Phenylketonuria / Phenylalanine

AngelsKisses75
AngelsKisses75 Posts: 595 Member
edited September 24 in Food and Nutrition
I was told many years a go, as a young child, that I needed to be aware of items containing Phenylalanine. Of course getting sick the first time was not enough to convince me, no no no! So I kept pushing the outer limits. Some doctors even suggested that I stay clear of the foods that contain 'natural phenylalanine'. Due to my diligence and curiosity I have found that I personally have not noticed a side effect from eggs, nuts, bananas, or even meats ... unless you count the sensation of feeling your hair grow. *giggle*

Okay all joking aside I have a huge problem with anything that has that lovely little warning: 'warning: Phenylketonurics - contains phenylalanine'. I have landed my self in the ER with diet soda before. Yes doctors get really upset when they find out I have been warned in the past. I had one yell at me for being suicidal! Oh now that made me cry. I wasn't trying to kill my self I was trying to lose weight! Since that day I have heeded his warning and read labels carefully, and been almost paranoid with not knowing for sure.

So this brings me to the problem as of lately. I cannot / will not to chew gum. Go ahead. Read the packs of gum you have, check the store. It is frustrating!! *sighs* As I try to work around this I always have it staring me in the face, and I hate it. Don't get me wrong I am ever so thankful that I can eat Almonds, Bananas, Eggs, and Meat (my apologies to the Vegans, Vegetarians, and Animals out there) with out the effects I have suffered with the not so natural stuff.

I know I am not alone on this. I have googled, and read so many various blogs, forums, and websites in general I feel less alone. Now as I am starting watching my diet (no not in the evils sense, diet as in my usual intake of food and fluids) thing with a fresh start and long term goals in mind this is staring me in the face. I want to hear from others that may be facing the same issues. I want to know what has helped you, or helps you get through this.

Replies

  • newmesmith
    newmesmith Posts: 8
    I wasn't aware of the dangers in this until I googled it myself last night after noticing diet sunkist sparkling lemonade contained this. I will not be drinking that anymore
  • doublexhelix
    doublexhelix Posts: 199 Member
    I am neither PKU nor have I known anyone with PKU, but thank you for sharing!

    In my biochemistry class we have been talking a lot about PKU and why they screen newborns for it. It is really interesting for me to hear that you don't have much of a side effect from the natural sources. May I ask when you started eating natural phenylalanine? I am curious because we learned that PKU causes a build up of phenylalanine because it cannot be converted to tyrosine (another amino acid) so the body converts it instead to other phenylalanine derivatives, which can cause affect mental development, hence why doctors discourage eating phenylalanine for young kids. We did also learn that as you get older, that you can reintroduce phenylalanine into the diet, because your brain isn't developing the same way and it is not as detrimental.

    Basically, I was just curious if any of that is similar to your experience? Feel free not to answer, if I am being a little too nosy! Or if you prefer to message me privately. I am glad to hear you are able to eat some of the foods more freely at this point!
  • LaurenRose2011
    LaurenRose2011 Posts: 86
    I hope that you are not trying to say that phenylalanine is overall a dangerous substance. It's not. It's very likely due to a specific medical condition, "phenyllketonuria (PKU)", that you cannot metabolise phenylalanine into tyrosine. Instead of breaking down into tyrosine your body keeps accumulating the phenylalanine and changes it into phenylketone (phenylpyruvate). However, the majority of the population does not have PKU and has no need to worry about phenylalanine consumption. :)

    Doublehelix: I hope your instructors are teaching that those effects are only seen due to PKU and the rarer THBD. If you're being told that "PKU causes a build up of phenylalanine because it cannot be converted to tyrosine (another amino acid) so the body converts it instead to other phenylalanine derivatives, which can cause affect mental development, hence why doctors discourage eating phenylalanine for young kids," then your instructor needs a bit of a talking to. The accurate way to write that would be to start with "PKU causes a build up of phenylalanine in people with PKU and THBD because these conditions prohibit the metabolisation of phenylalanine into tyrosine..."
  • AngelsKisses75
    AngelsKisses75 Posts: 595 Member
    I hope that you are not trying to say that phenylalanine is overall a dangerous substance. It's not. It's very likely due to a specific medical condition, "phenyllketonuria (PKU)", that you cannot metabolise phenylalanine into tyrosine. Instead of breaking down into tyrosine your body keeps accumulating the phenylalanine and changes it into phenylketone (phenylpyruvate). However, the majority of the population does not have PKU and has no need to worry about phenylalanine consumption. :)

    Doublehelix: I hope your instructors are teaching that those effects are only seen due to PKU and the rarer THBD. If you're being told that "PKU causes a build up of phenylalanine because it cannot be converted to tyrosine (another amino acid) so the body converts it instead to other phenylalanine derivatives, which can cause affect mental development, hence why doctors discourage eating phenylalanine for young kids," then your instructor needs a bit of a talking to. The accurate way to write that would be to start with "PKU causes a build up of phenylalanine in people with PKU and THBD because these conditions prohibit the metabolisation of phenylalanine into tyrosine..."

    No I am not saying that this is 'in general' a bad thing. I am sorry if my post comes off that way. That is one of the reasons I posted the title the way I did: Phenylketonuria / Phenylalanine. I have an allergy to it that is on going. I do have it under a doctor's advice that this is what landed me in the hospital so essentially yes for me, and most all that suffer Phenylketonuria, it is a dangerous substance, even in to adulthood.

    Though that is a matter of opinion. There are people that believe otherwise. To each their own.
  • doublexhelix
    doublexhelix Posts: 199 Member
    I hope that you are not trying to say that phenylalanine is overall a dangerous substance. It's not. It's very likely due to a specific medical condition, "phenyllketonuria (PKU)", that you cannot metabolise phenylalanine into tyrosine. Instead of breaking down into tyrosine your body keeps accumulating the phenylalanine and changes it into phenylketone (phenylpyruvate). However, the majority of the population does not have PKU and has no need to worry about phenylalanine consumption. :)

    Doublehelix: I hope your instructors are teaching that those effects are only seen due to PKU and the rarer THBD. If you're being told that "PKU causes a build up of phenylalanine because it cannot be converted to tyrosine (another amino acid) so the body converts it instead to other phenylalanine derivatives, which can cause affect mental development, hence why doctors discourage eating phenylalanine for young kids," then your instructor needs a bit of a talking to. The accurate way to write that would be to start with "PKU causes a build up of phenylalanine in people with PKU and THBD because these conditions prohibit the metabolisation of phenylalanine into tyrosine..."

    Well that statement would be redundant, because PKU is the disease that would cause the buildup of phenylalanine, and yeah nobody without the disease (due to a variation at a certain gene) would have those results. My instructors are clearer than i am, apparently...
  • LaurenRose2011
    LaurenRose2011 Posts: 86
    doublehelix: I am soooo sorry if my post offended. I totally misread your post, and therefore my post is seriously flawed. lol Forgives? I will definitely try to read better in the future. :( how embarrassing
  • bm_stclair
    bm_stclair Posts: 26 Member
    Interesting and very thorough explanation of Phenylketonuria / Phenylketonurics by Dr. Tracy L. Beck, Ph.D.

    http://www.astro.sunysb.edu/tracy/whatis.html

    If you dont care to cut and paste the link (and I understand why you might not) just google "phenylketonurics". You'll find a few links that'll tell you all about it.

    Bottom line is that it is kinda like Diabetes in that it is a condition that SOME people have. It should also be mentioned that it is a rare condition. In this case people who have PKU have to avoid high protein foods as they contain the amino acid Phenylalanine. As was suggested earlier, if you have it you likely already know you have it and have been on a low protein diet for all or most of your life.
    I looked it up because I saw the warning, like others, on a diet soda can. It seems that aspartame contains high levels of Phenylalanine. Hence the warnings on soda, chewing gum, sugar free etc, etc.
    Now the good news... I just saved money on my car insurance!!!! :laugh:
    Just kidding!
    Actually the good news is that a lot of diet drinks (including one of my favorites - Sugar Free Rockstar) are switching over to sucralose (splenda). Yay! No Phenylalanine!

    Now on another subject: OMG am I tired of typing "phenylketonurics". I have to think about every letter as I type it
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