SOURCE: Kirkman Group, Inc.

Kirkman Group, Inc.

June 09, 2015 12:14 ET

What You Need to Know About Celiac Disease From a Kid That has Celiac Disease

By Tanner Hillison; Special Correspondent to Kirkman®

RENO, NV--(Marketwired - June 09, 2015) -

[Editor's note: The author of this article was in the sixth grade when he wrote this report.]

Celiac disease is an autoimmune disorder (white blood cells attack at the body's own healthy tissues) that affects about 1 in 140 people in the U.S and 1 in 250 people worldwide [editor's note: this statistic was current at the time the report was written, that figure has now increased to 1 in 100 people worldwide].

I decided to learn more about celiac because I have celiac disease.

Consequences of untreated celiac disease
While researching about celiac disease I have learned about the severe consequences of the condition if left untreated, which include: cancer, osteoporosis, nerve system disease, pancreatic disease, mental functions, and other serious conditions. Ninety percent of people who have celiac disease go undiagnosed or misdiagnosed because neither they nor their doctors know about it, putting them at risk of all the conditions listed above. My research is to help inform you about this evolving epidemic.

What is celiac disease?
Celiac disease is defined as an autoimmune disorder that causes the immune system to have an abnormal reaction to a substance in certain cereal grains, called gluten. Gluten is the combination of two proteins called glutenin and gliadin. When someone with celiac eats gluten their immune system creates antibodies that damage the villi in the small intestine rather than destroying bacteria and viruses. The villi are an important part of the body located in the small intestine. They absorb nutrients from the digested food into the bloodstream.

When the villi lay flat, as a result of the damage from the antibodies improperly created by the immune system, the body is not able to absorb the nutrients it needs to function properly, causing a variety of symptoms. Damaged villi typically will heal in kids between three to six months, but adults may take up to two years for full recovery.

Celiac disease is a genetic predisposition that 30 percent of all people carry. The genes are called HLA-DQ2 and HLA-DQ8. Ninety-five percent of people with celiac disease have the gene HLA-DQ2, and the other 5 percent have the gene HLA-DQ8. For people who do possess these genes, the disease can be triggered for the first time after surgery, pregnancy, childbirth, viral infection or severe emotional stress.

What are the symptoms of celiac disease?
Celiac disease has more than 300 known symptoms that can vary in each person. While one person might show symptoms of diarrhea and stomach pain, someone else may have joint pain and anemia. Anemia is a deficiency of healthy red blood cells to transport enough oxygen to the tissues, which in turn, can make the person feel tired.

Some people may develop symptoms early on, while others may feel fine far throughout adulthood. Some people might show no signs at all. These differences and variations in symptoms can and have made celiac disease an extremely difficult condition to diagnose. Because of this inconsistency, roughly 90 percent of people with celiac disease go undiagnosed or are misdiagnosed with another disease.

The most common symptoms of celiac disease include:

  • bloating or gas,
  • diarrhea,
  • anemia,
  • constipation,
  • fatigue,
  • joint pain,
  • depression,
  • infertility,
  • discolored teeth,
  • pale mouth sores,
  • itchy skin rash,
  • headaches,
  • tingling/numbness,
  • irritability,
  • projectile vomiting ,
  • thin bones,
  • poor weight gain, and
  • delayed growth.

Delayed growth and poor weight gain are signs of malnutrition. Malnutrition is a serious problem for anyone, but especially kids because they need proper nutrition for their bodies to develop normally.

Some people with celiac disease show no signs or symptoms at all because the non-damaged part of their small intestine is able to absorb enough nutrients to keep the body healthy and properly functional. Although, if you have celiac and your body shows no symptoms, the villi still lays flat as a reaction to gluten, which if left untreated runs the risk of developing cancer, osteoporosis, nerve system disease etc.

How do you diagnose celiac disease?
The gold standard for a celiac diagnosis is an endoscopy with a biopsy of the small intestine and a serological test. In addition, a blood test that confirms the presence of either the HLA-DQ2 or HLA-DQ8 gene can be helpful. These two diagnostic tests have been used for diagnosing celiac and proven most effective. Although, a simple blood test is also available from your doctor to search for celiac disease antibodies.

What is the treatment for celiac disease?
There is only one treatment for celiac disease right now, and that is a gluten free diet. There is no cure. The most common exclusions of the diet include: wheat, barley, and rye. Potential future cures for celiac are being worked on including: enzyme therapy, engineered grains, immunomodulatory strategies, correction of the intestinal barrier defect and pharmaceuticals. Various methods are still in process of development, but currently the only treatment for celiac disease remains a strict gluten free diet.

What's the history of celiac disease?
Studies show that the evolution of celiac disease took place in the Eastern Mediterranean. In Europe the currency of celiac disease is from 0.3 percent to 1.2 percent. These numbers are the same in the U.S. due to the many European immigrants to the U.S. over a period of time from what is now known as the Fertile Crescent. It occurred between eight and twelve thousand years ago, when man began to domesticate plants and animals such as wheat, barley, goat, cattle, and sheep. As humans evolved from hunting and gathering to a more agricultural lifestyle, there were changes in the food supply. Man no longer roamed in search of food, but instead bred what was needed to survive. The crops and animals were chosen for their uses and edibility: more milk, meat, and grains. As they used the wilderness's resources the resources pushed farther away, and the plants and animals shared shelter with the agrarian communities.

We chose crops that our bodies were not designed to digest. Until then, milk was only consumed during infancy. Now milk products are consumed from infancy through adulthood and the digestion requires the enzyme lactase. Similarly to milk, the protein in wheat that is desired for making bread contains amino acids called gliadin and glutenin, which are poorly digested by humans. In this way celiac disease met mankind and began to spread.

Likely, our ancestors suffered stomach aches from a variety of causes since the first days of recorded history. No doubt food intolerance was a cause to their aching, but humans for whatever reason, did not change their eating habits and continued to suffer symptoms.

Medicine back then was unaware of the digestive process and its flaws, but the medicine they did use was well recorded. Greeks, ancient Egyptians, and the Romans all wore medical amulets to cure many conditions. It wasn't until 1888 when a man named Samuel Gee discovered the first treatment breakthrough for celiac disease. He said, "If the patient can be cured at all, it must be by means of diet." This was the first time diet was associated with celiac disease as a treatment.

In the 1940's, Dutch physician Willem Karel Dicke specified the diet for celiac disease excluding certain flours, especially wheat and rye. Dicke learned about the role of bread in the kids' eating habits prior to World War II (there were food shortages during the war). The children's symptoms when bread was reintroduced into their diets after the war supported Dicke's theory and shortly after barley was added to the celiac disease exclusion diet. Dicke's studies helped bring celiac disease from life-threatening to treatable.

My personal story
I was diagnosed with celiac when I was three and a half years-old. I showed severe symptoms including diarrhea, projectile vomiting, anemia, mood swings, extreme fatigue, swollen lymph nodes. I was also below the 5th percentile in both height and weight. All of these symptoms started at the age of 2-years-old.

My parents, Bleu and Ted, reached out to many medical practitioners locally, nationally and internationally. After a significant amount of research by my parents and grandparents, they determined we had two choices available to us. The first choice was to take me to Boston to see a world renowned gastroenterologist from Harvard Massachusetts General Hospital. The other option was to travel to a world-renowned hospital in Bangkok, Thailand. Thailand offered me many practitioners from many disciplines of study including, a pediatric gastroenterologist, immunologist, endocrinologist, naturopath, neurologist, nutritionist, and allergist. All of the doctors we saw were trained in the U.S. at some of the top medical institutions and also spoke English. Boston offered one test (endoscopy and colonoscopy) while Thailand offered a much more comprehensive look at one-third of the cost.

My parents made the decision for my mom and I to travel to Bangkok, Thailand to pursue my diagnosis. When we got there we spent three weeks visiting doctors and taking tests. One of these tests included having an endoscopy and colonoscopy. Prior to taking these tests, my gastroenterologist told me to eat gluten and to take a sample of the by-product. It was important to have gluten in my immune system prior to the endoscopy and colonoscopy for proper results.

The pediatric gastroenterologist told my mom that I would be in the operating room for about 30 minutes. It ended up taking an hour and a half. When the procedure ended, the doctor came out to talk to my mom and told her that the fecal matter was encrusted on the wall of the colon, which was like a colon of an 80-year-old person. He told my mom he was amazed and said he had never seen another patient like this.

After the three weeks of tests, my mom and I returned home with a binder full of information regarding the test results. It was confirmed that I had celiac disease. We brought the results of the tests to my pediatric specialist. He put together a list of nutritional supplements around my gluten-free diet that would allow me to maintain proper health. This meant adjusting how and where we shopped, cooked and ate. We had to make some of our own foods including: bread, pancakes, and granola. We had to read food labels very carefully, and when ordering at restaurants my parents had to go through every ingredient in the food they would order for me. These simple things that many families take for granted was a day to day struggle my parents went through to keep me healthy.

In conclusion: what I think you should know
The most important thing about celiac disease is to know about it. With it affecting about 3 million people just in the U.S.A., it is a concern you should take seriously. Many people helped to control the negative effects of celiac disease by adjusting their diet but if left untreated celiac disease can be very dangerous. It is important that individuals with celiac disease and their families understand the causes, symptoms, diagnosis, treatment and the history of the disease to better manage the disease so that it is not a day-to-day struggle in their lives.

Bower, Sylvia, Celiac Disease: A Guide to Living with Gluten Intolerance. New, York: Demos Medical Publishing, 2007, Book.
Author Unknown, Celiac Disease Symptoms Can Be Elusive. May 7, 2014, National Foundation for Celiac Awareness, Internet.
Green, Peter & Jones, Rory, Celiac Disease: A Hidden Epidemic. New, York: HarperCollins Publishers, 2010, Book.
Keyashian, Kian, M.D., Personal Interview, June 9, 2014
Knigge, Kandace, M.D., Personal Phone Interview, May 6, 2014.

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Contact Information

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    Kulani Mahikoa
    Executive Vice President
    Kirkman Group, Inc.