Celiac Disease 1
Amy Summey
Celiac Disease
HS315-01
Final Project Part Two
Professor Fierro
24 July 2012
Celiac Disease 2
For this project I have selected Celiac Disease. It is a health concern in my community that more people need to be educated about. I suffered with many childhood illnesses because my immune system was compromised because I had undiagnosed Celiac disease. I want to educate the community, to help prevent children (and adults) from going through years of agony and incorrect diagnoses. This report will cover my experience with Celiac disease, information regarding diagnosis and treatment, the effect on my community, and possible interventions.
“Celiac disease affects 1% of healthy, average Americans. That means at least 3 million people in our country are living with celiac disease—97% of them are undiagnosed (University of Chicago Celiac Disease Center).”
I was diagnosed with Celiac disease when I was 16 because my mom found an article about it online. Sometimes doctors are useless and it takes a determined patient (or patient’s mother) to figure out the correct diagnosis. I was constantly getting sick but the doctors said it was IBS (irritable bowel syndrome) and when none of the medicines worked, my previous gastroenterologist acted like it was just something I was going to have to put up with. I remember leaving her office in tears feeling so frustrated! A large number of people diagnosed with IBS are actually suffering from Celiac disease.
“Celiac disease can be hard to diagnose because some of its symptoms are like the symptoms of other diseases. People with celiac disease may go undiagnosed and untreated for many years. If your doctor thinks you have celiac disease, you will need a blood test. You must be on your regular diet before the test. If not, the results could be wrong (National Institute of Health, 2011).”
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It is important to understand what Celiac disease is and the role gluten plays in the disease.
“Celiac disease is an immune disease in which people can’t eat gluten because it will damage their small intestine. Gluten is a protein found in wheat, rye, and barley.Other names for celiac disease are celiac sprue and gluten intolerance. When people with celiac disease eat gluten, their body’s immune system reacts to the gluten by attacking the lining of the small intestine. The immune system’s reaction to gluten damages small, fingerlike growths called villi. When the villi are damaged, the body cannot get the nutrients it needs (National Institute of Health, 2011).”
The common gastrointestinal symptoms are upset stomach, gas, bloating and diarrhea. These symptoms are also common of irritable bowel syndrome. There are also many symptoms that are not gastrointestinal.
“Additional non-gastrointestinal symptoms associated with celiac disease, possibly secondary to chronic malnutrition, include dental enamel hypoplasia of the permanent teeth, osteoporosis, short stature, delayed puberty, anemia, folate and vitamin K deficiency, arthralgia, alopecia, infertility, and recurrent spontaneous abortions (Allen, 2004).”
I was always getting sick as child. I also had problems in school. I am only 4’11, most likely because I was not able to absorb the proper nutrients as a child with undiagnosed celiac disease. I remember hating school and throwing temper tantrums every morning to try to avoid
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going to school. That is one reason it is so important that children be screened and diagnosed. Their ability to learn and develop mentally is compromised. I was misdiagnosed with ADD (attention deficit disorder).
“Permanent stunting of growth can occur when the disease presents during childhood. The neurological associated manifestation can have profound impact on school performance and quality of life (Allen, 2004).”
I live in Henrico County, Virginia. I tried to contact the health department but was unsuccessful at getting an actual person on the phone. I did some research on the population of Henrico County.
The estimated population for Henrico County is 310,445 people (United States Census Bureau, 2012). Perhaps if I lived in a smaller town, it would be easier to get someone from the health department on the phone.
There is a local gluten intolerance support group that meets to help people with Celiac disease and gluten intolerance.
“The Gluten Intolerance Group of Richmond is a 501(c)(3) non-profit organization. Our Mission is to support persons with gluten intolerances, celiac disease, dermatitis herpetiformis, and other gluten sensitivities, through consumer and industry services and programs that positively promote healthy lives (G.I.G.).”
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Right now the only effective treatment of Celiac disease is a gluten-free diet. The intestine does naturally repair itself but it is a slow process. Sometimes probiotics are used to help restore the intestinal villi. There is a lot of research being done to try to develop a pill for Celiac disease.
“Several drug treatments for celiac disease are being studied. Researchers are also studying a combination of enzymes—proteins that aid chemical reactions in the body—that might change gluten in ways that prevent it from causing an immune reaction before it enters the small intestine. Scientists are also developing educational materials for standardized medical training to raise awareness among health care providers. The hope is that increased understanding and awareness will lead to earlier diagnosis and treatment of celiac disease (National Institute of Health, 2011).”
Awareness is important in treatment of any disease. This project has inspired me to be more active in spreading awareness in my community. I am going to start a blog on Celiac disease and share it on facebook. It is sad that there are so many people suffering from undiagnosed Celiac disease. I am also going to become more active in the gluten support group.
A community intervention could consist of a gluten awareness week. Members from the support group and anyone who is interested in helping could get together and make t-shirts and fliers explaining Celiac disease and gluten sensitivity. We could also go to the local businesses that sell gluten free products and restaurants that have a gluten-free menu to see if they would like to help out. Whole Foods is a popular business that offers gluten free food. The businesses
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that participate could act as sponsors. The fliers and t-shirts and other promotional materials would have info on celiac disease and also have the logo’s of the businesses that participate.
For a successful intervention I will also make use of national and local Celiac Disease organizations. One organization is the National Celiac Disease Awareness campaign.
“The Awareness Campaign provides fact sheets, booklets, practice tools for health care professionals, NIH research information, and resources from professional and voluntary organizations that focus on celiac disease. Experts who attended an NIH Consensus Development Conference on Celiac Disease in June 2004 determined that increasing physician awareness of the various manifestations of celiac disease and appropriate use of available testing strategies could lead to earlier diagnosis and better outcomes for celiac patients. A national campaign is the vehicle through which to convey these important messages to the health community and the public(National Institute of Health, 2012)”.
In conclusion, awareness needs to be raised both in the residential community and the medical community. After doing all this research I feel prepared to be more than just a patient with Celiac disease. I can now be an active member in my community, striving to raise awareness and promote health.
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Works Cited
Allen, P. (2004). Guidlines for the Diagnosis and Treatment of Celiac Disease in Children. Pediatric Nursing, 473-476.
Celiac Disease Foundation. (1998-2012). Cause of Celiac Disease . Retrieved Jul 18, 2012, from Celiac Disease Awareness:
G.I.G. (n.d.). Gluten Intolerance Group of Richmond. Retrieved July 18, 2012, from Gluten Intolerance Group:
National Institute of Health. (2011, March). What I need to Know about celiac disease. Retrieved July 24, 2012, from National Digestive Diseases ClearingHouse (NDDC):
National Institute of Health. (2012, March 1). Frequently Asked Questions about the Campaign. Retrieved july 24, 2012, from Celiac Disease Awareness Campaign:
Norström, F. L. (2011). Delay to Celiac Disease Diagnosis and its Implications for Health-Related Quality of Life. BMC Gastroenterology, 1-9.
United States Census Bureau. (2012, June 7). State & County QuickFacts. Retrieved July 24, 2012, from United States Census Bureau:
University of Chicago Celiac Disease Center. (n.d.). Celiac Disease Facts and Figures. Retrieved July 24, 2012, from UC Hospitols :