Patient Comments: Eosinophilic Esophagitis - Treatment

What was the treatment for your case of eosinophilic esophagitis?

Comment from: Ptan1101, 35-44 Male (Patient) Published: January 27

I've had eosinophilic esophagitis (EE) for about 14 years, though I was diagnosed just 3 years ago. For years, food would get impacted from time to time during meals, and I had mistakenly attributed it to stress and anxiety at the time, as I was also having issues with anxiety and sometimes even panic attacks. Gradually I started to have a fear of social situations involving food, as I was sure to have to run to the bathroom to regurgitate. I started avoiding meats, bread, anything that was sure to get 'stuck' again, mistakenly thinking it was related to panic disorder or severe anxiety. My quality of life deteriorated further to the point where I felt something was definitely wrong and I went to a gastrointestinal (GI) specialist. He did an endoscopy and tissue sample, and quickly identified it as EE. My eosinophil count was found to be 32, which is high. After the dilation procedure on my esophagus, he put me on Nexium and it was a miracle! No more food impaction, no more symptoms and this has continued up to this day. I seem to need only Nexium and my GI doctor is amazed that is all that is needed for me. So far we are riding it out before we begin the next step of seeing a food allergy specialist. He did say that my EE may be caused by GERD since I've had such a positive response to just the Nexium, and it's possible that I could be part of a small subset of patients where this is the case. Either way, Nexium appears to still be all I need. It's also interesting that Prilosec and Prevacid don't seem to work as well as the Nexium for me, but as long as I take my little purple pill every day, I am doing great!

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

My 16 year old son has been on swallowed Flovent and Prilosec OTC for 3 years. It has helped his eosinophilic esophagitis somewhat, but the nausea and poor appetite is difficult. We use acupuncture successfully to help the nausea and increase appetite. It has helped greatly, but has not eliminated the issues. Eosinophils down to 11 after 2 years of treatment. Basic allergy tests are clear. Next we will try elimination diet. He's a very good athlete and in great shape, but his body can't keep up with this insufficient food intake I'm afraid.

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Comment from: GrandmaS, 55-64 Female (Patient) Published: November 21

I have had EE (eosinophilic esophagitis) for 6 years, I have tried Flovent, steroids, just about everything everyone else has tried. I started getting on different blogs hoping I would find something else that I have not tried, came across someone saying they are taking Singulair, and it helped with all symptoms. I tried it and it has totally worked for me, it felt like a miracle. No more hurting when I swallow, but now I feel sick to my stomach all the time, and I wonder if it is food allergy causing it.

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Comment from: yogamom, 35-44 Female (Patient) Published: September 11

My first experience with EE was when I choked on a piece of food, and it kept happening. My GI doc scheduled an endoscopy, but he only tested for cancer, not EE. I fired him for his "get over it" attitude, and went to my MD to ask for a referral to a new GI. She diagnosed the EE and referred me to an allergist. I've made it to a maintenance dose for my allergy shot and made it through pollen season. So far, the EE is better than it was most of the time, but I got a good flare-up after a landscaping day (my key allergen is grass pollen). My allergist thinks the shots will eventually cure the EE because he theorizes the EE is triggered by allergies. During the pollen season, I avoid a long list of foods, including wheat, which is cross-allergenic with grass pollen. Fingers crossed that the shots will work -- I miss bread, and the burning in my chest during flare-ups is something I could do without as well. I found budesonide very effective and low on side effects when the EE was at its worst. Now, I usually take nothing. I just cut out the cross-allergenic foods during their respective pollen seasons.

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Comment from: GBmom, 7-12 Male (Caregiver) Published: October 08

My son started seasonal allergies with trees and grass a couple of years ago and also had trouble eating his favorite foods such as tomatoes, cucumber, parsley, melons, apples, strawberries, etc. I took him to an allergist and she said that he has "oral allergic reaction." This happens to about 30% of the population that suffer from seasonal allergies. When my son eats the raw version of the food, he has the eosinophilic esophagitis (EE) feeling, but when the fruit or vegetable is cooked, it breaks down the protein that causes his allergic reaction. His skin testing came back negative for all these foods because in order for them to get the serum for the test, it must be cooked, thus breaking down the protein that causes his reaction and it gives a false negative to the skin test. We still are avoiding the uncooked version of these foods, but he can eat the canned ones, such as applesauce, pears, etc.

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Eosinophilic Esophagitis - Experience Question: Please describe your experience with eosinophilic esophagitis.
Eosinophilic Esophagitis - Symptoms and Signs Question: What symptoms and signs did you experience with 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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