Try the Department of Gastroenterology at Johns Hopkins (this is the PP). There is one doctor who specializes in EE (google Johns Hopkins and EE and I'm sure you'll find him). I wasn't able to get an appointment with that particular doctor, but I saw someone else who was recommended by the scheduler and he was very knowledgeable about EE. I can't remember his name.

I'm so sorry you are dealing with this.

OP here:

Who at Hopkins...what type of doctor?

Over 7 years ago, I had the inability to swallow that got so annoying I saw a GI, did a bunch of tests, ending with an endoscope. During that procedure, the GI doc cut out a growth and told me that was the problem.

About 2 years ago, I started having the problem again and it although it was chronic, I got pregnant so could not do an endoscope. I just did one and this new GI found the lump, removed it, but also said that my esophagus was incredibly inflamed and he called it "highly allergic" to something. I've had patch testing for common allergens (cat, dog, mold, pollens) and the only positive was birch.

Anyway, I"m giving up eggs and doing allergy testing next week. The drug is helping but I still feel the constrictions. the new GI told me that old GI probably didn't know about EE b/c it's a rather new Dx. He just wants to do another endo in a few months and have me visit an allergist. I crave a more systematic approach to figuring this out.

Open to suggestions. Thanks. I'm even considering concierge medicine.

I highly recommend John Hopkins. They have a couple of people there who specialize in EE. The waitlist is intimidating, but I found my visit there to be incredibly worthwhile.

I didn't find that the patch test was particularly helpful. It showed that I had no allergens, but blood tests showed otherwise.

What are your symptoms? How did you find out that you had it?

You should see a GI plus an allergist. The allergiet can better help you figure out the trigger foods, and the GI doctor can help you manage symptoms and periodic endoscopies. I would not treat this lightly - I think in a few years this will be the next celiac and my GI doctor said untreated EoE can lead to long term scarring in the esophagus and esophageal cancer. My allergist did "patch" testing on me (which is not very reliable but can be an easy way to get started on figuring out your trigger), and I tested positive to a couple of food items which I eliminated. It turned out, neither of those foods was a trigger for me. I then eliminates dairy for 4 weeks which did not help, and then wheat and again it did not help. My next step was a total elimination diet which really intimidated me (you eliminate all foods, drink special hypoallergenic drinks, and then start to add foods back in one at a time). Bottom line, the testing for this sucks. My allergist thought my trigger was probably environmental so I then tried the treatment for that (swallowed flovent) before trying the elim diet and the flovent has worked pretty well so likely my trigger is environmental. I do not live in this area so can't recommend a doctor, but make sure yours sees a good amount of patients with EoE. GL.

Has anyone figured out their trigger foods and if so, how did you do it? I love, love, love to eat and don't want to do an elimination diet. I could eliminate one thing at a time (starting with either eggs or dairy) but need some guidance on how long before reintroducing...and if I forget a day, do I need to restart the experiment. Also, should I stop taking the meds when I do this? The meds help a lot...75%.

My gastro guy is ok but obviously, I still have a lot of questions. I see allergist in about 1.5 weeks. Should I see some sort of specificalst? If so, what kind?

Thanks.