<<Disclaimer: Verify this information before applying it to your situation.>> 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