Venting

So, I'm sorry, but I think I'm going to vent for a minute. I don't like EE. In fact, I really hate it right now. I hope one day that this all gets easier, but most days, I wish I could wake up and have it all go away.

During the first month, I told myself that I only had to make it through one month on such a strict diet just for that month because I knew the next month my Dr. would let me add wheat, soy and dairy back in my diet and if you have ever read food labels, at least one of those ingredients is in everything. I was excited because I tested negative to those foods and I knew it would give me several more options on things that I can eat. Well, as I food trialed all three of those things, I realized they had been making me sick all along. Not as sick as some other foods, but enough to explain why I always felt crummy. I thought I would have an easier time dealing with this since we have had a couple years of handling Anthony's nut allergies. But, as it turns out, avoiding tree nuts is a lot easier than avoiding over 20 foods.

I guess the thing that is so hard is that food is everywhere. It's what is supposed to fuel our bodies. It's usually the main part of every social event and it's so hard to have to turn down.....because some food is just so good. I try to be strong and not have a hard time in these types of situations because it's something I need to get used to, but I'm not really doing a good job at that. I just have a hard time accepting that this is what I get to live with for the rest of my life and that there is no cure....they don't really even know a lot about EE at this point.

Well, I will end my venting here for now...sorry but that's just how I feel about this whole situation right now.

Food Trial/Update

Well, the food trial isn't going as well as I hoped/thought it would. Wheat tested negative on my prick test and not 100% positive in my blood work, so I thought that would be an easy one to add back in. After a couple days of eating food with wheat, I started to feel pretty sick for a couple days. Once I got feeling a little better, I decided to try out some dairy. I tested negative for dairy in my prick test but almost positive in my blood work. I don't think dairy and I will be great friends either. I was pretty sick within about an hour. So, I guess I'll have to try and figure out the egg and soy trials and hope things go better there.

Food Trial 1

Well, I went back to the Allergist this past Monday. This year I was also hit with really bad seasonal allergies which I have never really had to deal with before. I thought I had a really bad cold, but I should have seen it coming when along with the food allergies, I tested really high to trees, grass and weeds. The worst time for all of these things is March-October. Luckily my fabulous Dr. loaded me up with all kinds of nasal sprays, eye drops and prescriptions and I'm feeling a lot better, which is good because I was about ready to rip my head off and throw it at something...lol.

Due to the seasonal allergies, he suggested that I consider allergy shots, but wants me to really think it over and check with my insurance because it is pricey and it is a 5 year committment. For the first 3-5 months I would have to go in twice a week for treatment, and then 1 a month for the remaining 5 years. I'm really thinking about it though since it could help with some of the other EE symptoms that I am having (more specifically the chest pain and swelling).

I got the results of my blood work at this appointment, and it wasn't as conclusive as we hoped it would be. The levels in my blood to most of the food that we tested was slightly positive but not 100% positive, so it wasn't an easy way to tell what foods will make me the sickest. Especially because it didn't match my skin prick test 100%. So, I now get to start food trials this month...yay!! He said the only way to completely clear up all of my symptoms is to go elemental, which he doesn't want to have to do and I really don't want to have to go that route. So this week I can add in wheat :) I hope this goes well, if not, I will enjoy it for as long as I can.

Ingredients......

So, over the last month I have been learning more about Ingredients than I ever wanted to know. Since my son was diagnosed with his nut allergies 3 years ago, I became very used to reading labels to check for any Tree Nut ingredients or Traces of Nuts. Not that I'm grateful that my boy has to deal with allergies, but I am thankful that I have had a few years of working with his because it has made dealing with mine a little bit easier.

I went in to this experience trying to be positive. I've been on the look out for things I can substitute so that I have some variety of things that I can eat. However, it becomes a little more challenging when you find you are allergic to the substitions.

For example, I have to avoid eggs so I got this egg substitution from the Food Allergy group that I belong to:

1 egg=
1 teaspoon baking powder
1T water or apple juice
1T white vinegar

Then I got looking at the ingredients in baking powder. One of those ingredients happens to be corn starch which isn't the best when you are also allergic to corn. I got really frustrated at this point because it seemed like everytime I think I find a substitution, it turns out to be something else that I am allergic to. I'm learning to accept that I really don't have a lot of options for variety. I did find a substitution for baking powder though, so I do have a little bit of hope again for being able to make a few more things to eat. For anyone who is interested, the baking powder substitution is:

1 teaspoon baking powder=
1/4 teaspoon baking soda
1/2 teaspoon cream of tartar

I'm hoping this week that I will be able to find something to make with these substitutions, and that the food actually turns out edible :)

The Results......

The first week of March, I went in for my allergy testing. I had mentally prepared myself that the results might not be "good," but I didn't think they would be as bad as they were. My doctor first did a skin prick test. They first numbered my back and then pricked my back 28 times with a tiny bit of the allergens I was being tested with.

After the pricking, I had to lay there for 20 minutes to give the allergens time to react. I could instantly feel my back burning and itching and after 10 minutes, he came back in to check on me. He opened the door and was like "WHOA!" Correct me if I'm wrong, but that's not typically a 'good' reaction. He then said that we definitely have some food issues to work through and he would be back soon to read my results.

Well, here are the results...if you are ready :)

Milk
Eggs
Wheat
Soy
Peanuts
Tree Nuts
Fish
Shellfish
Oranges
Celery
Carrots
Lettuce
Corn
Tomatoes
Rice
Barley
Oats
Rye
Pork
Garlic

After the skin prick test, I was sent to the lab for some blood work where they took A LOT of blood. I'm not sure of everything that he had me tested for in my blood work yet, but a couple days later I received a phone call where I was told I tested 'slightly positive' for everything. Those results will be discussed at my next appointment.

So, needless to say, I am on a very strict diet right now in hopes of clearing up my symptoms and allergic reactions. My doctor said they don't typically see adults who develop these allergies as this is more common in children. His hope through some of these food elimination diets is that I will be able to eventually eat as many foods as possible. We will see.........

Introduction....

Hello!
For those of you who don't know me, my name is Amy and I was diagnosed with EE aka Eosinophilic Esophagitis this last Christmas of 2009. I decided to create this blog mainly to have a place to write about the things I'm going through. I don't know many people who have this rare condition, but hopefully this blog will be able to help others who also have EE or a loved one learning to live with this condition. To get started, I'm just going to post what I posted on my family blog last month that will give an overview of how this journey started for me and how I got to where I am now:

EE
Well, I'm starting to have to face something that I've been in a little bit of denial about. Just after Christmas, I was diagnosed with a condition called Eosinophilic Esophagitis aka EE. This all began in August of 2007. I started to have a really bad pain in my chest that got worse when I would eat or drink anything. At it's worst point, I couldn't even drink water with out horrible sharp shooting pains in my chest. After many doctor appointments and even an ER visit, it was assumed that I had acid reflux and was prescribed a couple medications to help with the symptoms. I thought that it may have been a ulcer, but never went through any testing to determine if that was the case since the medication eliminated most of my symptoms and I felt so much better.

This past October, the pain started to get really bad again. I went back into the doctor and they doubled my medication doses, but it didn't help much. So, a few days before Christmas I went in for an endoscopy where they took some pictures and some biopsies of my esophagus. Well, the diagnosis was officially EE. This is what it all means:

Eosinophilic Esophagitis: Eosinophils are white blood cells that regulate inflammation and play a key role in allergic reactions. Eosinophilic esophagitis occurs with a high concentration of these white blood cells in the esophagus, most likely in response to an allergy causing agent.

Symptoms:
*Difficulty Swallowing
*Painful Swallowing
*Chest pain behind the breastbone
*Swallowed food becoming stuck in the esophagus
*Nausea
*Stomach Pain
*Vomiting

Honestly, I'm not sure what this all means for me yet. I'm a little nervous to find out what I am allergic to, but at the same time it will be nice to see what is causing all of the symptoms and it would be nice to not feel so sick all the time. I see a specialist in a few weeks, so I'll update when I know more :) Keep your fingers crossed that I'm not allergic to everything that I am used to eating.........