Totally stuck!! Protein/kidney issues

[kmart]

Hi Everyone,

Long story short - i'm 32 and just waiting for my genetic test results for HfI. I saw Prof cox a few weeks back who said i was a very strong case for HFI. So great to finally figure out what has been going on all these years.

I immediately cut out all fructose and noticed and immediate improvement. For 2 years i had been really very sick - and my liver was pretty enlarged, so i can't even tolerate small amounts of white potato.

So - i upped the protein - meat and fish has been the main part of my diet. eggs haven't agreed with me.

The problem is that although this made me feel a lot better - i am feeling increasingly unwell in other ways - very tired, severe bloating and water retention all over (like my whole body blows up), lower back ache, leg cramps, itchy skin on my hands and now my hand started to feel numb. After more digging and playing around with my diet i think it's the protein. For 48 hours i juts ate safe bread and all the symptoms disappeared - i could think again, had more energy, water retention went and i halved in size, back stopped aching and legs cramps went etc!!! i've tried introducing things - but it seems all protein, even in milk, bring the symptoms straight back. I looked into it/how protein can affect your kidneys...

The problem is i now have no idea what i can eat. I cant live on just bread. i"m really stuck. I've been in touch with he hospital who said they will get the dietician to contact me, but not heard from them yet.

Any ideas? Does anyone know of a food supplement/drink etc that i could take? all the ones i've seen have sugar in, so a big no of course!

thanks.... any suggestions gratefully received!

xx

[charlie]

You may find if your body has been toxic for a long time then it is going to take a long time to recover. Little and often food may be best.

Glad you had success with prof cox am very jealous you getting answers although very pleased for you of course. Good old Nhs here, meg had her sugar challenge waiting for results but now got to go back as they forgot to send her for an ultrasound that day and I didn't know she was due to have one, no one even mentioned it till the department wrote and said she did not attend......

So from my experience you will have to keep hassling them.

Have you tried quinoa or millet, holland &barrett sell both. From what I can see they are low fructose.

[nicoleh]

Our little DD's kidneys have taken much longer to repair than her liver. The high protein diet really messed them up for her too.

One key is to make sure you eat heaps of fat. there aren't many safe carb sources (do you tolerate rice?) and lean protein = kidney disaster so go for piling butter on everything, and fatty fatty meat. fats will help the kidneys cope with the protein. if you're not used to eating lots of fat it might upset your digestion a little. ease in slowly and avoid vegetable oils - they're really hard to digest and difficult on a raw system. cold pressed olive may be an exception. otherwise dairy and meat fats are the best.

have you had blood tests for liver and kidney function? electrolytes and liver and kidney function tests should be run to see how you're doing.

my dd only tolerates cornstarch, tapioca starch, eggs and meats/poultry/fish and ghee. it is so hard to keep it low protein!

we have found our eggs to be fine here - they are free range, fed real food scraps etc from our friend. there seems to be some variability in egg fructose content - in Australia hens are fed a bit better than the US, and our database says they're fructose free. perhaps you could try finding someone who could sell you some backyard chook eggs? or at least some organic at a supermarket?

by supplement, do you mean vitamin?

if you try rice, try boiling and draining a few times like some people do with potato. that should help remove any residual fructose.

I feel for you. for us, we'd be in the tall grass without eggs. it does get better though! DD's kidneys are now fine with larger quantities of protein than what she could handle before. they were just super stressed from months of fructose - yours have had years of it - I imagine they will be pretty sensitive to any stresses.

supplementing glycine and folate can help your liver too.
books.google.com.au/books?id=zjYof6MJZkkC&pg=PA1157&lpg=PA1157&dq=fructose+in+breastmilk&source=bl&ots=BczX3gunKd&sig=ennKMNuitvQZgC5RWHbKVlhtkVI&hl=en&sa=X&ei=rO63UenXJ6STiAe-7ICQCg&ved=0CDQQ6AEwAjgU#v=onepage&q=fructose%20in%20breastmilk&f=false

page 1161 of that book, in the "treatment" paragraph mentions the folate. I'm now certain that my taking folate (dd is breastfed) is why her liver enzymes have been ok. her own RBC folate level is really high - it must have protected her liver.

oral glycine is always good for protecting the liver (any search on www.pubmed.gov will bring up heaps of examples of liver glycine results). it also makes the aldolase B enzyme work better in HFI (http://www.ncbi.nlm.nih.gov/pubmed/21166391). This article suggests that a drug, based on glycine, could be used to treat HFI. I figured that it would be a sensible suggestion just to try glycine - but that would be less profitable for a drug company! anyway, it seems to help DD as well, and my mum (presumptive HFI) has been far better on a high glycine diet than she was before. worth a shot anyway, especially since it will help the liver even if it doesn't improve the hfi enzyme function.
These are a couple of things you might like to try.

I hope you feel much better soon,
Nicole

[ukbill]

The Fat item / comments brought back memories for me..

On my mothers side of the family they were all great fat eaters.. (and none of them were fat!!)

My grandfather on my mothers side would not buy a piece of meat unless it came with a good lump of fat or was marbled with fat.

He collected all the dripping and had it on toast or bread. with plenty of salt and pepper! He was born in 1887 and lived to be 86 and died of a now curable condition!

When I was very young (but old enough to remember) he questioned my mother as to why I was not eating.. and my mother replied that I would eat nothing but breast milk.. and I spat out everything else, most baby type food was sweet in those days as it all is now!

He said something Like "that babby is starving" and cut the corner off the square bread loaf they used to buy and spread it with the bottom of the dripping and sprinkled some salt on it..

I can remember the first taste of the dark jelly on the bottom of the dripping! It was such a strong event that 57 years later I can still remember it clearly, I cannot have been older 1 or 2 years old!

Apparently I was stuffing it into my mouth with both hands! Mum was so pleased they had found something I could and would eat.. I remember longing to go round and see them so I could eat all their dripping and all the corners off the loaf! I remember being very disappointed when I got there and I had already had all 4 corners off the loaf!

I more or less lived on eggs, bacon and dripping (even Lard when we were short of money).

Things got better when I could speak properly and explain why i did not like certain foods. I was permanently hungry as a child though.

So perhaps that is why my kidneys were not stressed by the high protein diet when I was young.

I must stress that animal fat is FULL of vitamins and for an HFI child simply the single best thing you can feed it .. it is HFI 100% safe!

[kmart]

Thanks everyone - some great ideas to try. I've just been out to buy a whole lot of butter and beef dripping will be next, once the butchers opens tomorrow!!

I think the rice might be more about the protein than the fructose - i don;t get the usual HFI symptoms but it makes me bloat up really quickly - same with milk/yoghurt. I've tried some eggs recently and they weren't great on my liver. My local butcher is really friendly and helpful tho, so will ask him if knows local producers i can speak to, to check what they feed the chickens - it would be amazing if i could get on with them again! egg on toast and tonne of butter... not bad considering ;-)

Re: the supplements, i meant the nutrient drinks for people who can't eat enough. I used to work with older/disabled people, who couldn't eat fully or ingest enough food to maintain themselves, so they also had special medical food drinks. I've tried to look at them, www.nutridrinks.co.uk/ but they all seem to have sugar or are high in protein. The only thing i could see that might be ok was maltodextrin - does anyone know anything about it?

thanks to you all again for your advice and support... I know i'll get there... my liver and kidneys have taken a 32 year beating, so sure it will take a while!

ha ha... bill i know exactly what you mean about fat... i've always devoured the fat on steaks/pork chops/bacon... my friends all hated it and i couldn;t understand why - it was the best bit for me!!!

kate x

[kmart]

www.nutridrinks.co.uk/335-POLYCAL-LIQUID-NEUTRAL.html

www.nutridrinks.co.uk/337-Polycal-400g.html

Any thoughts on these? the liquid one has glucose syrup in it... is this likely to be contaminated with fructose? i know some of you have said it can be...

thanks
K

[kmart]

Hi Charlie,

How was meg after the sugar challenge test? Hope she's ok and you get some answers soon. When are you coming back from the ultrasound? I'm in London so if you fancy meeting for a coffee that would be great.

K

[nicoleh]

If the amount of protein in rice was an issue then I'd be getting your kidney labs looked at asap. that is a low level of protein. ask to be referred to a renal specialist if it continues.

I'd at least get the blood tests before trying any significant dietary changes. I hope you're ok!

[charlie]

Hi kate,

we are coming up again tomorrow Monday for the ultrasound but we have a follow up on the 15th August if you are about then, hopefully we will get some answers.

she was very up and down after the sucrose challenge and has had alot more yo yoing energy levels.

I would be very cautious about those drinks. Personally I would wait until your DNA test results come back. It could be if the liver is struggling then it will struggle with detoxing the body. Short term, other than it is boring bread should be fine, maybe ryvita too, they should be fine, those and some cream cheese, or hard cheese are great for snacks.

The drinks look high in sugar albeit glucose and if you are trying to detox then they may yo yo your energy levels too much and put the liver under strain in its glucose / glycogen conversion etc. Plus, god knows what is in the orange flavour.

[kmart]

Thanks - I've had liver/kidney tests and hoping to get the results back on my app on 17th of this month - hopefully they'll shed some light on what's going on. I know they said last time my liver is pretty enlarged - but nothing about my kidneys yet.

Is rye flour ok? I wasn't sure so just been eating white wheat flour.

Good point about the drink with glucose in. Does anyone know whether maltodextrin is safe, if I got te powdered version?

Charlie the 15th would be great!

[colormist]

Kmart: I've had rye bread before and I don't have an issue with it (other than that icky rye taste).

[kmart]

ooh fab - i'll give it a try!! thanks!!

[nicoleh]

Hey Bill, funny you mention that. My mum (we think also HFI) used to say that dripping sandwiches were her favourite food (after lamb chops).

Last night I couldn't get DD to sleep. she was SO hungry after 5 days without any food or breastfeeds (really sick) - she's now making up for it. I was totally out of food for her - I ended up giving her all the dripping from the lamb roast we'd had for dinner. Let's just say she's a fan!

she used the word 'more' for the first time ever - and then used it again, and again, and again!

Funny, but I made her some custard today with expressed breastmilk, egg and cornstarch - that's it. definitely hfi safe but b/c of the breastmilk it is sweet. she was barely interested - ended up pushing it away despite being hungry. totally different reaction to the dripping. it's amazing how strong the sweet aversion is. yet, she will still breastfeed. maybe she knows that it's ok but she should be wary of any 'solids' that are sweet?

[kmart]

Ah that's lovely that she's found something she likes!! A lot more lamb roasts for you then;-)

K

[nicoleh]

yep, and she's taken to the custard too. I guess she realised it didn't make her feel sick. she's even added the word custard to her vocabulary.

[kmart]

Ah bless her!! that's great to hear!

[ukbill]

Do not forget beef dripping, pork and chicken too!

I am glad she found something that is both safe and healthy for her to eat!

I do not like to eat too much fat now because I think I might have gallstones (family history of them) IF I eat too much now I get very burp'ie and quite some discomfort for several hours.

However I have to eat silly amounts of fat to get this side effect.

For those who are interested my highest Cholesterol level reading is 4 (with an intervention level of 6)

4 years previously it was 1!

So eating fat by itself dose not = high blood cholesterol or obesity.

If it did I would be 25+ stone (400 lbs) not the 12 stone 14 lbs (206lbs) I am now and be on statins for cholesterol.

What makes people fat is sugar..and lack of exercise of course.

A better way might be to say someone who's calorific intake far exceeds their daily requirements given the amount of exercise and physical work they do.

I am so happy DD is enjoying it

Try making her some beef tea as we call it.

Basically its beef stock with no added veg. herbs are OK though.

Just slowly cook some beef for several hours in water. The cheapest cuts are fine, the beef is not eaten anyway because it will be stringy after so long cooking and not taste of much anyway.

Chicken broth can be made from the carcass of the chicken left over from dinner, or joint the bird and remove the breast meat from the bones and cook up the bones or roast them first then stew them for hours to get all the goodness out of the bones.

These are all very simple things to make and you can hardly make a mistake, unless you let the pan boil dry

Have you tried her on Vegemite or Marmite (Yeast extract) it is a very savory taste and is very low sugar. (at least Marmite is in the UK) Vegemite has a little more sugar in it left over form the vegetables that were boiled to stock and then boiled further until dry, mixed with yeast extract and salt.

I bet she will like that also!

[nicoleh]

yeah we have been making stock/broth for her (now without veg) since she was 6 months old. she drinks a cup with every meal almost (if the meal doesn't involve gravy). Fish stock with fish heads is particularly good (sorry, you strain out the heads that is). she likes the fish eyes - so super nutritious and she's too young to get the yuk factor.

One of our favs - actually she had tonight - chicken drumsticks roasted in a pan then we add stock after the drumsticks have been removed and scrape up the pan juices and boil down the stock all together. makes a thick sticky sauce that sets to a jelly or even leather-like consistency. that stuff is seriously yum!

yes, I'd like to try her on something like vegemite but it seems to be too high in fructose even for me to have it so that's out for the mo. I won't even try her on herbs - she has gone badly with rice cooked by absorption so I think herbs would be even higher. Actually I really need to do an update now on her situation. might do now.

[ukbill]

Mmm she is ultra sensitive then by the sound of it.

With the herbs just use a tiny amount of a green leaf variety say parsley in a fish sauce?

That chicken sounds good!

Marmite is just yeast extract and is a by product of the brewing industry so the sugars that remain should be mostly barley malt (maltose which is 2 glucose molecules linked together) so it should be safe.. however I am not certain been as she seems to have zero tolerance.

According to the nutritional databases I have looked at it has zero sugar, some other brands might not be as safe though (Tesco in the UK make their own brand)

[ukbill]

Just had another thought.

Try Roast pork leg with the crackling on I know she will love the cracking as equivalent of chips or crisps

Your butcher might be able to supply you with a quantity of pork rind (the skin) which can be boiled first (makes good gelatin) then roasted to make great crackling with lots of salt and pepper (if she can take pepper) on top!

You can also deep fat fry it to make pork crunch where the rind puffs up like Chinese prawn crackers
These days all prawn crackers contain sugar, once they were HFI safe but the ever advancement of added sugar has put an end to safe prawn crackers.

There are recipes about for making your own prawn crackers just leave out the added sugar.

Bacon joint (assuming its not cured with sugar) boil it when cooked remove the fat and rind then put it back in the boiling water and cook it long and slow.

The rind and fat become "jellied" and the stock will set as a jelly too. Many bacon joints are very salty so soak in water for a few hours first to remove the excess salt before changing the water and cooking.

She will love all these things!

According to the nutritional data I have seen instant mash potatoes is 100% fructose and sucrose free!

So Potato starch and instant mash is useful for thickening and piping onto baking sheets and baking to make a type of cookies that are both sugar free and gluten free also.

Grease the baking sheet with butter and maybe add some cheese (strong hard cheese is best for flavour) bacon bits (cooked yourself from known safe bacon) marmite or the dark jelly from dripping the pan.

You can also make instant mash with milk and butter instead of water for a fuller taste.

If she can handle it a sprinkle of poppy seeds or celery seeds on top is good and after part baking they can be egg washed as well to give a golden colour.

Hope this gives you some more ideas?

HFI cooking is easy once you get your head around it