Diagnosec CD 6+ years have now been d... - Gluten Free Guerr...

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Diagnosec CD 6+ years have now been diagnosed stage 3 chronic kidney disease have been told to follow low protein low potassium diet Help

Mia1057
Mia1057
15 Replies
15 Replies
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Lynxcat

Hi Mia1057, Your doctor should really have given you a consultation with a dietician so that they can go through the foods that are best avoided. Ask for an appointment to see a dietician as soon as you are able. In the meantime, here is a site that runs through the basics of what you will need to do:

nlm.nih.gov/medlineplus/enc...

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Mia1057
Mia1057
in reply to Lynxcat

thanks lynxcat. I have met with dietician but we ended up in a discussion about the higher levels of fat and she says salt in gluten free products. It felt like I now have to make everything from scratch bread etc rather than buy any GF products. Thanks for the link will check this out.

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Lynxcat
Lynxcat
in reply to Mia1057

Hi Mia, The NHS site page link: nhs.uk/conditions/kidney-di...

It must be disappointing that the dietician didn't build up a specific specialised diet for you. I wonder if you perhaps went back and asked your GP if there is a possibility that he/she may be able to refer you to a more specific dietician. I think that this it is worth a try.

I must admit that I eat very few GF products like supermarket free-from ranges .... I find all of them extremely bloating and very fattening so avoid them most of the time. I do bake occasional cakes and scones which I use as bread from Doves gluten and wheat free flours. I throw everything in a bowel - quickly beat together with a fork and quite literally throw them in the oven. Both cakes and scones cook extremely quickly - it seems far easier cooking with gf flour than with wheat flour.

Many people believe that quinoa is a wonder food for people with any condition ... here is a site that gives you the food value of quinoa and it may be helpful to perhaps think of increasing the amount of quinoa that you eat especially if you have to reduce the amount of protein.

quinoatips.com/a-new-breakd...

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Mia1057
Mia1057
in reply to Lynxcat

Thank you this is really helpful

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Jerry

Hi Mia, are you aware of Lupus? because Lupus can affect the kidneys and there is a link between Lupus and those having CD. Our kidneys hate medications and alcohol as they make them work harder, which's also worth bearing in mind. I am not a medic so these are just my observations.

I also agree about quinoa and what makes quinoa special is it is a complete food as all the food we eat is broken down into 23 essential amino acids and our body makes 15 of these but needs the remaining 8 directly from the food we eat and quinoa contains all 23 vital amino acids.

So good luck and I hope that you respond to the low protein diet as inflamed kidneys are very painful, so I feel for you.

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NorthernSoul

Noooo! Quinoa is high in potassium! It's also got one of the highest levels of protein of any grain- not a good idea either. Your kidneys excrete urea, the end-product of protein break-down so vast quantities of protein also need to be avoided. Please please please don't start eating loads of quinoa! This is a massive no-no!

Jerry and Lynxcat- amino acids are the building blocks of protein. The reason quinoa has loads of them is because it's chock-full of protein. It's the exact opposite of what's needed for a low-protein diet! She will almost certainly have had blood tests for lupus performed by her nephrologist as the standard work-up for CKD.

You definitely need to be referred back to the dietician- you can't rely on unqualified people like us to help you. If you don't have a good idea of what you should be eating then they obviously didn't do their job properly!

In the meantime, here are a few help sheets:

emrn.org.uk/documents/EMRN%...

kidney.org/atoz/content/pot...

Buying one or two specialist cookbooks might be worthwhile too:

kidney.org.uk/books/eatwell...

In all honesty, if GF stuff is high in potassium (I don't know anything about them in this respect) then you might indeed be better off making some of your own food. A breadmaker takes very little effort and you can easily make a few batches of bread on a weekend and freeze it for the rest of the month. A bit of planning ahead and you'll probably end up saving a fair bit of money too.

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Mia1057

Thanks to everyone. It's all a bit confusing. I have got another appointment with the dietician on Monday until then I will just eat non gluten foods off my kidney diet sheet. I will also try making some bread. The help sheets are great. Does anyone know if there has been any research on cd and ckd.

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NorthernSoul

Just had a quick search for you- there seems to be a slight increase in risk but I suspect that might be more related to the fact that people with coeliac also have an increased risk of systemic autoimmune diseases (although admittedly even non-immune CKD is very slightly more common).

I don't know if you have any other illnesses but high blood pressure and diabetes are the two biggies when it comes to CKD.

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Jerry
Jerry
in reply to NorthernSoul

Hi Northernsoul, it's a good job someone Knows what they are talking about LOL

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Irene
IreneAdministrator

Thank you NorthernSoul...We value your expertise - we'd have to be researching away to get a better understanding of the implications of this dietary need.

I'm not sure what the daily allowances for salt and protein are on this particular diet but it may not be necessary to rule out all branded gf breads. We have praised the Warburtons loaf on occasion because it is the one of the lowest for salt, fat etc that we have seen and it tastes ok. Looking at the wrapper it says the protein per slice is 0.6g, salt is 0.29g. If you want further info we have some pics on our facebook page, showing the nutrional values. Sainsbury's own brand brown bread is also another healthier gf option.

facebook.com/photo.php?fbid...

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Mia1057
Mia1057
in reply to Irene

Thanks Irene I will look into that too you are all so helpful

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Hidden
Hidden
in reply to Mia1057

Hello Mia, You sure do have a big problem sorting out a suitable food intake. Shame more details not given as to a suitable menu to help during early weeks. Hope dietition give more help next time. Thinking of you. x

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FionaGFG
FionaGFGAdministrator

Hi Mia,

I'd ask your dietitian for practical info on how to read coeliac / gluten free labels and others for non Free From foods. Most of us are so busy looking out for gluten we lose the will to check the salt, sugar, fat content etc. Diabetes UK do a great know your labels leaflet which may help you regarding the salt labels. Just search 'Know your labels + diabetes UK' within Google and you should see this:

[PDF]

Know your labels - Diabetes UK

diabetes.org.uk/.../Know%20...

File Format: PDF/Adobe Acrobat - Quick View

People with diabetes are advised to follow the same healthy ... many packs, are useful guides to choosing a healthier diet. ... Your guide to reading food labels ...

Be firm with your dietitian and make sure they give you websites or a hand out with top tips written down. I know these appointments are often short and you can feel like you're being rushed out. I'm sure you're also considering jotting down some bullet points of things to discuss with the dietitian - very handy so you run through all your questions.

Do bear in mind the advice from Northern Soul - Quinoa isn't a grain it's a protein so avoid. Also please don't be swayed by claims of superfoods etc. The FSA and other advertising standard bodies have avoided against such enthusiastic marketing claims. Often they're not true.

Let us know how you are getting on. Remember if you can deal with the GF lifestyle switch you can deal with the low protein & low potassium diet too.

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Mia1057

Hi everyone thanks for your help on this. I had a good discussion with the dietician but I have to say its not easy. It looks like most of what I eat will have to be fresh and from scratch. I was quite shocked by the amount of fat and salt in lost of GF products. Anyway if anyone has a good recipe for GF bread and GF pasta that I can adapt I would love to have it.

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Mia1057

Thought I would just update people here. I have now managed to organise my low potassium, low sodium, low protein GF diets and I have managed to get a local Indian restaurant to make me beautiful curries that I can freeze. The chef's mother also has kidney disease so he is really understanding. However a life where you have to soak your potatoes for at least 4 hrs, can't eat tomatoes and can only have protein 3 times a week is challenging especially when you are CD and all the recipes for GF bread and Pasta seem to have egg or egg substitute in it which is a big no no for me. If anyone has ideas for making food more interesting please let me know. There is only so much rice you can eat.

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