Denise Stevens

A Gluten Free Diet Helped My Kidney Disease Go Into Full Remission

by Denise Stevens on July 27th, 2010


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."


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27 Responses to “A Gluten Free Diet Helped My Kidney Disease Go Into Full Remission”

  1. Tammy says:

    Hi Denise, thanks for the encouraging message! My son has had MCNS for almost 5 years now and he is 6 years old right now. I read your article about a month ago and started a gluten free diet for my son right away. I’m hoping you can answer a question for me, did your protein levels go up and down for a long time before they became in the normal range consistently? Because my son’s levels are all over the place, so I just wondered if this also happened to you. Thanks again!

  2. Denise, thank you for this site, it is an eye-opener. I am Celiac plus vegan who has made great strides in the past year and eight months. Two days ago I found out about kidney disease while visiting with my doctor who happens to be a very good friend. He will not prescribe any medications, GREAT! Since becoming gluten free my life has been changed quite dramatically. The blood pressure has come down since almost eliminating sodium entirely (am salt sensitive). The GFR is 44, not really bad but not really good. I will continue on the gluten free diet because it has helped. Today I completely got rid of all the foods that are bad for people with nephropathy (kidney disease). Also cooked a delicious rice dish that was quite tasty. Again thank you for your site.

  3. Louise says:

    I have 89 g filtration rate,so it’s stage 2 kidney disease- hi phosphorus,potassium,lo sodium -restless legs when I eat any type o grains-which I saw on medscape,is sign o serious kidney dis-easy to eat non gluten-just small potatoes with skin on- I start day with drink o lettuce,celery, n walnuts,few,- this keeps electrolytes n so,acidity down- sweets intolerance causes severe migraines,vomit,lo BP – from the high lactic acidosis,ESP from fructose intolerance,as there is alcoholism,liver disease thru 7generations back-charities school meal programs cause torture, n deaths in children-I was diag childhood rheumatic attacks,tonsillitis n removed-blood transfusions at 16months n need to have lower lymph gland drained-I am not a bird,no gizzard,so I can’t digest any grains,-I,am not a tiger,so I cannot fully digest other animals ,or,their bodily products,milk too high sugar,n -eggs is too high protein,it stays half digested so,toxic nitrites poison my brain,causing extreme lo BP,like nitroglycerin-I am a primate monkey type-n I just love my crunchy leaves all day long,including,so PLANT TREES 4 LINDEN LEAVES,SLIPPERY ELM,MULBERRY , BAMBOO,N,CATTAIL SHOOTS -no sweet roots,or fruits-they cause liver metabolic acidosis,from unprocessed sugars n starch-yummy leaves all day long-sweet breth upon rising – muscle strength coming back -see dr Kirchner book 4dying patients remission,including children ,and so called germ infections-all I need is sun to be happy-

  4. Traci says:

    Hi Denise,

    I am very interested to get more information on your Gluten-Free Diet lifestyle. I started and organization for kidney disease awareness and i believe the information that you have found may be a huge asset to the renal community. would you please email your contact information to us from the website so that I can get more information. I appreciate it. http://www.thecpbproject.org.

  5. Beverly Wynn says:

    I too have been diagnosised with FSGS but, refuse to accept this diagnosis. When people ask me what my diagnosis is I reply it’s unknown. I strongly believe that the words you put out into the universe stick. That being said, I have been an emotional wreck since the diagnosis–I think it’s the meds. I am taking predinsone and look absolutely ridiculous but, feel great. I have felt so alone and under encouraged through all of this. I just had labs done this week and will know in a couple of days if there has been any change in my protien level. I have been eating healthy for the last 12 years and exercising regularly for the last 20 years so I have no idea how this disease came about. I am sooo happy that I came across this site tonight. I refuse to listen to the doctors tell me that I may go into ESRD. I tried a gluten free diet a few years ago but, as of tomorrow, I will be trying it again and sticking too it. I will post again in a few months to update.

  6. Stephanie says:

    When I eat gluten it makes my kidneys hurt really bad, especially my left one. It also gives me a migraine. I get very ill if I eat it, particularly frequently.

  7. Ricardo Farid Mufdi Mufdi says:

    Thanks for sharing your story. I’m dealing with high blood pressure, high cholesterol and have only one kidney functioning and has decrease function to 50. About 4 years ago I did start a gluten free diet and my cholesterol went from 245 to 197 in about 2 months, my blood pressure was controled with a pill a day. Now I’m starting the gluten diet again because of my symptoms, hopefully I can get back on track. I don’t want to lose the only kidney I have and live the rest of my life on dyalisis. I’m still taking some pills like Neurontin, Aciphex, Atenolol, Amlodipine Besylate, Xanax, which I believe are damaging my only kidney. I’m trying to stop taking them, but just restarted the gluten free diet. I hope little by little I’ll be able to discontinue using them.
    Thanks again por your story,
    best regards,
    Ricardo Farid Mufdi Mufdi,
    Miami, Florida

  8. Vero says:

    I too have Lupus nephritis Class IV, with a kidney function of 10% and currently on dyalisis for 3 months. I was living in Tx when they told me that I needed the dyalisis and I moved to Ca where I felt much better. I was doing this diet but without knowing anything about GLUTEN, but because of the phosphorous and the potassium, which coincidently are also in the lacteous and the whole grains. Since I was doing better, I asked my renal doctor that if I continuing like this, was there a chance to reverse my kidney condition, and she said no. She said that THE KIDNEY IS AN ORGAN THAT ONCE IS SICK, IT WILL ALWAYS BE SICK. The disease can be controlled, but not reversed, unlike some heart or lung diseases. She said that the medication I was taking was just to slowdown the damage of my kidney and the diet was just to avoid the disconfort I would feel (such as nausea, vomiting, high blood preassure) in case my levels of potassium and phosphorous were high. I don’t think we (renal patients) would benefit about a free gluten diet as such, but we would benefit because we would also lower the phosphorous and potassium levels.
    I’m happy for you that you are doing well.

  9. Haylee says:

    Hello Denise,
    I am intrigued by your story! My husband went to the dentist 6 weeks ago for his regular 6 month appointment. They took his blood pressure which they had never done prior and it was very high. He then went to his regular physician and found that he had protein and blood in his urine. After multiple tests and most recently a kidney biopsy, we found out his kidney’s are operating at 30%. They said it is idiopathic but symptomatic of IgA Nephropathy. We are starting a renal diet and a gluten free diet. Your testimony is encouraging and I’d love more information from you in regards to the renal diet and gluten free. Do you have a source of recipes that follows both? When looking only at gluten free items I see they are high in sodium. Please share any insights you have that might help us to the same road of success that you have expreienced.
    Thanks!
    Haylee

  10. Lori says:

    Thanks so much for this article. You are letting me know I am on the right track. Most of my life I have been healthy with no issues. I am now in my 60′s and have had a few gout attacks. I was sent to a kidney doctor who said I had stage three kidney failure and he put me on allapurinol. Gout has not come back and I go about my life. About a year later I start getting these rashes. I go to the dermatoligist. They give me steroids and it goes away but then keeps returning. I made no connection with this and the alla purinol. Thinking the rash was poison ivy at first. Anyway I started researching rashes and come across dermititis herpeformitus, and they say if you have this rash you have Celiac disease. I experiment with gluten free and am amazed with how much better I feel and the rash is disappearing after just three days of a gluten free diet. You have given me hope. Now it is time to go back to the kidney doctor. I am so much more hopeful due to your article. Doctors seem to reach for medication, I thought these were all separate issues, now I know it is all related. Thanks for your insight!

  11. Manuel says:

    My GFR numbers had started to drop and my doctor recommended hydration;

    I tried it but little (if any) improvement; Drank a lot of water and no help!

    I read several articles about gluten and kidney related problems so I have been on gluten free diet and my GFR numbers have climbed up;

    It is very hard to go gluten free since too many products have gluten or hidden gluten. even Kellogs corn flakes have gluten.

    I did not experienc CELIAC, only symptoms, low GRF numbers;

    I am craving a good PIZZA!!!!!

  12. Denise Stevens says:

    Hi all, eating 100% gluten free is something that helps some people with a variety of medical conditions. The stories I read of how people’s conditions have improved dramatically continues to grow. Just yesterday I read of a 7-year-old girl with Minimal Change Disease and Nephrotic Syndrome who has been in remission for 5 months after starting a gluten free diet.

    Science often takes much longer to catch up to what people learn on their own. I am confident through reading many people’s stories, that by eliminating gluten from their diet, the dramatic improvement in their health tells a story that science has not yet been able to verify across a number of medical conditions. Celiac Disease is an exception. This is an emerging area in science, and barely emerging. Future generations may eventually benefit from scientific testing, and now we are largely left to giving it a try on our own, and spreading the word from person to person. It is not a cure-all for all people and all conditions. I read about more and more people with kidney disease have gone into remission, and others are not helped with eliminating gluten.

    This experience is not to be confused with the explosion in the gluten free fad diet phenomenon that continues to grow in the US. There are people that have an impression that if they eat gluten free brownies, that they are more likely to lose weight than by eating brownies with gluten, for example. Fads come and fads go and eventually, this too shall pass. And when the fad fades, I will still be eating gluten free because it keeps my kidney disease in remission.

    I am not in the medical profession and am therefore not able to give any advice beyond encouraging you all to try the diet for a period of time, several months at minimum to see if you notice improvement. It is a safe diet and, after some adjustment, easy to follow. I travel all over the world for work and I find it amazingly easy to eat gluten free whereever I go.

    While eliminating gluten from my diet helped my more immediate life threatening medical condition, after more than two years of eating this way, I have also noticed other improvements such as my blood pressure is lower (around 108/70), my bad cholesterol is low and good cholesterol is higher, and I have not caught a common cold in over two years. I am not a health nut or a germaphobe. I’m just an average person. I don’t get enough exercise, and occasionally I eat too much sugar or drink too much alcohol. However, I am very disciplined about avoiding gluten 100% because I know from personal experience that this is what keeps me healthy and keeps me off medication.

    I wish you all the best in health and can only say try a 100% gluten free diet. It won’t hurt you, and it might help.

    Thanks,

    Denise

  13. sarah v says:

    Hello,this is to anyone with primary fsgs…My son is 16 and diagnosed in March of 2011 and has 4+ protein in his urine and 89%function it has dropped in six months time to 72% function . Could gluten free work for him? I need any advice possible! my email is vinsongantt@hotmail.com

    • John Libonati John Libonati says:

      Sarah, have your son checked for celiac disease/gluten sensitivity before attempting the gluten-free diet. This is important so his doctor believes you and in case gluten is causing other issues you may not be connecting as such. You will find a description of the tests in the Diagnosis and Testing section in the Departments section located in the left sidebar. BTW, if the tests come back “negative” try the diet anyway. They are getting better but still miss people.

  14. Rachel says:

    I was diagnosed with FSGS last year. I came across this website a few months ago and have decided to go completely gluten free. Everyone here has said they would come back and update – I don’t see any updates! Did it help anyone else? Denise, yours is the only published story I see on the net…all I see is comments to yours. Do you have any other stories that I could read of this helping people? Feel free to e-mail me. Like you said…we have nothing to lose right! :) Thanks!

  15. Rachel says:

    Hi Denise,

    Can you please contact me? I would love to find out more about the GF diet. I have IgA Nephropathy and have been reading about a low-antigen diet and IgA.

    Thanks!

    Rachel

  16. Yisroel says:

    Hi. I am very encouraged by your article, which I just “happened” to reach after a search on the internet. I hope you continue to do well. I have LCDD (Light Chain Deposition Disease) which is a blood lymphoma that causes excess of light chain proteins in my blood. They are small enough to get into my kidneys and clog them. My treatment started with a steroid (demexasone), which was unable to stem the increased production of light chains. It was followed by “light chemo” of velcade, which managed to reduce the amount of light chains 98%. Therefore, recently I was taken off chemo. Even though my hematologists-oncologists felt that there was some hope of my kidneys being revived, my nephrologist has said several times that she feels that they cannot. Kidney transplant does not seem to be a good option (see Jennie’s comments. The oncologists seem to think that there is good chance of the same happening to me.) I did have some improvement in GFR and am therefore holding (for about half year) at the low end of stage 4 kidney disease. However, it seems that I am at risk for dialysis. Now I have been looking into alternative therapies. Do you or your nephrologist have any idea if LCDD would be helped by gluten? In any event, your article and the accompanying comments have encouraged me to try! Thank you for your sharing. Hope to hear more good news! Be WELL!!!

  17. Nooshi says:

    Hello Denise!
    I happened to come across your article today, and I am simply amazed! I was diagnosed with FSGS when I was 20. Now I am 30 years old and unexpectedly pregnant! My husband and I are rather nervous about what this might do to my kidneys, and of course how it will affect the pregnancy and our baby. I have never heard of the link between gluten and kidney disease, but I THANK YOU so much for sharing your experience. I am going to begin a gluten-free regimen as soon as possible. Although I am not sure what is left for me to eat…I am already a vegan. Thank you again, and best wishes to you!

  18. ELLEN GAFFNEY says:

    04/06/2011

    Hi all my name is Ellen Gaffney I am a Celiac patient with the help of John Libonati and Karen Dalyrmple from the Philadelphia Celiac Support Group I have learned alot. I am a type 1 diabetic. I am telling all this to you just to give you a little back ground. My father passed away in l985 of Kidney disease. He was only 61 years old. They said that the type of Kidney disease he had that he could not have a transplant that his own antibodies were attacking his kidneys. They said that if they transplanted that the same thing would happen to his kidneys.
    When I was diagnosed as a Celiac a few years ago and after everything I could get my hands on about Celiac disease I started to think I wonder if my Dad had Celiac disease. I had a Gene test and I had both the genes for Celiac disease which means that one gene came from my father and one gene came from my mother.
    I also have cousins on my Dad’s side that have Celiac disease. My dad’s sister’s child was born with it and her children all have it she had 7 children and their grandchildren have it. Getting back to my point I also thought my Dad had it and a couple of weeks ago I was at a Celiac support meeting and Dr. Dimorino was our guest speaker from Jefferson hospital. He gave a great talk on Celiac disease and he stated that undiagnosed Celiac disease will make it that eventually your own antibodies will start attacking your organs like your Kidneys and your Liver . Then I knew I was right. It is a shame for my Dad but this is helpful for other patients
    that are in the same boat. Also if you are or if you know someone that is a type one diabetic they should be tested for Celiac Disease. Type 1 diabetes is the same gene for Celiac Disease. it is the DQ2 gene and Celiac disease lays in the same area as Type 1 diabetes so they are kind of interwined together this is why if you have type 1 diabetes you have a greater chance of getting Celiac disease

    Thank you

    Ellen Gaffney
    thegcats@verizon.net

  19. Jennie says:

    I had a kidney transplant 5 years ago after 18 years of chronic kidney failure from an autoimmune disorder. My kidney transplant was a huge success, with my new kidney working as well as two healthy kidneys. Then, out of nowhere, it started to fail. No one could figure it out. The doctor’s answer was, “it can happen to anyone at any time.” I went through months and months of tests, but no one could find anything wrong with me. I started complaining about an upset stomach and cramping in my abdomen. The doctor told me to take Immodium. It didn’t help. I asked my doctor point blank, “do you think changing my diet would help?” and he said that it wouldn’t, and that I would need another transplant in 3-5 years. Of course, I started doing my own research, and I decided to try being gluten-free. After just one day, I felt amazing. It’s been 3 weeks, now, and I’m really hoping to see some improvement at my next appointment. I’ll keep you posted.

    • John Libonati John Libonati says:

      Thanks for your story, Jennie! You are an inspiration. Please, definitely keep us posted on your progress.

      Good luck and be well!

      -John

  20. Denise Stevens says:

    Hi Sarah and Morgan,

    How are you two doing? I did not see your posts until now (sorry about that Sarah, I don’t know how I missed you). So glad to hear that I have been able to offer some hope and inspiration to others suffering with chronic kidney disease. While I pop in and out of these forums (time flies!), I’m encouraged to see how the word is spreading and that some, not all, adults & children with kidney disease are going into remission on a gluten free diet. I am grateful that this website invited me to share my story and that you have found your way here. Regarding how to get started — it’s studying websites such as this wonderful website and others such as http://celiac.com. Go from there. Carve out new eating habits. Once your new eating habits are established, it’s easy to do.

    Let me know how you are doing! All the best to you!

    Denise

  21. Morgan says:

    Denise, Thank you so much, I don’t know if this post is too old for this to reach you but you have truly given me hope. I see you on a lot of pages I have searched and your commitment to spreading the word about GF and FSGS is soooo appreciated. I was diagnosed out of the blue by biopsy 5 years ago when I was 6 weeks pregnant with my son, proteinuria at its worst shot up to 17 grams and at its best was 4, thanks to my amazing Nephrologist I was able to carry to full term AND was able to have another child 3 years later!. but still struggle with the effects of the FSGS on my body and which sometimes was worse, the cyclosporin. I’m in a clinical remission (but thats on a high dose of CsA still) My doctors have always been puzzled by my case and why pregnancy brought this disease out in me, so much so that they use my case in teaching other nephrologists. I feel like a fool for not searching for different answers sooner…I have been GF for 3 weeks now after reading your posts and feel great! I go in for more tests in 2 weeks and even if nothing changes I FEEL better and that means the world to me,I can play with my children longer!, I’m happier and well just Thanks!

  22. sarah says:

    Denise,

    Thank you so much for sharing your story! I am 32 years old and was recently diagnosed with MCD about 5 months ago. I was on 80mg of prednisone for 4 months which was not working and making me crazy. I am now weaning that down to 20mg and taking 300mg of cyclosporine. I am very interested in going gluten free but don’t know much about it. Any tips or suggestions you have for getting started would be great! One of the most frustrating things about this disease is that I can’t find many people who have it and can understand what I am going through! I would love to talk with you if you have the time!

  23. Denise Stevens says:

    Hi Allen, I’m very sorry to hear about your son with FSGS and NS. Many people with this disease are suffering a lot. As I’m sure you know, success rates vary wildly with this disease, even with medication. I can only suggest your son try a gluten free diet for at least 6 months — preferably longer. Eliminating gluten 100% from his diet won’t hurt him and it may help. The only way to find out is to try. Your son has nothing to lose and everything to gain. I don’t claim to be any kind of expert in this area. I can only share my personal experience and tell you that others with various kidney diseases such as FSGS, NS, MCD, IgA Nephropathy have gone into remission on a gluten free diet based on their personal stories that I’ve read. It’s not a solution for everyone, but for some it appears to be. I wish your son all the best of everything for a healthy future.

  24. Allen Yip says:

    Denise,
    Hope i can share more of your path to recovery.
    My son(16 years) have been diagnosed with NS later FSGS for 8 years.
    Your article does come as a glimmer of hope that there may be other ways to fight this disease.Hope you can contact me.thanks for reading

  25. Yvonne Yaar says:

    I’m Denise’s College roomie and BFF :) Life is such an adventure- I truly believe we crossed paths again so I could help her. I lived through this tumultuous time with her- the diagnosis and the subsequent testing, the months of sitting on pins and needles, I am so THRILLED and AMAZED that the elimination gluten was the answer. Thanks for the well written article Denise- YOU ROCK!

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