One month in

One month in to trying to control eosinophilic esophagitis with diet. I continue to feel pretty great physically (minus today - woke up with my stomach sooooo upset and it's continued to be unhappy today. Swallowing is no better, though. I'll have one or two meals I eat without thinking, but then the next one food will get caught, hurt going down, etc. I did realize about a week and a half ago that I was using the same toaster that I'd used to make wheat bread - and therefore still being exposed to wheat through cross-contamination - and since I've stopped using that I've had a noticeable improvement in my stomach symptoms (not my throat symptoms, though).

I saw the allergist again yesterday and this appointment was much disappointment compared to the last. The first appointment he said he had lots of patients with EoE and seemed quite confident. This time, once he heard that I'm still having symptoms despite avoiding foods, and once he saw my blood test which was positive for nearly everything he tested for, he seemed almost frustrated. I think he was really expecting eliminating milk and wheat to cure me, as he kept mentioning that those are the two most common triggers of EoE. He kept sighing and then went, "you're very allergic," as if he was at a loss. I *hate* when doctors sigh repeatedly. It makes me feel like they're frustrated with me, even though it's not my fault my body is the way it is. I've had ophthalmologists do it with my vision because there is nothing they can do to improve it (even when I'm not complaining!), and I find it really irritating.

Anyway, he confirmed that I'm allergic to milk so need to avoid that forever. He also said I'm reacting to wheat and should avoid that. But the other stuff that was around 1.0 (neg. being < 0.35) on my blood test he was reluctant to tell me to avoid. He said if I went to a hospital in the U.S. I would be told to avoid it all, but he said I could avoid it "if I wanted to." He said the stuff that came out around 1.0 or higher - soy, peanuts, sesame seed, shrimp, wheat, milk - meant my immune system was sensitized to them and if they caused symptoms I should remove them, or I could remove them if I thought that they were triggering EoE. I've already removed sesame seeds because I strongly suspect it caused a huge rash on my face two weeks ago. A doctor at the walk-in clinic said the rash was an allergic reaction (atopic dermatitis) and prescribed a $150+ cream that the province does not cover (!), but it took a week to finally go away and I really think eating hummus was what triggered it.

The allergist gave me a sheet which he said had all kinds of advice about diet. So I was feeling okay when I left. When I got home, though, I found it was just a copy of my blood work! Which I had already looked at online, anyway. So what the heck?

He did give me more asthma and allergy meds, which is good because I'm currently waiting for my benefits from my new job to kick in, and that stuff isn't covered by the province and is expensive.

So I'm disappointed that he seemed frustrated and didn't seem to have any confidence about what to do because I tested positive for so much. I'm thinking that if a hospital in the U.S. (where most of the EoE research happens) would ask me to avoid all the foods I tested positive for, then that's exactly what I'm going to do. I'm also going to attempt to avoid nuts (which means using coconut milk instead of almond milk), because even though he didn't test for nuts they are one of the top allergens and some of them make my mouth and throat feel funny, so I wouldn't be surprised if I'm reacting to them.

I THINK - but I'm not sure because he was so indecisive - that I would like to try and get to where I am experiencing no symptoms before adding foods back to see if they have an effect. I think otherwise it's too hard to determine what might be causing what symptoms if I'm having symptoms every day. And especially because eosinophilic reactions are not necessarily immediate and can be delayed (like atopic dermatitis reactions ...), it can make it especially hard!

I didn't even ask him about some of the other allergy questions I had - like whether he can test me for bananas or avocado or dates (had a reaction to some avocado-date pudding stuff three times now, so it's one of those two).

I was doing some reading last night and read that eosinophils are involved in allergic rhinitis (hay fever), atopic dermatitis (eczema), and asthma. All of which I have. So I would say my eosinophils seem to be out of whack throughout my body - which is also what the allergist said the first time - and that anything I can do to lower them is something I should try.

The allergist talked about medication (swallowed Flovent, etc.) but didn't prescribe any, he decided to leave that up to my gastroenterologist. I told him that Flovent (as well as the nasal spray I'm using) make my throat and tongue SO sore. It goes away once I stop using it for a few days, but I can't think that's good. He said that Flovent is the best treatment but that there are others. I keep hearing about these allergy pills (Singulair and such) and would like to ask about those, since it seems my allergies are a global problem.

I made a follow-up appointment with the allergist for three months to see how things are going, even though he didn't give me any real advice. I'm not sure when I'm seeing the gastroenterologist next - I had an appointment scheduled for today but had the wrong time, so will have to cal and reschedule, which sucks.

Jen, I wondered how you were doing. I totally admire your resilience and courage and resourcefulness.
I had to look up ee. Not such a good thing to have to deal with. The best site I found, for my education, was which discusses the treatment approaches in the U.S. I am sure you have found it already.
I hope that you can get by with fewer food restrictions after some experimentation.
My best to you.