In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet.
In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet first—it was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
I am also co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
The following is a letter that was sent to me by Wendy Wark of Exton, PA. We urge you to create your own letter based on this example, and send it to your local media, specifically to the health editors of newspapers, magazines and TV stations.
Dear Health Editor:
OCTOBER IS CELIAC AWARENESS MONTH!
Please consider a story about a health condition called Celiac Sprue. Celiac is a mystery illness thats becoming less of mystery and finally becoming more correctly diagnosed. Celiac Sprue, also known as gluten intolerance, is a permanent, lifelong intolerance to gluten (a protein found in wheat & other grains). Considering our diet is primarily a wheat-based diet, this condition touches many Americans.
A HOT TOPIC!
As many as 1 in 150 Americans are expected to have the condition. Celiac Sprue is an up & coming hot health topic; one that your readers will find
interesting and who may have the condition themselves or someone in their inner-circle. The reason its Hot ...
* In July 2000 Rich Gannon, Quarterback for Oakland Raiders, has become the new national spokesperson for Celiac Sprue.
* The media is beginning to report on the guiles of gluten as seen in Newsweek (noted on Research Information Reference Sheet).
* The University of Maryland is now conducting a 5-year nationwide study to prove that the U.S. has the frequency similar to Europe - about 1 in 150 persons (see enclosed studys preliminary findings).
Fortunately in the 1950s Celiac Sprue was identified, but its unfortunate that the road has been slow to get the medical community, and the general public, informed.
CELIAC HOT POINTS
There are so many points why Celiac Sprue awareness is important:
1 - There are
other diseases occurring less frequently that get more media attention.
Lyme Disease ... 16,000 cases each year
Lou Gehrigs Disease... 30,000 cases
Parkinsons Disease ... ~ 500,000 affected Americans
Celiac Sprue (Gluten Intolerance) ... ~1,000,000 affected Americans
2 - Many people are undiagnosed and suffering daily with painful Celiac symptoms such as abdominal pain, diarrhea, fatigue and depression.
3 - Many people
are misdiagnosed due to the medical profession not recognizing the
prevalence of this condition. Many physicians either know
very little about it or nothing at all.
4 - Concise food
labeling is critical by food manufacturers so consumers arent contaminated
with forbidden ingredients. For instance, food
manufacturers use natural flavorings which can be anything under the sun. Unclear labeling is not only a problem just for Celiacs, but anyone with any type of food sensitivity.
5 - There is
an exorbitant cost to insurance companies as people go for years trying
to uncover their mystery illness. In the case of our son, we
incurred about a $60,000 surgery and hospital bill which could have been avoided; with an earlier, correct diagnosis we would have incurred only a
fraction of the medical fees. The steps to diagnose Celiac Sprue first is a blood test to screen antibodies. If that proves positive, then an outpatient
endoscopy is conducted.
WHY SPREAD THE
Both common folk along with the medical profession needs to learn about this condition. Fortunately there is a rather simple cure for this eluding condition ... a gluten-free diet. But unless a physician can spot and test for Celiac Sprue in their patient, the patient doesnt avoid gluten-filled foods. The treatment is uncomplicated ... a dietary change by removing the offending gluten! No surgery or drugs needed!
Please consider sharing this condition with your audience. Probably many of your readers will have some of the symptoms mentioned, or will know about family or friends that are suffering. Im committed to educating others about this condition, so much so, that Ive written a book Living Healthy With Celiac Disease. Its filled with information to help get newly-diagnosed persons quickly on the road to recovery. Let me know if you would like a complimentary copy.
If you have interest in this, please contact me at 610 363-5049 for further information. Ive included a Description of Celiac Sprue and our Personal Story. Ive also enclosed a page with Research Information Resources along with other backup information.
Thanks for the consideration.
Description of Celiac Sprue
Research Information Resources
Study Findings from University of Maryland Study (http://www.celiaccenter.org)
Celiac Sprue is a condition causing damage to the small intestines resulting from gluten ingestion. The damage occurs when the immune system launches an attack against the gluten (the forbidden protein found in wheat, rye, barley and oats). The damaged intestinal lining and villi prevents the small intestines from absorbing food properly. Another sister condition caused by gluten intolerance is Dermatitis Herpetiformis, a skin disorder presented as an itchy rash.
A person with Celiac Sprue has a chronic condition that results in a variety of outcomes. Symptoms are quite varied and can be subtle to severe, however the typical ones include abdominal pain, bloating, diarrhea and/or constipation, weight loss (although weight gain can occur too), malnourishment, vitamin deficiencies, anemia, osteoporosis, depression, fatigue, irritability and fogginess to name a few. There is no classic Celiac; each case is quite individualized. This wide range of symptoms makes Celiac Sprue tricky to diagnose. According to Dr. Peter Green, Gastroenterologist at Columbia University, less than 50% of persons with celiac disease have classic symptoms.
Celiac Sprue is a genetic condition that falls in the autoimmune disease family which includes diabetes, lupus, multiple sclerosis and rheumatoid arthritis. The autoimmune disorders can be rather hard to diagnose with symptoms often times simulating other conditions. For instance Celiac Sprue is often misdiagnosed as diverticulitis, irritable bowel syndrome, fibromyalgia, lactose intolerance and chronic fatigue syndrome. These incorrect diagnoses could actually be symptoms of celiac disease! Further, those who suffer with fatigue, irritability and depression are often diagnosed with psychological disorders. In Europe where Celiac is more well-known, persons typically get diagnosed within 6 weeks of symptoms occurrence. Sadly in the United States, persons average over 10 years(!) from onset of Celiac symptoms to diagnosis.
Once a person gets diagnosed, the treatment is simply removing gluten from the diet. No surgery or drugs are needed. When the gluten trigger is removed, the body heals the intestinal damage.
AN ONCOLOGY SCARE THAT RESULTS IN A GIS TRIUMPH!
CT scans certainly are a good diagnostic tool ... most of the time. But there are times that what you see on the scan isnt exactly whats happening. After a CT scan, my 15-month old son was diagnosed with a finger-like cancer spreading through his abdomen. Within two days of this diagnosis, he was in surgery to investigate the massive tumor and to take further bone marrow biopsies.
What was a medical marvel to the physicians (and a miracle to our family!) was upon entering his abdomen there was no cancer at all. What did appear were high numbers of clustered swollen lymph nodes masquerading as a massive tumor.
So, cancer was ruled out, but now what? What was causing the lymph-node havoc in our childs gut?
Directed to the hands of the Gastroenterology department, testing uncovered that our son had Celiac Sprue, also known as gluten intolerance. His body produced the swollen lymph nodes because it was vehemently reacting to the invading gluten. The condition actually causes a bodys immune system to attack its own tissues (common in autoimmune disorders like diabetes, multiple sclerosis and rheumatoid arthritis). The attack damages self-tissue in the small intestinal lining and villi.
Weve had a happy ending to our trauma, the offending gluten has been removed from our sons diet. He now follows a lifetime gluten-free diet and is perfectly healthy and happy.
Celiac Disease and Gluten Sensitivity
by Carol E. Semrad, MD
Columbia University, 1995
Celiac Disease Not As Uncommon As Once Thought , Researchers At Wake Forest
Science Daily, 1/28/00
Celiac Disease: When Food Becomes the Enemy
MayoClinic Health Oasis Newsletter, 10/23/98
Detecting Celiac Disease in Your Patients
by Harold T. Pruessner, MD, University of Texas Medical School at Houston
American Family Physician Journal, 3/1/98
NFL Pro Bowl Quarterback Rich Gannon Launches National Celiac Disease
Awareness Campaign Press Release
The Perils of Pasta
by Anne Underwood
Rich & Shelley Gannon Transcript, 2/22/00
Study Findings from University of Maryland
The Widening Spectrum of Celiac Disease
by Joseph A. Murray, MD
The American Journal of Clinical Nutrition, 3/99
NATIONAL ASSOCIATIONS, SUPPORT GROUPS & SERVICES
American Autoimmune Related Diseases Assoc.
750 17th St. NW, Ste. 1100
Washington, DC 20006
800 598-4668 literature requests
American Celiac Society
Dietary Support Coalition
58 Musano Court
West Orange, NJ 07052-4103
Canadian Celiac Association
6519-B Mississauga Road
Mississauga, Ontario L5T 1A6
416 567-7191 fax
Celiac Disease Clinic
Univ. of California
San Diego Campus at La Jolla
9500 Gilman Dr.
La Jolla, CA 92093
* Celiac Disease Foundation
13251 Ventura Blvd., Suite 3
Studio City, CA 91604-1838
Elaine Monarch, Exec. Director
* Celiac Sprue Association / United States of America, Inc. (CSA/USA)
PO Box 31700
Omaha, NE 68131-0700
Celiac Disease and Gluten-Free Diet Support Page
The Gluten-Free Page
Celiac Disease/Gluten Intolerance Web Site
(Don Wisss web site containing a set of links to other celiac web sites.)
* The Gluten Intolerance Group of North America (GIG)
15110 10th Ave. S.W., Ste. A
Seattle, WA 98166
Cynthia Kupper, Exec. Director
St. Johns University Celiac website
(St. Johns sponsors a newsgroup with over 3000 members worldwide)
200 First St. S.W.
Rochester, MN 55905
507 284-2511 Dr. Joseph Murray
University of Maryland
Pediatric GI & Nutrition Lab
Baltimore, MD 21201
410 328-0812 Dr. Fasano
410 706-1997 Dr. Horvath
Dr. Cynthia Rudert, MD, FACP
2500 Hospital Blvd. - Ste. 210
Roswell, GA 30076
770 475-0903 Dr. Rudert
(large practice devoted to celiac sprue)
subscribe at www.celiac.com
Sullys Living Without Magazine
1840 Industrial Dr., Suite 200
Libertyville, IL 60048
* The 3 recognized national celiac organizations in the U.S.