|CNY Celiac Support Group
Helping People With Gluten Intolerance in the CNY Area Live a Happy and Healthy Gluten-Free Lifestyle!
The Central New York Celiac Support Group was formed to share support and understanding in helping us manage our lives well without gluten, and to create greater understanding of celiac disease and gluten sensitivity in both the lay and professional community.
Celiac and Gluten Sensitivity
For people with celiac disease, ingesting even tiny amounts of gluten can set off an autoimmune reaction that flattens the finger-like villi lining the small intestine. The most common symptoms are bloating, gas, diarrhea and constipation, as well as early osteoporosis. The autoimmune reaction can also cause skin rashes, chronic fatigue, bone and joint pain, neurological problems, liver problems, diabetes, infertility in both men and women and cancers, including lymphoma. An estimated three million Americans have celiac disease - and the vast majority don't know it because it can have no symptoms or mimic other diseases.
Separately, a smaller group of people have a specific allergy to wheat; exposure can lead to rashes, asthma and even anaphylactic shock.
A third category of people - as many as 20 million Americans - appear to be sensitive to gluten without having full-blown celiac disease. For them, symptoms may be less typical, involving depression, mental fogginess, mood swings and behavior changes. Much less is known about this group.
"It's only in the last couple of years that we have realized there truly is a third condition that involves the immune system, but in a different way than a typical allergy or autoimmune reaction," says Alessio Fasano, a celiac expert at the University of Maryland School of Medicine.
(from http://online.wsj.com August 24.2010)
There are many undiagnosed cases of celiac disease. In order to get accurate test results, a person should not have been following a gluten-free diet. It is important to have accurate celiac testing because there are many negative effects of untreated celiac disease.
Walk-a-Thon - Making Tracks for Celiacs
SUNDAY April 28th 2013 at OVERLOOK Pavilion at Jamesville Beach Park
Having it on a Sunday is new, so we will really have to promote it big so people don't get confused!
1 Mile Walk/5k Cross Country Run
REGISTRATION begins at 10:00 a.m.
**Online registration is now open** at www.celiacwalk.org
by April 15-th, or come early and register the morning of the walk
Anyone interested in volunteering, or wishing to make a donation towards our raffles, please let me know.
Many thanks to all of you who have helped in the past to make this event so successful.
Ruth Wyman, President
(Alternatively you can email Ruth Wyman)
Going Gluten-Free: Value Beyond Celiac Disease?
David A. Johnson, MD
Gluten-sensitive enteropathy is something that we probably need to think more about. Patients are all abuzz with this concept of gluten withdrawal, and they are saying, "I feel better. What can you tell me about this?"
I thought it would be helpful to review this topic. A recent article in the New York Times caught my eye, and lo and behold, it was about an excellent article in the February issue of Gastroenterology and Hepatology by William Chey's group at the University of Michigan. I thought it was time to take a look at the data and put some science behind what is currently a field that is running without much guidance.
What Is Gluten and What Is Celiac Disease?
First, let's talk about gluten. Gluten is a component of wheat and wheat-related grain products. When you start to talk about gluten withdrawal, is it really gluten withdrawal or is it wheat-product withdrawal or grain-product withdrawal? Grains are complex carbohydrates that have a number of fermentable sugars, which we would frequently remove from patients' diets because most of them are polyglycols -- fructans and galactans. We know from experience that when you withdraw fermentable sugar from patients, they frequently have improvement in symptoms such as bloating, gassy discomfort, and diarrhea.
Now let's focus on celiac disease. The prevalence of celiac disease has increased over the past several decades. Some inferential data suggest that some of it may be related to the hybridization of wheat and related grain products over the past several decades. We may actually be sensitizing more people, causing gluten-sensitive enteropathy or non-celiac gluten sensitivity, which we will discuss later.
We found that gluten-sensitive enteropathy is responsive to gluten withdrawal, but now we are seeing other patients who tell us that they feel better if they withdraw gluten. And they have found this out by going on the Internet or talking to friends and family who have had causal experience with this. Now we have patients out there doing a variety of things on their own accord and without a lot of medical judgment. That is not so good, particularly when you start talking about withdrawal and restrictive diets. >>
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Gluten: What You Don't Know Might Kill You
... We used to think that gluten problems or celiac disease were confined to children who had diarrhea, weight loss, and failure to thrive. Now we know you can be old, fat, and constipated and still have celiac disease or gluten sensitivity.
Gluten sensitivity is actually an autoimmune disease that creates inflammation throughout the body, with wide-ranging effects across all organ systems including your brain, heart, joints, digestive tract, and more. It can be the single cause behind many different "diseases." To correct these diseases, you need to treat the cause--which is often gluten sensitivity--not just the symptoms.
Of course, that doesn't mean that ALL cases of depression or autoimmune disease or any of these other problems are caused by gluten in everyone--but it is important to look for it if you have any chronic illness.
By failing to identify gluten sensitivity and celiac disease, we create needless suffering and death for millions of Americans. Health problems caused by gluten sensitivity cannot be treated with better medication. They can only be resolved by eliminating 100 percent of the gluten from your diet...