Diet and PSC

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Greetings,=0A=0AI am fairly new to this group as my 5 year was just diagnos=

ed with PSC.=A0 When she was two years we introduced peanut butter and she =

started having blood in her stool.=A0 We went to the pediatrician several t=

imes and he told me that it was an intestinal infection and it would clear =

on it's own.=A0 =0A=0AAfter a couple of months and several calls we went ba=

ck to the pediatrician because she was still having blood in her stool.=A0 =

At that time he suggested that we do some blood work and her liver enzymes =

came back very elevated.=A0 I believe they were in the 700's, she also had =

an elevated eosinophil count which indicated that she had food allergies.=

=0A=0AWe were sent to Mass General hospital where they did a liver biopsy, =

colonoscopy and endoscopy.=A0 At the time the liver specialist assured me t=

hat these tests would give us all the answers we were looking for. When the=

results came back they showed that she had eosinophils in her colon, diges=

tive tract and liver.=A0 That told me that she was suffering from food alle=

rgies, I figured if we got rid of the eosinphils then we would get rid of t=

he problem all together.=0A=0AI took her in for allergy testing and learned=

that there are two kinds of allergies, IgE and IgG.=A0 The IgE allergies a=

re in and out of your system in 24 hours, the IgG alleriges are delayed ons=

et and could affect you up to 72 hours after exposure.=A0 The skin test is =

on for IgE allergies.=A0 It turned out that she had several food allergies =

and hers were all IgG.=A0 She was allergic to everything Soy, Wheat, Milk, =

Eggs, Gluten and more.=A0 We significantly modified her diet, calmed down t=

he allergic response (auto-immune response) and we were able to have normal=

liver function tests for over a year.=A0 Then we stopped testing her LFT's=

...=A0 After two years she had outgrown most of her food allergies so we star=

ted to reintroduce all the foods that had been eliminated.=A0 Such as pizza=

, and more high fat foods.=A0 Now we are back to square one again accept th=

is time when we completed all the tests including the ERCP we have a diagno=

sis.=A0 I am convinced that we

are where we are now because of her diet since all she was eating was pizz=

a, ribs, burgers, chips and cheese.=A0 =0A=0AI am new to all of this and do=

n't know much about liver disease.=A0 I have talked to someone who told me =

that she needed to avoid all the foods that she had been eating.=A0 Now I a=

m faced with what do I feed her?=A0 She has a gluten allergy so she is whea=

t free.=A0 She is 5 years old and isn't interested in trying very many new =

foods and if she does try them she doesn't like them.=A0 I think she would =

rather go hungry then eat something she doesn't like. She appears and acts =

to be perfectly normal but we know there is a serious problem that could ta=

ke her life.=A0 We are struggling as a family now coming to terms with the =

fact that she could be here today and gone tomorrow.=0A=0AI am interested i=

n finding out everything I can about this disease and I'm thankful for this=

support group.=A0 If anyone has information that you could share that you =

think would be helpful I would be very grateful.=A0 =0A=0A=0A

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Greetings,

I am fairly new to this group as my 5 year was just diagnosed with

PSC. When she was two years we introduced peanut butter and she started

having blood in her stool. We went to the pediatrician several times and

he told me that it was an intestinal infection and it would clear on it's

own.

After a couple of months and several calls we went back to the pediatrician

because she was still having blood in her stool. At that time he suggested

that we do some blood work and her liver enzymes came back very elevated.

I believe they were in the 700's, she also had an elevated eosinophil count

which indicated that she had food allergies.

We were sent to Mass General hospital where they did a liver biopsy,

colonoscopy and endoscopy. At the time the liver specialist assured me

that these tests would give us all the answers we were looking for. When the

results came back they showed that she had eosinophils in her colon, digestive

tract and liver. That told me that she was suffering from food allergies,

I figured if we got rid of the eosinphils then we would get rid of the problem

all together.

I took her in for allergy testing and learned that there are two kinds of

allergies, IgE and IgG. The IgE allergies are in and out of your system in

24 hours, the IgG alleriges are delayed onset and could affect you up to 72

hours after exposure. The skin test is on for IgE allergies. It

turned out that she had several food allergies and hers were all IgG. She

was allergic to everything Soy, Wheat, Milk, Eggs, Gluten and more. We

significantly modified her diet, calmed down the allergic response (auto-immune

response) and we were able to have normal liver function tests for over a

year. Then we stopped testing her LFT's. After two years she had

outgrown most of her food allergies so we started to reintroduce all the foods

that had been eliminated. Such as pizza, and more high fat foods.

Now we are back to square one again accept this time when we completed all the

tests including the ERCP we have

a diagnosis. I am convinced that we are where we are now because of her

diet since all she was eating was pizza, ribs, burgers, chips and cheese.

I am new to all of this and don't know much about liver disease. I

have talked to someone who told me that she needed to avoid all the foods that

she had been eating. Now I am faced with what do I feed her? She has

a gluten allergy so she is wheat free. She is 5 years old and isn't

interested in trying very many new foods and if she does try them she doesn't

like them. I think she would rather go hungry then eat something she

doesn't like. She appears and acts to be perfectly normal but we know there is a

serious problem that could take her life. We are struggling as a family

now coming to terms with the fact that she could be here today and gone

tomorrow.

I am interested in finding out everything I can about this disease and I'm

thankful for this support group. If anyone has information that you could

share that you think would be helpful I would be very grateful.

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