Patient Comments: Eosinophilic Esophagitis - Symptoms and Signs

What symptoms and signs did you experience with eosinophilic esophagitis?

Comment from: dear mama, 3-6 Female (Caregiver) Published: April 08

My daughter is three and was diagnosed with eosinophilic esophagitis today. This has been a trying and very difficult disease. We knew something was wrong from the time she was an infant. At the age of 6 months she was diagnosed with CVS (cyclic vomiting syndrome) which seemed to match up until last month when she continuely vomitted every three days for 3 1/2 weeks??? It was horrible. Now that we have this new diagnosis maybe we can also find some relief for her. It is not only hard on her but on the entire family. I feel for any sufferers.

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Comment from: carolinarocks28, 19-24 Male (Patient) Published: March 29

I was diagnosed last year with eosinophilic esophagitis. I have had trouble swallowing food for a while before that, but thought nothing of it, when the doctor performed the first scope on my throat, he said the camera got stuck and he was afraid that he was going to rip my esophagus. Now my throat is normal size, a year later, but I still have the disease. For those looking for a way to get your throat normal size, tell you doctor to prescribe you 2 different medicines, first one is Flovent Diskus (fluticasone propionate inhalation powder), but spray on your tongue and swallow it, its a steriod that really helped. Next take omeprazole, which helps with acid reflux which is one of the causes of this disease. Hope this helps.

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Comment from: Mr. EE, 25-34 Male (Patient) Published: March 22

I was diagnosed with eosinophilic esophagitis at my 2nd dilatation, 6 years after my 1st one. I have the form with multiple rings all the way down my throat. I've had difficulty swallowing since I was really little, and can remember times when I was between 4 and 6 and choking on a taco (I called it 'choking,' but it was stuck past my airway--It was just the anxiety back then). A couple of times as an adult, I've embarrassed myself by having food get stuck, then regurgitating it all over a food tray due to the anxiety that builds up. Anyway, the biopsy after the 2nd dilitation verified the EE, and I was put on Flovent. 3 times a day, but unlike other people, I take it before meals. Either my wife told me wrong or the doc is trying something new, but I was not told to wait before eating, either. Swallow the Flovent puff, then rinse my mouth out with water and spit the water out. 2 1/2 weeks later, I went to the allergist. After two appointments, I find out I tested positive to approximately 45 different foods out of 100. I cut them out and everything related to them, e.g., I was allergic to soy, so I quit eating soy and soybean oil; with corn, I also quit eating things with corn syrup. 5 weeks after the 2nd dilitation, I had a 3rd one. Doctor says significant improvements are visible, and now I'm on Nexium, too. Avoiding the food allergens is not easy, but I think it is nutritionally better and a little lighter on the wallet. I can't say that I remember having any issues when I lived in a different region of the US (as a child). After moving, I definitely noticed hay fever right away. I don't remember having seasonal allergies at the other location, either, not even when I visited there for a few weeks recently (before the EE diagnosis).

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Comment from: Summer_Lovin, 25-34 Female (Patient) Published: March 02

I started vomiting at the age of 14 (1997) after a concussion. I lost 20 pounds in 2 weeks and continued to vomit of and on for 10+ years. I had severe abdominal pain and they finally figured out I needed my gallbladder removed in 2006. I continue to have severe abdominal pain, sensitivity to certain foods and periodic vomiting spells. My throat feels constricted at all times and I am developing asthma.

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Comment from: Kerry, 45-54 Female (Patient) Published: February 14

I am a 47 year old woman who was diagnosed with Eosinophilic Esophogitis in October 2010. This diagnosis cam 10 months after my first choking incident while eating. Food would stop about half way down my esophagus and I would start freaking out. Water caused vomiting, but not the movement of the stuck food. My husband dismissed this as taking too large of bite, eating too fast etc... but when it started happening several times a week - I went to the doctor. I was diagnosed with an upper endoscopy and had an immediate diagnosis as my "spots" were very apparent and I was so inflamed, the scope barely fit down my throat. I have been taking Protonix for 4 months and have had good results. I am trying to avoid steroids...Best of luck to everyone...

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Comment from: J, 45-54 Female (Patient) Published: January 14

I am 54 and confirmed diagnosis of EE. I have recently started on the Flovent and saw improvement in less than a week. At first, it was hard to spray and swallow, so I am now spraying the Flovent into a half spoonful of honey and swallowing that it goes down easy, and I think that the honey actually helps it stay in my throat a bit longer. Seems to work good for me.

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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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