It took three decades to figure out what was making Donna Sawka so sick. Her symptoms — bloating, chronic diarrhea and weight loss — began early in childhood, and they only became worse as she aged.
Nine years ago, after developing severe anemia, a specialist told Ms. Sawka that she had celiac disease. The digestive disorder causes damage to the small intestine when gluten, a protein found in wheat, barley and rye, is ingested. People with the disease need to follow a strict gluten-free diet for the rest of their lives to avoid serious complications like osteoporosis and lymphoma, an immune system cancer.
Ms. Sawka, 48, of Fairless Hills, Pa., said she “was overwhelmed” upon learning she had the disease.
“I kept thinking about everything I wouldn’t be able to eat,” she went on. “I couldn’t even receive communion at church.”
Ms. Sawka’s reaction is a familiar one at the support group she attends. It takes the average patient 10 years to receive a diagnosis. And according to specialists, they are the lucky ones. Studies show that 3 million Americans, or 1 in every 1,133 people, have Celiac disease. But 95 percent of them have yet to learn they have it.
“The entire disease and all of its manifestations are incredibly under diagnosed.” “Patients often have it for a decade or two before they are diagnosed.”
Celiac Disease is often difficult to detect because the symptoms vary so widely from person to person. Ten years ago, the medical community thought it was a rare disorder that affected only 1 in every 10,000 people, primarily children who had digestive problems and failure to thrive.
Celiac disease……also known as Celia Sprue or gluten-sensitive enteropathy–is a digestive and autoimmune disorder that results in damage to the lining of the small intestine when foods with gluten are eaten.
Glutens are a form of protein found in some grains. The damage to the intestine makes it hard for the body to absorb nutrients, especially fat, calcium, iron, and folate. My father had this disease and it is not pleasant.
“It’s a problem. “The majority of patients do not have the traditional signs and symptoms. If someone’s only presenting symptom is anemia, physicians will think of a hundred other things before they think of Celiac disease.”
As a result, the condition is also commonly mistaken for other ailments. Ms. Sawka, for one, was told she had everything from irritable bowel syndrome to lupus to an allergic reaction from a spider bite before Celiac disease was confirmed.
Part of the problem is also a lack of education among physicians, particularly internists. Most primary care physicians are simply unaware of new research that shows the disease is common and can manifest itself in unusual ways.
“They think it is an exotic malady,” that persistent fallacy causes a less-than-appropriate effort to order the right blood tests and refer to gastroenterologists for care.”
Physicians now know that the disease is much more common. Most patients never experience the so-called classic symptoms: bloating, chronic diarrhea and stomach upset.
In 2006, the National Institutes of Health started a campaign to raise awareness of the disease among both the general public and physicians. A goal was to increase rates of diagnosis because, unlike many ailments, there is a definitive way to stop Celiac disease from progressing once it is recognized.
“The vast majority of cases experience a complete remission from symptoms once they are diagnosed and go on a gluten-free diet. “So essentially, you have no disease. That is what makes it all the more important to be diagnosed.”
And there is no better time to be on a gluten-free diet. In 2008, 832 gluten-free products entered the market, nearly 6 times the number that debuted in 2003. Last year, gluten-free even emerged as a fad diet in the general population. Now we see the gluten-free products everywhere.
“The quantity and quality of these products is amazing,”
Dr. Fasano said gluten-free products used to taste like cardboard but had significantly improved in recent years. “The only problem,” he said, “is that they cost five or six times more than their normal counterparts.”
Researchers are also beginning to experiment with drugs that may be able to block the immune response to gluten, much like a lactate pill. If the clinical trials are successful, individuals with Celiac disease may someday be able to ingest small amounts of gluten.
Until then, the gluten-free diet is working for patients like Ms. Sawka. “I am perfect now,” she said after 35 years of feeling sick. “Every system in my body was in an uproar, and then everything just quieted down.”
By CAROLYN SAYRE
Do you know how many foods contain gluten. You have to learn that to begin with. And you will need to become an expert in reading the ingredients on food labels and become a detective for gluten in the food that is not labeled.
Check out this Gluten Free Food List that should help.
“The Food You Eat Can Be Either The Safest and Most Powerful Form Of Medicine Or The Slowest Form Of Poison.”
So What are the Causes and Risk Factors of Celiac Sprue?
It occurs mostly in whites of Northern European ancestry and is rare in Africans and Asians.
While the precise mechanism of intestinal damage is unknown, it is clear that removal of gluten from the diet results in resolution of symptoms and intestinal healing in most patients.
Gluten refers to the protein component of grains such as wheat, rye, barley, and oats (but not rice or corn).
The exact cause of Celiac disease is unknown. The lining of the intestines contains areas called villi, which help absorb nutrients. When people with Celiac disease eat foods or use products that contain gluten, their immune system reacts by damaging these villi.
This damage affects the ability to absorb nutrients properly. A person becomes malnourished, no matter how much food he or she eats.
The disease can develop at any point in life, from infancy to late adulthood.
Symptoms of Celiac disease vary among sufferers and include:
Auto-immune” describes the way that the disease does damage; “auto” means “to oneself” so it is saying that the immune system of a Celiac mistakenly does damage to the Celiac rather than to the supposed invader.
What happens is that the immune system believes that a portion of the food eaten needs to be attacked, and as a side-effect of the attack, the lining of the small intestine gets damaged.
Celiacs who are not following a gluten-free diet will suffer from damage to the lining of their small intestines (specifically, to the “villi” the little hair-like growth that helps process food in the small intestine).
This damage slows and even prevents the digestion of food, which can lead to malnutrition (anemia, osteoporosis, vitamin deficiencies, and more)
Oh, Bread! Bless thy white glutinous face
Savior of the human race
Staff of life you’re said to be
Oh, Bread, methinks you’re killing me!
An Open Letter Ms.Modify wrote to Celiac Disease when she was sick in bed. People often don’t know the severity of this illness and tend to link it with food allergies (which it is not!!)
Let’s Talk About The Celiac Disease Diet…..
If you have been recently diagnosed and struggling with transitioning to a gluten-free diet, The Celiac Disease Foundation has a helpful 7 Day Gluten-Free Meal Plan. Full of ideas on how to get started!
So what is the treatment….Celiac disease cannot be cured. However, your symptoms will go away and the villi in the lining of the intestines will heal if you follow a lifelong gluten-free diet.
You must read food and medication labels carefully to look for hidden sources of these grains and ingredients related to them. Because wheat and barley grains are common in the American diet, sticking with this diet is challenging. With education and planning, you will heal.
You should NOT begin the gluten-free diet before you are diagnosed. Starting the diet will affect testing for the disease.
The health care provider may prescribe vitamin and mineral supplements to correct nutritional deficiencies. Occasionally, corticosteroids (such as prednisone) may also be prescribed for short-term use or if you have sprue that does not respond to treatment. Following a well-balanced, gluten-free diet is generally the only treatment you need to stay well.
When you are diagnosed, get help from a registered dietitian who specializes in Celiac disease and the gluten-free diet. A support group may also help you cope with the disease and diet.
So can we prevent Celiac Sprue?
Because the exact cause is unknown, there is no known way to prevent the development of Celiac disease. However, being aware of the risk factors (such as having a family member with the disorder) may increase your chances of early diagnosis, treatment, and a long, healthy life.
10 Facts about Eating Gluten Free your Friends and Family Must Know!
Dear Friends, Family, and acquaintances:
I am not eating gluten free as part of a fad, or because the latest celebrity has decided to jump on the G-free bandwagon.
I am not eating gluten free to annoy you, inconvenience you or to make things difficult when we go out to eat.
I am not eating gluten free to be the center of attention or to put a damper on your party.
I am not eating gluten free to pay outrageous prices for a single cookie, cupcake, or a tiny little pizza.
I am not eating gluten free to pay a lot more for a little bag of gluten free flour.
I am not eating gluten free to worry about what I can eat when I go out to eat.
I am not eating gluten free because I love to analyze every ingredient on every item I pick up to purchase.
I am eating gluten free because that little protein that you cannot see in your muffin, cookie, cake, pie, pizza, soup, and yes, even your soy sauce makes me ill.
I am eating gluten free because that little protein hurts my stomach, my joints, my muscles and yes, even my brain.
I am eating gluten free because I have a disease.
I am including a Recipe Book you can purchase if you have kiddos affected by this disease.
(The Gluten-Free Recipes for Kids cookbook offers more than 85 kid-friendly gluten-free recipes. The Gluten-Free Recipes for Kids cookbook does the planning for you. The spiral-bound cookbook includes an introductory section filled with helpful tips and educational information to help parents understand celiac disease, including a description of the dairy-free and gluten-free (GFCF) diet, and recipes to fit.)
Here are some Resources For People with Celiac.…….
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