Eosinophilic Esophagitis (EE)..anyone?

[Muushka]

I have just been diagnosed with EE. After 18 years, an answer!

So, if you have it, how was it treated? What drugs? Did you eliminate any foods from your diet? Did it help?

Just beginning this EE, in the 'investigative' mode. Thanks

PS Eosinophils are white blood cells that are formed in response to allergens and hang around in the esophagus and cause trouble.

 

[Piglet]

My DD was diagnosed with it when she was 4. Her GI treated her with Prilosec - she took it 4 times through out the day and ended up needing one in the middle of the night. She was in such pain before treatment. One it could heal some she was able to reduce the medicine and ended up just on Pepcid twice a day.

She also has a disease where she needs to eat and take medication every few hours which agrivated her reflux and made it worse.

Melinda

 

[sunkist]

My dd9 has EE to. She is allergic to corn. She takes prevacid and Pulicort. We thought she was doing great, until she had a upper scope and they did a biopsy of her esopghas(sp?) and her Eosinophils was a high count. We have been dealing with this for several years and it seems the count gets higher, each time they do a biopsy, the doctor really does not know what to do, so we got in to see the Cincinnit Childrens hospital they have a clinic and reseach labs just for EE. We go in a few weeks. I hope we can get some good answers. Between the allergist and her GI doctor, we cannot get the same answer. One tells us one thing, the other says something else. I understand this is a fairly "new" condition, but we are hoping for something.
I'll let everyone know how it went.

 

[LaraK]

My five year old has EE. He is allergic to Beef, Chicken, Turkey, Milk, Eggs, Peanuts, Tree nuts, Peas, Pears, Bananas and Chocolate. Because he has so few proteins, he now is on an elemental formula to provide his nutrition. He drinks his, so he doesn't need an ng tube or a peg yet.

Cincy Children's is the best. Many eos (short for eosinophilic disorders) patients go there. I would recommend you check out the APFED and CURED websites. Both have tons of information. There was also just an article that's hitting a lot of papers. http://www.southbendtribune.com/article/20090922/Lives/909229948/1047/Lives

First and foremost, take a deep breath. Once you have a diagnosis, you have to decide how you want to approach this. Some people use medications. This masks the symptoms, but is not really addressing the issue. The most successful way of dealing with EE is to eliminate the foods that are causing the reactions. To find out what foods you will want to pull from your diet, you need to do all three types of allergy testing. They include the traditional blood tests and prick tests, which test for IgE reactions, but you also have to long term patch testing to identify the non IgE reactions. If you need any more information, please feel free to PM me. Unfortunately, I've become a bit of an expert in the last three years since my son's diagnosis.

 

[Muushka]

Thank you for your answers. Interesting disease, to say the least. I read that it does affect children and mostly men. Of which I am neither. My treatment is to swallow (not inhale) Flovent (a steroid used by asthmatics). Is your daughter inhaling her pulmicort or swallowing it?

Out of curiosity, how high was the eosinophil count and how often does she have the endo? I have only had 1 endo and the path report read 35 eosinophils/hpf. My understanding is that >15/hpf is needed to make the diagnosis. So I filled that requisition.

Have any of your children been tested for food allergies? My GI recommended cutting out eggs, milk, wheat and soy. I am doing all but the milk. I cannot give up that much at one time!

Sunkist, what are the 2 different things being said?

I am an adult, so I feel for these kiddos and their parents who have EE.

 

[LaraK]

My son's count was greater than 55 eosinophils per high powered field, but that's a masked number (he's an asthmatic, so he takes inhaled steroids for that and it can cause undercounts). I know kids with much higher numbers. We have some patching in the esophagus, but not rings yet.

 

[sunkist]

My dd9 count last time was above 75. her allergist says if she is going to be on any medicine for long term this will be the meds. Her Gi says we must get her off the medince it could have long term affect. Allergist says she will grow out of the allergy, GI doc says no. I also think with the GI doc we have a lot of mis communication. She is from a different country both my DH and I will go to appts together. For example: She tells us only take her prevacid if dd needs it one visit, then the next visit tells us she needs to be taking it all the time. And when we leave we will say to each other thats not what was said the last time.

I think she is allergic to other foods and maybe some enviromental too, but they won't test her. We are looking so forward going to Cin. Childrens.

 

[sunkist]

LaraK have you all been to Cincinnati Childrens Hos?

 

[Muushka]

My five year old has EE. He is allergic to Beef, Chicken, Turkey, Milk, Eggs, Peanuts, Tree nuts, Peas, Pears, Bananas and Chocolate. Because he has so few proteins, he now is on an elemental formula to provide his nutrition. He drinks his, so he doesn't need an ng tube or a peg yet.

Cincy Children's is the best. Many eos (short for eosinophilic disorders) patients go there. I would recommend you check out the APFED and CURED websites. Both have tons of information. There was also just an article that's hitting a lot of papers. http://www.southbendtribune.com/article/20090922/Lives/909229948/1047/Lives


First and foremost, take a deep breath. Once you have a diagnosis, you have to decide how you want to approach this. Some people use medications. This masks the symptoms, but is not really addressing the issue. The most successful way of dealing with EE is to eliminate the foods that are causing the reactions. To find out what foods you will want to pull from your diet, you need to do all three types of allergy testing. They include the traditional blood tests and prick tests, which test for IgE reactions, but you also have to long term patch testing to identify the non IgE reactions. If you need any more information, please feel free to PM me. Unfortunately, I've become a bit of an expert in the last three years since my son's diagnosis.

Lara, I missed your post because I was on the phone and then hit reply.

I know that the deep breath was for the mom with the uncertain diagnosis. But it made me laugh. Deep breathing is the problem I have experienced for 18 years. It hurts (tightness, burning sensation) when I breathe deeply and hurts 24/7. There was 1 day in the past 18 years that it did not hurt. I don't know what was different that day, but it was nice.

The docs have been traveling down the asthma road all that time because it is associated with breathing. When I finally decided to get to the bottom of it I complained about it to my family physician until he finally sent me to a pulm doc. He did the breathing test, which was normal (previously it was mildly abnormal, asthma was improved due to environmental changes). He kept me on my asthma meds for a year, but then he told me to go off of my asthma meds after he did a bronchioscope which was normal.

When I went off of them, I developed heartburn, pretty bad too (in addition to the burning when I breathe). So he sent me to the GI. That is how I got EE. Well, the dx anyway.

 

[Muushka]

My dd9 count last time was above 75. her allergist says if she is going to be on any medicine for long term this will be the meds. Her Gi says we must get her off the medince it could have long term affect. Allergist says she will grow out of the allergy, GI doc says no. I also think with the GI doc we have a lot of mis communication. She is from a different country both my DH and I will go to appts together. For example: She tells us only take her prevacid if dd needs it one visit, then the next visit tells us she needs to be taking it all the time. And when we leave we will say to each other thats not what was said the last time.

I think she is allergic to other foods and maybe some enviromental too, but they won't test her. We are looking so forward going to Cin. Childrens.

Well then, my 35 eos are nothing compared to these kiddos high counts!

My doc won't test me either. He said that it always comes back negative and there is no sense in doing it. In the meantime, I am in a avoid this because you might be allergic mode. Oye.

Hugs to all you parents going through this with your children. Hugs for them too.

 

[jfoofj]

My 8 year old DS was diagnosed with this in February. He has had 2 endoscopies, one to diagnose in January and a followup one in August. He also had a pH probe placed during the first scope, and it showed that he has pretty signficant reflux (GERD). The gastro doc put him on 40mg of Omeprazole a day and we eliminated dairy from his diet (he is allergic to milk protein, but never showed any outward symptoms of the allergy, aparently just the esophagus was affected). The followup scope shows that his esophagus is much improved (he had esophageal rings and a high eosinophil count at the first scope) and his eosinophil count is almost nothing. If there wasn't significant improvement we were going to start the swallowed Flovent, but luckily it seems we can control it with the acid meds and diet.

Good luck! This is a fairly newly diagnosed disease, and there is a ton of info out there but I have found that people really haven't heard about it.

 

[Muushka]

This is a fairly newly diagnosed disease, and there is a ton of info out there but I have found that people really haven't heard about it.

Like me for example, and I am in the medical field .

And wish I had $1 for every eosinophil I have counted! I would be very rich

(30+ years in clinical laboratory)

 

[luvmyboys]

If you all don't mind me asking, what were the symptoms you had (or your children had) that led to your diagnosis?

My DH has had increasing problems swallowing food over the past 15 years, to the point now where almost every meal he chokes. He is allergic to shellfish, but has never gone back for more testing. (His father was recently diagnosed with allergies to 20 different foods, and had similar swallowing issues.)

I am hoping that some of the info from this thread will inspire him to FINALLY go to the Doctor. Apparently his father had been told by previous doctors that "it was all in his head," which has made my DH leery of going for his own issues.

 

[Muushka]

If you all don't mind me asking, what were the symptoms you had (or your children had) that led to your diagnosis?

My DH has had increasing problems swallowing food over the past 15 years, to the point now where almost every meal he chokes. He is allergic to shellfish, but has never gone back for more testing. (His father was recently diagnosed with allergies to 20 different foods, and had similar swallowing issues.)

I am hoping that some of the info from this thread will inspire him to FINALLY go to the Doctor. Apparently his father had been told by previous doctors that "it was all in his head," which has made my DH leery of going for his own issues.

Difficulty swallowing is one of the key symptoms. If it was me, I would have it checked. When they do the endoscopy for the gross exam and biopsy for the eosinophils, they may also stretch out any area that they think looks like it may be causing problems.

I personally do not have that symptom (well, maybe rarely) and he did not stretch mine out. I think they thought the complaints I had for the past 18 years were all in my head too! (not really, they all did send me off when they couldn't find a cause).

 

[LaraK]

I didn't go to Cincinnati, I went to University of Maryland for the pediatric allergist (who is doing research on EE) and we see a Peds GI doc at another local hospital. I'm also in healthcare and that helps. I know a lot of other eos moms (we have a support group on Facebook) who go to Cincinnati Children's and they are all very happy. I think one of the most important things is for me to stay on top of new information and advocate for my son. He started Kindergarten this year and it's been hard. He's allergic to so many things, he really can not eat anything not given to him by my hand. We're going back in a few weeks to see if we have to remove more foods.

Someone asked what the symptoms are. Some people show no symptoms. Others have everything from heartburn like symptoms to recurrent projectile vomiting (what we had) to food impactions, to refusal to eat, to severe chest pain to everything I've named. Many of the parents of these kids also report other conditions. Asthma and eczema are the two most common, but many kids have joint pain, sudden onset massive fatigue or other strange issues. My son gets "mystery fevers". Extremely high fevers for no reason.

Anyway, more and more people are being diagnosed. It's worth a question about biopsies if you have symptoms that are not resolved by traditional treatments for heartburn. Biopsy is the only way to diagnose eosinophilic disorders.

 

[jfoofj]

If you all don't mind me asking, what were the symptoms you had (or your children had) that led to your diagnosis?

My DH has had increasing problems swallowing food over the past 15 years, to the point now where almost every meal he chokes. He is allergic to shellfish, but has never gone back for more testing. (His father was recently diagnosed with allergies to 20 different foods, and had similar swallowing issues.)

I am hoping that some of the info from this thread will inspire him to FINALLY go to the Doctor. Apparently his father had been told by previous doctors that "it was all in his head," which has made my DH leery of going for his own issues.

My son had issues with difficulty swallowing. He never choked, but he would get food stuck in his throat and have to either work it up or work it down. He was also a very, very slow eater due to this and he has always been a little underweight. His pediatrician sent us to a gastroenterologist because of the difficulty swallowing issue and it took off from there. We are in Massachusetts, so we go to the pediatric gastro clinic at UMASS in Worcester, and so far we have had a positive experience there.

 

[luvmyboys]

My son had issues with difficulty swallowing. He never choked, but he would get food stuck in his throat and have to either work it up or work it down.

This is exactly what happens to my DH. (And his father). We've narrowed down some of the potential foods that trigger it on our own (beef, wheat, tomatoes) but I really am pushing for him to go in & talk to the doctor. There have been several times lately that it has taken over 15 minutes for his food to either go down or come back up, and I was afraid we'd have to call 911.

As much as I wish none of you or your families had to go through this, I really appreciate coming across this thread. I feel like we may finally be on the road to getting his health back. Thanks everyone!

 

[sunkist]

When I was pregnant with dd9 I had bad heart burn, I was sick all of the time, a few months after I had her I had to have a upper scope done and they said I had alot of scar tissue from throwing up and strech out my esop.
Every once in a while food does get stuck, but it usually happens when im eating to fast, my father has the same problems, so did my grandmother-- so it sounds like to me its family genes!!

 

[Muushka]

This is exactly what happens to my DH. (And his father). We've narrowed down some of the potential foods that trigger it on our own (beef, wheat, tomatoes) but I really am pushing for him to go in & talk to the doctor. There have been several times lately that it has taken over 15 minutes for his food to either go down or come back up, and I was afraid we'd have to call 911.

As much as I wish none of you or your families had to go through this, I really appreciate coming across this thread. I feel like we may finally be on the road to getting his health back. Thanks everyone!

My father had a hard time swallowing also (I guess he had EE too). He was admitted to the hospital twice for food stuck in his throat. It came up eventually (they actually put Adolph's meat tenderizer down his throat once (to this day I still don't believe they did that!)), but once he was being wheeled down to the OR and just prior it came up. As he got older it got worse.

 

[bkrieger]

Hello,
I am a 34 year old male, and I was wondering if someone can give me some advice. I was diagnosed with Eosinophilic esophagitis about a year ago after an endoscopy, however, my GI DR. didn't properly explain to me what it was at the time. He basically said it was inflammation from food allergies, and I should get food allergy tested. When I got food allergy tested, It came up I am allergic to Wheat, soy, dairy, tomatoes, chicken, beef, banana, certain nuts, and orange juice. The allergist, who wasn't aware of this condition, basically said the numbers aren't that high, and shouldn't affect me too much. I basically kind of ignored it at the time, and didn't change my diet until the last month, when I have been doing more research on the disease. I have not eliminated most of the allergens from my diet. My question is, other than removing allergens, and swallowed flovent, is there anything out there to help with this condition? Also, is it necessary to remove all allergens, and does the diet change get rid of symptoms. I am concerned I am not getting the proper nutrients with the diet change.
Thanks so much for the help.

Brad