Celiac Disease is an autoimmune disorder that affects nearly one in every hundred people in the United States. Many people, 97%, remain undiagnosed and untreated. These people may consult doctors who prescribe drugs, diets or therapies for some of the symptoms that may work for a while. In the US today, the average length of time a person has Celiac Disease before it is diagnosed is nine years. Most people are diagnosed in their 40’s through ’60s.
Celiac Disease is a reaction to gluten in food. Gluten is in all wheat foods and many other grains as well. In addition, gluten is present in manly food additives. Also grains that do not have gluten may be contaminated by being grown close to wheat. Other foods may be contaminated by being processed by equipment that is used in processing gluten-containing grain or on surfaces and utensils at home or in restaurants.
People with celiac vary between having strong symptoms or none at all. The most common symptoms experienced are: gastrointestinal, such as bloating, cramping, stomach pain, and diarrhea; fatigue, irritability, headaches, joint pain, anemia, weak bones, and itchy skin. Severe symptoms can be vitamin deficiencies and “failure to thrive”. Symptoms can come and go. Flare ups can occur and then subside.
If left undiagnosed and untreated, people with celiac can develop bone loss, resulting in osteoarthritis, malignancies, peripheral neuropathies (numb or tingling hands or feet), tooth enamel defects, underactive spleen, and infertility.
People with celiac are more likely to develop another autoimmune disease, such as Sjogen syndrome, Type 1 diabetes, thyroid disease, dermatitis (intensely itchy skin) or alopecia areata (hair loss).
A common myth is that a person with celiac as a child outgrows it as they mature. They may outgrow the symptoms or develop other symptoms that are diagnosed as other conditions. Celiac is a lifelong illness.
Celiac Disease can vary from severe to classic to mild to asymptomatic or “silent”. People with the usual symptoms involving gastrointestinal problems likely have inflammation and flat or atrophied villa in the intestive or upper part of the GI tract. This may result in malabsorption of a single nutrient such as iron or calcium, which can lead to anemia, osteopenia or osteoporosis. Some people with “silent” celiac have very mild symptoms that they ignore for years, recognizing them only after diagnosis.
Four main categories of symptoms and complications exist. They are intestinal problems, malabsorption problems, inflammatory reactions and autoimmune disease, and malignancies.
Two methods are used to diagnose Celiac Disease:
- Blood tests for four different antibodies. The antibodies are IgA endomysial antibodies (EMA), IgA tissue tranglutaminase (tTG), IgG tissue transglutaminase, and total IgA antibodies.These tests are very specific and sensitive, which means that there are few false positives (false positive: the test says yes but you don’t have the disease) and few false negatives (the test says no but you have the disease).The advantage of the blood tests is they are easy to use and noninvasive. They are often done first to see if there is a need for a a biopsy.
- Endoscopy and intestinal biopsy provide the most definitive diagnosis, but it is more complicated, takes more preparation and an anesthetic, an is uncomfortable. Before the procedure is done, the patient fasts for eight hours. Then an IV is put in for sedation and a local anesthetic spray is used to control the gag reflux. The procedure takes 10 to 20 minutes. During the procedure the doctor views the larynx, the esophagus, the stomach and the duodenum and takes a biopsy of the intestine. The procedure is uncomfortable but it is painless because the lining of the intestive has no pain fibers.A positive biopsy is considered the gold standart for diagnosing Celiac Disease. It is more conclusive than a positive antibody test. People worry about subjecting themselves or their children to this invasive procedure, but it results in a certain diagnosis.
- Other possible tests are gluten challenge, blood dot test, fecal test, saliva test and breath test, but these are not as conclusive as an antibody test and a biopsy.
It is important to get a solid diagnosis because treatment for people with Celiac Disease is a strict diet of avoiding all foods with gluten or gluten contamination for the rest of their lives. People who are unsure of their diagnosis will have a hard time following such a stringent regimen. If there is any question about the diagnosis and the diet isn’t maintained, Celiac Disease can lead to serious health complications.