Re: Information request - eosinophil & Suzanne

[Guest guest]

llduq wrote:

>

> ..... But the

> biopsies once again are showing a large amount of eosinophil cells.

> Apparently more than they saw in the April scope. Over the summer we

> went through allergy tests that all came up negative ....

> .... I am not sure

> why or how should could have any of those food allergies and have them

> not show up on the allergy tests.

Allergy testing shows what substances trigger a release of histamine

(thus indicating a true allergic reaction). However, a person can be

hypersensitive to certain substances without having a true allergic

reaction.

When I underwent extensive allergy testing, I reacted to nothing at

all!! Only the slightest reaction to the histamine which is included as

a control to be sure you will react to the presence of histamine. So,

technically, I'm not allergic to ANYTHING (!!!), but in reality, I have

bad reactions to mold spores, cigarette smoke, and grass. (The first

two set my asthma off in high gear; the third causes a dreadful itchy rash.)

I don't know whether this is connected to the PSC at all, but nothing

would surprise me anymore!

You're in our prayers. Sending you a hug,

Carolyn B. in SC

[Guest guest]

llduq wrote:

>

> ..... But the

> biopsies once again are showing a large amount of eosinophil cells.

> Apparently more than they saw in the April scope. Over the summer we

> went through allergy tests that all came up negative ....

> .... I am not sure

> why or how should could have any of those food allergies and have them

> not show up on the allergy tests.

Allergy testing shows what substances trigger a release of histamine

(thus indicating a true allergic reaction). However, a person can be

hypersensitive to certain substances without having a true allergic

reaction.

When I underwent extensive allergy testing, I reacted to nothing at

all!! Only the slightest reaction to the histamine which is included as

a control to be sure you will react to the presence of histamine. So,

technically, I'm not allergic to ANYTHING (!!!), but in reality, I have

bad reactions to mold spores, cigarette smoke, and grass. (The first

two set my asthma off in high gear; the third causes a dreadful itchy rash.)

I don't know whether this is connected to the PSC at all, but nothing

would surprise me anymore!

You're in our prayers. Sending you a hug,

Carolyn B. in SC

[Guest guest]

llduq wrote:

>

> ..... But the

> biopsies once again are showing a large amount of eosinophil cells.

> Apparently more than they saw in the April scope. Over the summer we

> went through allergy tests that all came up negative ....

> .... I am not sure

> why or how should could have any of those food allergies and have them

> not show up on the allergy tests.

Allergy testing shows what substances trigger a release of histamine

(thus indicating a true allergic reaction). However, a person can be

hypersensitive to certain substances without having a true allergic

reaction.

When I underwent extensive allergy testing, I reacted to nothing at

all!! Only the slightest reaction to the histamine which is included as

a control to be sure you will react to the presence of histamine. So,

technically, I'm not allergic to ANYTHING (!!!), but in reality, I have

bad reactions to mold spores, cigarette smoke, and grass. (The first

two set my asthma off in high gear; the third causes a dreadful itchy rash.)

I don't know whether this is connected to the PSC at all, but nothing

would surprise me anymore!

You're in our prayers. Sending you a hug,

Carolyn B. in SC

[Guest guest]

Oh ,

My heart goes out to you mom to mom.

My best wishes for Suzanne to get better soon.

As far as food allergies go, Bill is allergic to raw fruits and

vegetables [ just great] and I suspect he has other food allergies as

well. He was tested for the fruits and veges but not for others. As a

baby he was allergic or couldn't tolerate milk and he drank soy milk

until he was over 3 years old.

I think part of the reason his colon got so bad is because in college

he was living on Kraft Mac and Cheese, milkshakes and ice cream.

Now he keeps the dairy down to a minimum. I still worry about it now

that he is living on his own because I know he loves milk products

and I am afraid he will over do them. He still has pouchitis and this

could be why.

I know that in Bill's case his allergies have had a lot to do with

his health problems. He is also allergic to tree pollens, dogs,

cats , mold and whatever else they tested him for. He tested positive

for everything but cockroaches and that was probably lack of exposure.

So, I think his colitis and maybe his PSC too are somehow tied into

his allergic history. But who knows since there are probably people

here without allergic histories. Is it all just different levels of

allergy? Some show it with just UC/PSC and others like Bill have

other allergy symptoms?

If allergies are irritants and cause inflammation and the colon and

liver get inflamed then this makes sense to me.

We also tried the elimination diets first thing. It didn't help

enough to notice and was too hard for him to stick with. He would

stay with it all day and then at night I would hear the car go out

and know that he was getting fast food. You have to be really

motivated to stick with the elimination diet. Whole Foods helped with

their gluten free products.

It was worth a shot though when we were in our anything to prevent a

colectomy stage.

I really , really hope it works for Suzanne.

Hang in there,

Lee

[Guest guest]

Oh ,

My heart goes out to you mom to mom.

My best wishes for Suzanne to get better soon.

As far as food allergies go, Bill is allergic to raw fruits and

vegetables [ just great] and I suspect he has other food allergies as

well. He was tested for the fruits and veges but not for others. As a

baby he was allergic or couldn't tolerate milk and he drank soy milk

until he was over 3 years old.

I think part of the reason his colon got so bad is because in college

he was living on Kraft Mac and Cheese, milkshakes and ice cream.

Now he keeps the dairy down to a minimum. I still worry about it now

that he is living on his own because I know he loves milk products

and I am afraid he will over do them. He still has pouchitis and this

could be why.

I know that in Bill's case his allergies have had a lot to do with

his health problems. He is also allergic to tree pollens, dogs,

cats , mold and whatever else they tested him for. He tested positive

for everything but cockroaches and that was probably lack of exposure.

So, I think his colitis and maybe his PSC too are somehow tied into

his allergic history. But who knows since there are probably people

here without allergic histories. Is it all just different levels of

allergy? Some show it with just UC/PSC and others like Bill have

other allergy symptoms?

If allergies are irritants and cause inflammation and the colon and

liver get inflamed then this makes sense to me.

We also tried the elimination diets first thing. It didn't help

enough to notice and was too hard for him to stick with. He would

stay with it all day and then at night I would hear the car go out

and know that he was getting fast food. You have to be really

motivated to stick with the elimination diet. Whole Foods helped with

their gluten free products.

It was worth a shot though when we were in our anything to prevent a

colectomy stage.

I really , really hope it works for Suzanne.

Hang in there,

Lee

[Guest guest]

Oh ,

My heart goes out to you mom to mom.

My best wishes for Suzanne to get better soon.

As far as food allergies go, Bill is allergic to raw fruits and

vegetables [ just great] and I suspect he has other food allergies as

well. He was tested for the fruits and veges but not for others. As a

baby he was allergic or couldn't tolerate milk and he drank soy milk

until he was over 3 years old.

I think part of the reason his colon got so bad is because in college

he was living on Kraft Mac and Cheese, milkshakes and ice cream.

Now he keeps the dairy down to a minimum. I still worry about it now

that he is living on his own because I know he loves milk products

and I am afraid he will over do them. He still has pouchitis and this

could be why.

I know that in Bill's case his allergies have had a lot to do with

his health problems. He is also allergic to tree pollens, dogs,

cats , mold and whatever else they tested him for. He tested positive

for everything but cockroaches and that was probably lack of exposure.

So, I think his colitis and maybe his PSC too are somehow tied into

his allergic history. But who knows since there are probably people

here without allergic histories. Is it all just different levels of

allergy? Some show it with just UC/PSC and others like Bill have

other allergy symptoms?

If allergies are irritants and cause inflammation and the colon and

liver get inflamed then this makes sense to me.

We also tried the elimination diets first thing. It didn't help

enough to notice and was too hard for him to stick with. He would

stay with it all day and then at night I would hear the car go out

and know that he was getting fast food. You have to be really

motivated to stick with the elimination diet. Whole Foods helped with

their gluten free products.

It was worth a shot though when we were in our anything to prevent a

colectomy stage.

I really , really hope it works for Suzanne.

Hang in there,

Lee

[Guest guest]

,

I have no info. for you, but I'm sorry that Suzanne is so ill. I'll

say a prayer for her and for your whole family.

Take care,

Deb in VA

[Guest guest]

,

Oh my…what next? I know you

were preparing yourself for the surgery and now with that on hold it must all

be so difficult…the emotional rollercoaster. Unfortunately, I don’t

have any answers to your questions. Please know that I am thinking and

praying for you, Suzanne and the rest of your family. If Suzanne

doesn’t get discharged tomorrow, please let me know. I will be in Oakland tomorrow and will come by and have a cup of coffee with you

in the cafeteria.

Hugs,

Joanne (mom of Todd, 20, psc 01, crohns 02,

tx twice 03, recurrent psc 05, type 1 diabetes 06, living life to the fullest

07)

Information

request - eosinophil & Suzanne

Hello all and welcome to my

merry-go-round.

I feel like we just keep going

around and around about the same things with Suzanne remaining ill. The story

(recent) – her GI wanted to scope her before scheduling the colectmy; a

reasonable request. The surgeon was gung ho ready to move so we scheduled the

surgery before all of the biopsies were in. Her colon is a mess, no surprise

there. But the biopsies once again are showing a large amount of eosinophil

cells. Apparently more than they saw in the April scope. Over the summer we

went through allergy tests that all came up negative and they put her on gastrocrom

which had no effect on her symptoms. The GI and pathologist both said they have

never seen this amount of eosinophil present before (in both her esophagus and

colon). So, they now want to put her on an elimination diet (wheat, eggs, milk,

nuts, fish & soy) to see if it changes her symptoms. I am certainly okay

with that (sort of), but what I am really concerned about is what this all

could mean. I am not sure why or how should could have any of those food

allergies and have them not show up on the allergy tests. Is this one of those

odd situations that seems to occur more frequently with PSC/IBD people? So, we

canceled the surgery and are trying this for awhile. My other concern is

timing, because I really want her to begin college in the fall and put all of

this high school nightmare behind her – a new beginning

In the meantime she got strep throat

the day after the scope (coincidence?), but we didn’t recognize it

at first because we thought her throat was sore because of the procedure. She

was put on an antibiotic, but that night (last night) she threw up for hours.

They sent us to the ER and she is now hospitalized at Children’s. She was

extremely dehydrated and has a whopper of an infection. They are not sure if

there are any other infections (based on the increased white cells), so the

plan is lots of IV fluid, and IV antibiotics for the strep, with anti-nausea

medication as needed. She finally (in the early evening) ate something that stayed

down. Of course her colitis symptoms are increasing because of all of this.

Poor kid. Once we kick the strep infection, if no other infections show up (and

she stops vomiting) they will release her on oral antibodies. Hopefully

tomorrow.

If anyone has any information or

insight on what we are going through please share it. I am lost and the doctors

are also challenged by this situation.

Thank you once again wonderful group.

LINDA

(Mom of

Suzanne, 17; IBD 1/04; PSC 3/04)

[Guest guest]

,

Oh my…what next? I know you

were preparing yourself for the surgery and now with that on hold it must all

be so difficult…the emotional rollercoaster. Unfortunately, I don’t

have any answers to your questions. Please know that I am thinking and

praying for you, Suzanne and the rest of your family. If Suzanne

doesn’t get discharged tomorrow, please let me know. I will be in Oakland tomorrow and will come by and have a cup of coffee with you

in the cafeteria.

Hugs,

Joanne (mom of Todd, 20, psc 01, crohns 02,

tx twice 03, recurrent psc 05, type 1 diabetes 06, living life to the fullest

07)

Information

request - eosinophil & Suzanne

Hello all and welcome to my

merry-go-round.

I feel like we just keep going

around and around about the same things with Suzanne remaining ill. The story

(recent) – her GI wanted to scope her before scheduling the colectmy; a

reasonable request. The surgeon was gung ho ready to move so we scheduled the

surgery before all of the biopsies were in. Her colon is a mess, no surprise

there. But the biopsies once again are showing a large amount of eosinophil

cells. Apparently more than they saw in the April scope. Over the summer we

went through allergy tests that all came up negative and they put her on gastrocrom

which had no effect on her symptoms. The GI and pathologist both said they have

never seen this amount of eosinophil present before (in both her esophagus and

colon). So, they now want to put her on an elimination diet (wheat, eggs, milk,

nuts, fish & soy) to see if it changes her symptoms. I am certainly okay

with that (sort of), but what I am really concerned about is what this all

could mean. I am not sure why or how should could have any of those food

allergies and have them not show up on the allergy tests. Is this one of those

odd situations that seems to occur more frequently with PSC/IBD people? So, we

canceled the surgery and are trying this for awhile. My other concern is

timing, because I really want her to begin college in the fall and put all of

this high school nightmare behind her – a new beginning

In the meantime she got strep throat

the day after the scope (coincidence?), but we didn’t recognize it

at first because we thought her throat was sore because of the procedure. She

was put on an antibiotic, but that night (last night) she threw up for hours.

They sent us to the ER and she is now hospitalized at Children’s. She was

extremely dehydrated and has a whopper of an infection. They are not sure if

there are any other infections (based on the increased white cells), so the

plan is lots of IV fluid, and IV antibiotics for the strep, with anti-nausea

medication as needed. She finally (in the early evening) ate something that stayed

down. Of course her colitis symptoms are increasing because of all of this.

Poor kid. Once we kick the strep infection, if no other infections show up (and

she stops vomiting) they will release her on oral antibodies. Hopefully

tomorrow.

If anyone has any information or

insight on what we are going through please share it. I am lost and the doctors

are also challenged by this situation.

Thank you once again wonderful group.

LINDA

(Mom of

Suzanne, 17; IBD 1/04; PSC 3/04)

[Guest guest]

,

Oh my…what next? I know you

were preparing yourself for the surgery and now with that on hold it must all

be so difficult…the emotional rollercoaster. Unfortunately, I don’t

have any answers to your questions. Please know that I am thinking and

praying for you, Suzanne and the rest of your family. If Suzanne

doesn’t get discharged tomorrow, please let me know. I will be in Oakland tomorrow and will come by and have a cup of coffee with you

in the cafeteria.

Hugs,

Joanne (mom of Todd, 20, psc 01, crohns 02,

tx twice 03, recurrent psc 05, type 1 diabetes 06, living life to the fullest

07)

Information

request - eosinophil & Suzanne

Hello all and welcome to my

merry-go-round.

I feel like we just keep going

around and around about the same things with Suzanne remaining ill. The story

(recent) – her GI wanted to scope her before scheduling the colectmy; a

reasonable request. The surgeon was gung ho ready to move so we scheduled the

surgery before all of the biopsies were in. Her colon is a mess, no surprise

there. But the biopsies once again are showing a large amount of eosinophil

cells. Apparently more than they saw in the April scope. Over the summer we

went through allergy tests that all came up negative and they put her on gastrocrom

which had no effect on her symptoms. The GI and pathologist both said they have

never seen this amount of eosinophil present before (in both her esophagus and

colon). So, they now want to put her on an elimination diet (wheat, eggs, milk,

nuts, fish & soy) to see if it changes her symptoms. I am certainly okay

with that (sort of), but what I am really concerned about is what this all

could mean. I am not sure why or how should could have any of those food

allergies and have them not show up on the allergy tests. Is this one of those

odd situations that seems to occur more frequently with PSC/IBD people? So, we

canceled the surgery and are trying this for awhile. My other concern is

timing, because I really want her to begin college in the fall and put all of

this high school nightmare behind her – a new beginning

In the meantime she got strep throat

the day after the scope (coincidence?), but we didn’t recognize it

at first because we thought her throat was sore because of the procedure. She

was put on an antibiotic, but that night (last night) she threw up for hours.

They sent us to the ER and she is now hospitalized at Children’s. She was

extremely dehydrated and has a whopper of an infection. They are not sure if

there are any other infections (based on the increased white cells), so the

plan is lots of IV fluid, and IV antibiotics for the strep, with anti-nausea

medication as needed. She finally (in the early evening) ate something that stayed

down. Of course her colitis symptoms are increasing because of all of this.

Poor kid. Once we kick the strep infection, if no other infections show up (and

she stops vomiting) they will release her on oral antibodies. Hopefully

tomorrow.

If anyone has any information or

insight on what we are going through please share it. I am lost and the doctors

are also challenged by this situation.

Thank you once again wonderful group.

LINDA

(Mom of

Suzanne, 17; IBD 1/04; PSC 3/04)

[Guest guest]

Hi ;

I'm so sorry to hear about Suzanne's continuing health problems. Have

the doctors ruled out " eosinophilic gastoenteritis " or related

eosinophilic disorders?

http://www.apfed.org/downloads/What_are_Eosinophilic_Disorders.pdf

I've read that a new therapy has been tried with eosinophilic

gastroenteritis, employing a leukotriene D4 receptor antagonist:

Eosinophilic gastroenteritis in a young girl – long term remission

under Montelukast.

Ivo Quack, Lorenz Sellin, Nikolaus J Buchner, Dirk Theegarten,

Lars C Rump and Bernhard F Henning

BMC Gastroenterology 2005, 5:24

http://www.biomedcentral.com/content/pdf/1471-230X-5-24.pdf

I hope that this information might provide a useful lead if Suzanne's

doctors have not already explored this?

I wish Suzanne a speedy recovery from her Strep throat infection.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Hi ;

I'm so sorry to hear about Suzanne's continuing health problems. Have

the doctors ruled out " eosinophilic gastoenteritis " or related

eosinophilic disorders?

http://www.apfed.org/downloads/What_are_Eosinophilic_Disorders.pdf

I've read that a new therapy has been tried with eosinophilic

gastroenteritis, employing a leukotriene D4 receptor antagonist:

Eosinophilic gastroenteritis in a young girl – long term remission

under Montelukast.

Ivo Quack, Lorenz Sellin, Nikolaus J Buchner, Dirk Theegarten,

Lars C Rump and Bernhard F Henning

BMC Gastroenterology 2005, 5:24

http://www.biomedcentral.com/content/pdf/1471-230X-5-24.pdf

I hope that this information might provide a useful lead if Suzanne's

doctors have not already explored this?

I wish Suzanne a speedy recovery from her Strep throat infection.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Hi ;

I'm so sorry to hear about Suzanne's continuing health problems. Have

the doctors ruled out " eosinophilic gastoenteritis " or related

eosinophilic disorders?

http://www.apfed.org/downloads/What_are_Eosinophilic_Disorders.pdf

I've read that a new therapy has been tried with eosinophilic

gastroenteritis, employing a leukotriene D4 receptor antagonist:

Eosinophilic gastroenteritis in a young girl – long term remission

under Montelukast.

Ivo Quack, Lorenz Sellin, Nikolaus J Buchner, Dirk Theegarten,

Lars C Rump and Bernhard F Henning

BMC Gastroenterology 2005, 5:24

http://www.biomedcentral.com/content/pdf/1471-230X-5-24.pdf

I hope that this information might provide a useful lead if Suzanne's

doctors have not already explored this?

I wish Suzanne a speedy recovery from her Strep throat infection.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)