Well, one week into the diet my allergist asked me to follow (no wheat, milk, eggs, peanuts) and I am feeling great! The first few days were really hard because I couldn't find anything - I hardly ate on Friday and that made my stomach hurt really badly on Saturday through till Monday! Not sure I'll do that again ...
Anyway, since starting this a week ago I've noticed a few interesting things:
1. I am WAY less itchy. I used to have an itchy back, arms, and scalp on an almost daily basis and broke out in random rashes and hives fairly regularly. In the past week I have only gotten itchy once (see below).
2. Although I am still having EoE symptoms (swallowing difficulties and heartburn) they have improved. For the first few days I noticed no change; most of the change has been in the past day or two, so things may improve even more over the next few days.
3. For the past few days I have had to lower my insulin settings a lot because I was having massive lows after meals (like dropping to 2.3 - 2.9 at two hours and having to eat a second "meal" just to stabilize). Even with that my blood sugars are great.
4. Initially I was having problems with high blood sugars after meals, btu I'm finding as long as I weigh/measure absolutely everything before eating it (meaning NO guessing/estimating at all) my blood sugars are great. Since I have not attempted to eat out and have been preparing all my own food, this is time-consuming but not overly hard.
5. My stomach used to hurt every day, and I used to get acid reflux on an almost daily basis (never had acid reflux before a year ago, but it's an EoE symptom and I developed EoE symptoms five or six years ago). For the past few days my stomach has not hurt at ALL, and yesterday I had very mild acid reflux and today I have had NONE. Today I think my swallowing symptoms may be improving, too.
In addition to skin tests, which had small reactions for milk, eggs, wheat and peanuts but no reaction to soy or shellfish, my allergist also ordered blood tests of IgE antibodies. IgE is the antibody that attacks external substances like food or pollen and is responsible for allergic reactions. Out of eight foods he tested, seven were positive! Negative is below 0.35, and the salmon was the only food that came up negative. Eggs were only mildly positive at 0.53. But peanuts were 1.14, wheat was 1.06, shellfish was 1.10, sesame was 1.30, and soy was 0.97. So my body is producing antibodies against all those foods, but whether they are actually causing reactions that trigger EoE isn't known yet.
I told the allergist that I have been avoiding drinking milk or things like lattes with milk for years because it seriously irritates my throat and lungs. It makes my throat feel like it's filled with mucus, makes me cough and wheeze, makes my voice strange sometimes, and makes my stomach incredibly upset. I still ate cheese and Greek yogurt, but they made my mouth and throat feel irritated, so I was suspicious that I might have an allergy. Well, the blood test for milk came back as significantly positive at 4.75.
The one "cheat" I did this week was licking a dab of milk-based pudding off a spoon. I said above I have not been itchy all week. Well, about 30 minutes after doing that my back and arms itched like crazy! So between that and the blood test and my past symptoms, I'll see what the allergist says, but I'm pretty sure I have a "true" milk allergy. So I will be very cautious with milk, as IgE-mediated allergies are the ones that can provoke life-threatening reactions. That would bring my "true" IgE food allergies to three (potatoes which is life-threatening, and banana and milk). Of course, I don't know how many foods might be triggering my EoE. My allergist said if I strongly suspected another food was triggering it I could eliminate it. I think if I'm still having symptoms in a day or two I will eliminate sesame, as it was the next highest on the blood test.
Up until a few days ago I was feeling so frustrated with this whole thing. But since my symptoms have improved a bit I've become so hopeful! I am still having allergy symptoms due to environmental allergies, even with taking three medications, so I'm getting more strict about trying to control those and avoid allergens. Hopefully when I see my allergist in three weeks some of the inflammation he found in my nose and lungs will be under better control. He'll be the real one to interpret the blood tests, too - I'm just going on an educated guess.
I am going to two conferences in the next few weeks. I ordered a cooler tote off Amazon because I think I will be bringing most of my own food. I used to hate having to pack a suitcase of food before I was on MDI, but it looks like I'm back to having to do that. I have not ventured to eat out yet, and will probably try to do so once before I travel so that it's not so nerve-wracking. :)