The Kyle MacFarlane Foundation

Funding research and awareness in the field of neurogastroenterology and motility

Jensen’s Journey, Coping With Celiac

In 2010 after countless trips to my pediatrician and no signs of growth for three years, my doctor decided to send me to an endocrinologist. I was a healthy active boy with no signs or symptoms of any major problems or diseases, aside from my lack of growth. My endocrinologist, after studying my blood tests and realizing nothing abnormal, she decided to request a Celiac panel lab test. I was tested positive for Celiac with extremely high levels of antigens.

Normal non-celiac patients levels would be at zero, my levels were at 131. She then sent me to a Gastroenterologist, or G.I. specialist, where he performed an endoscopic procedure to confirm I did indeed have Celiac. Ever since January 20, 2013, I have been on a strict gluten-free diet. The difficulties of having Celiac as a child include; not beeing able to eat things like pizza and cake at birthday parties, or eating burgers at a fast food restaurant with the family. Thanks to In-N-Out for having protein style burgers!

Celiac is not all about bread. Many seasonings put on meats and soups also have some kinds of barley or malt flavoring all contain traces of wheat. My mom has seen posts on various social networking sites about parents allowing their children to have cheat days.

My amazing mom has researched what cheat days can do to the body. She heard that every cheat day is doing damaging things. I personally think a cheat day can also be because parents do not want to pay more money for food to pay for one person. Eating gluten free is not easy and also not cheap. Small loaves of bread can be anywhere from $5.00 to $7.00. Noodles are $5.95. A large percentage of the gluten-free food selection is $5.00 or over. Finding gluten free food brands is a challenge. Because this is a commonly growing disease, one in every 133 people that we know of has Celiac.Because of the growing number of Celiac patients, gluten-free products have become more accessible.Unfortunately, the cost has remained at an extremely high price.

In March of 2014 approximately a year after I was diagnosed with Celiac, my endocrinologist said it was time put me on a growth hormone because I had not grown after going gluten free for a year. My levels were good but no growth. The doctors predicted that a gluten free diet would stimulate growth, but for me, it did not. As of June 10, 2014, after being on the growth hormone for three months, I have grown a little over two inches. I am extremely excited to know I am growing. This disease is real. Had it not been detected, my intestines would be damaged beyond repair, and could have resulted in lymphatic cancer — which leads to death.

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