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Western New York Gluten Free Diet Support Group
Medical Information


Have you recently been diagnosed with Celiac Disease or Dermatitis Herpetiformis? Our support group is here to help you back on the road to health.  Come to a meeting and receive helpful information, adivice, tips, and a bag of gluten-free food (compliments of Wegmans). You will also have the support of a caring group of people (and enjoy many gluten-free products & treats). While you are waiting for the next meeting, here is some research-based information and some links with information to help you get started with the Gluten-Free diet.

Included, you will find information about symptoms of Celiac disease, the tests used to diagnose Celiac, the types of foods that are OK & the ones to avoid, helping you gain back your health. 

Our group is a great place to start.  We are here to help you.


What is Celiac Disease?

Celiac disease is a genetically inherited disorder that affects both children and adults.  When a person who has Celiac disease eats foods that contain gluten, a protein found in wheat, rye, barley, and other lesser known grains, the villi in the small intestine become damaged.  Celiac disease is much more common than most Americans realize since in average healthy people it affects 1 in 133.  That makes Celiac disease more common than Alzheimer’s Disease, Cystic Fibrosis, Hemophilia, Parkinson’s disease, Autism, Ulcerative colitis, Crohn’s disease, Lupus, and Multiple sclerosis to name a few diseases that are familiar to many Americans.  For people who have related symptoms, the numbers jump even higher to 1 in 56. 


Individuals with Celiac disease need to eliminate gluten from their diet in order to return to health.  Gluten is found in many, many foods, sauces and condiments. One of the best things about Celiac disease is that it can be controlled by diet.  Drugs are not required with Celiac disease, but a strict adherence to the gluten free diet is a requirement.  What other disease can be managed by diet and diet alone? 


What are the symptoms Of Celiac Disease?

There are many, many symptoms for Celiac disease.  However before we list the symptoms for Celiac disease it is critical to point out that a large percentage of the population will have NO symptoms of Celiac disease.  In fact, approximately 41% of adults with Celiac disease will have NO SYMPTOMS (also referred to as asymptomatic).  Additionally, an even higher percentage of children will not have any symptoms of Celiac disease.  Approximately 60% of children will have NO symptoms for Celiac disease or will be asymptomatic.


There are 256 symptoms and related conditions that indicate a patient may have celiac disease.*  As it has already been mentioned, the majority of individuals with Celiac disease will have no symptoms and thus are considered to have silent celiac disease.  Symptoms for Celiac disease include, but are not limited to the following: diarrhea, constipation, anemia, fatigue, mild or vague abdominal symptoms such as bloating, pain, loose stools; irritable bowl syndrome, stomach pain, weight loss, malnutrition, edema, Apthous Ulceration (mouth sores), joint pain, bone pain, headaches, infertility, repeated miscarriages, osteoporosis, diabetes, thyroid problems, downs syndrome, skin rashes, dermatitis, arthritis, psychiatric disorders, short stature, Dermatitis Herpetiformis (a skin condition), chronic hepatitis with hypertransaminasemia, permanent enamel hypoplasia, epilepsy with occipital calcifications, primary biliary cirrhosis, and primary ataxia, stress, food allergy, gallstones, nervous condition.


Because so many individuals will not have any symptoms for celiac disease, it is important for first-degree members of people with celiac disease, as well as individuals with related symptoms or conditions be tested.  Not all physicians are familiar with the Celiac testing, therefore you may want to review or printout our information on testing.


The Benefits of Early Diagnosis of Celiac Disease


The benefits of early detection of Celiac Disease are enormous.  Delayed diagnosis greatly increases a person’s risk of developing an autoimmune disorder, neurological problems, osteoporosis, and even cancer.  To put the dramatic risk in perspective, the risk of an autoimmune disease for the general US population is 3.5%.  For a child ages 4- 12 years old, the chance of developing an autoimmune condition id 16.7%, about 4 times that of the general population.  For an individual over the age of 20 years, the risk of developing an autoimmune condition is 34%, or about 9 times that of the general population.** 



Presently in the US, it takes on average over 10 years for a person with symptoms to get diagnosed with Celiac disease.  This type of delay in diagnosis puts the individual at great risk for other serious conditions.


*Source:  Celiac Disease:  Myths and Facts.  Stefano Guandalini, M.D., Michelle Melin-Rogovin, MPP, University of Chicago Celiac Disease Program. 

**Source:  Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease.  SIGEP Study Group for Autoimmune Disorders in Celiac Disease.  Ventura A, et.al. Gastroenterology 1999 Aug; 117(2):297-303.


Celiac Testing:

The first step in Celiac testing is a series of blood tests, which measure your immune system’s response to gluten.  Frequently referred to as the “Celiac Panel”, the following tests are indicated to assist in the diagnosis of Celiac disease:

            ·    Anti-Endomysial Antibody (IgA)  (EMA)

·    Anti-Gliadin Antibody (IgG and IgA)

·    Anti-Tissue Transglutaminase Antibody (IgA) (tTG)

·    Anti-Reticulin Antibody (IgA)

The better tests would be the Anti-Endomysial Antibody (EMA), and the Anti-Tissue Transglutaminase (tTG) because they are more sensitive and specific.  Some physicians that are knowledgeable in the Celiac area of study consider the Anti-Gliadin Antibody test to be obsolete.

An intestinal biopsy is usually recommended for those individuals whose blood tests indicate the possibility of Celiac disease.  An intestinal biopsy is considered the “Gold Standard” for the diagnosis of celiac disease after blood tests. 



Celiac Disease

The National Institutes of Health put out this wonderful booklet that you can access online. There is also a PDF version of it and can be printed out.


Celiac Disease

This site is a section of our national organization, the Celiac Support Association and gives much  information for self-management of Celiac disease.


Going Gluten-Free:  A Primer for Clinicians

Although written for clinicians, the information is well written, clear and full of charts and lists of foods. (It is in a PDF format) The one author, Shelley Case (who came to Buffalo on September 24, 2005) is a registered dietician with over 20 years of experience helping Celiac patients lead healthful lives.