diarrhea, gas, stomach cramps, eczema, and severe hay fever all my life. If eliminating gluten would help even a little bit, I am willing to try! Good luck to all.

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Comment from: Tim F, 45-54 Male (Patient) Published: June 16

I was recently (2012) diagnosed with eosinophilic esophagitis. I have had this condition since the early 1980s (before physicians knew what it was). I am now 47 years old. I have had many occasions when the food impact event (I didn't even know that that was what it was) would last hours and put me in the hospital. The pain is extreme. I would vomit and vomit in search of relief. Eventually the pain would dissipate (often after injections of Demerol). However the fear of eating is strong. For the benefit of others I will review food triggers that place my throat in the danger zone. The foods are Coke, Pepsi, root beer, bananas, and alcohol. Steak and other meats often trigger an event if my throat is in a bad place to begin with, but they can also trigger without any warning. Additionally, I will occasionally cough up particles of matter that are white in color and smell real bad (I don't think this is undigested food). I wonder if this is associated with EE and if anyone else has had this symptom. This is a horrible condition and I wish everyone here the best in dealing with it.

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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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