Many of you are here because you already know what it is because you or a family member have been diagnosed with it and you're looking for more information.
If you don't know what EE is, here are the basics:
Eosinophilic Esophagitis is a condition in which there are eosinophils (a type of white blood cell) in the tissues of the esophagus. Normally, they should not be there. Certain things may trigger the production of these cells in the esophagus, such as an allergic reaction to a food(s) or other environmental things. They then cause inflamation of the esophagus.
The inflamation causes symptoms such as nausea and vomitting, food impaction, and difficulty swallowing just to name a few.
I highly recommend you visit the following links for more information on eosinophilic esophagitis as to what it is, symptoms, treatment, etc. These sites explain it so well that I feel I should just let them explain it rather than rewrite it for you.
http://www.apfed.org/ee.htm#ee
http://www.chop.edu/consumer/jsp/division/generic.jsp
http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/about/
Thursday, February 28, 2008
Patch Testing on Children with Eosinophilic Esophagatis
We went through our first round of allergy patch testing this month. Before we scheduled the appointments I looked for information about it in regards to children and why it's done. I couldn't find very much at all and was quite frustrated. I was also frustrated because the staff at the office, or at least the person I spoke with was not able to answer my questions without playing relay to someone else. She shouldn't have been on the phone telling us what to do if she couldn't answer my questions. For example, we were told to bring jars of babyfood for them to put on my son's back. The meat products are not pure, they have corn startch. My son has tested allergic to corn previously, so I thought it would be wrong to use it because it would give false positive results. Question after question and we finally got it all sorted out. (By the way, they ended up asking the doctor and he said that the corn starch shouldn't pose a problem "because it's only the starch". I wonder why then I'm avoiding it in all his foods then??) Anyway....
In my research for information I found a lot of references to patch testing for contact dermatitis and the main things it tested for was metals and chemicals that irritate peoples skin over time. I was totally confused how this related to eosinophilic esophagitis. We were going to test for foods only, it turns out, despite the paperwork they mailed me. I did finally find ONE great letter from Dr. Jonathan Spergel from Children’s Hospital of Philadelphia on the APFED website ( http://www.apfed.org/faqs.htm Question #4) that explained in much greater detail about why we do patch testing and what it indicates in EE. Basically, scratch testing and patch testing examine different "systems". Scratch testing shows immediate reactions to foods, patch testing shows delayed reactions to foods. People who have delayed reactions to foods have a difficult time pinpointing the culprit foods. This test should help with that.
We had just done scratch testing in January and my son had tested negative for several things that he had tested positive to in the past. We were very excited that we might be able to return some foods to his diet. With the patch testing though, he still tested positive to most everything and a couple new things! And if you test positive on either test, that food is recommended to be removed from the diet. So back to square one. But I do believe in my heart that his body must be improving since he got over his wheat allergy according to both tests, and he is not testing "as positive" as in the past to other things, if there is such a thing. Allergy testing is so not cut and dry.
Our experience with the patch testing in general was very good. It only took about 15 min. to get all the little cups of food taped onto my son's back. He thought it was quite hysterical that he was wearing baby food on his back! He just turned four so they had a little difficulty finding room for five strips of food cups, but it all worked out. He wore those test strips for 48 hours. He didn't complain about any discomfort or itching or anything. I think he was most annoyed that I wouldn't let him play too hard and get sweaty! After 48 hours, the office removed the test strips and took the initial reading. It didn't look too bad at the time. I was able to see two spots that looked positive. More grew over the 24 hour period until the next reading. My son still had no complaints of itching or anything which was good. At the final reading though, he was covered in spots. He tested positive for quite a few things. It's now over two weeks later and he still has a spot where he tested positive for egg (his most serious allergy).
I hope this helps other parents who are wondering what to expect when taking their child in for patch testing, for EE or for allergies in general. I'm attaching some photos of my son's tests just to share.
In my research for information I found a lot of references to patch testing for contact dermatitis and the main things it tested for was metals and chemicals that irritate peoples skin over time. I was totally confused how this related to eosinophilic esophagitis. We were going to test for foods only, it turns out, despite the paperwork they mailed me. I did finally find ONE great letter from Dr. Jonathan Spergel from Children’s Hospital of Philadelphia on the APFED website ( http://www.apfed.org/faqs.htm Question #4) that explained in much greater detail about why we do patch testing and what it indicates in EE. Basically, scratch testing and patch testing examine different "systems". Scratch testing shows immediate reactions to foods, patch testing shows delayed reactions to foods. People who have delayed reactions to foods have a difficult time pinpointing the culprit foods. This test should help with that.
We had just done scratch testing in January and my son had tested negative for several things that he had tested positive to in the past. We were very excited that we might be able to return some foods to his diet. With the patch testing though, he still tested positive to most everything and a couple new things! And if you test positive on either test, that food is recommended to be removed from the diet. So back to square one. But I do believe in my heart that his body must be improving since he got over his wheat allergy according to both tests, and he is not testing "as positive" as in the past to other things, if there is such a thing. Allergy testing is so not cut and dry.
Our experience with the patch testing in general was very good. It only took about 15 min. to get all the little cups of food taped onto my son's back. He thought it was quite hysterical that he was wearing baby food on his back! He just turned four so they had a little difficulty finding room for five strips of food cups, but it all worked out. He wore those test strips for 48 hours. He didn't complain about any discomfort or itching or anything. I think he was most annoyed that I wouldn't let him play too hard and get sweaty! After 48 hours, the office removed the test strips and took the initial reading. It didn't look too bad at the time. I was able to see two spots that looked positive. More grew over the 24 hour period until the next reading. My son still had no complaints of itching or anything which was good. At the final reading though, he was covered in spots. He tested positive for quite a few things. It's now over two weeks later and he still has a spot where he tested positive for egg (his most serious allergy).
I hope this helps other parents who are wondering what to expect when taking their child in for patch testing, for EE or for allergies in general. I'm attaching some photos of my son's tests just to share.
Sunday, February 24, 2008
Meatloaf Recipe - No eggs, dairy, wheat, corn
My husband has been bugging me to make meatloaf for a very long time now. We used to eat it quite often. The funny thing is that the recipe we used, he had gotten out of a college cookbook about how to cook in your dorm room. It’s the best meatloaf we’ve ever eaten (sorry Mom).
I haven’t made it since we found out our son’s food allergies. But the other day I decided to see if I could find another recipe for meatloaf that didn’t contain egg, milk, wheat or corn. I found a couple but they didn’t sound like they would be as satisfactory. So I decided to just try to alter my own recipe and see if it survived.
In my research I found oatmeal to substitute the bread or corn crumbs. Now, why I hadn’t figured that one out a year ago, I have no idea. So I used oats instead of bread crumbs, rice milk instead of milk and Ener-G egg replacer for the egg. I saw other egg substitutes but didn’t think it would make much difference anyway since the meatloaf would most likely hold it’s form.
We were delighted when we tasted our meatloaf tonight! You have no idea how good it made me feel to be able to cook a meal that everyone enjoyed and was safe for everyone to eat! I’m still floating on clouds. I also made mashed potatoes and used the rice milk. For my husband and I, we got to add some margarine to our potatoes and had peas as well (my son is also allergic to peas.) When I mentioned peas he stated “I”M ALLERGIC TO PEAS!” Good for him to take charge of himself. Anyway, here is how I made my meatloaf…
Ingredients:
1 1/2 lb. ground beef
1 small onion, chopped fine
2 tblsp green pepper, chopped fine
1/2 cup oats
2 tblsp organic ketchup (no corn syrup)
2 tsp salt
1/2 tsp black pepper
1 tsp sugar
2/3 cup Rice milk
1-1/2 tsp Ener-G egg replacer and 2 tblsp warm water
Directions: Preheat oven to 350 degrees. Place beef, onion, green pepper, oats, ketchup, salt, black pepper and sugar in mixing bowl. Mix together. Add the rice milk and egg replacer and mix thoroughly. Place meat mixture into loaf pan and put in oven. Bake 1 1/2 hours total. While it’s cooking, make sauce topping…
Sauce Ingredients:
3 heaping tablespoons brown sugar
1/4 cup organic ketchup
1 tsp dry mustard or 1 tblsp prepared mustard
Directions: Combine all sauce ingredients in a small bowl and stir well until the sugar is dissolved. After loaf has been cooking for at least 30 min., spoon some sauce over the top of the loaf. Continue to baste from time to time if desired.
I hope you enjoy this meatloaf as much as we did. We’ will definitely be putting this back on our menu!
I haven’t made it since we found out our son’s food allergies. But the other day I decided to see if I could find another recipe for meatloaf that didn’t contain egg, milk, wheat or corn. I found a couple but they didn’t sound like they would be as satisfactory. So I decided to just try to alter my own recipe and see if it survived.
In my research I found oatmeal to substitute the bread or corn crumbs. Now, why I hadn’t figured that one out a year ago, I have no idea. So I used oats instead of bread crumbs, rice milk instead of milk and Ener-G egg replacer for the egg. I saw other egg substitutes but didn’t think it would make much difference anyway since the meatloaf would most likely hold it’s form.
We were delighted when we tasted our meatloaf tonight! You have no idea how good it made me feel to be able to cook a meal that everyone enjoyed and was safe for everyone to eat! I’m still floating on clouds. I also made mashed potatoes and used the rice milk. For my husband and I, we got to add some margarine to our potatoes and had peas as well (my son is also allergic to peas.) When I mentioned peas he stated “I”M ALLERGIC TO PEAS!” Good for him to take charge of himself. Anyway, here is how I made my meatloaf…
Ingredients:
1 1/2 lb. ground beef
1 small onion, chopped fine
2 tblsp green pepper, chopped fine
1/2 cup oats
2 tblsp organic ketchup (no corn syrup)
2 tsp salt
1/2 tsp black pepper
1 tsp sugar
2/3 cup Rice milk
1-1/2 tsp Ener-G egg replacer and 2 tblsp warm water
Directions: Preheat oven to 350 degrees. Place beef, onion, green pepper, oats, ketchup, salt, black pepper and sugar in mixing bowl. Mix together. Add the rice milk and egg replacer and mix thoroughly. Place meat mixture into loaf pan and put in oven. Bake 1 1/2 hours total. While it’s cooking, make sauce topping…
Sauce Ingredients:
3 heaping tablespoons brown sugar
1/4 cup organic ketchup
1 tsp dry mustard or 1 tblsp prepared mustard
Directions: Combine all sauce ingredients in a small bowl and stir well until the sugar is dissolved. After loaf has been cooking for at least 30 min., spoon some sauce over the top of the loaf. Continue to baste from time to time if desired.
I hope you enjoy this meatloaf as much as we did. We’ will definitely be putting this back on our menu!
Thursday, February 21, 2008
Learning to Cook!
I have never enjoyed cooking. When I was single I could live on frozen pizza, pasta, frozen dinners and peanut butter toast. When I got married we upgraded to full meals that consisted of Hamburger Helper and tacos, pasta with bread and other very very simple meals. Now, with a family and a huge list of foods we must avoid, I am being forced to cook from scratch, real food.
Now, that’s not such a horrible thing. It has in fact made us eat a lot more fresh fruits and vegetables. I would say we eat much healthier now than in the past, minus the fact that my son can’t eat chicken, so most of our meals are beef or pork, mostly beef because I just can’t get pork to taste good except for good ‘ole ham. (Boy, we really miss chicken!) But it’s not practical to make several entres for dinner. It’s just not going to happen. One meal for everyone! This isn’t a restaurant, you know!
So, I have been learning to cook out of necessity. And I have learned to substitute recipe ingredients out of necessity. And I have to say, we’re managing. I actually learned to make some awesome pancakes… they were so much better than the boxed ones you add water to that my husband asked me not to go back to those! But now we’ve been thrown the new curve of no milk. So back to the drawing board with the pancakes to see how I can make an edible pancake without eggs or milk. I consider myself still very new at this. New to cooking in general, and very new to allergy cooking. I know there are plenty of experienced Moms out there. I’ve browsed many a website looking for recipes, allergan free recipes, etc.
I’m hoping that by the time I master this, he will no longer have to avoid these food items. I’m praying for Murphy’s law in this case! Though, I think I will continue to cook better meals for the family. It’s just the right thing to do, and it seems to get a little easier every day.
Now, that’s not such a horrible thing. It has in fact made us eat a lot more fresh fruits and vegetables. I would say we eat much healthier now than in the past, minus the fact that my son can’t eat chicken, so most of our meals are beef or pork, mostly beef because I just can’t get pork to taste good except for good ‘ole ham. (Boy, we really miss chicken!) But it’s not practical to make several entres for dinner. It’s just not going to happen. One meal for everyone! This isn’t a restaurant, you know!
So, I have been learning to cook out of necessity. And I have learned to substitute recipe ingredients out of necessity. And I have to say, we’re managing. I actually learned to make some awesome pancakes… they were so much better than the boxed ones you add water to that my husband asked me not to go back to those! But now we’ve been thrown the new curve of no milk. So back to the drawing board with the pancakes to see how I can make an edible pancake without eggs or milk. I consider myself still very new at this. New to cooking in general, and very new to allergy cooking. I know there are plenty of experienced Moms out there. I’ve browsed many a website looking for recipes, allergan free recipes, etc.
I’m hoping that by the time I master this, he will no longer have to avoid these food items. I’m praying for Murphy’s law in this case! Though, I think I will continue to cook better meals for the family. It’s just the right thing to do, and it seems to get a little easier every day.
Welcome to Winning Against Eosinophilic Esophagatis
I wanted to start this blog to share with people the challenges families face when a child suffers from the condition called Eosinophilic Esophagitis. I didn’t know anything about food allergies or eosinophilic esophagitis (EE) prior to my son being born in 2004. Since this all began, we’ve been through so much. In my desperation and search for information and support I have read so many other stories about children with EE. Some of those stories brought me to tears and have made me truly grateful that our situation is what it is, and not any worse. My heart goes out to all the families dealing with EE and food allergies, no matter how little or how much it affects you. I’m hoping that by sharing our story more people will become aware of this condition, and that it might help some families get some support or answers. I know for a long time we didn’t even know what was going on, but now we have a diagnosis that we can work with. I hope that we all lead a winning battle against this life changing condition.
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