Re: EG in adults

September 30, 1999

Re: [eosinophilic gastroenteritis] EG in adults

Judy,

TPN stands for total parenteral nutrition. It is " food " delivered via a

central line which is like a permanent IV that feeds almost directly into your

heart. The risks are high and many children are lost to the infections from the

line. Still others will not make it becuase TPN long term destroys the liver

and other vital organs. THe kids on this cannot take any food via G-tube (a

tube inserted directly into the stomach) or by mouth. For adults, TPN carries

the same infection risk, but the damage to the organs does not happen as rapidly

(usually).

sure doesn't sound like fun.

Have your kids been checked for EG?

MY OLDEST DAUGHTER (23) HAD A STOMACH BIOPSY SEVERAL YEARS AGO BUT THEY DIDN'T

FIND ANYTHING. tHEY DID FIND THAT HER STOMACH EMPTIES SLOWLY AND WAS ALL TORN

UP. WHEN SHE FINALLY SAW AN ADULT GI THEY PUT HER ON ANTIBIOTICS FOR A MONTH

AND THEN SCOPED HER AGAIN AND HER STOMACH WAS CLEAR. ONLY MINOR SYMPTOMS SINCE.

MY OLDEST SON (30) IS THE ONE HAVING THE MOST TROUBLE AND HE HAS NO MEDICAL

INSURANCE. WHEN I THINK OF ALL THE TIMES AS A LITTLE ONE HE WOULD TELL ME HE

THREW UP IN HIS MOUTH AND THE DOCTORS WOULD SAY IT WAS NOTHING IT MAKES ME WANT

TO SCREAM.

have you tried an elemental diet?

NO

If not, what kind of diet are you on?

JUST AVOIDING THE THINGS I SCRATCH TESTED ALLERGIC TO.

Where are you followed?

TALBERT MEDICAL CENTER. WE ARE IN SOUTHERN CALIFORNIA I HAVE A GREAT

ALLERGIST WHO DOES CONSULT WITH THE GI BUT NOONE WANTS TO TAKE RESPONSIBILITY

FOR MY TOTAL CARE. I HATE GOING TO THE DOCTOR BECAUSE THEY ALL HAVE DIFFERENT

AGENDAS AND NOT ONE REALLY LOOKS AT THE WHOLE PICTURE. MY ALLERGIST COPIED ALL

THE INFO HE HAD WHEN I WAS DIAGNOSED AND HAS BEEN VERY RECEPTIVE TO ANYTHING I

HAVE FOUND. I AM ANXIOUS TO TELL HIM ABOUT THIS GROUP. HE WILL BE THRILLED.

I HAVE NOT LOOKED FOR ANOTHER HMO BECAUSE OF THIS DOCTOR AND OTHERS WHO ARE

TREATING MY YOUNGEST DAUGHTER FOR A KNEE PROBLEM. IT IS REALLY HARD WITH AN HMO

WHEN YOU REALLY LIKE ONE DOCTOR.

With diabetes and being status post an MI, certainly I agree with your

reservations about steroids! I took high dose steroids for many months and

hated the side effects, but I felt better than I had ever felt before. Now I am

GT fed an elemental diet which has helped, but finding the right formula is

proving challenging.

I HAVE BEEN FOLLOWING THE LIST FOR A FEW DAYS AND IT SOUNDS LIKE A DIFFICULT

PROJECT. I CAN'T BELEIVE A MANUFACTURER WOULD PROCESS A SPECIALITY FORMULA ON

THE SAME MACHINES AS MILK BASED FORMULAS. MY FIRST DAUGHTER WAS ALLERGIC TO

MILK, SOY AND MEAT BASED FORMULAS, THERE MAY HAVE BEEN OTHERS BUT I WAS A PRETTY

DUMB 21 YEAR OLD BACK THEN. IF THEY HAD CONTAMINATED ANY OF THEM WITH MILK THEN

SHE MIGHT NOT REALLY HAVE BEEN ALLERGIC TO THE OTHERS.

Welcome again to the list. I am very grateful to have another " big " voice to

add to mine!

dIDN'T YOU JUST RECENTLY GO TO A BIG FORMAL AFFAIR? i CAN'T FIND THE LETTER

BUT THOUGHT IT WAS YOU. IF SO HOW DID IT GO????

tHANKS FOR BEING THERE! JUDY

September 30, 1999

Judy,

TPN stands for total parenteral nutrition. It is " food " delivered via a central

line which is like a permanent IV that feeds almost directly into your heart.

The risks are high and many children are lost to the infections from the line.

Still others will not make it becuase TPN long term destroys the liver and other

vital organs. THe kids on this cannot take any food via G-tube (a tube inserted

directly into the stomach) or by mouth. For adults, TPN carries the same

infection risk, but the damage to the organs does not happen as rapidly

(usually).

Have your kids been checked for EG? It might be interesting... particularly

given my family situation.. By the way, my husband is active duty Navy. there

are distinct differences in eosinophilic esophagitis and eosinophilic

gastroenteritis. For EE, a strict elemental diet has been proven to element the

eos inflammation. Also, the use of Flovent orally has been proven of great

benefit. This has not been the case as much with EG.

have you tried an elemental diet? If not, what kind of diet are you on? Where

are you followed? I think one of the hardest things about adult disease is the

complete ignorance of the GIs and the blind-sided approach of the allergists.

There needs to be a happy medium and as of yet, it does not exist. What you

will learn from this list, is that most of the up-and-coming research and

information is found in the pediatric community and when we find out, we can

teach our adult GIs about it. Fortunately, my kids GI has been very helpful

taking care of me.

With diabetes and being status post an MI, certainly I agree with your

reservations about steroids! I took high dose steroids for many months and

hated the side effects, but I felt better than I had ever felt before. Now I am

GT fed an elemental diet which has helped, but finding the right formula is

proving challenging.

Welcome again to the list. I am very grateful to have another " big " voice to

add to mine!

(eos esophagitis/GT, former TPNr)

(Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian

[eosinophilic gastroenteritis] EG in adults

Okay here goes

Hi my name is Judy. I am new to the group and wanted to say hi to

everyone. I am a 53 year old caucasian female with Eosinophilic Gastroenteritis.

I have been diagnosed with the sub mucosal form of EG. I was diagnosed three

years age and take Gastrocrom and Allegra. Until a few days ago I felt very

alone in the world having this disease. Now I know there are others fighting

the battle of Doctors who think they know but don't.

I would really like to know what other adults with this disease are

going through. Have you found it to be progressive or is there a status quo? I

also have Diabetes so am desperate to stay off the steroids. I had a Heart

attack a year ago and wonder about Hyper eosinophilia. Anyone know if this

disease progresses? I have a wonderful allergist but really no good support on

a general level ( Not enough knowledge.) I have had doctors tell me oh yes they

knew all about it only to discover their ignorance. I knew more than they did.

They hear the words and think they know the definition.

I am the mother of four adult children who all suffer GERD to some

degree. My first child died at three months of age. She had Hirsprungs and was

allergic to most formulas. After reading the postings for several days I wonder

what we would have gone through 30 years ago if she had lived. My husband is

retired from the Marine Corps so I have empathy for the problems the military

families are going through.

October 1, 1999

Steph,

Do you have Dr. Sampson's email address???? I would really be interested in

speaking with him. I absolutely agree with you on the skin testing thing and

Eos's. They don't seem to correlate, but sometimes they do. I was very

discouraged when Dr. Putnam told me that " Not in his life time would they find a

cure or better treatment " . That put me on a big downer since I most likely will

be dealing with it myself.

Love,

P.S. I would have loved to have seen some ranking officers with their mouths on

the floor......ROFLOL. Course your hubby probably wouldn't be too keen on that

idea. LOL. Well, if I ever get one.......an Ng for now.......I am going to

dead the " oh are you on oxygen " ???? Or in Spencer's case with his TPN and G/J

tube feedings...... " oh that is a great idea, a leash " ! I ABSOLUTELY HATE THAT

ONE! My husband just ignores it...........I pull up his shirt and show them

that is isn't a lease. About a week ago we had this happen and I didn't

hear......of course my husband just smiled and laughed. I would have pulled up

his shirt and said " Now would you like a leash like this??? "

Re: [eosinophilic gastroenteritis] EG in adults

Judy--

I wanted to take a minute to talk about allergic foods and eosinophilic

inflammation. This is the big sticking point between GIs and allergists. There

is NO evidence that there is a link between foods that skin test positive to and

eosinophilic inflammation. Some people have symptoms to food they skin test

NEGATIVE to and NO symptoms to foods they skin test POSITIVE to. There are

studies (in the pediatric community) that evidence a free amino-acid based diet

(no food proteins) does eliminate the eosinophilic inflammation so it would seem

that food protein at least does play some part. However, the exact mechanism

that causes the eos to migrate to the GI tract in such large numbers is still

unknown. there was another adult on this list (kenneth who I think has moved

on-- did anyone keep his Email?) who very much on his own, found a very simple

broken down restricted diet that would control his disease. He used the best

known strategy to do this which was strict open food challenges. Certainly you

can have other systemic symptoms to foods that you are skin test positive to,

even if there is no GI/eos reaction and I am not suggesting that you ignore a

skin test positivity, just to realize that it may/may not have anything to do

with your EG symptoms. Also, you may check with your allergist and see if

he/she has been in contact with Dr. Hugh Sampson, now at Mt. Sanai who is the

allergy GURU/GOD of the allergic side of eosinophilic gastropathies. He is a

world-reknown allergist and yours should certainly have heard of him even if he

does not know Dr. Sampson is knowledgeable in the field of EE/EG/EC.

Just a few tidbits I wanted to pass your way.

(eos esophagitis/GT, former TPNr)

(Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian

PS -- We did go to a ball last week and I had a great time! I just pushed the

food around on my plate, my husband took a few bites off my plate to look like i

had eaten some... I drank a lot of water and talked a lot and no one at the

table seemed to be uncomfortable with the fact that I was not (really) eating.

In retrospect my husband and I thought about what would have happened had I

hooked myself up to my pump through that dress at the table. We figured about

30-40 people around us would have hit the floor.... the thought is quite amusing

-- a bunch of high ranking stuff shirt military types completely losing their

cool!!!!

October 1, 1999

Steph,

Quite frankly I was shocked myself.......I felt awful. I think that he was

referring to a cure and that there are so few of us that have EE/E.G./EC that

there are not the funds to really get it going. But I am praying that this will

change. Hey, maybe he was in a bad mood. I sure hope so. Cause I love him as

a doc. He is very up on the knowledge. He doesn't even want Spencer to see an

allergist, cause he doesn't even believe that they coincide. Spencer is on

Zyertec though for minor stuff, like grass and weed and stuff. But HE

prescribed it.

Hey, why aren't you gone yet to Walter ?? Has something changed?

Love ya,