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Old 07-14-2013, 08:56 PM   #1
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ckd support thread

Welcome to our low carb chronic kidney disease support group! Come share your concerns and information and questions.

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Alright, to get started, I'm wondering if any of you know anything about baking soda and or apple cider vinegar for treating CKD. Here's an article about baking soda. The stuff on apple cider vinegar is mixed with lots of stuff online saying it's terrible for your kidneys but, in theory, it should do the same thing as baking soda in terms of ph, but doesn't have sodium in it. I actually eat a fair amount of salt, so I'd rather add ACV to my diet that add more salt via baking soda, but if ACV is bad, then I wonder if it'd be gross to sprinkle baking soda on my food. I feel like I should be able to make it work for me somehow.

Has anyone's doctor recommended baking soda?
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jayne, type I diabetic and mama to two sweet boys (9/03 and 2/09)

high fat, moderate protein, very low carb
once a day feeding

Last edited by rubidoux; 07-14-2013 at 09:05 PM..
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Old 07-15-2013, 06:05 AM   #2
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I don't have CKD but as a type 2 diabetic, am interested in learning what I can to avoid it, so will be watching this thread with interest. Thank you for starting it.

I did order some Benfotiamine since I don't think being pro-active will hurt anything.

Last edited by Elgar; 07-15-2013 at 06:07 AM..
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Old 07-15-2013, 09:25 AM   #3
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Welcome, Elgar!

I hadn't heard of Benfotiamine until it was mentioned on the other thread. I'm going to Henry's in a few min to see if they have some.

I wish that I had been more proactive. There were things I had no idea about that seem stupid now, but I just didn't know. For example I didn't know that I could actually damage my kidneys by not drinking water. I knew it was healthy to drink plenty of water but I had no idea that I could actually be causing damage by not drinking enough. I also had some idea that ibuprophen was bad for kidneys but no idea that it could contribute to diabetes-related CKD. I would also have stopped diet coke long ago if I had known that it was hard on kidneys. It's bizarre to me that nobody tells diabetics this stuff until they're already damaged. Gah!

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Old 07-15-2013, 11:16 AM   #4
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So, Doxie, you had mentioned not being able to eat butter or heavy whipping cream or cheese. I can't remember if you said it was bc of phosphorous or potassium, but I just saw a list that said butter and cream cheese and HWC were low phosphorous. Hard cheese was listed as moderate phosphorous. Milk and yogurt were really high, it looked like. I didn't really feel like these lists were all that trustworthy, though. One had avocado on the low list and the other had it on the high list. Plus, I really want numbers. I want to know how much I need and how much I'm getting, but I haven't seen a list that makes that seem possible.
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Old 07-16-2013, 03:51 PM   #5
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Quote:
Originally Posted by rubidoux View Post
Welcome, Elgar!

I hadn't heard of Benfotiamine until it was mentioned on the other thread. I'm going to Henry's in a few min to see if they have some.

I wish that I had been more proactive. There were things I had no idea about that seem stupid now, but I just didn't know. For example I didn't know that I could actually damage my kidneys by not drinking water. I knew it was healthy to drink plenty of water but I had no idea that I could actually be causing damage by not drinking enough. I also had some idea that ibuprophen was bad for kidneys but no idea that it could contribute to diabetes-related CKD. I would also have stopped diet coke long ago if I had known that it was hard on kidneys. It's bizarre to me that nobody tells diabetics this stuff until they're already damaged. Gah!
I'm with you - SO many things I would have done differently - I mean besides cheating - that are just part of low carbing. I LOVE Diet Coke, Had no idea it was hurting me. Don't drink a lot of water, I don't like it. I'm trying harder now but don't know if I'm supposed to be restricting my fluid intake. Who knew peanut butter was bad? Every newly diagnosed diabetic should be forewarned BEFORE it's too late. There is an eye doctor in town whose 21 year old son has lupus and was in kidney failure, and he (the doctor) did all kinds of research into diet and his son is now fully recovered. I don't know if he can help me but I'm going to talk to him Saturday and I will share everything I learn with you guys. I'm praying hard...
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Old 07-16-2013, 04:00 PM   #6
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Quote:
Originally Posted by rubidoux View Post
So, Doxie, you had mentioned not being able to eat butter or heavy whipping cream or cheese. I can't remember if you said it was bc of phosphorous or potassium, but I just saw a list that said butter and cream cheese and HWC were low phosphorous. Hard cheese was listed as moderate phosphorous. Milk and yogurt were really high, it looked like. I didn't really feel like these lists were all that trustworthy, though. One had avocado on the low list and the other had it on the high list. Plus, I really want numbers. I want to know how much I need and how much I'm getting, but I haven't seen a list that makes that seem possible.
My Benfotiamine came in the mail today. The directions say one capsule daily but I read a review on Amazon that said after a lot of research this lady is going to take two a day, so that's what I'm going to do as well...at least in the beginning. I have neuropathy, so if it doesn't help with my kidneys maybe it will help my feet. You know, I haven't seen a real kidney doctor yet, and since my doctor doesn't even know much about low carbing, I'm not sure I have a lot of faith in what he tells me. He said no nuts, nut products, dairy, high phosphorus drinks or foods, no salt, low sodium, etc. He said to look up foods on the internet, and when I went to one kidney site, it said doughnuts and pastries without nuts were ok! Really?! I wish I could find out more about the studies reversing CKD in mice with a ketogenic diet, because to me a ketogenic diet includes cream, cheese, nuts, etc. If that's what they were giving the mice and it worked, I'm game. I have a feeling the kidney foundations are a lot like the American Diabetes Association in the way they think about diet. The problem is that if I'm wrong, it will potentially cost me my life. BTW, many thanks for starting this thread!
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Old 07-17-2013, 02:34 PM   #7
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I got my referral to the kidney specialist today - the first day they can see me is July 29 because he only works on Mondays (?!). I know I need to ask about limiting fluids, I need to get a test to check potassium and phosphorus levels, and talk about how much protein I can have. Can anyone think of anything else I should ask?
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Old 07-17-2013, 03:01 PM   #8
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I'm happy you're getting in so quick! I think you'll feel better after you talk to the doctor. I sure hope he/she's thoughtful and not all low fat/high carb bent.

Something at the top of my list to ask would be how you're supposed to get a good list of potassium and phosphorus levels in foods. I can't find a good one online to save my life. I'd also ask how they feel about NK and whether thre are any patients doing it that they know of.

I really hope you don't have to limit fluids. I don't think is like that.

So, this morning I had blood drawn and gave a urine sample. That stuff completely freaks me out. I won't get my results till Tuesday when I see my new endo. (It's actually cool in a way, I do group appointments w five other type I women.) when my old endo ordered tests, I usually got results latr that day. But w this new guy, he actually puts the results on an overhead projector for the whole room to read! I'm not that freaked about privacy, but it feels kinda weird, and I get so anxious about these things (I have seriously been freaking out for like ten days already just bc of these tests and the appointment, made worse by the fact that I'm taking the bar the following week, my anxiety level is just thru the roof!), so it's hard to actually get the results so publicly.

I have been a little binge-y today which is the worst thing I could do in the hopes of getting out of this funk!
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Old 07-18-2013, 04:42 PM   #9
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Quote:
Originally Posted by rubidoux View Post
I'm happy you're getting in so quick! I think you'll feel better after you talk to the doctor. I sure hope he/she's thoughtful and not all low fat/high carb bent.

Something at the top of my list to ask would be how you're supposed to get a good list of potassium and phosphorus levels in foods. I can't find a good one online to save my life. I'd also ask how they feel about NK and whether thre are any patients doing it that they know of.

I really hope you don't have to limit fluids. I don't think is like that.

So, this morning I had blood drawn and gave a urine sample. That stuff completely freaks me out. I won't get my results till Tuesday when I see my new endo. (It's actually cool in a way, I do group appointments w five other type I women.) when my old endo ordered tests, I usually got results latr that day. But w this new guy, he actually puts the results on an overhead projector for the whole room to read! I'm not that freaked about privacy, but it feels kinda weird, and I get so anxious about these things (I have seriously been freaking out for like ten days already just bc of these tests and the appointment, made worse by the fact that I'm taking the bar the following week, my anxiety level is just thru the roof!), so it's hard to actually get the results so publicly.

I have been a little binge-y today which is the worst thing I could do in the hopes of getting out of this funk!
You will pass the bar with flying colors! Believe in yourself...I felt SO nervous when I had to present my Master's thesis, but I think subconsciously we are more prepared than we think. Congratulations - that's a huge accomplishment.

I got some other labs back today that say I'm very anemic but not to the point where I need a transfusion (been there, done that). The office girl said my dr. said to take a multi vitamin daily, so I asked if it should contain iron and she she no just a regular multi vitamin. How is that going to help with the anemia? Ugh.

Last thing, I'm wondering if someone will post some menus. I truly don't know what to eat...it seems like everything is off limits and for the most part I don't eat. I am starving, exhausted, cranky. AND my weight hasn't changed in 8 days! (There should be some payoff for not eating!)
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Old 07-19-2013, 06:08 PM   #10
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Thanks, Doxie! I am pretty sure I'm not gonna pass bc I haven't even gotten all the way through the material once yet, let alone memorized it. There is just a TON of stuff you have to know.

Have you looked at the kidney forums for menu ideas? I'm sure they aren't NK, but just to see what other people are eating. Do you think you'll ask the doctor about NK? I'm curious about what he/she'll think. For all we know doctors know about it and think it's a good idea. That would be awesome. I'm pretty curious to see how my endo reacts next week when he sees that I've lost about 25 pounds since I saw him four months ago. I'm hoping to lose a couple more before I get there bc I am overdue, been this same weight for many weeks. He's been supportive so far, but not sure if he fully understands the extent to which I rely on fat.

I'm going to ask him about starting on an ace inhibitor (are you on one?) and seeing a nephrologist. I have a PPO, so I don't need him to send me, but I would like his recommendation for a doc and also find out about seeing a renal nutritionist.
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Old 07-29-2013, 08:17 AM   #11
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Ok today is the day! I see my nephrologist at 2.45. I'm really praying he will give me something to combat this horrible fatigue. I'll report back what he has to say about the NK diet as well!
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Old 08-01-2013, 12:12 PM   #12
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Well, the power went out in my doctor's building and my appointment has been rescheduled for tomorrow. Will up date this weekend!
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Old 08-01-2013, 03:33 PM   #13
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Wishing you the best at your Dr. appt. Doxielove!
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Old 08-03-2013, 10:00 PM   #14
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Just saw this Doxie, I hope it went well.

I'm just returning, barely, to a normal routine after finishing the bar. I am still exhausted, though. But even though I've been pretty conscientious about my eating plan and my blood sugar, I feel like I haven't given it the attention I need to. So in the next day or two I'd like to start tracking my food and blood sugar a little better. I think I've done great at keeping protein low, but I have to remember that controlled blood sugar is the single most important thing to my kidneys.

Sadly, I'm currently battling a UTI which also makes me worry about my kidneys. I'm afraid that an increased frequency of UTI's is not a good sign and I feel like I have been having them more than I used to. It also worries me bc they always give me Cipro for them and I read a couple of months ago that Cipro can damage your kidneys. I don't know if here are other antibiotics that work as well.

Anyway, Doxie, I hope the doc answered all your Q's.
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