Re: EE/EG as allergic disorder

[Guest guest]

In a message dated 4/27/99 8:20:36 AM Eastern Daylight Time,

eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

> What caught my attention with him was that he

> presented EG as an allergic disorder with GI symptoms. Very often I feel

> that I am dealing with the allergist for one thing and the GI for another

> thing. He pulled these two together.

Maybe I am missing something. I thought EE/EG is esophagitis/GE theorized to

be due to undiagnosed allergies, is there some other theory?

Lynda (still trying to understand)

[Guest guest]

In a message dated 4/27/99, 9:31:52 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<

>

Lynda,

You are not missing anything. I am being vague. Our GI definitely feels the

EE is allergy related. I just feel that when we see the GI we look at the GI

side of this disorder and touch on the allergy issue. When we see the

allergist we look at the allergy problems and don't look at the GI symptoms.

I would be interested in seeing an allergist who will look at all of

's allergy problems and the EE.

The last time MIchael had an accidental exposure to milk he had a scary

reaction. He immediately grabbed his throat, started crying in pain, started

gasping for air and then vommitted a ton of mucous. Milk has never made it

past his esophagus. I wonder is this an anaphylactic reaction or is this the

EE acting up.

I think I am just looking for a different point of view or another medical

opinion. Dr. Liacouras has been wonderful in helping get much better

but I guess I feel I still have to keep looking for answers.

Sorry if I am not making much sense. I am having a hard time putting this

into words.

Jen

(, 11/7/95, EE, Food allergies, asthma)

[Guest guest]

In a message dated 4/27/99 10:21:14 AM Eastern Daylight Time,

Jenericm@... writes:

<<

I would be interested in seeing an allergist who will look at all of

's allergy problems and the EE. >>

:

THen it worth driving to New York CIty and seeing Dr. Sampson who is an

allergist who specializes in both. He is wonderful and so it his

nutristionist. SHe is working with the nutrionist here (with Dr. Sampson's

input) of what they can try to feed him and what not to. HE WANTS TO DO THE

FOOD CHALLENGES HIMSELF. He wants them to teach him to eat first and then

deal with any food challenges. He is great and I have his number is you want

- although it takes about 4 months to get an appointment.

Love,

Sharon

mommy to Jake (6) and fraternal twins (3/30/97) - Cole -(nda) and Clayton

(eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat),

g-tube, Nissen, latex allergy, mild DD, undiagnosed neuro issues, sleep

problems, sensory integration disorder and now tremors and suspected

metabolic disorder or genetic disorder, WHEN WILL THIS END)

[Guest guest]

>Maybe I am missing something. I thought EE/EG is esophagitis/GE theorized

to

>be due to undiagnosed allergies, is there some other theory?

Hi all,

My allergist and me have come to a similar *theory* about my EG problem...

While clinically diagnosed as EG by the GI in 1994, we actually think my EG

is a similar to eczema, but on the inside. Eczema is a typical food allergy

reaction.

I had SEVERE and painful external eczema around the time of the EG attacks,

and I only started to modify my diet to reduce the eczema. When I got rid

of all my food allergens, my eczema cleared up (essentially gone and in

remission), and as a side benefit, my EG symptoms disappeared too. I only

get an EG symptom when I eat a specific known allergens. I know soy, corn,

and uncooked potato will cause EG flares, but I am sure other foods will

also cause problems, but I haven't had any of those allergens since I

started a VERY strict diet 1.5 years ago.

At the time of diagnosis, the GI and " experts " said I will live with EG

symptoms for the rest of my life, make frequent trips to the hospital, for

they do not know what triggers EG. They said I will have to " live with

it " . I have come to realize that most GI's (and most doctors) have no idea

on how to identify and treat food allergies.

If my experience is any indication, for many people, the answer to living a

normal life with few EG problems is to get a handle on your food allergies.

Treat the food allergies, and you can possibly reduce/eliminate the EG.

For me, the two are directly linked, and if you are true to your food

elimination/rotation diet, you should be able to find the offending foods.

The first place to start is to get a full immunoassay blood test for IgE and

IgG antibody allergens. The blood test will help to identify your food

allergens (the tests are not 100% accurate, but they will find most of the

allergens).

Kenny

[Guest guest]

>The last time MIchael had an accidental exposure to milk he had a scary

>reaction. He immediately grabbed his throat, started crying in pain,

started

>gasping for air and then vommitted a ton of mucous.

This is very typical of my anaphylactic reactions. I vomit and drool like

crazy.

Kenny

[Guest guest]

In a message dated 4/27/99, 1:47:39 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<< He is great and I have his number is you want

- although it takes about 4 months to get an appointment.>>

I think I may make an appointment to see him. I spoke to the GI today and am

waiting for someone to call back from the endoscopy suite at CHOP.

is going to have another endoscopy in the next few weeks. After we get those

results back, I think I will make an appointment with Sampson.

is having the endoscopy done now because he has been complaining of

chest pain, his appetite seems to be dwindling and he wakes every night

crying in pain. His problems are not real bad currently(compared to what

they used to be like) but I want to make sure things don't get worse.

I hope things are going well for Clayton.

Jen

( 11/7/95, EE, food allergies, asthma)

[Guest guest]

I agree completely with Kenny. We eat nothing but elemental formula now

and everyone is doing great. NO STEROIDS and interestingly for the

first time in many many years, we don't need Prilosec either.

(idiopathic eosinophilic esophagitis, GT, former TPN'r) and

mom to five boys, all with EE, three with GTs and one on TPN (kody)

[Guest guest]

Steph-

How long have you been off Prilosec? How about the boys? AJ's GI wants to

get her off of it, but i still feel she is a little young to explain what is

going on, and how it effects her. Pain equals whining. She gets miserable,

sucks her fingers and won't talk until she feels better. She was off of it

for about a week, due to insurance problems and we saw a big difference once

she got back on it. But she does eat in addition to Neocate. Not much, but

I feel enough to irritate her.

Phyllis

Mom to AJ--12/22/95, EG, asthma, many food allergies

[Guest guest]

Jen --

Hope you get some answers for MIchael.

For us, the only thing that works is prednisone or complete elemental

diet. THere has been a LOT of success with EE with the use of Flonase.

Have you tried that yet/

(idiopathic eosinophilic esophagitis, GT, former TPN'r) and

mom to five boys, all with EE, three with GTs and one on TPN (kody)

[Guest guest]

Spencer has been on Elemental formula for his whole life and the only way we

can keep him from swelling up inside is to put him on 2mg per Kg of

Prednisone. Are there any children or adults out there that are on the max

dose of steroids and on strictly elemental formula (Vivonex or similar)?

Does he just have it terrible? I feel like I need to start looking for more

answers as well. Spencer has only seen an allergist once because he doesn't

eat anything except Vivonex and/or TPN. Should he see one? He also reacts

to basically everything on the face of the earth. Sometimes I wonder if he

needs to be put in a bubble....

Mum to Spencer 2 1/2 years old.

[eosinophilic gastroenteritis] Re: EE/EG as allergic disorder

From: SJHarlow@...

I agree completely with Kenny. We eat nothing but elemental formula now

and everyone is doing great. NO STEROIDS and interestingly for the

first time in many many years, we don't need Prilosec either.

(idiopathic eosinophilic esophagitis, GT, former TPN'r) and

mom to five boys, all with EE, three with GTs and one on TPN (kody)

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[Guest guest]

I wish that would be something that we could do, but I fear that every

reaction will put him back 10 steps. Since everytime he get's sick etc he

ends up in the hospital and looses more weight. Still 17 lbs. at 2 1/2

years old. I wonder if I am ever going to be able to look forward to

Spencer eating normal food?

[eosinophilic gastroenteritis] Re: EE/EG as allergic disorder

>From: SDidinsky@...

>

>In a message dated 4/27/99 10:21:14 AM Eastern Daylight Time,

>Jenericm@... writes:

>

><<

> I would be interested in seeing an allergist who will look at all of

> 's allergy problems and the EE. >>

>

>:

>THen it worth driving to New York CIty and seeing Dr. Sampson who is an

>allergist who specializes in both. He is wonderful and so it his

>nutristionist. SHe is working with the nutrionist here (with Dr. Sampson's

>input) of what they can try to feed him and what not to. HE WANTS TO DO THE

>FOOD CHALLENGES HIMSELF. He wants them to teach him to eat first and then

>deal with any food challenges. He is great and I have his number is you

want

>- although it takes about 4 months to get an appointment.

>

>Love,

>Sharon

>mommy to Jake (6) and fraternal twins (3/30/97) - Cole -(nda) and Clayton

>(eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat),

>g-tube, Nissen, latex allergy, mild DD, undiagnosed neuro issues, sleep

>problems, sensory integration disorder and now tremors and suspected

>metabolic disorder or genetic disorder, WHEN WILL THIS END)

>

>

>

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[Guest guest]

>NO STEROIDS and interestingly for the

first time in many many years, we don't need Prilosec either.

Steroids, what's steroids? I forgot to mention that I got rid of them too

when I got rid of the allergens. (I had been on steroid maintenance for 3

years for my EG...)

Kenny

[Guest guest]

BJ is on 15 mg of Prednisone and weighs 12 kilos. He is not doing too well and

they are talking of increasing it (but I am scared). He is scheduled to have an

upper GI with a small bowel follow through on May 7th.

Dawn, mommy to Dakota, 6 and BJ, 3(eosinophil gastro, reflux, asthma)

Allred wrote:

>

>

> Spencer has been on Elemental formula for his whole life and the only way we

> can keep him from swelling up inside is to put him on 2mg per Kg of

> Prednisone. Are there any children or adults out there that are on the max

> dose of steroids and on strictly elemental formula (Vivonex or similar)?

> Does he just have it terrible? I feel like I need to start looking for more

> answers as well. Spencer has only seen an allergist once because he doesn't

> eat anything except Vivonex and/or TPN. Should he see one? He also reacts

> to basically everything on the face of the earth. Sometimes I wonder if he

> needs to be put in a bubble....

>

>

> Mum to Spencer 2 1/2 years old.

> [eosinophilic gastroenteritis] Re: EE/EG as allergic disorder

>

> From: SJHarlow@...

>

> I agree completely with Kenny. We eat nothing but elemental formula now

> and everyone is doing great. NO STEROIDS and interestingly for the

> first time in many many years, we don't need Prilosec either.

>

> (idiopathic eosinophilic esophagitis, GT, former TPN'r) and

> mom to five boys, all with EE, three with GTs and one on TPN (kody)

>

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[Guest guest]

In a message dated 4/27/99, 7:47:05 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<

>

We have not tried that yet. After we do the scope I am going to discuss that

with the doc. Until the scope is done I am pulling back on 's diet.

The doc also suggested going back on the steroids but we are going to wait

until after the scope.

Jen

( 11/7/95, EE, food allergies, asthma)

[Guest guest]

Jen,

Thanks for explaining that to me, and yes, your explanation made sense.

One of the other things Dr. Wood talked about at the FAN conference was the

increasing incidence of allergic disorders which are theorized to be due to

early immunization. He went on to explain that the body's immune system

usually focuses on disease fighting antibodies, but since we immunize early,

the body has less time to focus on fighting diseases and making antibody

fighting diseases, so it moves instead into fighting foods and making

antibodies which result in food allergy and other allergies.

I don't know about the rest of you but I got my son vaccinated right

according to schedule. I do think Matt's food allergies are mostly due to

his history of severe reflux and aspiration, but now that he is developing

tons of environmental allergies, I guess the jury is out one whether early

vaccination is something maybe that needs to be reconsidered and whether it

has contributed to his allergic problems.

I didn't even realize there was a controversy about vaccinating kids until

Matt had been fully vaccinated, and unfortunately, I won't be having any more

kids (infertility issues) but if I were, I guess I would have to be looking

hard at that aspect of how this all fits in with allergies developing. I

don't know if this fits in with EE/EG at all but I thought I would relay the

information to you since it was addressed at the FAN conference.

Lynda

[Guest guest]

-

I'm so sorry that Spencer is having so many troubles. Please remember

that eating food is not all it's cracked up to be. IF you can get him on

enteral feeds, he can live a full normal life WITHOUT food. I'm grateful

for the opportunity to not HAVE to eat anymore; it had become such a

struggle.

(idiopathic eosinophilic esophagitis, GT, former TPN'r) and

mom to five boys, all with EE, three with GTs and one on TPN (kody)

[Guest guest]

-

I'm so sorry that Spencer is having so many troubles. Please remember

that eating food is not all it's cracked up to be. IF you can get him on

enteral feeds, he can live a full normal life WITHOUT food. I'm grateful

for the opportunity to not HAVE to eat anymore; it had become such a

struggle.

(idiopathic eosinophilic esophagitis, GT, former TPN'r) and

mom to five boys, all with EE, three with GTs and one on TPN (kody)

[Guest guest]

--

another thought. THe discussion has come up many many times (when we

thought only prednisone would work for us too)... you may want to look

into some of the more experimental immunosuppresive drugs they are using

for Crohn's to replace the steroids.

(idiopathic eosinophilic esophagitis, GT, former TPN'r) and

mom to five boys, all with EE, three with GTs and one on TPN (kody)

[Guest guest]

In our case several of the kids were not immunized on time; (poor

Killian was almost a year behind)-- so at least here,that has nothing to

do with it.

(idiopathic eosinophilic esophagitis, GT, former TPN'r) and

mom to five boys, all with EE, three with GTs and one on TPN (kody)

[Guest guest]

In our case several of the kids were not immunized on time; (poor

Killian was almost a year behind)-- so at least here,that has nothing to

do with it.

(idiopathic eosinophilic esophagitis, GT, former TPN'r) and

mom to five boys, all with EE, three with GTs and one on TPN (kody)

[Guest guest]

In a message dated 4/27/99 10:25:37 AM Eastern Daylight Time,

K2KW@... writes:

<< for many people, the answer to living a

normal life with few EG problems is to get a handle on your food allergies.

Treat the food allergies, and you can possibly reduce/eliminate the EG. >>

I have to agree here - when we removed the allergens from Robin's diet, she

was a changed little girl.

Ed W.

[Guest guest]

In a message dated 4/27/99 10:25:37 AM Eastern Daylight Time,

K2KW@... writes:

<< for many people, the answer to living a

normal life with few EG problems is to get a handle on your food allergies.

Treat the food allergies, and you can possibly reduce/eliminate the EG. >>

I have to agree here - when we removed the allergens from Robin's diet, she

was a changed little girl.

Ed W.