IgAn/kidney friendly diet: I am getting... - Early CKD Support

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IgAn/kidney friendly diet

agirlwithhope95 profile image
24 Replies

I am getting mixed answers as I google. To eat or avoid, grains? I recently purchased Bob's Red Mill, rolled oats as i saw online that unprocessed oats are better than fine oats. However, now i discovered that due to our impacted kidneys, we should avoid oats as it may be contaminated with gluten during processing and to avoid unprocessed minerals such as grains and wheat as our kidneys are unable to break it down for us. Is that true? To conclude, to eat or avoid oats in general? and if grains too, does that mean no more rice? and which is better, processed (white rice) or unprocessed food (brown rice)?

what works for you guys?

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agirlwithhope95 profile image
agirlwithhope95
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24 Replies

So, yes the information on the web is mixed and confusing about this topic. I guess it would depend on your stage and your labs. I eat whole grains, rather than white which is bleached and more processed. I only eat grains in very small amounts, as per the serving size on the label. For example, if the bag says a serving of brown rice is a 1/2 cup, I eat a 1/2 cup or less. I am stage 3 with normal electrolytes.

agirlwithhope95 profile image
agirlwithhope95 in reply to HealthBuddyMelissa

I seeeee. Thank you for sharing your grain choices. I should also eat in moderation and follow the serving size.

Catpuss66 profile image
Catpuss66

No sure it makes that much of a difference but sure others have researched in more depth , and I am happy to be wrong/ corrected. Antibodies/ proteins get stuck in the glomerulus and cause damage. Think it”s best to d/w nephrologist as you don”t want cause any other problems by cutting out huge food groups.

agirlwithhope95 profile image
agirlwithhope95 in reply to Catpuss66

That is correct, the antibodies get stuck at the glomerulus where the kidney filters blood. (: Yes i will surely discuss with my consultant once my diagnosis is certain.

Catpuss66 profile image
Catpuss66 in reply to agirlwithhope95

I”ve just been diagnosed with the same thing, plus interstitial nephritis I think caused by Sjögren’s syndrome , on steroids not for the next couple of weeks, helping joints as well. Hopefully will settle things down.

agirlwithhope95 profile image
agirlwithhope95 in reply to Catpuss66

Wow you do have a few things on your plate. Hopefully all is well for you. I've heard and read that steroids help with the inflammation but it definitely comes with side effects such as weight gain and mood swings. And I am quite scared of consuming them due to the side effects. I hope that you will feel better soon too.

xx

Catpuss66 profile image
Catpuss66 in reply to agirlwithhope95

I have been very resistant to steroids because of those things you mentioned, 2 years on I just don”t care just don”t want to feel ill anymore. I am still working and it”s front line nhs and I am struggling, already gone up 1 ish dress size due to immobility, need to get moving but terrible joint pain hoping will ease now I am actually being treated .

Bet117 profile image
Bet117 in reply to agirlwithhope95

Agreed!

orangecity41 profile image
orangecity41

I am at CKD 3b and eat cooked old fashioned style oatmeal, 1/4 cup dry measure only, and seems to be ok. Doctor never told me any different, however Doctor does not tell me much anyway. I might consider not having it everyday?

agirlwithhope95 profile image
agirlwithhope95 in reply to orangecity41

Yeah I find that my consultant doesn't inform me much about anything and whatever question I ask could be googled. Perhaps if the oat meal does not affect your subsequent lab results, then it should be okay! Do look back at your previous lab results okay, look out for the potassium, phosphorus levels, that would give you an indication of what you're lacking or is in excess.

Keep heart, take care! xx

orangecity41 profile image
orangecity41 in reply to agirlwithhope95

I track and plan my CKD diet (sodium, phosphorus and potassium, and protein)

Bet117 profile image
Bet117

Hi agirlwithhope, Welcome! You have come to a great community filled with compassionate and supportive people.

Having IGAN is a bit different than those with CKD as it is an autoimmune disorder, but the basic kidney diet choices are the same. I am a Membraneous Nephropathy patient; also autoimmune. As you know, there is no cure, but it can be dealt with - the goal is to contain it.

Remember that every person is different, so diet can be around certain guidelines, but I would check with your consultant and possibly a dietician to be certain as to what is best for you. He/ she will look at your labs and give you suggestions which best meet your needs.

Because IGAN is autoimmune, you may want to add in foods which will not cause further inflammation such as alcohol, sugar, flour, tomatoes, and excess dairy.

I know of Bob' s Oats and Bulgar Wheat and have had no issue. I do eat oats but choose the gluten free; that is of choice. I also eat cream of wheat which is high in iron. As far as rice; I haven't stopped eating it, like anything else, I portion control. I also eat light wheat bread.

The key points are to watch your sodium level as kidneys don't process sodium well. ( 1500-2000mg ) low protein with the elimination of red meats, cold cuts, bacon, sausage etc. and choose eggs, chicken and omega high fish as salmon as a better choice. I avoid processed foods and keep an eye on foods with phosphorous and potassium. I also eat a diet filled with fresh or fresh frozen vegetables; steamed, roasted or grilled and also fruits such as strawberries, blueberries, apples and even pineapple.

Also, watch potassium in vegetables and other foods which contain phosphorous.

Here is a link on potassium:

kitchen.kidneyfund.org/gene...

Also phosphorous:

davita.com/dietnutrition/ar...

tools.myfooddata.com/nutrie...

Drink plenty of water, avoid dark colas and NASID pain relievers such as Advil.

This should give you a start. It will all come together, one day at a time as this is all a process.

Please reach out again and let me know how you are doing.

Bet

agirlwithhope95 profile image
agirlwithhope95 in reply to Bet117

Hi Bet! Thank you so much for this detailed anecdote and input of kidney friendly diet. I used to eat anything and everything, also because I'm early in my 20s and "living my life". I will definitely start to taper down on the fast food and processed food. Sadly, i suffer major cramps and headaches during my menstruation cycle and used to rely on NSAIDS a lot, my consultant have also told me to stop taking them and sticking to Paracetamol only. I will definitely incorporate healthier options and the right fruits and vegetables. Seems like banana is a no-no yeah since it contain lots of potassium. Banana is like my favorite fruit hehe it's ok! Thank you once again for the invaluable response and thank you for the good links! I'm sure many can benefit from this too.

Fit xx

Bet117 profile image
Bet117 in reply to agirlwithhope95

Hi Fit, Gosh you are welcome!

You are going to do fine! I actually see it as a lifestyle change and not a diet.

My husband eats my food as well, so that's a testimony to healthy eating which is how I look at it. Honestly, I don't miss the junk food a bit or feel deprived. I check menu's for things which are better for me.

Glad the links are useful to you.

Your consultant? Hmm. If he does not offer suggestions or communicate this to you, I would take the first step and ask him.

I have also brought a basic list of foods that I eat to both my consultant and GP and have received excellent feedback.

Take a copy of your labs to your next appointment and check off any areas which may flag high or low next to the given ranges. Note questions in the margins and don't leave without answers. I also bring a small notebook with me to appointments and note my vitals and discussion. If you have a family member who can go with you, even better as they can scribe the discussion; giving you better focus on answers. I use this to refer back to when I leave and reference to next appointment.

I know that seeing a renal dietician in the UK can be problematic, but I am unnerving; I ask anyway! Often, you can go to patient administration at your local hospital and ask if you can have a word with the dietician who deals with kidney patients. She can give you food suggestions which are both nutritious and appetizing.

See what you can come up with. Drink your water as well.

Be safe and please keep in touch! Happy to hear from you.

Bet Xx

orangecity41 profile image
orangecity41 in reply to Bet117

Thanks for the good links. Here is another link for tracking. aakp.org/wp-content/uploads...

Bet117 profile image
Bet117 in reply to orangecity41

Gosh, No thanks needed! I am glad that they are useful to all of us!

Belated Happy Thanksgiving!

FlowerPreciousLover profile image
FlowerPreciousLover in reply to Bet117

Bet117 and Orangecity 41, Thanks to you both for the excellent tracking links!!!

Bet117 profile image
Bet117 in reply to FlowerPreciousLover

No thanks ever needed. I speak for both of us. Our pleasure. Take care of yourself.

Bet

mmwsmall profile image
mmwsmall

Hello a girl with hope, nice to talk to you! The interent can be a minefield of conflicting informal. Everyone is different so my advice is to see a renal dietitian if you can. In my experience most doctors have limited knowledge on nutrition

agirlwithhope95 profile image
agirlwithhope95 in reply to mmwsmall

Nice talking to you too. That's so true. My consultant doesn't seem to know much about nutritions too. I will definitely ask them to refer me to a dietitian once I'm done with the biopsy and know exactly at what stage/condition I have. Whatever it takes to make our health work at its best. (:

mmwsmall profile image
mmwsmall in reply to agirlwithhope95

Good luck!

Bassetmommer profile image
Bassetmommer

HI,Hard to add much more information than my peers have stated. One thing to consider when eating any food. Less is best. I mean in the sense of what is in the product. It seem counterintuitive, but you pay more for less ingrediants. For example, organic products often have less or no preservatives in them and so they are better for you. Read labels. Do your research on products to see what they contain before you buy them.

In answer to your questions about oatmeal. I too eat in but only twice week and I eat organic. Nothing in it but oats.

agirlwithhope95 profile image
agirlwithhope95 in reply to Bassetmommer

That is so true. Less is truly more. Noted on the organic products.

That's great to hear that you are still consuming oats. It is definitely an easy option for breakfast or meal substitute when I have nothing at home to eat.

Thank you for the response. Take care!

Fit xx

seabreezegirl profile image
seabreezegirl

Organic Barley is good to eat .

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