Dietary advise please

[claudia76]

Hi,

I'm new to this site and have ckd stage3b. I would be grateful for advise on what I should and shouldn't be eating. I am due to see a nephrologist soon as my condition has gone a bit worse over the past 2 years so hopefully I may get to see a dietician also. I have a pretty good general diet and don't really drink much alcohol but would like to help myself keep at this stage.

Many thanks.

[Hidden]

Please contact the NKF Helpline on 0845 601 02 09 or email [e-mail] We have a Dietary Information pack which we can send out to you.

[claudia76]

Thank -you I will do that.

[Nicolala]

Generally speaking, drink more water, reduce salt intake and take gentle exercise regularly. I wouldn't give any specific advice at this stage, as everyone has different needs depending on their own diagnosis. Good luck. X

[claudia76]

Thanks I will try to do that. Also I seem to have a lot of headaches especially after exercise could this be due to not having enough to drink during exercise or over doing it?

[Nicolala in reply to claudia76]

The headaches could be dehydration, yes. If you aren't on any fluid restriction then maybe drink a bit more and see if it improves. X

[HealthStrength]

Double-check with your healthcare team about the headaches after exercise. I second Nicolala's recommendation about gentle exercise along with dietary awareness, and finding an overall programme that takes your unique circumstances into consideration. Anecdotally, a dramatic reduction in alcohol consumption has seemed to help my overall health (and kidney situation). Also, allow your body lots of rest time to recover and heal. All the best and keep us posted.

[claudia76]

Thanks I will try those recommendations. I find that alcohol even a bit these days makes the headaches worse so don't have much at all.

[Crinkster]

Hi there Claudia,

I am going to give you the same (amended) advice I just posted elsewhere. First, and foremost, at stage 3b get yourself to a nephrologist ASAP!!! You must also start seeing a renal dietitian. Absolutely. INSIST on it...

Here's the general advice you can tailor to your needs until you see a dietitian:

One of the best things you can do is to learn how to interpret your lab results. Your nephrologist will/should answer every single question you have. If not, seek a different one. You must be your own advocate because no one else will do it for you. It will be the renal dietitian who will really guide you.

There are other things besides creatinine (which calculates your GFR along with your age and race) to look for in your blood work. Check for PTH, potassium, phosphorous and ferritin (don't want CKD anemia). Cutting out phosphorous, as best as you can, would go a really long way to keeping stable. The first thing to completely eliminate would be dark sodas. It's actually okay to drink things other than water (though water should still be included). My doctor has recommended about 3 L of fluid per day. Don't forget there is fluid/water in fruits and veggies, too.

Drinks: Fresh iced tea, hot tea (especially the green varieties), lemonade (read the label for phosphorous - fresh is best), coffee, and clear sodas like 7-up (lemon-lime), ginger ale, orange and some root beers are fine. I actually contacted Pepsico and Coca-Cola, by phone and email, to inquire about the phosphorous and potassium content of various root beers. "Mug" root beer has only 10 mg of potassium and zero phosphorous but others in their product lines were loaded. I have been instructed to limit phosphorous to 2000 mg per day (which is really pretty easy to do). In the U.S., manufacturers are not required to list the amount of this on their labels but look for anything beginning with phosp- in the ingredient label, i.e. any kind of "phosphates".

Get more of your protein from plant-based food and limit red meat. I eat a lot of fish and chicken besides things like legumes.

Fortunately, I am not potassium restricted because my K levels are low-normal. But if yours are out-of-whack, try to limit 'white' foods: milk, yogurt, cheese, potatoes, white bread. I drink unsweetened vanilla Almond milk. It is low in calories, sodium, potassium and has 0 mg of phosphorus per 8 oz serving. I love the taste. Never having been much of a milk drinker, I actually only use 3-4 oz on cold cereal.

Eating as much fresh food as possible is best, but not always possible. Try to select processed stuff with under 200 mg of sodium per serving. I limit my sodium intake to 2000 mg per day. Do not add any when cooking.

Restaurants more and more frequently have sheets with the nutritional information contained in their food...even places like McDonald's, Starbucks and Olive Garden. If they don't have them available in-store, you can often find it on their websites (Panera bread, for instance). I have no idea what chains, etc, you might have there, though.

I highly recommend Davita.com for their resources and to record your daily food intake. It is an amazing site. You'd be surprised, when you search for foods, how many different brands they have in their data base. I was going to input the info for a Luvo (brand) bean and rice frozen burrito but it was already in there! If you eat something unique, you can enter its nutritional data.

One thing I have been neglecting to mention to folks is to NOT take ANY anti-inflammatory medications, like ibuprofen or naproxin. They are absolute kidney killers. Also, if you ever need diagnostic tests, do NOT let then use contrast dyes without YOUR nephrologist's EXPLICIT permission (especially CT scans, PET scans, MRI or nuclear stress tests).

I've written a lot here but what you really need to understand that everyone's nutritional needs are different. You will get a meal plan tailored to your personal needs. But please, get to a nephrologist and dietitian.

Best wishes,

Laurie

PS really, go to davita.com

[claudia76 in reply to Crinkster]

Thanks I have an appointment soon so hopefully I can get some answers as I don't have other things wrong such as diabetes or high blood pressure etc so would like to know why I have CKD and what might have caused it. I suppose it could just be down to bad luck really. Anyway once I know what's what I can concentrate on keeping myself stable.

[Crinkster in reply to claudia76]

I understand how you can feel puzzled about the cause. I didn't have diabetes or hypertension, either. Those are the most common. So it's curious why some of us suffer from it. My nephrologist looked at my prescription drug history going back 20 years, at least as best as I could remember it. He is convinced that mine was caused by my use of lithium in the 90's that I took for bipolar disorder. I've heard others say theirs was caused by years of using ibuprofen (Advil, Motrin). I hope your doctor can solve the puzzle but don't fret if he can't. I feel the same way about the mental illness. Why? I will never know, and if it hadn't been for that would I ever had gotten CKD? Who knows?

But when life gives you lemons, make lemonade. I don't regret having had to live my life the way it's been at all. I am who I am, brain, kidney, breathing, sleep, arthritic diseases and all!!