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Jamie's Story


As a teenager, I developed what I thought was just a sensitivity to greasy foods.  I could link my stomach issues with specific foods like pizza and certain subs and sandwiches.  What I didn’t realize at that time is that I had a rough road ahead of me.

I was a very physically active child and played soccer since I was 4 years old and continued with sports through high school. In 2005, I started to feel lightheaded and more fatigued than usual. I went to my primary care physician and was diagnosed with a mild case of anemia and was put on iron pills for a 3 month period. At that time, there were some abnormal blood results, but I did not know what they meant. My doctor crossed out the abnormal levels and wrote “OK” by them, also telling me I was young so not to worry. I had complete trust in my doctor at that point, so I did not question the abnormal results.

For the next 4 years, I always felt like something was off, and my stomach sensitivity continued. At that point, my life was not negatively impacted enough for me to think anything of it. But in 2009, I took a turn for the worse. I started to gradually lose weight, and started to suffer from extreme fatigue. I had some more blood work done and again was just treated for anemia. I noticed the levels that were abnormal back in 2005 were still off, so I decided to do some online research.

After looking into my blood results, I discovered that the abnormalities had to do with my kidney function. I took it upon myself to make an appointment with a nephrologist. At first glance, the doctor knew something was wrong and ordered blood tests, a kidney ultrasound and a kidney biopsy. In August 2009, at the age of 26, I was diagnosed with FSGS, a type of chronic kidney disease that will eventually lead to complete kidney failure.

For the next 2 years after my diagnosis, I still felt fatigued. I started to lose strength, and I did not have much of an appetite. I know these are also symptoms of kidney disease, which is why I didn’t think anything of the symptoms.

It was in March 2011 when I started feeling sick every time I ate, and my stomach bloated up even after the smallest bite of food. I was also feeling throbbing in my esophagus, bad pain in my right side, and was having lower stomach spasms.  I suffered from such extreme fatigue that I had a very hard time doing normal everyday activities.

It took me missing 3 days of work to finally make an appointment with a gastroenterologist.  My doctor thought I could have IBS, but wanted to check my celiac panel. I thought to myself, “There is no way I have celiac disease!” But to my surprise, the returned test results showed my celiac panel levels were so high, that the numeric level read greater than 100. I also had an upper endoscopy to see how bad the damage was to my intestines.

I was glad to finally have answers as to why I was feeling so sick. I started to wonder, could my kidney disease and celiac disease be related? I don’t fall under any of the categories that put a person at risk for kidney disease. I know having one autoimmune disease can put a person at risk for another, and I truly feel that undiagnosed celiac disease may have caused complications, resulting in kidney damage.

On a positive note, within a few days of starting my gluten-free diet, I noticed a world of difference in my energy level. When I looked in the mirror I saw a different person. I was used to seeing droopy, tired eyes, and I was amazed at what I saw! I had been having symptoms that I had not known were related to celiac disease until my health started to improve. I also had been suffering from some nerve damage and it was such a great feeling when those symptoms started to disappear. It took about 3 months for me to fully feel like normal again.

Unfortunately, my kidney function recently declined and I am now in stage 4 kidney failure, but I don’t feel like I am sick. I do have off days, but I am so grateful that I was diagnosed with celiac disease because my quality of life has improved greatly, and I can feel that I am a much healthier person!

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