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    Scott Adams
    Scott Adams

    October is Celiac Awareness Month!

    Reviewed and edited by a celiac disease expert.

    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.

    • LETTER TO EDITOR
      September 1, 200_



      Celiac.com Sponsor (A12):






      Celiac.com Sponsor (A12-m):




      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. For instance,
      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 WORD?
      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.

      Sincerely,


      Enclosures
      Description of Celiac Sprue
      Personal Story
      Research Information Resources
      Study Findings from University of Maryland Study (http://www.celiaccenter.org)

       

    • DESCRIPTION OF CELIAC
      Description of Celiac Sprue
      Prepared by Wendy Wark
      September 1, 2000

    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.

    • OUR PERSONAL STORY
      Our Personal Story
      Wendy Wark
      September 1, 2000

    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

    http://cpmcnet.columbia.edu/dept/gi/celiac.html

    Celiac Disease Not As Uncommon As Once Thought , Researchers At Wake Forest

    Science Daily, 1/28/00

    http://www.sciencedaily.com/releases/2000/01/000128071928.htm

    Celiac Disease: When Food Becomes the Enemy

    MayoClinic Health Oasis Newsletter, 10/23/98

    http://www.mayohealth.org/home?id=HQ00393

    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

    http://www.aafp.org/afp/980301ap/pruessn.html

    NFL Pro Bowl Quarterback Rich Gannon Launches National Celiac Disease

    Awareness Campaign Press Release

    http://www.newswise.com/articles/2000/7/celiac3.mdm.html

    The Perils of Pasta

    by Anne Underwood

    Newsweek, 10/11/99

    Rich & Shelley Gannon Transcript, 2/22/00

    PlanetRx.com

    http://www.planetrx.com/community/specialguests/gannon022200.html

    Study Findings from University of Maryland

    http://www.celiaccenter.org

    The Widening Spectrum of Celiac Disease

    by Joseph A. Murray, MD

    The American Journal of Clinical Nutrition, 3/99

    http://www.ajcn.org/cgi/content/full/69/3/354

    NATIONAL ASSOCIATIONS, SUPPORT GROUPS & SERVICES

    American Autoimmune Related Diseases Assoc.

    Washington Office

    750 17th St. NW, Ste. 1100

    Washington, DC 20006

    202 466-8511

    800 598-4668 literature requests

    http://www.aarda.org

    American Celiac Society

    Dietary Support Coalition

    58 Musano Court

    West Orange, NJ 07052-4103

    201 325-8837

    Canadian Celiac Association

    6519-B Mississauga Road

    Mississauga, Ontario L5T 1A6

    Canada

    http://www.celiac.ca

    416 567-7195

    416 567-7191 fax

    Celiac Disease Clinic

    Univ. of California

    San Diego Campus at La Jolla

    9500 Gilman Dr.

    La Jolla, CA 92093

    619 534-4622

    * Celiac Disease Foundation

    13251 Ventura Blvd., Suite 3

    Studio City, CA 91604-1838

    818 990-2354

    Elaine Monarch, Exec. Director

    http://www.celiac.org

    * Celiac Sprue Association / United States of America, Inc. (CSA/USA)

    PO Box 31700

    Omaha, NE 68131-0700

    http://www.csaceliacs.org

    402 558-0600

    WEB RESOURCES

    Celiac Disease and Gluten-Free Diet Support Page

    https://www.celiac.com/

    Coeliac Society of the UK

    email:
    admin@coeliac.co.uk

    http://www.coeliac.co.uk

    The Gluten-Free Page

    Celiac Disease/Gluten Intolerance Web Site

    http://www.panix.com/~donwiss

    (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

    206 246-6652

    Cynthia Kupper, Exec. Director

    WEB RESOURCE

    St. Johns University Celiac website

    http://www.enabling.org/ia/celiac

    (St. Johns sponsors a newsgroup with over 3000 members worldwide)

    EXPERTS

    Mayo Clinic

    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)

    PERIODICALS

    Scott-Free Newsletter

    subscribe at www.celiac.com

    Sullys Living Without Magazine

    1840 Industrial Dr., Suite 200

    Libertyville, IL 60048

    847 816-0301

    * The 3 recognized national celiac organizations in the U.S.



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  • About Me

    Scott Adams

    Scott Adams was diagnosed with celiac disease in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. In 1995 he launched the site that later became Celiac.com to help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives.  He is co-author of the book Cereal Killers, and founder and publisher of the (formerly paper) newsletter Journal of Gluten Sensitivity. In 1998 he founded The Gluten-Free Mall which he sold in 2014. Celiac.com does not sell any products, and is 100% advertiser supported.


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    Scott Adams
    The Sprue-Nik Press, published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan, Volume 7, Number 5, July/August 1998. Dr. Peter Ernst is Senior Scientist at the Dept. of Pediatrics, University of Texas Medical Branch. He is the son of Canadian Celiac Association (CCA) co-founder Kay Ernst, and is a celiac himself.
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    Jefferson Adams
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    Ultimately, Esposito had her celiac disease confirmed through blood test and biopsy, but in some ways, that was only the beginning of her challenges. She says she believes that the medical industry needs to focus on "treating the individual person, the whole person, body and mind and not about money and mass studies of a disease."
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    Developing Story: Breaking news indicates that Jennifer Esposito has been dismissed from her role in Blue Bloods, for reasons she says have to do with her celiac disease. This story is developing, so stay tuned...
    Source:
    http://www.huffingtonpost.com/sz-berg/jennifer-esposito-celiac_b_1770642.html


    Jefferson Adams
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    Celiac.com 01/30/2014 - Why is Dunkin' Donuts taking so long to debut gluten-free versions of its famous treats? First came the whispers of test marketing and then the official announcement, but then…?
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    For its part, the company seems intent on getting gluten-free right. They have spent a great deal of time, and I assume money, creating a reliable, safe gluten-free production and distribution chain.
    From source materials to dedicated gluten-free production facility to special production methods, to comprehensive training and service, Dunkin' looks to be taking its gluten-free donut rollout with the utmost seriousness.
    For a more detailed account of Dunkin's much anticipated gluten-free donut rollout, Venessa Wong has an excellent article in Bloomberg Businessweek.


    Michele Bender
    Celiac.com 10/22/2014 - For my Girl Scout Gold Award I created a poster, pamphlet, and informational sheets as one part of my project. The poster covers definitions, symptoms, statistics, and links for further information. The pamphlet was created with the title of “Is Eating Gluten-Free Right for Me?” (See Download Link Below). The different parts of the pamphlet include “Having Celiac”, “Having a Gluten Sensitivity”, “Misconceptions about the Gluten Free Diet”, “Being Tested for Celiac”, and “About the Author”. 
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