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Hi, I found this at the Thoughtful House Centre for Children

discussion group and thought it would be of interest to you all.

Regards Glynis mam to Jasmine 7 yrs

Diagnosed with Kabuki Syndrome

and NG tube fed

Re: IBD and allergy

>Dear people on the forum (especially mothers who struggle beetwen

diet and

gastroenterologists for their chindren)

I would like to tell you a story. Excuse me if it is too long and my

English is

not excellent.

I am an italian MD, specialized in pathology and immunology. I work

mostly in a

research

laboratory and I have a daughter of 16 with UC. She was diagnosed

when she was 9

and

has been treated with asacol, steroids and azathioprin (an immune-

suppressant).

Her

disease has always been more or less active. This year she has been

unwell (with

cramps,

diarhea with blood and mucus) so. after a colonoscopy that evidenced

a worsening

of

macroscopic lesions in her descendent and part of the transverse

colon, we went

to see a

couple of specialists who agreed that her disease was now resistant

or dependent

to

steroids and that she had to have infliximab infusions starting in

May, after a

school trip. If

infliximab did not work we had to discuss surgery. Infliximab is a

relatively

new drug that

goes against one of the molecules that cause inflammation, the short

and -more

worrying-long side effects are not known. At the end of her school

trip we went

to England

to see some relatives and she had a terrible gastroenteritis, (had a

beer and

some fish and

chips).The violence of her symptoms scared everyone, we were taking

her to an

emergency

hospital, but then fortunately after a night and a day of vomiting,

fever and

severe

diarhrrea (yellow water) she got better and I started the

introductory diet (I

had the BTVC

book with me, in the hope that I could convince her to read and

discuss it with

me, so that

she would not feel forced into it). After 4 days on the diet the D

and cramps

disappeared.

She is now accepting the diet (slowly), feels a bit weak for the lack

of sugars

(would not eat

the new type of bread or all the allowed fruit and vegetables and is

often in a

bad mood

because she feels different from her friends because she cannot have

pizza, ice

cream and

pasta-it seems to me that all teen agers do is eating). We slowly

reduced the

steroids and

she is getting a lot more sleep (she has always been a very light

sleeper), her

stools are

normal, she goes without urgency 2 or 3 times a day, she only has

some bloating

in the

evenings, no pain…..

I do not have any support from other italian SCDers, and I would like

to help

other IBD

sufferers as much as Elaine's book is helping me and my daughter.

My daughter had a story of food intollerances, eczema,

hypersensitivity and

diahrrea since

she was a baby, but any gastroenterologists (both in Italy or in

England) or

pediatricians

ever wanted to know. Once she had tests for food allergies and was

negative and

a

pediatrician looked at me as if I was a very ignorant martian when I

said that

it seemed

that milk or other foods affected her in a quantitative way, because

it was

against the

immunology dogmas (protein-antigen=allergic reaction). I do believe

that every

patient is

different and that scientific dogmas have damaged many people so far.

They

infact narrow

minds and close doctors eyes.

As an immunologist I have been studying IBD and I am going to

correlate my

daughter's

tests with other patients' tests, as I am convinced that the diet

helps to

change the

cytokine asset and improves the immune system as well as healing the

mucosa.

Regarding asthma and CD I cannot say if there is a connection but I

am sure

there is a

connection beetwen UC and allergies. In a chronic inflammation such

as asthma

(in the

lungs) and colitis (in the colon) the cellular infiltrates are

similar:

monocytes, Th2

lymphocytes and during acute phases neutrophils that damage furtherly

the

substrates

(mucosa or lungs) were they are. In Chron disease (at least in the

reported

cases) there is a

predominance of Th1 instead of Th2 lymphocytes, but the initial cells

(monocytes) are the

same. The monocytes, present in all tissues and especially in mucosas

that

interact with

external antigens (such as foods, bacteria, inhaling substances) get

active and

start

secreting IL23. This is a mediator that starts selecting " aggressive "

lymphocytes called

Th17. In " normal " conditions the monocytes secrete IL12 instead of

IL23 that

selects

regulatory T cells that trigger tollerance to food or bacterial

antigens.

I know of many cases of Chron disease in young people that are

misdiagnosed

because

some UCs happen in patches and cause reactive terminal ileites (these

signs

address the

diagnosis to Chron's, but they clinically behave like ulcerative

rectum

colitis). I am sure

that both Chron and UC benefit enourmously by SCD. I hope this story

will help

and

convince you all to follow the diet.

With many thanks for your attention

Stefania

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Guest guest

---

Oops, so sorry. This was from the SCDUK discussion group.

In pecanbread , " Glynis Steele " wrote:

>

> Hi, I found this at the Thoughtful House Centre for Children

> discussion group and thought it would be of interest to you all.

>

> Regards Glynis mam to Jasmine 7 yrs

> Diagnosed with Kabuki Syndrome

> and NG tube fed

>

> Re: IBD and allergy

>

> >Dear people on the forum (especially mothers who struggle beetwen

> diet and

> gastroenterologists for their chindren)

> I would like to tell you a story. Excuse me if it is too long and

my

> English is

> not excellent.

> I am an italian MD, specialized in pathology and immunology. I work

> mostly in a

> research

> laboratory and I have a daughter of 16 with UC. She was diagnosed

> when she was 9

> and

> has been treated with asacol, steroids and azathioprin (an immune-

> suppressant).

> Her

> disease has always been more or less active. This year she has been

> unwell (with

> cramps,

> diarhea with blood and mucus) so. after a colonoscopy that

evidenced

> a worsening

> of

> macroscopic lesions in her descendent and part of the transverse

> colon, we went

> to see a

> couple of specialists who agreed that her disease was now resistant

> or dependent

> to

> steroids and that she had to have infliximab infusions starting in

> May, after a

> school trip. If

> infliximab did not work we had to discuss surgery. Infliximab is a

> relatively

> new drug that

> goes against one of the molecules that cause inflammation, the

short

> and -more

> worrying-long side effects are not known. At the end of her school

> trip we went

> to England

> to see some relatives and she had a terrible gastroenteritis, (had

a

> beer and

> some fish and

> chips).The violence of her symptoms scared everyone, we were taking

> her to an

> emergency

> hospital, but then fortunately after a night and a day of vomiting,

> fever and

> severe

> diarhrrea (yellow water) she got better and I started the

> introductory diet (I

> had the BTVC

> book with me, in the hope that I could convince her to read and

> discuss it with

> me, so that

> she would not feel forced into it). After 4 days on the diet the D

> and cramps

> disappeared.

> She is now accepting the diet (slowly), feels a bit weak for the

lack

> of sugars

> (would not eat

> the new type of bread or all the allowed fruit and vegetables and

is

> often in a

> bad mood

> because she feels different from her friends because she cannot

have

> pizza, ice

> cream and

> pasta-it seems to me that all teen agers do is eating). We slowly

> reduced the

> steroids and

> she is getting a lot more sleep (she has always been a very light

> sleeper), her

> stools are

> normal, she goes without urgency 2 or 3 times a day, she only has

> some bloating

> in the

> evenings, no pain…..

> I do not have any support from other italian SCDers, and I would

like

> to help

> other IBD

> sufferers as much as Elaine's book is helping me and my daughter.

> My daughter had a story of food intollerances, eczema,

> hypersensitivity and

> diahrrea since

> she was a baby, but any gastroenterologists (both in Italy or in

> England) or

> pediatricians

> ever wanted to know. Once she had tests for food allergies and was

> negative and

> a

> pediatrician looked at me as if I was a very ignorant martian when

I

> said that

> it seemed

> that milk or other foods affected her in a quantitative way,

because

> it was

> against the

> immunology dogmas (protein-antigen=allergic reaction). I do believe

> that every

> patient is

> different and that scientific dogmas have damaged many people so

far.

> They

> infact narrow

> minds and close doctors eyes.

> As an immunologist I have been studying IBD and I am going to

> correlate my

> daughter's

> tests with other patients' tests, as I am convinced that the diet

> helps to

> change the

> cytokine asset and improves the immune system as well as healing

the

> mucosa.

> Regarding asthma and CD I cannot say if there is a connection but I

> am sure

> there is a

> connection beetwen UC and allergies. In a chronic inflammation such

> as asthma

> (in the

> lungs) and colitis (in the colon) the cellular infiltrates are

> similar:

> monocytes, Th2

> lymphocytes and during acute phases neutrophils that damage

furtherly

> the

> substrates

> (mucosa or lungs) were they are. In Chron disease (at least in the

> reported

> cases) there is a

> predominance of Th1 instead of Th2 lymphocytes, but the initial

cells

> (monocytes) are the

> same. The monocytes, present in all tissues and especially in

mucosas

> that

> interact with

> external antigens (such as foods, bacteria, inhaling substances)

get

> active and

> start

> secreting IL23. This is a mediator that starts

selecting " aggressive "

> lymphocytes called

> Th17. In " normal " conditions the monocytes secrete IL12 instead of

> IL23 that

> selects

> regulatory T cells that trigger tollerance to food or bacterial

> antigens.

> I know of many cases of Chron disease in young people that are

> misdiagnosed

> because

> some UCs happen in patches and cause reactive terminal ileites

(these

> signs

> address the

> diagnosis to Chron's, but they clinically behave like ulcerative

> rectum

> colitis). I am sure

> that both Chron and UC benefit enourmously by SCD. I hope this

story

> will help

> and

> convince you all to follow the diet.

> With many thanks for your attention

> Stefania

>

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Guest guest

Glynis,

Thank you for sending this! You may invite her to join our list or the

other SCD lists that appear on the official SCD websites. Ask her to

write to Grammy Bauer to find SCD friendsin Italy:

grammy_bauer@...

Mimi

> Hi, I found this at the Thoughtful House Centre for Children

> discussion group and thought it would be of interest to you all.

>

> Regards Glynis mam to Jasmine 7 yrs

> Diagnosed with Kabuki Syndrome

> and NG tube fed

>

> Re: IBD and allergy

>

> >Dear people on the forum (especially mothers who struggle beetwen

> diet and

> gastroenterologists for their chindren)

> I would like to tell you a story. Excuse me if it is too long and my

> English is

> not excellent.

> I am an italian MD, specialized in pathology and immunology. I work

> mostly in a

> research

> laboratory and I have a daughter of 16 with UC. She was diagnosed

> when she was 9

> and

> has been treated with asacol, steroids and azathioprin (an immune-

> suppressant).

> Her

> disease has always been more or less active. This year she has been

> unwell (with

> cramps,

> diarhea with blood and mucus) so. after a colonoscopy that evidenced

> a worsening

> of

> macroscopic lesions in her descendent and part of the transverse

> colon, we went

> to see a

> couple of specialists who agreed that her disease was now resistant

> or dependent

> to

> steroids and that she had to have infliximab infusions starting in

> May, after a

> school trip. If

> infliximab did not work we had to discuss surgery. Infliximab is a

> relatively

> new drug that

> goes against one of the molecules that cause inflammation, the short

> and -more

> worrying-long side effects are not known. At the end of her school

> trip we went

> to England

> to see some relatives and she had a terrible gastroenteritis, (had a

> beer and

> some fish and

> chips).The violence of her symptoms scared everyone, we were taking

> her to an

> emergency

> hospital, but then fortunately after a night and a day of vomiting,

> fever and

> severe

> diarhrrea (yellow water) she got better and I started the

> introductory diet (I

> had the BTVC

> book with me, in the hope that I could convince her to read and

> discuss it with

> me, so that

> she would not feel forced into it). After 4 days on the diet the D

> and cramps

> disappeared.

> She is now accepting the diet (slowly), feels a bit weak for the lack

> of sugars

> (would not eat

> the new type of bread or all the allowed fruit and vegetables and is

> often in a

> bad mood

> because she feels different from her friends because she cannot have

> pizza, ice

> cream and

> pasta-it seems to me that all teen agers do is eating). We slowly

> reduced the

> steroids and

> she is getting a lot more sleep (she has always been a very light

> sleeper), her

> stools are

> normal, she goes without urgency 2 or 3 times a day, she only has

> some bloating

> in the

> evenings, no pain…..

> I do not have any support from other italian SCDers, and I would like

> to help

> other IBD

> sufferers as much as Elaine's book is helping me and my daughter.

> My daughter had a story of food intollerances, eczema,

> hypersensitivity and

> diahrrea since

> she was a baby, but any gastroenterologists (both in Italy or in

> England) or

> pediatricians

> ever wanted to know. Once she had tests for food allergies and was

> negative and

> a

> pediatrician looked at me as if I was a very ignorant martian when I

> said that

> it seemed

> that milk or other foods affected her in a quantitative way, because

> it was

> against the

> immunology dogmas (protein-antigen=allergic reaction). I do believe

> that every

> patient is

> different and that scientific dogmas have damaged many people so far.

> They

> infact narrow

> minds and close doctors eyes.

> As an immunologist I have been studying IBD and I am going to

> correlate my

> daughter's

> tests with other patients' tests, as I am convinced that the diet

> helps to

> change the

> cytokine asset and improves the immune system as well as healing the

> mucosa.

> Regarding asthma and CD I cannot say if there is a connection but I

> am sure

> there is a

> connection beetwen UC and allergies. In a chronic inflammation such

> as asthma

> (in the

> lungs) and colitis (in the colon) the cellular infiltrates are

> similar:

> monocytes, Th2

> lymphocytes and during acute phases neutrophils that damage furtherly

> the

> substrates

> (mucosa or lungs) were they are. In Chron disease (at least in the

> reported

> cases) there is a

> predominance of Th1 instead of Th2 lymphocytes, but the initial cells

> (monocytes) are the

> same. The monocytes, present in all tissues and especially in mucosas

> that

> interact with

> external antigens (such as foods, bacteria, inhaling substances) get

> active and

> start

> secreting IL23. This is a mediator that starts selecting " aggressive "

> lymphocytes called

> Th17. In " normal " conditions the monocytes secrete IL12 instead of

> IL23 that

> selects

> regulatory T cells that trigger tollerance to food or bacterial

> antigens.

> I know of many cases of Chron disease in young people that are

> misdiagnosed

> because

> some UCs happen in patches and cause reactive terminal ileites (these

> signs

> address the

> diagnosis to Chron's, but they clinically behave like ulcerative

> rectum

> colitis). I am sure

> that both Chron and UC benefit enourmously by SCD. I hope this story

> will help

> and

> convince you all to follow the diet.

> With many thanks for your attention

> Stefania

>

>

>

>

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