Bringing Awareness To Celiac Disease
In the quest to become healthier, eating gluten-free has been deemed a fad diet. However, for some individuals going gluten-free is so much more than a fad. It is a necessary lifestyle because of a severe diagnosis – celiac disease.
Celiac disease, also known as celiac disease, is a serious autoimmune disorder where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect one in 100 people worldwide. Most of which are born with it in their genetic makeup.
However, 2.5 million Americans are undiagnosed and suffer from the disease’s debilitating side effects. This was the case for Kirk Rightmire as well until recently. For the past 10 years, Kirk has been extremely sick without an answer as to why.
He has suffered from depression, insomnia, fatigue, joint pain and chronic gastrointestinal problems. In the past five years, his conditions have worsened and it has led to not only permanent damage in his small intestine but damage to his relationships with family and friends, and even his career.
“It has been very devastating,” Kirk said. “It has alienated me and affected my relationships with family and friends. I was so agitated and irritable from lack of sleep and not feeling well that it pushed some of the people I care the most about away.”
The conditions would not escape Kirk even during the day while at work. His chronic insomnia led to him not being able to perform at work. The worst of his symptoms and conditions peaked in 2014. Kirk began to have terrible blisters and rashes on his knees and elbows. Doctors still could not figure out what was the underlying cause for his skin irritations or the other symptoms.
“I was searching on the Internet and I found this image,” Kirk said. “You could only see the body and it looked just like me. I clicked on it and it said this was a side effect of celiac disease.”
Shortly after, Kirk went to his doctor and requested to be tested for celiac disease. After a simple blood test, Kirk was finally given a diagnosis to his years of chronic illness – celiac disease.
“When I went back to all of my doctors they were all shocked because they didn’t catch it,” Kirk said.
After a few months of trying to eat gluten-free, Kirk still struggled to stay well even with knowing his diagnosis. Little did he know, there was much more to eating gluten-free. Over the summer, Kirk’s wife found an autoimmune disorder specialist, who also specialized in celiac disease.
“It took three months to get in to see him,” Kirk said. “When I got in he helped me understand how to deal with the disease. It has really changed my life since going to see the specialists.”
The specialist and in house nutritionist revealed to Kirk just because he would eat something claiming to be gluten free did not mean it actually was. They explained some brands make their gluten-free products with the same equipment used to make non gluten-free products, causing a cross-contamination situation. The same thing he said happens at restaurants in preparing gluten-free food and dishes.
Additionally, the specialists was able to further clarify Kirk’s diagnosis with diagnosing him as refractory celiac, which means Kirk’s body has been fighting the gluten in is diet for so long that it now attacks everything as if it was gluten. His body will eventually heal over time; the longer he maintains a gluten-free lifestyle.
After a month of having a better understanding of his disease, Kirk has committed to sharing his story through starting an awareness campaign for celiac disease called Understand Celiac. He doesn’t want others to suffer and go through the decade long struggle of endless doctor visits with no answers.
“The most important thing is you have to first know you have it,” Kirk said. “That is why I want to share my story. There are a lot of people out there suffering just like me who could never know what they have.”
Kirk is in the beginning stages of starting the awareness campaign. He hopes to take his background in promotions and special events to spreading awareness about celiac disease. For more information about the awareness campaign, visit understandceliac.org.
“The disease can affect ones life to the point where it can destroy marriages, cause unemployment and damage relationships,” Kirk said. “I want to enlighten those dealing with these symptoms to be tested so they can be on the road to recovery.”
Kirk himself is on the road to recovery and is thankful God has provided an answer to his sickness. He admitted the condition even impacted his faith but now it is stronger than ever. He believes God provided answers in His timing.
“I really believe God sent me the specialist,” Kirk said. “Once I submitted to him that I couldn’t be healed without him, it turned things around.”
To help Kirk on his path to recovery and bring awareness to the community, visit gofundme.com/kirk-rightmire-medical-journey.