Community Discussion Forum Adults and PKU Returning to diet

Viewing 15 posts - 1 through 15 (of 19 total)
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  • #9236
    Avatar of Kat

    Hi Everyone!

    I am returning to diet. I never knew I went off tho.  My protein allowance got put up to 43 exchanges a day, so i have been eating mostly normal foods.

    Lately, I haven't been weighing, recording or calculating.  I don't eat anything like meat, but I think my levels are up.  I don't want to do a blotter, because it takes so long to get the result, really what's the point?

    I need some motivation and support, so if anyone wants to buddy up to help each other stay on diet, I would really appreciate it.

    I find it hard, because I never know what to eat at work.  We have a toaster oven, and microwave, and a fridge, but I really don't like my options for food, so I eat out a lot.  I have salads, caesar salads, and sweet potato fries for lunch.  I also have chocolate bars that have 2g of pro on the package, as well as a lot of fruit.  I don't eat chocolate that much, but I'm really struggling right now, because I have no idea what I'm doing wrong.

    A typical food day for me is:

    banana for breakfast
    banana for a snack
    banana for a snack
    salad or sweet potato fries for lunch with curried mayo
    banana for a snack
    then a tomato sandwich on regular bread (2 slices is 3g pro) or toast on regular bread with phe free marg.

    It's not like I'm eating off diet.  Hell, maybe it's the coffee I'm drinking.  Does coffee affect levels?

    I just feel like crap, and need some help.

    Thanks for listening!


    Avatar of Sarah

    Hi Kat,

      You should find out what your levels are. If 43 exchanges are too high to keep you within range, that might be part of the problem. You probably also need some more variety. That's a lot of bananas! Not only that, but bananas are one of the higher phe fruits available. Are you getting formula throughout your work day? I eat a lot of salads and fries too, but I always feel better when I'm eating a variety of veggies & balancing it with low pro foods.

    Coffee shouldn't affect levels unless you are drinking it with real cream or milk.

    Avatar of Becky

    I agree, that seems like an awful lot of bananas! Having said that, from what you are eating, that doesn't look like you are getting 45 exchanges! I am no expert but actually it doesn't look like you are getting an awful lot of CALORIES either, apart from sweet potato fries! I have to monitor 3 times a week, and when I havent had enough calories it makes my levels higher!

    I also agree that unless you are drinking coffee with milk or cream then it should really effect your actual levels. However, if you are getting a ridiculous amount of caffine, that in itself may be making you feel rubbish! People who DONT have PKU can get ill from having too much caffine!! 

    Everyone should eat everything in moderation and it sounds like you are eating too many bananas and drinking too much coffee. Is there no other fruits that you like that you could replace one or two bananas a day with?!

    That is just my opinion and as I said Im no expert, can you not get in touch with your dietician to discuss your worries with them?!

    Avatar of Nicole

    Hi There…

    I agree too, thats alot of banana's!!! One small banana a day counts as 1 exchange, a big banana counts as 2 exchanges.

    Also by looking at ur normal intake ur not eating much.. Like becky says you need some more calories, maybe bigger size portion of meals and swapping a banana for an Apple or a bunch of Grapes oh and also taking ur formula through out the day.

    I am trying to stick to my diet but am only on 6 exchanges and ur on like 45 exchanges…Maybe thats too much for you?? but if u want to buddy up private mail me and i'll try helping out as much as possible.

    Avatar of Louise

     Hi Kat 

    well i think that it's cos ur not eating enough considering ur on 43 exchanges ur only eating 10-15 exchanges a day by the looks of things from what u have put on ur comment. Im on 3 exchanges a day and im eating a more varied diet daily than u do!! 

    Becky is right as well u dont seem 2 be eating a lot of calories and they help a hell of alot!! 

    I know a pregnant pku on just 24 exchanges thats almost half what u r on and she is eating chicken and eating out in the likes of kfc's, so i couldn't imagine what u could eat!! There is a hel lof lot more foods u could and probably should be eating if ur on that may exchanges.

    Im always ere if u wish 2 add me as friend any questions u may want 2 ask i will always reply not that im an expert like but i'd like 2 hope i could help u as much as possible!

    Hope 2 hear from u soon and good luck, oh n i would suggest u have ur bloods done 2 see were there at it could be that there very low and ur not gettin enough out of the foods ur eating or if there high it's more than likely what every1 else has said on ere that ur not eating enough calories and not enough variety in ur diet. 

    hope things get better 4 u soon n good luck!!

    Avatar of lynsey

    hi every1 im lily im 23 n live in uk i have returned to the diet but im on the pre conception diet so me n my partner can start tryin 4 a baby my blood levels r vry gud at the mo they r at 480 but i have done 2 blood tests since then so its fingers X the next 1 has gone down agen hopefully he he he i am abit worried about bein pregnant cus iv read that alot of pku ladys that r pregnant there blood levels r high n its so confusin cus if they r doin everthing rite then y dose this happen ?

    cud en1 let me know cus like en pku lady wen they r pregnant they want a healthy baby

    look 4ward to hearin frm u .

    take care every 1 x

    Avatar of Becky

     Mine personally went up because I wasn't getting enough calories. Also if you are ill ie, with morning sickness, this would make your levels rocket also! If you are just generally poorly that can effect the levels. I had bad migranes at one point in my pregnancy and was struggeling to stay awake for a few days. There are all sorts of things that could make your levels go high. As long as you are following all your dieticians instructions, and doing exactly what you are, preparing properly, everything should b ok Lily! x  x

    Avatar of lynsey

    thank u becky 4 helpin me understand the reason y it can happen im real grateful 

    how r  things goin 4 u ?

    Avatar of Nicole

    Again not a reply but statement. there should be a phe chart on this web site. that way people who have been off the diet longer than on can sucessfully count there phe intake.

    Avatar of lynsey

    hi nikkim

    how do i find it or bring it up on ere ?

    lily x

    Avatar of Morgan


    Avatar of nick

    hi im 20 years old and have been off the diet pretty strongly for about 4 years and have not drank formula for about 7 years. this probably sounds crazy, i know. i decided to go off when i was about 13 because i would eat something like a hamburger the day before a blood test and it would come out perfectly normal everytime. i never had an abnormally high PHE level.
    when i left the diet i was put on 18 exchanges a day and it just wasnt enough for me to be full on and i felt like i was way too skinny and small. i am older now and wonder what i would feel like if i was still on the diet but i dont feel close to any seizure's and dont feel like ive had a major drop in IQ.

    i just wanted to know what some other people had to say about my diet.

    Avatar of lynsey

    hiya nick

    im lily nice to meet u im 23 n i wos off my diet 4 about 15-16 years but im bak on the pre conception diet to have a baby :)

    wen i wos off the diet i felt like i wos loosin my IQ n gettin realy bad headaches that is realy strange thow u dont get any affects frm beenin off the diet do u know wot ur blood levels r at the mo mine is 110 which is wivin range so its all gud

    but i must addmit iv never had a seizure's  but i did have panic attacks n anxiety n realy bad depression :(

    but im just glad im bak on the diet cus i feel soooo much better in myself now yeppy lol

    lily xx

    Avatar of Keith

    I am looking to stay on diet as well and the hardest part for me is to count the protien intake. I am allowed while drinking my formula 30g of protien a day and it has helped me a lot when i started to drink the formula again but like cat I havent been eating much the formula by far makes me full for sure. I maybe eat some small meals here and there or maybe a good sized dinner. I am the only one in my family that has PKU so finding support is hard to come by. Not to mention that having no insurance where I am makes it even harder to go to the doctor.

    I have to see the doctor at least every two years to get my formula for free yet if you think about it it really isnt free if I have to pay a good amount of money that I do not have to see the doctor. I know I should see them more often but honestly with no money its really hard to do so.

    As for you kat I would have to say that  see if 30g of protien is ok. If you drink your formula it should be and honestly it helps keep your PHE level down as well. I know when I was last checked my levels were almost too low and i wasnt eating that much when it came to regular food.

    Avatar of lynsey

    hiya uncleteef

    i cant imagin wot u must b goin 

    i have classic pku but i live in uk i think is terrible in us 4 perscriptions cus in uk we get all our low protein food n formula free but we dont if we work full time thats only the hardest part in uk

    i think free perscriptions shud b all over the world cus pku is 4 life

    in uk we have exchanges im on 3 a day n i take 3 pku cooler 20z a day too this is bcus im on the pre conception diet n my blood levels r at 120 so it wivin range to strt tryin 4 a baby now


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