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.
People with untreated celiac disease typically have abnormally high levels of associated antibodies including anti-gliadin, anti-endomysium and anti-tissue transglutaminase. The presence of these antibodies is caused by an immune system reaction to the presence of gluten in the body.
When people with celiac disease eat foods or use products containing gluten, the response from their immune system damages the tiny, fingerlike protrusions lining the small intestine, called villi. Properly working villi allow nutrients from food to be absorbed into the bloodstream. When villi are damaged, vital nutrients go unabsorbed. In addition to vitamin deficiencies and their associated maladies, left untreated, villi damage can result in full-blown malabsorption, accompanied by nerve damage, wasting, and organ distress and failure.
Until fairly recently doctors believed celiac disease was quite rare, and only affected about 1 in 5,000 people. It was also thought of a disease that mostly affected babies and very young children. Recent studies, however, put the estimate of celiac sufferers at 1 in 133 people in the United States. Most people with celiac disease still dont know that they have it.
More alarmingly, many experts believe that Non-Celiac gluten intolerance could be upwards of 15 times more prevalent than full-blown celiac disease. According to some experts up to 15% of people worldwide—a full 1 in 7—are gluten-sensitive or gluten-intolerant. These people often test negative or inconclusive for Celiac Disease, but can still suffer the same symptoms and long-term problems when they ingest gluten.
Its very important to diagnose both celiac disease and Non-Celiac gluten intolerance early before any serious damage to the intestine occurs. However, both can be difficult to diagnose because their symptoms are easily confused with other intestinal disorders, such as irritable bowel syndrome or lactose intolerance, thus many people may never discover that they have some level of gluten sensitivity.
Some common general symptoms of celiac disease are diarrhea, abdominal pain and bloating, and weight loss. People with the disease may feel overly tired, and they may also be irritable or depressed. Some have skin rashes and mouth sores. Teens with undiagnosed celiac disease may go through puberty late.
Symptoms of Celiac Disease can vary greatly from individual to individual, and even among family members. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.
Obviously, since so much growth and development crucial to human well being takes place in infancy and childhood, and since so much of that development hinges on proper nutritional absorption, any condition which hinders absorption is especially important diagnose and treat in the earliest possible stages.
• behavioral changes
• bone or joint pain
• chronic diarrhea
• delayed growth
• failure to thrive in infants
• infertility, recurrent miscarriage
• itchy skin rash called dermatitis herpetiformis
• missed menstrual periods (often because of excessive weight loss)
• muscle cramps
• osteoporosis, osteopenia
• pale, foul-smelling, or fatty stool
• pale sores inside the mouth, called aphthous
• recurring abdominal bloating and pain
• tingling numbness in the legs (from nerve damage)
• tooth discoloration or loss of enamel
• unexplained anemia (a low count of red blood cells causing fatigue)
• weight loss / weight gain
A simple blood test can reveal high levels of anti-gliadin, anti-endomysium and anti-tissue transglutaminase antibodies, and is often used for initial detection among people who are most likely to have the disease, and who may need further testing.
For anyone with a family history of celiac disease or of disorders such as thyroid disease, anemia of unknown cause, type I diabetes or other immune disorders or Downs syndrome, doctors may suggest routine screening. Otherwise, patients are generally screened on a case-by-case basis according to individual symptoms.
If a blood test for gluten antibodies is positive, your doctor will likely order a biopsy to confirm a diagnosis of celiac disease. A biopsy is where your doctor microscopically examines a small sample of intestinal tissue, looking for celiac associated damage to the small intestine.
To get the sample, your doctor inserts an endoscope (a thin, flexible tube) into your mouth, down your esophagus and into your stomach and small intestine to take a small sample of intestinal tissue to look for damage to the villi (the tiny, hair-like projections in the walls the small intestine that absorb vitamins, minerals and other nutrients).
Many people with celiac disease are still screened using antiquated methods. After a positive serology test a patient might be given a biopsy (or not—depending on how high their antibody levels are—again elevated antibodies may mean gluten sensitivity), however, the pathologist who interprets the samples may not use the latest Marsh classification system to make the diagnosis, or they may use it but classify the samples incorrectly, any of which can lead to a missed diagnosis. Most people with gluten intolerance will never get tested at all, and if they do their results often end up in the "inconclusive" or grey area for the reasons discussed above. Consequently this undiagnosed or inconclusive group of people may miss out on discovering the simple and drug-free remedy of a gluten-free diet which will lead to a dramatic recovery for those with symptoms (many people with celiac disease or Non Celiac gluten sensitivity do not have any symptoms).
For those who end up in the grey area of inconclusive test results, an elimination diet may be the only method to determine their problem. Many people discover that they have gluten intolerance only after they eliminate it from their diet. The more symptomatic the patient, the more obvious it will be when they eliminate gluten. For those with little or no symptoms this method may not work. Most elimination diets also exclude other common food allergens for several weeks such as soy, cows milk, corn, nuts, etc., and then the items are slowly added back to the diet while the patient pays close attention to any symptoms.
There is presently no cure for celiac disease or Non Celiac gluten sensitivity, however, totally eliminating gluten from the diet leads to a full recovery in most cases, thus a 100% gluten-free diet is the standard treatment for celiac disease.
To manage the disease and prevent complications, its essential to avoid all foods that contain gluten. People with celiac disease must avoid all foods made with wheat, rye, or barley. Including types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others.
It is also important to avoid oats, at least during initial treatment stages of a gluten-free diet, this is because the effects of oats on celiac patients are not fully understood, and wheat contamination in processing is common. Thus, its safe to eliminate oats at least until symptoms subside and their reintroduction into the diet can be fairly monitored and evaluated. Avoid processed foods that may contain hidden gluten. Wheat flour is commonly used in many processed foods as a thickener or a binder.
The good news is that by avoiding gluten your small intestine can and will begin to heal. Fortunately, the gut can and usually does heal. The majority of celiac disease and gluten intolerant patients who go on a gluten free diet experience a significant reversal of all symptoms and intestinal damage within year, and most begin to feel better within in a few days. In patients with severe damage the healing process may take years, and may require eliminating other offending foods from their diets in addition to gluten.
Because the genetic makeup that leads to gluten intolerance cant be altered, a persons immune system will continue to react to gluten whenever it is ingested and the symptoms and problems will return if a person with celiac disease starts eating gluten again.health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.