New to kidney problems

Hi. I have posted once before, but I still have some questions.

Came across my kidney numbers being off during my yearly blood work. After three tests to confirm ~ my GFR is 50.

Other than watching my caffeine, increasing my water intake and watching my salt, they haven't said much to me. Just we will test you again in 6 weeks to see where you are.

Is there anything else I should know, or should/shouldn't be doing, to try to keep these numbers from decreasing?

Thank You

22 Replies

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  • Hi - I'm currently at 50 also. When I first saw mine and subsequent numbers they were 47, 50, 58, 50. My dr hasn't talked to me about them except to "drink more water". I've been dwelling and obsessing about this and driving myself crazy. There's nothing really to do about it except keep eating healthy and getting exercise. What is your age?

  • I am 47. I am driving myself crazy trying to change my diet completely, trying to determine if the means I have kidney disease, since she hasn't used those words, or if I should act like nothing is wrong. :(

    Thanks for the response.

  • That is the main advice they give it doesn't necessarily have to be water keep a healthy weight & eat healthy keeping a good BP theres not much else you can do unless theres a specific reason for the decline! you can stay steady for many years my husband was stage 3 for at least 15 or 16 years that we know of (they never used to tell you much like they do now)

  • Thanks, that makes me feel better. Knowing you can hold steady.

  • There are several websites for you to get started. This one is one of the better ones for support and ideas. The other is davita.com. They have lots of good information as well as recipes that are kidney friendly. Another is the American Association of Kidney Patients, aakp.org. Lots of excellent information as well as going to their store and downloading and watching numerous videos that will explain the entire CKD Stages. Once you watch them and make notes as you go you'll have plenty of questions to research. Of course the last website is for the National Kidney Foundation, nkf.org. Good luck getting the answers you need.

  • Thank You!

  • Have they run any urine tests to see if you have hematuria (blood in urine) or proteinuria ( protein in urine). Were you recently on drugs that may have caused a decline? Avoid the use of NSAID drugs such as aspirin. They can cause further kidney damage. Tylonol is the drug of choice if you must use one for kidney patients. A lower GFR such may indicate some other issue other than kidney disease. In 2013, I had a GFR of 51 and my doctor said it could be from an infection. They they found microscopic blood in my urine ( hematuria), so I was sent to a urologist. All kinds of tests were done. Nothing was wrong, but I continued to have the microscopic blood. Finally more than a year later, I was sent to a nephrologist who said it sounded like I had IGA Nephropathy - apparently there are several kinds of kidney disease.

    During this time, I found out that I had multiple food intolerances. Major one being gluten. After changing what I was eating to avoid inflammation from the food, my GFR increased to the mid 60s. However, I started having protein leaks in my urine. My nephrologist said if I had a large enough leak I would need a biopsy. Finally last year in Sept, I had a biopsy and it indeed showed some kidney scarring and that I had IGA Nephropathy. My nephrologist feels it was caused by my food intolerances. My holistic doctor feels that way as well, but also that my exposure to heavy molds in my 20s added to it.

    After I got the results, my Neph just said we'd watch it and get tested every 3-6 months to see if there was a decline. I freaked out. I felt out of control. They didn't really give you a specific diet until you reach dialysis stage. Many people are really never affected any further and stay at the GFR for years, but being the hypochondriac that I am, that didn't resolve my concerns. I found a doctor at holistic-kidney.com who I'm working with now as well as my mainstream nephrologist. I'm on a bunch of supplements and more limitations to my diet, but my GFR at last bloodwork was 82. I have bounced around a lot though. Several months earlier I dropped to 70 after a case of shingles, but it's gone back up. I still have hematuria and proteinuria. Both doctors said I will never be cured, but I can possibly control it. There are never any absolutes in these kinds of conditions. What works for one person may not work for another.

    I think if you can discover the reason for it as Phillen said below, you may be able to reverse it a little or stop it from getting worse. Doctors won't perform a biopsy unless you have bleeding and protein leaks because there are some risks involved even though it is a quick in and out surgery and relatively painless.

    As the others have said, you may never get worse and it could stay at this level for many years and not have to make any major changes. The first month or so is a shocker, but eventually you will get over the fear. It's really helped me clean up my eating and I exercise a lot more and have more energy. If you do get worse, there are medications that can slow down or cause remission. Those can come with some heavy side effects so most doctors avoid them until your numbers get worse.

    Wishing you blessings and a healthy future!

  • Hi zazzel, that's very interesting! I have recently been diagnosed with CKD just over a month ago with no apparent reason. I'm a low healthy weight, good bp, no diabetes, or any other risk factors and I have food intolerances (dairy and now gluten). 5 years ago I went to the doctors feeling awful and they found out my kidney function had dropped to 39 having never had problems. I had tests (scan, bloods) and at the same time I worked out I was dairy intolerant so stopped having dairy. My kidney function returned to mid 60s and I was told the kidney function drop was just one of those things and not to worry there was no issue. I asked if the intolerance and the way I felt had anything to do with it and was told no. Anyway fast forward to now and in the past 18 months I've been feeling awful again. I went back to the docs a few times and was diagnosed with b12, folic acid and iron deficiency anaemia, again for no apparent reason. At the same time my kidney function has dropped to 53 and now I've officially got CKD. I have now given up gluten as I worked out that I was feeling awful on that (I'm not celiac though). I feel loads better. I'm having repeat blood tests in October and I will be interested to see if my GFR has improved. I should say I don't have protein or blood leaks. It's been my theory that food intolerances have caused kidney problems but everyone I've mentioned it to looks at me like I'm mad. It's nice to hear someone else say it. I also found this:

    nature.com/pr/journal/v77/n...

    In the meantime I'm continuing to eat healthily and exercise which I've always done. I agree that initially it's very scary to be told you have CKD, I spent a couple of weeks in a bit of a panic, but, after reassurance from several sources, I'm now fine.

  • Glad to hear your GFR went up! That is interesting about your intolerances. I wonder how many others have the same issue without knowing it. If you continue to feel bad occasionally, you may have other intolerances as well. I ended up taking the ALCAT test to discover my intolerances. It's controversial, but after getting the results ( I have lemon and carrot which I never suspected) and eliminating things then rotating some back in, I've gotten so much better. The test is expensive, but for me, it really truly helped. In any case, that alone didn't completely help. Inflammation in my body was really high, so the supplements have added another layer helping to eliminate inflammation and promote healing.

    Our guts affect all kinds of disease. Mainstream medicine is a little behind in the whole nutrition arena, but they are slowly catching up. It's frustrating when they don't see that food intolerances could cause disease because it causes inflamation and inflamation causes disease.

    One of the main things I follow from my holistic doctor is to avoid oils that are high in Omega 6 (sunflower, canola, safflower, corn etc etc) and use olive oil as my main oil to cook with small amounts of coconut oil. I also take 2tbs twice a day of flax oil. This helps with inflamation.

  • Thanks as well to the post to that article. I wish more studies were being done like that. I don't drink milk, but do eat cheese. I think I'll cut out dairy chees for awhile to see if it will help my proteinuria although my blood pressure meds already seem to be helping with that.

    One more thing. I always had low blood pressure, but in the last several months it started to rise out of the blue even with all of the exercise, yoga, meditation and eating right that I'm doing. I would advise anyone with this disease to buy a home blood pressure monitor and keep a log. My doctor told me if it got up to 149/90 consistently to come see her and several months later it did. Since high blood pressure can have no warning signs, it is good to just be aware of it.

  • Zazzel - do you get your supplements all from holistic-kidney or do you buy them locally? Also what major changes did you make in your diet? Did you change to vegetarian?

  • She set me up on her full script account so they are discounted. I also buy some locally and some from The Natural thenatural.com/ . I find their prices better than Amazon.

    The first and biggest change was going gluten free. After taking the ALCAT test, I was given a huge list of foods that I was intolerant to. I stayed off of them for several months then started rotating in the mild and moderate intolerances . My major intolerances lemon and carrot I don't eat at all.

    After talking to the holistic doctor, she has me avoiding all high Omega 6 oils which cause inflamation. That includes most of the oils in standard processed foods such as safflower, corn, sunflower, sesame, canola etc. I use high temp olive oil for cooking (no higher than 325 f or it becomes toxic), occasionally palm or coconut and occasionally grass fed butter. I use the flax as stated above and use it in smoothies and as salad dressing. Flax is high in Omega 3and helps reduce inflamation.

    Other foodsto avoid arehigh fructose corn syrup, quinoa, GMO corn, star fruit, prepared meats, fast food, blackened grilled foods ( don't let it get that nice crispy black ), nuts except walnuts and macadamia. Of course everything can be eaten occasionally. Add probiotic foods like sauerkraut,or raw pickles though watch the sodium, soy, alcohol, artificial sweeteners, agave (😩) . Eat mostly organic and do a lot of simple cooking.

    Actually, as much as I would love to go vegetarian for the sake of animals, you need to make sure to get enough amino acids which are found in easiest digestible form in meat. I limit meals to about 2oz of meat, and limit my red meat intake. Then I try only to eat grass fed free range. Better for the animal and higher in Omega 3. This all depends on your stage, but since this is an early ckd forum we should not eat extra protein as needed late stage. Both my holistic doctor and mainstream said to follow the standard recommended guidelines for protein. I was never a big meat eater, so I e actually had to make sure to try and include more at each meal than I did before.

    I made the changes I needed baby steps. I went gluten free in 2013, did the ALCAT in 2014 so cut out my food intolerances. That took me several years to master. Even now if I'm not careful about rotating them it builds up and makes me sick. That aggravates my kidneys and causes little setbacks. Then last Sept I found out I had IGA Nephropathy and began the supplements and cutting out the processed foods and oils.

    I'm not going to lie. I've had big pity parties for myself, but I feel better and so far I've seen results. Others have it much worse so I feel very lucky.

    Hope this helps. Let me know if you have further questions.

    This works for me because they believe my kidney disease is caused by food intolerances. For someone such as toeragthecat21 who was more or less born with the issue a different approach seemed to help. Certainly too much protein especially red meat can be damaging.

  • Thank you both the conversation.

    I do have blood pressure issues, but am currently under control. I am at a good weight and until I started feeling so crappy, had a regular exercise routine.

    I do have a dairy intolerance, but I do eat some dairy, with the help of those supplements that help with digestion.

    My doctor hasn't used the words kidney disease or CKD yet, so I'm not sure if that means I don't have it, just have a low #, or I have it and she thinks I know that from the low #. Hasn't referred me to a specialist either.

    I do go back in 6 weeks for another round of blood work.

    I did have a urine test done, and at the moment that was fine.

  • My regular doctor didn't say anything to me about my GFR at 51 either until I had the blood in the urine. Later I find out I have CKD per my story above.

    If you didn't read the study done that Julesboz listed above, I would highly recommend it. It may be in your best interest to completely cut out cow dairy and see if your numbers go up. It's worth a shot. Try it out for a few months and see if you can get new tests. From the report, it looks like numbers would go back up pretty quickly if that is what is causing the issue. Just because you can eat certain foods with the help of medicine, doesn't necessarily mean your body won't still react poorly in other ways. Here's the link to the study again. ature.com/pr/journal/v77/n...

  • Thanks, I hadn't looked at it, but will do so this evening!

  • Just got the urine test results back. Trace amounts of protein and leukocytes. :(

  • Wait, I think trace amounts are fine. It's when protein leaks are high that it's an issue. Trace amounts of blood in urine is an issue. I believe leukocyte are an indication of an infection, but I'm not positive. Again, trace amounts shouldn't be an issue. Of course you will check with your doctor, but I don't think you need to worry. 😊 Keep us posted on this.

  • Thank You, Thank you, Thank you .... and I will check with the doc!

  • hi ferret girl 14..the only thing i can think of that might help is to go vegetarian cut out red meat and chicken and change to fish..with no batter..i had kidney problems at 6 years old and made the damaged kidneys last 52 years before having transplant last year..i went totaly vegetarian at 18..

    and recomend you do not get stressed this will raise blood pressure .which will damage kidneys...hope this helps you..take care..chris

  • Thanks. I have blood pressure issues ~ but we are under control at the moment.

    I have been trying to go vegan for a long time, but I struggle finding foods that I like ~ I am OVERLY picky. :(

  • hi..vegan diet may be a bit exstreme...reading other replies you have sent..seams to tell me you need a doctor who listens a bit more and give you detailed results so you can investigate things for yourself..being kept in the dark is not the answer...it makes you worry...ask for second opinion they cannot refuse your request...hope this helps..chris

  • Thank You, it probably is the best idea.

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