Community Discussion Forum Adults and PKU going back to diet

Viewing 15 posts - 1 through 15 (of 16 total)
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    Avatar of Anne Mc
    Anne Mc

    Id like to hear from people who were off diet to get an idea of what negative symptoms you had and what difference going back on your diet made.
    Ive been reading through some of the threads and the only reference I can see is feeling tired and maybe bad temepered. Are there any other symptoms ?
    Im asking because my friend has severe learning/intellectual disabilities and cannot communicate effectively so we are only guessing on his behalf. nAny comments/advice would be welcome. nThanks.

    Avatar of marion

    when i was off the diet i was bad tempered i was very angery all the time i would be mad one mintue then crying the next. i hope that helps the best thing i did was go back on the diet

    Avatar of Breanna

    I’ve never been off diet and don’t plan to be, but I know what my little sister is like when her levels are just 8! She gets VERY emotional, which is bad because she’s naturally an emotional girl. She throws tantrums and has a very hard time concentrating in school. Lately we’ve been having a very hard time with her levels and coincidentally her teacher has told my parents that Erica is having a very hard time in class (she’s 9 by the way).
    When my levels are high, which I’m glad to say hasn’t happened in awhile, I get very crabby. I have a terrible temper and I severely lack concentration and balance skills. I really notice when my levels are high while I’m in dance class because when my levels are where they need to be I can concentrate so much better and I’m not always falling.
    I don’t know if my reply is helpful since I’ve never been off diet, but I guess I just thought that maybe you could take mine and my sisters problems and make them 10 times worse. Lol, I guess that might work.

    Avatar of

    I went back onto the strict diet after becoming pregnant three years ago. nAnd my friend also tried ( and failed) to do it recently.
    taking into account that I was pregnant, our shared symptoms were: n*green poo! (and a bad belly)- all the wierd an wonderful new stuff being given to your body in the phe supplement.
    * Weight loss. PKU diets tend to be healthier if you do not eat a lot of high sugar foods.
    * terrible headaches for the first few days.
    * A real drop in energy – followed by a sudden and continuous boost.
    then – if you persevere you feel the benefits – lifted mood – clearer skin – better concentration, you just feel a whole lot healthier and more sane!
    But, the first week or so it does feel like you are making yourself ill.
    Just keep going – it will get better and you will see the difference in yourself.
    good luck xxxxxxx

    Avatar of

    sorry, I just read your post a little better.
    At my worst point, aged 18, I had been off diet for about 2 years and had no phe supplement during that time. I was living away from home in a student house in Bristol.
    I suffered from terrible depression, anxiety and panic attacks. I even had problems with my balance and I would stay in the house for weeks on end. I was never diagnosed as anorexic but I reached about 7 stone and my friends and family were shocked at my appearence so much that I quit Uni in Bristol and moved back home.
    I suffer from depression on and off, but since maintaining my levels I have felt like a new person.
    Its scary how much high levels can affect you mentally – and when you are like that – no one will make you see sense.
    Being on diet is always the best thing to do – most people go off the rails at some point, but what you need to remember is – who know what being off diet will mean to you in 20 years time? what damage could be caused?
    Hope it helps, and haven’t been too serious. xxxxxxxxx


    Hey lou,just reading what you wrote…its scary the side affects.I have recently started back drinking my supplement but i’m not back on strick diet with exchanges.What is your typical diet daily?[/FONT]

    Avatar of olivia

    I have been off my diet completely before and I experienced very bad panic attacks. I would say now I am moderately in control of my diet. I would like to be in very good control but find it difficult to stick to such a strict diet. Does anyone have any suggestions to help with this problem? I would greatly appreciate it. Righ now I feel I have eaten a little to much phe because I feel like my head is kind of cloudy and I feel unmotivataed.


    My name is aaron and I have recently have been having trouble with panic moments and nervousness I am on meds to control these symptoms I have been back on the diet since about midApril and have noticed a difference in mood and energy b/c when I was off the diet I was moody and tired all the time.. Iam having trouble staying away from the starches no problems about meat and dairy but I try to keep some of the food products from SHS which do help but sometimes even that is not enough to keep me full and satisfied after a meal.. I strongly suggest to stay on the diet as from what I have heard we are more likely to suffer from altzheimers disease. I don’t know for sure if that is true but if anyone has any input on that it would be appreciated.

    Avatar of Jodi

    Hey Everyone!
    I have been off diet for the past year and a half, and last Friday (It’s Wednesday now) I went back on diet seriously.
    I feel much better. Not sad, lots of energy, sleeping less, happy, no panic attacks, no obsessive thinking, clear thinking, and I’m motivated to stay on track.
    I work in two nursing homes, and couldn’t keep up with the work, and couldn’t organize my time well.
    I have also lost 8 lbs in the past two weeks. Partly from not eating, (too stressed and too hot), but also from going back on diet.
    That happened to me in 1998 when I went back on diet. I lost 30lbs in two months from being totally off diet, to going totally on diet.
    I am trying a new milk right now made by Applied Nurtition–Phenylade 60. It’s vanilla, thin texture, really good. No fat, 300 calories, and fortified.
    I’m really excited about being on diet, because I notice a considerable difference in my mood and energy level.
    When I was off diet, I would sleep anywhere from 9-14 hours a night, and now I sleep 6-8.
    This time, I’m going to do it.

    Avatar of petrina

    good on ya girl…keep up the good work!! it is really tough but you can see the benefits already…sure that is motivation in itself! i am being really strict at the minute too…wanna try to get levels under 250 but am 465 sooooooo just gotta keep trying!! good luck!!!

    Avatar of Edward

    Wow. Reading some of these makes me wonder. I never realised when I made the decision to come off of the diet I would suffer with panic attacks and agoraphobia. 6 years down the road and it really sucks. Had I realised it was connected to PKU I would have gone back on the diet sooner, I hope it is not too late. When I came off the diet I put on a LOT of weight. I think going back on the diet will help me be more healthy in general. As for the psychological issues, jury is still out on those.

    Avatar of Tracie

    :rolleyes Hi Soundwave, n: My name is Tracie and i am really new to this sight,but finding every experience very helpful.
    I too myself am going back on diet after being off for 10 yrs. nOnce you’ve started your formula or pill intake give yourself time. nYou will adjust.
    I suffered from PKU seizures,panick attacks,headaches,depression OMG Mood swings(just ask my poor husband ).
    I was so bad that i was surprised he did not ask me to get out.
    I remember eating 1 time corned beef.
    Needless to say i got hospitalized, and it as not good at all. nHang in there it does get better. nJust make the right food choices. nYou can do it…….

    Avatar of Edward

    Thanks for your response. I had a long talk with the doctors before I made the decision to come off of my diet at 19. They told me if I came off I should eat “normally” meat, eggs, fish, you name it, because my body would need the vitamins I guess. So I think I ate too well this past 6 years. My favourite food is spaghetti bolognese, so I’m guessing I haven’t done myself any favours! haha. I will adhere to your advice and have started eating better. I am not back on the forumula yet. I need to see the doctors here about it, but I mentioned PKU and they pulled out the probes! I guess I’m the first they’ve had! Way to make me feel like I’m from Krypton (cept without the powers!). Have a good day everyone!

    Avatar of Tracie

    Don’t worry soundwave i was even diagnosed RBBB(Right Bundle Branch Block ),but i corrected with the right food choices.
    I’m not gonna lie somedays are better than others especially when i go out to dinner with my family.I tend to get mad quietly,cause i get jealous. nThey can eat whatever they want and as for myself i need to talk to the chief to make sure he or she prepares the food correctly sometimes its easier just not to go out. nAnd when i do go out when i get home i am depressed and i go into the shower to cry.
    I don’t want my husband to worry.( any advice )
    Thanks for listening, nTracie

    Avatar of Snuffles

    I am a pku Adult and I have been off the diet…..then I fell crook and had to be put back on the diet again, because of crankiness,bad temper agression and throwing my meals and  not eating probably. 

    Back on it and lost too much weight without meaning too and got hospitalized for few weeks as I subtancail hair loss as well and always feeling cold! My Pyn levels are always approx  hitting the 1000-1500 mark!

    Not proper level as I asked the PKU speicalist what the normal phy levels were, approx. 880. From what I know, they are still resreaching  the issues mentally and for the body's digestive  how it takes can the long period, the normal diet   constantly test  the body. Need more info, I suffer from alot health alimnets and mental issues thanks, to been picked up late, It stuffed up my dome. [dome=head]

Viewing 15 posts - 1 through 15 (of 16 total)
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