Kidney/Pancreas
What do you eat?
Updated May 28, 2021
in Kidney/Pancreas
I am in stage 4 CKD, just listed for a Kidney and Pancreas. I have T1D. I am currently trying to figure out just what on earth to eat. I used to love to try new foods, and now all I can think about is "I can't eat that". I am on a low protein, low carbohydrate, low potassium, low phosphorus, and of course low sodium diet. I also have celiac, and must eat gluten free. Sure is a lot of "can't eat that". I'd love to hear what others are eating!
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Oh I understand what you mean completely. I’m listed for a heart and kidney. I’m on a similar diet as you and I felt like I couldn’t eat anything. I worked with a dietitian to help me figure out foods I could eat. Do you have access to one?
I have an autoimmune condition that requires me to eat a diet with a lot of overlaps to yours! Aside from loads of vegetables, canned coconut milk and cassava flour, both gluten and grain free, have been my best friends (although cassava is a starchy tuber and not low carb--would check with a professional on that one!) My favorite things to make are homemade coconut milk creamer for coffee/tea and cassava tortillas. I blend canned coconut milk with water and spices and for the tortillas, all you need is HOT water to make dough.
Thanks, @ChefAmanda. I have met with a RD, twice. It's usually her just reviewing labels and telling me what to look for, and then suggesting I find recipes online. I tend to leave the session feeling like I am lacking information. Maybe I should find a new RD.
Mmmmmmmmm. I should attempt some tortillas. I can usually manage a higher carb item, with insulin and dosing ahead of time, but my health care team prefers I eat mostly low(er) carb. Sometimes, a girl just needs more than 30g a meal, though!
@TServold Oh that sucks. I can remember having visits like that. I have left a meeting with a RD crying because she was zero help.
@TServold i found that I went to bell peppers, onions and cauliflower as my go to veg! I made lots of soup puree. I also ate a ton of pasta. To be honest, I told my endo team to stuff it with restrictions and they agreed. I just prebolused accordingly and used the square wave function more often, but white carbs kept me sane. Rice was a huge help bc you can put anything in it to stir fry. Also, experiment with different vinegars to replace salt. Apple cider and rice wine vinegar were my fave!
Transplant Patient
@TServold I was in your exact position pre transplant - T1D and in stage 4 CKD and I felt so restricted - I even went to Canyon ranch and met w Mark Hyman to get advice and all I was told was to eat less protein the the palm of my hand, low carb and low fat and not drink too much fluids! I love bananas and nuts and that was off limits due to the K+ too, so I was left w a little turkey or chicken a day, maybe some fish and purees. I was fortunate to get my kidney within a few months of these directions but I was weak at the surgery and I think it is better to be a little heavier, so maybe would have been better to dose up on insulin and just have some more white bread and pasta.
@Care_mass, thank you for the suggestions!! Super helpful. I started to experiment with vinegar.
@Karin, thank you for this insight. I am down 4 lbs in the past month, so I am worried that I'll be weak too. I want to be strong, and in good shape, before surgery, because I just know that it will make recovery a little easier. I made "buttered" noodles for dinner last night. I have to say... I really enjoyed just a big ol' bowl of pasta! 😀
Mmmm...buttered noodles!
Transplant Patient
This sounds a lot like my life pre-transplant! To be honest, it was really horrible for me both physically and mentally, and I developed a lot of disordered eating habits because of it. I'm now working through those with a therapist and dietician but it was horrible. I ended up googling and then modifying a lot of keto recipes.
Transplant Patient
So many triggers for eating disorders between all of our stories! Almost worth its own post???
Transplant Patient
yes! I'd love to hear more about people's experiences with food
I broke today... I'm not supposed to eat tomatoes, and of course salt, and I bought a small tomato at the store this morning cut it up and sprinkled the smallest amount of salt on it. It was so good, and I enjoyed every single bite of it but then I felt so guilty all day long. Sick to my stomach guilty. I have blood work on Thursday and I'm nervous it will be really bad over one tomato and a sprinkle of salt. If I'm going to feel guilty over food shouldn't it be something like a brownie or ice cream, not a tomato!!
Transplant Patient
@TServold
My motto is unless I eat it on Wednesday, my labs should be fine. Terrible motto, I know. But I also have to let myself live a little. I didn’t come this far to not allow myself to indulge every once in a while.
I had a massive ice cream cone on Saturday, which was full of citrus. And I enjoyed every bite. And I’m not worrying about it 1. Because I already ate it and 2. What happens will happen. I came through all this to have a life, not another set of rules.
Live a little, sweet friend. Enjoy that tomato! I have full belief you’ll be ok