Help Educate Congress About Celiac Disease

[Guest guest]

I think the shortened letter is good but maybe another version of the original one would be a little better in describing celiac. We all know what it means but others don't.Here is the original letter: The parts in blue are what I think should be included.I am writing today to urge you to cosponsor H.Con.Res. 70 to raise awareness about the world’s most common genetic disorder, Celiac Disease. The number of people living with celiac disease in the United States is estimated at 2.2 million, yet only about

90,000 have been accurately diagnosed. Symptoms of celiac disease include: anemia, osteoporosis, arthritis, diarrhea or constipation, and infertility. About 10% percent of Type 1 diabetics have CD, as do 12% of those with Down Syndrome. Without treatment, the condition can be life threatening and has been linked to an increased risk of certain types of cancer, especially intestinal lymphoma. Individuals with celiac disease are unable to eat foods containing gluten, a protein found in wheat, rye, and barley. For them, gluten sets off a reaction which causes damage to the small intestine, impeding the body’s ability to absorb vital nutrients. The only course of treatment for CD is strict adherence to a gluten-free diet – no prescription drugs, injections, or invasive medical procedures. The GF diet is the lifeline for those with CD and recommendations of the NIH Consensus Panel on Celiac Disease note the need for patients to see a skilled dietitian to help identify and treat nutritional deficiencies caused by the disease. Then the other letter should go here.

Dear (rep name),

I am writing to ask you to cosponsor HConRes 70, and to push for a floor vote as soon as possible.

This bill is very important to those who suffer from celiac disease, which is a disease which affects approximately 1 in 100 Americans. This common disease is currently under-diagnosed, and much greater awareness is necessary. The effects of even a crumb of gluten upon those with celiac are severe, causing an immune response that destroys the intestines, leading to severe malnutrition, growth retardation, and even cancer. Yet many people, even many doctors, are currently not aware of the meaning of either gluten or celiac. This must change.

Please help to pass this legislation as soon as possible.

Thank you.

What do you think?Melita************ **

[Guest guest]

There is also a pre-written letter already available if you click on the first link (just above the link to finding your supervisor by area code). Melita R <leftcoastmelita@...> wrote: I think the shortened letter is good but maybe another version of the original one would be a little better in describing celiac. We all know what it means but others don't.Here is the original

letter: The parts in blue are what I think should be included.I am writing today to urge you to cosponsor H.Con.Res. 70 to raise awareness about the world’s most common genetic disorder, Celiac Disease. The number of people living with celiac disease in the United States is estimated at 2.2 million, yet only about 90,000 have been accurately diagnosed. Symptoms of celiac disease include: anemia, osteoporosis, arthritis, diarrhea or constipation, and infertility. About 10% percent of Type 1 diabetics have CD, as do 12% of those with Down Syndrome. Without treatment, the condition can be life threatening

and has been linked to an increased risk of certain types of cancer, especially intestinal lymphoma. Individuals with celiac disease are unable to eat foods containing gluten, a protein found in wheat, rye, and barley. For them, gluten sets off a reaction which causes damage to the small intestine, impeding the body’s ability to absorb vital nutrients. The only course of treatment for CD is strict adherence to a gluten-free diet – no prescription drugs, injections, or invasive medical procedures. The GF diet is the lifeline for those with CD and recommendations of the NIH Consensus Panel on Celiac Disease note the need for patients to see a skilled dietitian to help identify and treat nutritional deficiencies caused by

the disease. Then the other letter should go here. Dear (rep name), I am writing to ask you to cosponsor HConRes 70, and to push for a floor vote as soon as possible. This bill is very important to those who suffer from celiac disease, which is a disease which affects approximately 1 in 100 Americans. This common disease is currently under-diagnosed, and much greater awareness is necessary. The effects of even a crumb of gluten upon those with

celiac are severe, causing an immune response that destroys the intestines, leading to severe malnutrition, growth retardation, and even cancer. Yet many people, even many doctors, are currently not aware of the meaning of either gluten or celiac. This must change. Please help to pass this legislation as soon as possible. Thank you. What do you think?Melita************ ** ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Viviana Acevedo-BoltonStanford UniversityCivil and Environmental Engineeringvivianaa@...~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~"los hermanos sean unidos, esa es la ley

primera, que sino los devoran los de afuera..."~ Fierro

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[Guest guest]

I am new to the group. Thank you for the letter. Under the symptoms section, maybe also add the Dermatitis Herpetiformis (DH) aspect of Celiac (i.e.: skin rashes). Some Celiac sufferers only react via skin rashes (such as myself).

Thanks!

Deidra Czech

Full Time Licensed Realtor

Coldwell Banker - Santa Cruz

(831) 428-1586 - mobile

-----Original Message-----

From: Viviana Acevedo-Bolton <vacevedobolton@...>

Sent: Thu, 3 Apr 2008 10:51 am

Subject: Re: [ ] Help Educate Congress About Celiac Disease

There is also a pre-written letter already available if you click on the first link (just above the link to finding your supervisor by area code).

Melita R <leftcoastmelitasbcglobal (DOT) net> wrote:

I think the shortened letter is good but maybe another version of the original one would be a little better in describing celiac. We all know what it means but others don't.

Here is the original letter: The parts in blue are what I think should be included.

I am writing today to urge you to cosponsor H.Con.Res. 70 to raise awareness about the world’s most common genetic disorder, Celiac Disease. The number of people living with celiac disease in the United States is estimated at 2.2 million, yet only about 90,000 have been accurately diagnosed. Symptoms of celiac disease include: anemia, osteoporosis, arthritis, diarrhea or constipation, and infertility. About 10% percent of Type 1 diabetics have CD, as do 12% of those with Down Syndrome. Without treatment, the condition can be life threatening and has been linked to an increased risk of certain types of cancer, especially intestinal lymphoma. Individuals with celiac disease are unable to eat foods containing gluten, a protein found in wheat, rye, and barley. For them, gluten sets off a reaction which causes damage to the small intestine, impeding the body’s ability to absorb vital nutrients. The only course of treatment for CD is strict adherence to a gluten-free diet – no prescription drugs, injections, or invasive medical procedures. The GF diet is the lifeline for those with CD and recommendations of the NIH Consensus Panel on Celiac Disease note the need for patients to see a skilled dietitian to help identify and treat nutritional deficiencies caused by the disease. Then the other letter should go here.

Dear (rep name),

I am writing to ask you to cosponsor HConRes 70, and to push for a floor vote as soon as possible.

This bill is very important to those who suffer from celiac disease, which is a disease which affects approximately 1 in 100 Americans. This common disease is currently under-diagnosed, and much greater awareness is necessary. The effects of even a crumb of gluten upon those with celiac are severe, causing an immune response that destroys the intestines, leading to severe malnutrition, growth retardation, and even cancer. Yet many people, even many doctors, are currently not aware of the meaning of either gluten or celiac. This must change.

Please help to pass this legislation as soon as possible.

Thank you.

What do you think?

Melita

************ **

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Viviana Acevedo-Bolton

Stanford University

Civil and Environmental Engineering

vivianaastanford (DOT) edu

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"los hermanos sean unidos, esa es la ley primera, que sino los devoran los de afuera..."

~ Fierro

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

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[Guest guest]

Looks good to me!BeaMelita R <leftcoastmelita@...> wrote: I think the shortened letter is good but maybe another version of the original one would be a little better in describing celiac. We all know what it means but others don't.Here is the original letter: The parts in blue are what I think should be included.I am writing today to urge you to cosponsor H.Con.Res. 70 to raise awareness about the world’s most common genetic disorder, Celiac Disease. The number of people living with celiac disease in the United States is estimated at 2.2 million, yet only about 90,000 have been accurately diagnosed. Symptoms of celiac disease include: anemia, osteoporosis, arthritis, diarrhea or constipation, and infertility. About 10% percent of Type 1 diabetics have CD, as do 12% of those with Down Syndrome. Without treatment, the condition can be life threatening and has been linked to an increased risk of certain types of cancer, especially intestinal lymphoma. Individuals with celiac disease are unable to eat foods containing gluten, a protein found in wheat, rye, and barley. For them, gluten sets off a reaction which causes damage to the small intestine, impeding the body’s ability to absorb vital nutrients. The only course of treatment for CD is strict adherence to a gluten-free diet – no prescription drugs, injections, or invasive medical procedures. The GF diet is the lifeline for those with CD and recommendations of the NIH Consensus Panel on Celiac Disease note the need for patients to see a skilled dietitian to help identify and treat nutritional deficiencies caused by the disease. Then the other letter should go here. Dear (rep name), I am writing to ask you to cosponsor HConRes 70, and to push for a floor vote as soon as possible. This bill is very important to those who suffer from celiac disease, which is a disease which affects approximately 1 in 100 Americans. This common disease is currently under-diagnosed, and much greater awareness is necessary. The effects of even a crumb of gluten upon those with celiac are severe, causing an immune response that destroys the intestines, leading to severe malnutrition, growth

retardation, and even cancer. Yet many people, even many doctors, are currently not aware of the meaning of either gluten or celiac. This must change. Please help to pass this legislation as soon as possible. Thank you. What do you think?Melita************ **

[Guest guest]

The suggestions you all have had for the letter are great. We

provided a template letter, since individuals often aren't sure what

to write, and this serves as a good starting point.

We do revise and update letters, as well, so that Members of Congress

receive information about celiac disease from different perspectives,

patient, dietitian, food company, etc.

Since we sent out the alert over 1100 letters about celiac disease

have been sent - Incredible!

Also, if you have a company, or know of a company which may help by

supporting the bill, please let us know. The list of companies

supporting the legislation and our community is growing daily.

Thanks for your help.

Executive Director

American Celiac Disease Alliance

info@...

> I think the shortened letter is good but maybe another version of

the original one would be a little better in describing celiac. We

all know what it means but others don't.

>

> Here is the original letter: The parts in blue are what I think

should be included.

>

> I am writing today to urge you to cosponsor H.Con.Res. 70 to raise

awareness about the world's most common genetic disorder, Celiac

Disease.

>

> The number of people living with celiac disease in the United

States is estimated at 2.2 million, yet only about 90,000 have been

accurately diagnosed. Symptoms of celiac disease include: anemia,

osteoporosis, arthritis, diarrhea or constipation, and infertility.

About 10% percent of Type 1 diabetics have CD, as do 12% of those

with Down Syndrome. Without treatment, the condition can be life

threatening and has been linked to an increased risk of certain types

of cancer, especially intestinal lymphoma.

>

> Individuals with celiac disease are unable to eat foods containing

gluten, a protein found in wheat, rye, and barley. For them, gluten

sets off a reaction which causes damage to the small intestine,

impeding the body's ability to absorb vital nutrients.

>

> The only course of treatment for CD is strict adherence to a gluten-

free diet – no prescription drugs, injections, or invasive medical

procedures. The GF diet is the lifeline for those with CD and

recommendations of the NIH Consensus Panel on Celiac Disease note the

need for patients to see a skilled dietitian to help identify and

treat nutritional deficiencies caused by the disease.

>

> Then the other letter should go here.

>

> Dear (rep name),

> I am writing to ask you to cosponsor HConRes 70, and to push

for a floor vote as soon as possible.

> This bill is very important to those who suffer from celiac

disease, which is a disease which affects approximately 1 in 100

Americans. This common disease is currently under-diagnosed, and much

greater awareness is necessary. The effects of even a crumb of gluten

upon those with celiac are severe, causing an immune response that

destroys the intestines, leading to severe malnutrition, growth

retardation, and even cancer. Yet many people, even many doctors, are

currently not aware of the meaning of either gluten or celiac. This

must change.

> Please help to pass this legislation as soon as possible.

> Thank you.

>

>

>

> What do you think?

>

>

> Melita

> ************ **

>