In the summer of 2008 when the term “gluten” first entered my realm of awareness, I was enjoying a lifetime of excellent health except for the occasional cold or flu. In the summer of 2009 I was devastated to be diagnosed with a chronic and progressive kidney disease called Focal Segmental Glomerulosclerosis (or simply, FSGS) w/nephrotic syndrome. Like celiac disease, FSGS is an inflammatory disease, enflaming and scarring the glomeruli, or filtering system, of the kidneys. It was also that summer that I discovered that eliminating gluten from my diet put my disease into spontaneous, full remission, an extremely rare occurrence. I am on no medication, and have better health than ever before. Because of my fortune of getting my life back in short order, I want to share my experience with others so that others can be aware that eating gluten free does not only benefit those with celiac disease.
How did I get so lucky to go from health to serious illness back to health in a short period of time?
In the summer of 2008, as is increasingly common, my college dorm mate from 1981-82 and roommate from 1983-84 at Indiana University located me on Facebook, and we began conversing. While we met in the heartland of the US nearly 30 years ago, we found ourselves living on opposite coasts 24 years later. While I had enjoyed excellent health, my friend revealed that, after a lifetime of suffering, she had been diagnosed with celiac disease two years earlier and was eating a gluten free diet. Remembering our pizza and beer days in college and her subsequent belly aches, it all made sense. I had never heard of “gluten” or “celiac disease” but I educated myself after learning of her diagnosis. We grew closer, and have taken several vacations together since then. While with her, out of support, I ate gluten free with her. I also gave up beer altogether that summer, as it’s one thing she said she sorely missed. Little did I know that eating gluten free with her was merely a dress rehearsal for what was to become my lifestyle less than a year later out of a need to save my own life.
My health crashed & burned in the summer of 2009. I didn’t see it coming. I had seemingly sudden and unexplained weight gain caused by edema, hypertension, and high cholesterol. All signs pointed to a kidney problem, so I immediately put myself on a renal diet that happened to be nearly gluten free. A renal biopsy confirmed the diagnosis of FSGS with nephrotic syndrome. While my nephrologist said to me “there’s no cause and therefore idiopathic,” I retorted, “there is a cause, but you just don’t know what it is.” He conceded that I had a point.
I poured over the internet, researching every possible thing I could find about the disease and possible causes. My older sister and my friend did the same. I went to subsequent visits to my nephrologist with 30-45 minutes worth of questions and theories to discuss with him. An open-minded and patient nephrologist, he addressed all of my questions. He was able to rule out several theories and eventually said “the cause of the disease doesn’t matter because the treatment is the same.” Prednisone. I told him the cause of the disease mattered to me because, if I could figure it out, I could treat the cause and not need to take Prednisone. Prednisone, as he said, is not a benign drug and is only effective in a minority of people with FSGS. My research showed me the same discouraging statistics. Most people with the disease eventually progressed to End Stage Renal Disease, requiring dialysis and transplant. Stubbornly I refused to accept this was my future and refused to accept that I couldn’t figure out the cause and a solution.
It was during that time of diagnosis, doing research, checking out theories, going for follow-up tests, that my friend found stories of others with kidney disease who had gone into, and stayed in, remission merely by going on a gluten free diet. She sent me a link to these stories, and I decided instantly to go gluten free, which I did. Because of her bringing my awareness to what this means, and because of my time spent practicing the diet with her, it was an easy decision and an easy transition.
Within five weeks, my tests showed that I was in full, spontaneous remission. It’s important to note that I had already been eating mostly gluten free for three months prior to this full commitment and was already showing vast improvement. It’s important to have a long view when giving this diet a try. My nephrologist called my improvement “remarkable” and “fabulous”. We checked again a month later, and I was even more into the healthy range. Six months later at a follow up visit, my numbers showed healthier than many healthy people without kidney disease. My nephrologist envies my blood pressure and cholesterol. Today I am still in full remission, on no medication, and still gluten free.
While a gluten free diet may help virtually all with celiac disease, it may help only some with chronic kidney disease and other medical conditions. It is not widely known, even by nephrologists, and it is not widely studied. Through word-of-mouth, I have been encouraging others with kidney disease to try this very safe diet, and I am aware of two children and two adults with kidney disease who have gone into remission as a result. Others did not see any improvement or saw unexpected improvements such as weight loss, arthritic pain gone, and insomnia cured.
I send these updates from others to my nephrologist, and he said he is suggesting to others to try a gluten free diet.
I encourage others with renal disease to try a 100% gluten free diet for months or even a couple years in the event that it helps restore health to normal levels. Once you develop new habits and you figure out where to buy the foods you like, it’s easy to do. The diet is very healthy; we don’t need gluten to live. The diet won’t hurt, and it may help save lives. It saved mine.
Author Information: Denise Stevens
“After being diagnosed with a progressive kidney disease, Denise went into spontaneous, full remission on a gluten free diet. Her goal is to spread the word so that others may benefit by trying the same. She likes to say eating gluten free isn’t just for celiac disease anymore.”