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Celiac Disease

Imagine not being able to eat some of your favorite foods such as pasta, or baked goods, or bread. Imagine having to go the rest of your life without being able to eat or drink anything that contains gluten, a substance found in wheat, rye, malt, and barley. For the at least three million people who suffer from celiac disease, there is no choice(“Celiac Disease Facts”). They cannot eat or drink it or they risk getting several types of cancer and any one of a number of other medical problems.

The Celiac Disease Foundation defines Celiac Disease as such:

Celiac disease (CD) is a lifelong digestive disorder affecting children and adults. When people with CD eat foods that contain gluten, it creates an immune-medicated toxic reaction that causes damage to the small intestine and does not allow food to be properly absorbed. Even small amounts of gluten in foods can affect those with CD and cause health problems. Damage can occur to the small bowel even when there are no symptoms present (“About”).

While it is a fairly common disease, CD is a disease that is very difficult to diagnose. Of the over three million people it affects, 97% of them are undiagnosed. Testing for CD can be difficult, yet simple at the same time. People with CD carry a higher than normal levels of certain antibodies. These are special proteins that are part of one’s immune system and work to get rid of foreign substances in one’s body. For people with CD, their body may be recognizing gluten as a foreign substance, thus causing their body to produce elevated levels of antibodies to get rid of it. A blood test can detect these high levels of antibodies, and is used to initially detect people who are likely to have the disease. However just a blood test is not enough to completely diagnose CD. A doctor should need to microscopically examine a small portion of your intestinal tissue to check for damage to the villi (nutrient absorbers). This is usually done by inserting a flexible tube (endoscope) though one’s mouth, esophagus, and stomach and into the small intestine. A sample is then taken and examined (“Celiac Disease Tests”).

My girlfriend, Kelsey Aho, has CD. It was just diagnosed in her only almost a year ago. It was a long process to diagnose it however. It started her senior year of high school when she was trying out for the school volleyball team. She was running and feeling a lot tired than she normally would for that amount of running. Her coach noticed it too and told her to go get checked out at the doctor. The doctor didn’t think there was anything wrong, but took a blood test anyway. When the results of that test came back, they showed that Kelsey’s iron count was really low. So thinking she was just anemic (having low blood iron), the doctor just prescribed some iron pills and told her to check back in with her in a few weeks. When Kelsey went back to the doctor, the pills had done nothing to her iron count, so the doctor prescribed double the dosage and told her to try that then stop back in. Even after those pills, Kelsey’s iron count was way below average. At this point, the doctor sent her to a specialist, a pediatric Hematologist. This doctor performed several more tests but could not accurately diagnose the problem and referred Kelsey to a pediatric gastroenterologist. This doctor looked at her charts and told her that the blood tests were a good indicator of celiac disease but that the only way to know for sure was a biopsy. So Kelsey had the biopsy and it came back positive for celiac.(Aho)

Here are some other facts about CD:

· One study on celiac disease found that 60% of children and 41% of adults who were diagnosed with CD were asymptomatic, or without symptoms

· In healthy people, 1 in 133 have CD

· In people who with first degree relatives who are celiac, 1 in 22 people also have CD

· Estimated prevalence for African-, Hispanic-, and Asian-Americans: 1 in 236

· Only 35% of newly diagnosed patients had chronic diarrhea, disproving the myth that diarrhea must be present to diagnose CD

· The average time for a symptomatic person to be diagnosed with CD in the US is four years(“Celiac Disease Facts”)

Even though CD is very hard to diagnose there are several symptoms. These symptoms however can vary widely. In some people they may be very mild and go virtually unnoticed, and in others they can be severe and impact daily life. The symptoms of CD, as given by WebMD are such:

· Gas, abdominal swelling, and bloating. These symptoms result from a failure of the small intestine to absorb nutrients from food. You may have mild stomach pain, but it is usually not severe

· Abnormal stools. Diarrhea or bulky, loose (or watery), pale, frothy, and foul-smelling stools often occur. The stools may contain a large amount of fat and may stick to the sides of the toilet bowl, making them hard to flush.

· Weight loss. Adults and children may have unexplained weight loss despite having a normal appetite.

· Fatigue and weakness. Celiac disease can result in a general lack of energy and strength.

· Vomiting. Some people may get sick after eating gluten. Children are more likely to have this reaction than adults.(“Celiac Disease-Symptoms”)

If left undiagnosed and untreated, CD disease may also lead to other problems. These problems include, but are not limited to, osteoporosis, anemia, infertility, delayed onset of puberty, frequent respiratory infections, problems with memory and concentration, and irritability in children or depression in adults.

People with CD have to be very careful to watch what they eat. Even the slightest contamination of gluten can ruin months of progress of righting a persons’ body. However a person should not begin the gluten-free diet before the diagnosis is made because doing so will affect future testing for the disease(“Celiac Disease-Sprue”). While they cannot eat the foods that many other people can, there are more than 2,000 gluten free food items available in the United States. And in 2004, the Food Allergen Labeling and Consumer Protection Act became a law. This allowed people with CD to be able to easily notice whether or not they could eat a certain food. This eliminated the time it took to read the labels of every food wishing to be purchased (“Celiac Disease Facts”).

A lot of time, they can eat the same food as a person without CD, it is just made special without gluten. For example, a person with CD cannot eat the same bread as someone without CD. However there is bread that is made from white or brown rice flours that is safe for a celiac to eat. There are specific gluten free cereals too. A person with CD can drink most drinks. Instant or processed drinks must be evaluated do to the possibility of malt. One drink that a person with CD cannot drink is beer. Beer is made with barley, one of the biggest concerns for a person with CD. They can drink most other alcoholic beverages, however they must still check for malt in the drink(“Gluten-Free”). Even though you may not notice the gluten-free labels on food in the grocery store, there are many out there.

To put the number of people with celiac disease into perspective, The University of Chicago Celiac Disease Center have given out some fun facts:

· 610,000 women in the US experience unexplained infertility; 6% (36,600) of these women might never learn that celiac disease is the cause

· The number of people with celiac disease in the US would fill 4,400 Boeing 747 airplanes

· It would take 936 cruise ships to hold every American with celiac disease

· The number of people with CD in the US is roughly equal to the number of people living in the state of Nevada

· Alaska, Delaware, Washington DC, Hawaii, Idaho, Maine, Montana, Nebraska, New Hampshire, New Mexico, North Dakota, Rhode Island, South Dakota, Utah and Vermont all have populations less than the number of people living with CD in the US(“Celiac Disease Facts”)

For those living with CD there are many options for support and help if wanted. One of the largest help groups is the Celiac Disease Foundation (CDF). On their website you can find almost every fact about CD, information on the diet and lifestyle of a person suffering from CD, you can help others become aware of CD, follow up on news and events concerning CD, and many other options (“About”). They even have a Team Gluten Free, which “is a fundraising arm of the Celiac Disease Foundations, a non-profit, public benefit corporations dedicated to building awareness and a supportive community for patients, families and health care professionals dealing with Celiac Disease.” Team Gluten Free runs races (5K, 10K, half marathon, marathon) and helps to raise support for CD across the country.

While CD is difficult to diagnose and there is no cure for it, once the affected person goes on their diet, they feel much better. My girlfriend had this to say about how she felt once she started her diet:

“I feel like a whole new person since I began my diet. When I was a kid, I thought that constantly feeling sick and having an upset stomach was normal. Once I was diagnosed, I knew that if I didn’t partake in the diet I risked higher chance of cancer and other medical problems. I’ve been gluten-free for almost a year now. I have more energy than I have had in my life. It has been really really hard because I miss eating pasta, and baked goods, especially bread. The main thing that I have realized since being diagnosed is that you can’t be afraid of the change. And it is a major change. I used to never think twice about having bread in the house and to be able to eat it and now I will never know its taste again. It sucks but it’s all for the better in the long run.”(Aho)

CD is more prominent in today’s world than ever before. The process to diagnose it is a usually a very long one, and sometimes isn’t accurately done. At this stage in science there is no cure for CD other than to eat gluten-free and avoid ruining your small intestine. Though for most this isn’t a bad thing. There are over 2,000 gluten-free foods on the market now. And for those who are struggling with the change, there are many support groups such as The Celiac Disease Foundation, Team Gluten Free, The University of Chicago Celiac Disease Center, and many others. While celiac disease is often a sudden change for most, it does not have to be completely life altering. As long as the person with CD takes care of their body and follows the gluten-free diet, they should have a perfectly normal life.