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Dear list members.

In a recent Post I asked US members to join me in a program to raise
awareness about celiac disease. I received 30 or so pledges of help, some
from  leader of small support group from around the country. ( Sadly, I
didn't hear a word from any National Groups or Celiac Publications)

Despite earlier negative responses from ABC, I think we should target them
again in the first week of January the address is:

2/12/98

ABC
Capitol Cities
77 W. 66th St., 3rd Floor
New York, NY 10029
Attn. 20/20 Staff


I've included a rough  draft of the letter I intend to use.. NOTE; YOUR
LETTERS NEEDN'T BE THIS LENGTH. YOURS MIGHT ONLY BE A FEW LINES ENCOURAGING
THE TARGET TO DO THE STORY.
My only imperative is that all letters be civil.

Thanks
Dan


Letter
Re: Program Idea

I run a support group in New Hampshire  that helps people suffering from a
little known affliction  called Celiac Disease. You may not have heard of
this disease but you soon  will.

Presently, Celiac Disease is greatly under-diagnosed in the United States
at approximately 1 in 2500. In Europe  the prevalence is 1/250. Scientists
agree that the US prevalence should match this Americans of Northern
European descent.  This would suggest that there are perhaps ? of a million
celiacs in this country, and only a fraction of them have been diagnosed.
Untreated celiac disease can result in anemia, diabetes, osteoporosis,
malnutrition and, in some cases, cancer.

Celiac Disease reveals itself  with symptoms that vary wildly. The "classic
patient" suffers from diarrhea . bloating and abdominal pain. They are
often thin or emaciated. Sometimes , though, the celiac may be obese , or
suffer from constipation. These  rather general maladies often defy
diagnosis which is why CD is under diagnosed by a factor of 100. Though
un-aware of it, the unwitting celiac is being poisoned by his morning
toast.

The prescribed treatment for CD sounds simple: Remove wheat , rye, oats and
barley and anything derived from those items from your diet.  Proteins  in
these grains, referred to as glutens,  damage the Celiac's small
intestines, destroying that organ's ability to absorb nutrients. You will
admit, it's a tall order dropping that big part of the recommended food
pyramid from the diet. No more bread, bagels  donuts, pasta  or beer. It is
far more difficult than it appears .

Hidden Gluten is ubiquitous on the grocer's shelf. Visit the frozen food
chest, and remove a bag of broccoli. The label reads "Ingredients
broccoli", but fails to mention that flour is used as an aid to packaging.
The label of a salad dressing may not include any obvious gluten but has
"natural flavorings" Hmm! what does that contain?  Other suspect
ingredients include malt,  caramel color , hydrolyzed vegetable, plant and
textured protein, modified food starch, starch and pregelatanized starch.

The Celiac is potentially at risk at the hands of their doctors.. Since the
Physicians Desk Reference  shows a partial list of ingredients, the  MD
cannot assure his patient that the drug  just prescribed is gluten -free.
The local pharmacist will probably have to call the drug manufacturer to
get a complete list of  ingredients. Celiacs needing hospitalization must
 often bring their own foods.

To live somewhat normally, the Celiac must investigate the gluten status of
everything they plan to ingest. This requires calling a food  or drug
manufacturer and asking some important questions: do ingredients  such as
natural flavorings contain gluten? Is the food processed in a gluten free
environment, that is to say not exposed to any flour?  Does the
manufacturer have control over the products provided by their vendors?
 Most Celiacs ask for a confirmation in writing. Many times these
 correspondences say that the  gluten-free status is subject to change at
any time. So this process must be repeated at regular intervals.

Of course, CD is hard to spot. Some general practitioners do not recognize
the somewhat non- specific symptoms.  Many  Celiacs bounce from doctor to
doctor to psychiatrists until they find someone with a little knowledge
about Celiac Disease.  It is not uncommon for Celiacs to go undiagnosed,
and therefore, untreated, for five to ten years.

Following the guidelines imposed by managed care, our GP tried to
discourage my wife from receiving a small bowel biopsy, saying: "I know you
don't have it. I can tell just by looking at you ."  Of course, he failed
to consider her symptoms and that she had two sisters suffering from the
disease. Her biopsy confirmed CD.  Her doctor's ignorance might have
condemned her to a painful future.


Celiac Disease  deserves the attention of insurance companies, medical
professionals, food and drug manufacturers and the general public.  I think
you would be providing an invaluable public service by doing a program on
this disease and its ramifications.

 Celiac disease has an impact on people in New Hampshire and the region.
Our support group, The Seacoast Celiac Support Group has over 90 member
from NH, Maine and Massachusetts. A new group is being formed in Nashua and
the Boston area group has over 300 members, many from southern NH. These
numbers may not seem significant, but specialists in CD assert that the
currently diagnosed  represent only the "tip of the iceberg" . Over the
next 5 years there will be an explosion of diagnosis of this disease.


Sincerely,

Dan Davis