Why You’ll Find This Disclaimer on Every Diet Soda
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- Опубликовано: 8 фев 2023
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Why does every diet soda or pack of gum contain a message about phenylalanine? It's an important nutrient for most people's diets, but the disclaimer is critically important information for people living with a disease called phenylketonuria.
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Sources:
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www.ncbi.nlm.nih.gov/pmc/arti...
www.gimjournal.org/article/S1...
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www.sciencedirect.com/topics/...
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Bi
Hi
what im hearing is, the south united states is generally "dumb af" because they drink diet coke all day :D
I ❤Linode! 😊
Diet soda is just bad for one overall…
Why does she make it sound like diet soda should be a part of a diet?
Quit hating on veggies!!!
My son has PKU and I'm glad I finally have a video I can point people to when trying to explain why his meals are so strange. Thanks for this!
I hope you don’t mind me asking: is the condition extremely sensitive? Or is it possible for him to have something with phenylalanine once in a while?
@@bleh329 I don't mind at all and will probably explain more than you asked for.
It's sensitive. So, the primary sources of phenylalanine (Phe) that we watch are aspartame, as well as any and all natural sources of protein. When aspartame (from diet soda, sugarless gum, etc) is digested, it produces Phe. I have no idea how much Phe is produced from aspartame, but we treat the limit as 0. No intake at all. We essentially treat it like poison.
Protein intake is closely monitored. When we're not fighting insurance, he has medication called sapropterin dihydrochloride that allows him to eat something more closely resembling a normal diet. For example, he can have a slice of pizza once a day if we are careful. The limit is around 20g. That might sound normal for a small child, which is great news for him, but going over this is basically poisoning him. That's not the case for anyone else, as our bodies can manage excess Phe without issue.
The severity of the condition varies, and I have met other families who have to filter certain vegetables (green beans, sweet potato) and candy (you can google a PKU-friendly candy list for halloween) because they contain too much protein. It also comes with monthly blood draws to monitor tyrosine and Phe levels.
What it is not is an allergy. He's not going to get hospitalized if he accidentally eats or drinks the wrong thing. The symptoms manifest over time. When trying to provide perspective, I try to liken it to another condition that the general population tends to have a somewhat better understanding of: diabetes. It's far from a perfect analogy, but protein is to PKU what sugar is to (Type 2) diabetes.
Also, because I am constantly asked -- he cannot outgrow it. It is lifelong.
@@lonelytraveler8 I've made it to 21 basically the same way. His limit's higher than mine ever was, at 15g when I was growing, now 12g.
As someone cursed with bad genes because of their grandfather being exposed to plutonium i have a fascination with genetic diseases, do you have PKU? Will your son pass it on to his his children if he chooses to have kids? What if he chooses not to have children because he carries the gene?
Sorry if these are too personal I just find genetics and genetic disorders intriguing.
MY TIME HAS COME! FINALLY THEY'RE TALKING ABOUT PKU I HAVE BEEN WAITING FOR YEARS!
Hopefully medicine comes soon so your could enjoy beans
@@LillyP-xs5qe Oh plenty exists. Kuvan and Palynziq are useful, but... arduous to take.
Bless your heart. Damn.
This chemical is actually BAD for all of us.
So i misunderstand how are you able to create the molecules phenylalanine is essential for (like dopamine) if you cant digest it. do you just need to consume extra tyrosine?
I work in surgery and anesthesia recovery, and we do a lot of c-sections. For those of you wondering when the test is done: It's anytime right after delivery and before discharge home. There's a rough paper index card with five circles drawn with dashed lines at the bottom. I hate these things. Typically, we use a heel lancet to poke the newborn's foot and try to milk enough blood out to completely fill all five circles without smearing or rubbing and hopefully without having to poke the baby again; the blood has to fully saturate the paper, or the test is rejected. (A neonatologist I worked with showed me how she would usually just start a super small IV on the baby's hand, which worked so much better.) That card is sent off to a laboratory, and the results come back within a week: Normal, PKU, Inconclusive, or Sample Rejected. On behalf of all other nurses: I am so sorry we have to poke your babies, and none of us (parents, infant, medical staff) are happy about doing it, but I swear it's for an important reason and please don't punch me if I have to poke your baby twice because they're so good at NOT bleeding. Thank you!
Also, the reason it's a card: These tests, as mentioned in the video, are done on all newborns in the US and many other countries. It doesn't take a lot of blood and it doesn't have to be fresh. Once the card is prepared, it's viable for testing for at least 10 days, if not waaaaaaay longer; I honestly don't know the shelf life of a PKU card except...pretty long. There are a number of specialized labs that can process these cards and, to my knowledge, many smaller local labs can't (but lab techs, correct me if I'm wrong!). So, they're shipped out, these specialized facilities process the huge amounts of them, and return the results. It's mostly a time and cost issue: A card is very cheap and easy to ship, stable to process for a few weeks, and isn't a technical biohazard because it's dried blood as opposed to a serum tube, so it can be sent via regular mail rather than a medical or laboratory courier. This also makes it more accessible for patients who are opposed to doing a delivery in a hospital, so they can still do prompt PKU testing at home.
This is absolutely fascinating and something I knew nothing about. Thank you so much for sharing your knowledge. And for doing good work with the babies 😊 (and all your non-baby patients as well).
You poke them to protect their lives. My daughter had this done, and despite her crying, I was okay with it when told why. I had a coworker with mild PKU. Nice gal, really liked her.
As a NICU nurse I will say this- babies often cry more about getting their temp taken in their armpit than a 1 cm slice in their foot for blood draws. Such troopers and way tougher than most adults ❤
Thank you for being a trooper, and getting that blood so the test can be done. I remember my babies being poked in the heel in the hospital, and honestly, I think they yelled more about their first bath! Thank you again, for the lifesaving work you do everyday.❤
Before they fully understood PKU my brother was born in the 1930’s with it. Normal at birth but within months he was severely brain damaged. Glad some progress is being made.
Damn :(
I am so sorry. ..I have pku as well ..was born in 59 and wasn't diagnosed till 61 . I do better than most in my situation..but have a few issues
The fact that its not even immediately evident, but slowly degenerates the mind is just sad man.
*offers a virtual hug*
@@bttrflygal *virtual hug*
My son was born with PKU less than 30 years ago and was missed in newborn screening, even though his PKU test was positive. He was finally diagnosed at age 3 years after suffering the deleterious effects of untreated PKU. The diet is hard but miraculous and he has recovered a great deal more than anyone ever expected he would. Thanks for telling some of the story.
If you don’t mind could you share what the diet looks like? Can he occasionally have meat or is a not all type thing?
That must've been incredibly tough on him and your family! I cannot imagine how scared y'all must've been for him before the diagnosis. Here's hoping he can benefit even more from the new treatments coming out
The Mexican warning translates to something like
"These beverages should not be consumed by PKU sufferers, contains Phenylalanine"
That is both at the same time more informative and have many Mexicans worrying what is PKU and if they can get it. (I know you are born with the problem or not, but to many people don't know about this disease).
It seems it's either having the label explain that it's only a problem if you have PKU and then people panic about "catching" it, or there's no explanation, people see a long chemistry word and assume it must not be good in general. Gluten free diets were very popular for a while among dieters who don't even have a gluten allergy. I honestly don't know where all this fear comes from, myself.
in the US it states “Phenylketonurics: contains phenylalanine” which is brief yet informative in my opinion.
@@Manticorn
Dihydromonoxide. Thousand die of it every year in the United States. Mostly children.
I've never seen those warnings in Mexico. In which products did you find them?
@@Orsan_ Diet sodas and artificial sweeteners.
I HAVE PKU and I've been on the PAL enzyme medication since last February (it can take over a year for the body to use the enzyme for its intended purpose)! I ate tofu for the first time in my life last week! THANK YOU SO MUCH SCISHOW !!!
Way to go! Good luck with your future treatments and food goals!
Why was tofu the thing you were excited to eat? Just out of everything I think tofu is a funny chose
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YESSSS slay
@@first782 If you've never been able to eat it before without dire consequences, it's a big deal to finally have that ability. Doesn't really matter what it is. It may not seem like it when you've had the privilege of taking it for granted your whole life, but freedom to eat what you like, or not, instead of having all your choices dictated to you is priceless.
As someone with PKU, thank you for talking about it. It doesn’t get talked about enough.
We have both been waiting for this video for years, haven't we?
It should be covered way more
@RacecarRik I guess people dying isn't a big deal for you. Good to know. You didn't have to pad it out with fluff, fly that ableist flag up high 👍
@@MarshyoftheBlobs what are you talking about? Why are you attacking me for no reason? Weirdo
I knew a girl with PKU. But her family was working class and she couldn't afford enough supplements or PKU friendly foods on her 2 fast food jobs salary and her family were too poor to help, and the measly amount disability gave her didn't help enough either so she died of a heart attack brought on by malnutrition at 26. This was in Canada btw, were we have far more supports for disability and health aswell as a higher min wage than many *cough*US*cough*. Poverty really is the number one killer in the world.
disability in this country is a joke, i got denied because TECHNICALLY i’m able to work (nevermind the fact that i would be incredibly miserable the entire time and working would deteriorate my already deteriorating health)
Such supports as MAID too. :(
Hank Green just did a post on Tuberculosis being the number 2 killer in the world, a world where we can cure it but the people who need it can't access it and afford it. We are a messed-up species.
That's rough as. I thank a lot for Australia having a safety net for the sick. It's not amazing by some other countries standards but makes me realize I would have died many times over if I had lived in the US for example as I have never been able to afford health insurance and I have had the worst luck with health issues, one thing after another and always rare conditions requiring countless expensive test procedures often with no conclusive results.
Well now canada would just tell her to kill her self.
Years ago I was a support worker for a guy that was born a “PKU baby”. neurological damage was already done by the time he was diagnosed (he was born in the late 50s-early 1960s).
The thing that I really remember was when his sister was starting her family, during her pregnancy (in the late 1980s) she was told to consume certain sweets/lollies/candy as part of her pregnancy diet and as a way of protecting her unborn child.
She was even interviewed by the national newspapers at the time which for some reason made a big deal about her being told to eat peppermint drops - a soft jelly like candy in the shape of a leaf (popular in Australia).
His sister stuck to this diet and her baby was fine. But I never ever forgot about PKU. It was absolutely fascinating watching the video today, thank you. It answered a lot of questions I’d had in the back of my mind had for years
I’m curious; in what way did eating these particular sweets protect her unborn baby? I’m trying to parse it, and am scratching my head.
@@GrumpyOldFart2 No dang idea. I've read about the importance of folic acid, but eating specific candies is just weird. The top comment is just so Australian.
You said lollies.. lol.
@@GrumpyOldFart2 presumably they had lots of phenylalanine in them, so they theorised that eating that during pregancy would protect against an inability to process it after birth?
I'm not sure, I'm an Aussie & I recognise the name "peppermint drops", but I thought they were a hard lollie, not a soft one. The leaf shaped soft ones I remember were called "spearmint leaves", but I dont' recall either having artificial sweateners, I dunno, could be a different state with different lollies, or OP could be mistaken on the name & I could be mistaken on the additives in them, no idea. Extra chewing gum is the main one I remember from back then that had artificial sweetners
PKU is genetic disorder. There is absolutely no way to prevent it. This whole candy diet thing has nothing to do with PKU.
As someone in the newborn screening (NBS) field, I can attest to how important it is for individuals with these disorders called inborn errors of metabolism (IEMs) to be diagnosed early. Depending on the country, NBS screens several disorders so make sure to always avail it as this can be the difference between early diagnosis and treatment or retardation and death for many newborns. IEMs include PKU which is difficulty digesting phenylalanine; Tyrosinemia which is the same but for tyrosine where some types esp type 1 can lead to liver failure at a young age (often 2 years); maple syrup urine disease where it is as it says that a symptom is that the urine smells sweet and is very deadly if not diagnosed early, and so much more. If you or you have a loved one who is pregnant, please avail of newborn screening if possible.
Thank you for putting up with all the screaming (both from newborns and parents) you've put up with.
PKU adult here, known since birth. Thank you.
Back when aspartame was commonly known as Nutrasweeet, diet sodas said "PHENLYKETONURICS: CONTAINS PHENYLALANINE"
this is the warning i remember.. it always seemed so cryptic!
Yup, I remember that warning very well as a kid. I asked my parents about it, and learned the basic bit: "It's a genetic disease that keeps your body from processing that."
I don't think I know anyone offhand who has PKU though.
When I was in my teens a friend had a nephew with PKU. I helped babysit him a few times. The diet was sooooo strict! Completely understand the warning and love this video which explains the genetic issue. I’m still amazed by how few people have heard of PKU especially considering how devastating it is if undiagnosed.
I never knew this disorder existed and I imagine it must be hard to keep to such a strict diet. Thank for informing us. By the way, really interested in seeing more of Savannah.
Savannah rocks my socks!
My roommate in college had PKU. Her diet was always so unique and she showed me this super expensive medicine she took.
Kuvan? It tastes disgusting but at least we can eat something with some protein every now and then.
This is so crazy to see so glad this is getting covered, my younger sister has PKU and being the older sibling and having a single mother I often helped feed her and it was very important for me to understand what she could and couldn’t have, I remember being 10-12 and constantly checking every label for every piece of food she ate.
Massive respect to y'all with PKU.
I had a coworker with PKU who described it as being “allergic to protein.” I finally understand it better, thank you!
I worked with an 8th grade student who has PKU. It’s very difficult regardless, but especially at that age she was just so frustrated by the restrictions and the control it had over her life. I really hope more viable solutions are created and made accessible soon.
Hey yeah, I worked at an adult foster home and cared for someone with pku, and it was an eye opening experience. I had to prepare their meals, and just learning just how much they can’t eat is just mind blowing
Thanks for this, I have wondered for a very long time what all the phenylalanine disclosure was about.
Hugs my Heart goes out to the people dealing with this!
My wife and I are both Registered Nurses. Back in nursing school, I learned about PKU, but in my 25+ year career, I have never dealt with someone with PKU. I do consume an unhealthy amount of diet sodas and have long noticed the PKU notice on the cans. It still didn't mean much until this past September, when my son was born. Despite no known relative ever having PKU, we apparently were both carriers of the recessive trait and our son has PKU. When I try to explain it to others now, I typically point at the diet soda can that is often in my hand and point out the notice. I go on to explain the metabolic disorder until the person's eyes glaze over with information overload. At the moment, his diet is relatively simple, as he is only receiving formula and I just have to maintain a ratio of PKU and non-PKU formula that adjusts weekly based on his blood phenylalanine and tyrosine levels (and their ratio). He is nearing the stage to progress onto solid foods and his diet will become a lot more complex.
I learned this in my genetics course. Really interesting, and I think you’re doing great work spreading info to the laypeople! I didnt know about this until my class, and I’m interested in rare diseases
Beyond being interesting, but why is it good to spread it to laypeople?
There are enough conditions of various kinds that people will always not know about something.
@@SioxerNikita I would literally pay money to re-explain my PKU *one* less time each year to random people who won't shut up about my inability to eat meat.
@@HypernovaBolts11 And other people with other rare conditions would also like that...
But you know what? Human beings can't learn about every single condition that exists on this planet. Not even well respected established Doctors can do that.
There are far too many... FAR FAR too many rare conditions.
But one thing I've learned over my life, if you are different, you are going to have to deal with it. People will be curious. People will like to know... So get over it, you aren't special in anyway. When I go downtown a quarter of my night is going to be spent explaining various problems I have, because people aren't used to them either.
The bulk of the products the company I work for makes are for industrial or research use only but one of our product lines, the AAA's (Amino Acid Analyzers) is approved for clinical use. The example we always give internally is for metabolic testing of infants and how early detection of metabolic disorders has such a huge impact on infant mortality and quality of life.
As a diabetic, I have read those labels my whole life. I knew there was a condition related to it, but this is the first time I've had it explained. I thought a diabetic diet sucked... Man, PKU sufferers have it a lot worse!
There is no single diabetic diet though. It's trivially easy to avoid simple processed sugars for the most part, but to actually stay strict enough to not need daily meds is a major hassle. But at least my type 2 screw ups will just take my eyesight, not life.
I see it as a chance for "them" to have a healthy diet where some things are denied.
@@patrickmccurry1563 I was dx'd type 1 in the 90s, and before humalog and lantus insulin, even the type one diet was ridiculous. I had to have specific servings of protein, carbohydrate, and fat at each meal. Varying that at all could have been deadly, because of the timing of when the old regular and NPH insulins kicked in. As a kid with adhd-induced sensory issues, there were so many meals that were absolute torture for me (and again, early 90s, so my parents were the "eat what's on your plate because we're not making anything special for you" type).
It's not always been easy. Things have come a long way since then (but unfortunately so have insulin prices, but that's another story for another time!).
@@patrickmccurry1563 no avoiding daily meds for us T1D's though. Insulin pump for the last 30+ years, now with stage 3 kidney disease and retinopathy that has led to cataract surgery. A "diabetic" diet means avoiding most carbs, and that is not at all easy for me. Take away all the meat you want - I want chocolate and gummy bears!
Oh you have no idea how bad it can get my friend. I know someone who is diabetic, PKU, alpha gal allergy syndrome. You would think PKU would mean the alpha gal allergy didn't matter but alas, carrageenan is PKU on, alpha gal bad.
Have not seen you doing any SciShow videos before but I really enjoyed your delivery and presentation. Great job! 🙂
I think Savannah has been on scishow space? They are an excellent science communicator, I’m glad to see them crossing the sci-genres 🎉😊
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Really great host! I’ve seen them in shorts but this is the first time I’ve seen them in a regular video. Great energetic delivery
No mention of AKU? No neurological issues, but can lead to cardio issues as well has darkening of skin, the whites of eyes, and various joint/cartilage issues. Also, it causes your bodily waste (including sweat) to turn black upon exposure to air.
thank you for this information! I had looked this up a while ago and never really understood it but this broke it down perfectly.
Also excited to see more of Savannah!!
Hi I'm Nicholas, I have PKU. I am 48 years old, I was one of the first to be tested in the mid 70's. I think I am the 5th oldest case in Australia (don't quote me on that). Thanks for info I learnt a few things today. I found the formula XP Albumaid that I was on in my adolescents to be like a body builders formula and brain food In one. I would work out and exercise my mind with obsession. I accomplished things that were not deemed humanly possible, I had a massive metabolism with less than %4 body fat, I was able to achieve anything I put my mind to with ease. Then the government took the XP Albumaid off the market. Oh how I wish I could afford to make my own. Thanks for the video. Bye
What are you taking instead? I know from personal experience switching formulas is a... difficult process.
SANTA!!!! i didn't know you had PKU
The Steinbeck line was fantastic!
I can only imagine how PKU affects some people's mental health. Having to go through all that while you watch others around you just stroll around all la-de-da would really make some people sad.
Horribly, especially when you're super depressed and want comfort foods you can't have or really don't feel up to taking a bunch of pills every night. It's harder that most people don't know or understand any of it. They didn't even get into the brain fog or how PKU can have almost identical effects as ADHD with none of the support system or medications.
@@clarelewis4708 I suspect the bunch of pills you're referring to is either to treat a bouquet of comorbid conditions, or Kuvan, since it comes in such small doses. I'm familiar with both.
Doesn't help that it often tastes awful. Or if you have SAD. WinterBrain™️ is usually unkind. I use Gluten Free Pretzels as a comfort food, since it's often made from Cornstarch. Throw in some low protein dips, maybe ketchup or mustard. It works...
Was anyone else told Pheny was a stimulant, similar to caffeine?
Literally found out watching this video that it is actually an amino acid 😳
They probably mistaken it for fentanyl.
I believe you're talking about phenethylamines. Read pihkal by Alexander shulgin. Please use responsibly. Have you ever tried any of them like 2c-B?
@@3800S1 Fentanyl is an opioid, which are the opposite of stimulants.
Phenylamine, the precursor to phenylalanine, IS a stimulant, AND an amino acid.
@@codahighland every day is a learning day! Even at 36 I am still learning new things 🤣
It’s a precursor to phenethylamine (PEA) which is stimulating and to Tyrosine which is a precursor for the catecholamine neurotransmitters Norepinepherine and Dopamine. Amphetamine(alpha-methylphenethylamine) is structurally closely related to PEA.
I looked into this disclaimer when my sister was diagnosed with a different metabolic-neurological condition. She can't have caffeine or aspartame, and I was curious on whether or not Phenylalanine had anything to do with it. It doesn't, thank goodness, but it was interesting to learn about something that was so deadly, surprisingly prevalent (in comparison to the disorder my sister has) yet so completely unknown to me.
Good video! Definitely looking forward to more genetic treatments. The moment I heard it was a lack of an enzyme I knew that there was going to be genetic treatments and bioavailable injections. I'm glad that it can be treated! My sister's disorder is an overproduction of an protein subunit that results in brain damage and ataxia, so it can't be treated with supplemental injections, but I am getting my degree in biotechnology to help work on disorders like these to improve quality of life for these types of disorders. Thank you for telling us about this disorder!
My teacher didn't go into detail of the diet that PKU patients are stuck with. Thank you for satisfying my curiosity
I was curious about the disclaimer and watched the video. I watch most SciShow videos but this was the first I've watched with Savannah. They are AWESOME! More with them, please!
i worked childcare and there was a little girl and boy who where siblings. i'm not sure they had PKU, but they at least had one of the related protein processing issues, they brought a special snack everyday, mostly fruits and i think special crackers?, and a special formula they had to drink with their snack that looked like a protein shake. they couldn't eat the food we gave the other kids, or trade their food with any of the other kids.
this was almost a decade ago now, its wild to think they can't drink diet soda of all things, i usually think of soda as being so devoid of nutrients as to be edible by everyone.
my brother and i were both diagnosed with PKU at birth and that was exactly what we had to do/my mom had to tell our daycare workers. I remember they could only give me the icing of the that cupcakes another kids mom has brought in for their birthday because the batter itself had too much protein. thank you for caring for them.
@@alexandriahall2843 they where surprisingly good about it all, considering this was preschool level childcare. They did a lot better than some of the other restricted diet kids we had. I think their parents where really good about explaining it, cause the older sister understood that the other foods would make her sick, and she had to drink the formula even if it tasted not great, and she helped make sure her brother drank his.
I feel weird taking credit for taking care of them. Most of what I did was supervising crafts for all the kids and like, making sure no one got in trouble or hurt themselves.
Patient and understanding childcare workers mattered more than the other students did to me. Thank you.
I was expecting a video about how fears over aspartame are largely over blown but instead learned about something I've never heard of. Good job SciShow! Speaking of conditions that restrict diets, have you guys ever thought of doing a video on Prada Willi Syndrome? My sister had it and a lot of people have never heard of it (including many doctors).
I have PKU and it makes me SO happy someone is finally talking about it!!
Savannah you have a lovely, 'radio/podcast/host' voice..I could listen to you talk about anything.
I never knew about this before but I appreciate the awareness for people who have PKU.
Maybe 'cause I'm older...but this video's title and intro amused me a little. Here in the US, I've always seen the warning simply stated: "Phenylketonurics: Contains phenylalanine." Coming from a family with various health issues from Diabetes (types 1 & 2) to food allergies, I read the warning and thought, "Hm. There's something in here that's dangerous to people with a certain disease. I'm glad they put that here."
AND, this began when diet pop started being sweetened with Aspartame (which clued me in to the fact that aspartame is what contains phenylalanine). So it was never a baffling warning. Do other places have it as just a random warning? That seems so weird.
This video did help me know what phenylalanine is and what phenylketonuria is. I appreciate that, and I appreciate that people with that disease must really appreciate it being talked about (as seen in the comments here).
Interesting, in the UK its written as "contains a source of phenylalanine", making it sound like a nutritional selling point rather than a warning.
Their shirt is neat!
i have this, i find the most annoying tging being the trend of packing vegan foods with soy to increase the protein content, cuz it means i cant even eat the vegan meat options, its very hard to diversify diet because all the cookbook stuff has to be made straight from ingredients, which of course can take a long time. add to that the fact i have to swallow whole 48 pills, 3 times a day, to not become a vegetable. i glad atleast it seems i can get genetic therapy soon so i might be able to order anything other than fries at mcdonalds lol
also about PAL. its sold by an american company and isnt actually widely avalible, for example my dietician talked about it back in 2016 and ive not heard anything since about it.
@@gordonfreeman9641 PKU buddy! i've been palynziq for the past year. BioMarin is the company. ASK YOUR DOCTOR !! I received financial help with it and i had.... OATMEAL... for breakfast today !!! life changing. I've had the same frustration with vegan foods. drink your formula and do what you can :) science shall come to our rescue
48 pills. Kuvan?
I once phrased the conundrum you're describing as "starving, eating myself stupid, or paying for the opportunity to keep going if supplies are good".
Dam, that would be super frustrating re the vegan thing, especially since I'm guessing that with meat being a problem, vegetarian options have probably been a big part of your diet in the past. How's pea protein? That seems to be a growing thing for vegans, trading soy for peas, so if you can eat them, that would be good, but I'm guessing they will likely also be banned for you.
Re the mcdonalds fries though, aren't potatoes also a problem? I thought that's what the video said?
Anyway, good luck in getting that genetic therapy sooner rather than later!
Great host, thanks!
I like this presenter, they speak in a nice casual way like we're friends, while still being very well-spoken.
Literally just learned this in lecture today LOL phenomenal timing Scishow :D
Or you could say, phenylaminal timing.
@@ishaanupreti6438 PKU approved joke giving this our official stamp
@@alexandriahall2843 Lol. Thanks.
@@alexandriahall2843 Seconded. Double PKU Approved. We will talk about awards at our next meeting.
Already new this but but many aren’t aware. Babies in the US are tested for this at birth! So they can be raised safely!
knew*
Once again, SciShow tells me info I didnt know I wanted to know. Thanks guys!
It’s so interesting to know answers to questions I didn’t remember I had, now I feel bad for people with PKU, hope they can get a good treatment.
Also, sick shirt!!
Fun fact: one of the first "tests" to see if a child had PKU was to smell them - if they smelled like mice, there was something wrong.
Yeah the higher the level the more musty the smell
How long has that Steinbeck joke been waiting in the floorboards for just the right moment?
I've always wondered about this. Thank you.
I love all of you guys at scishow thanks for being awesome
I don't think I have PKU. When I was a kid, I went on a diet when Aspartame first came out and used it to substitute for sugar. Within 24 hr. I had hives everywhere I itched like crazy at first then it got worse. I felt horrible. It affected all my organs in a very negative way. Kidney's, bladder, liver, gallbladder, everything went haywire for a few days.
I was never able to find out exactly what was going on. I was living in a remote area and wasn't able to go to town for a few days because of a winter storm. When the weather finally cleared and I could fly into town, the doctor said the only way to find out what happened would be to recreate the problem. . . . . (This is why I don't like doctors. Freaking sadists.) I said "something that!" and went back home.
Since, I have just stayed away from it like the plague for the last 40 something years. Has anyone else been negatively effected like this from Aspartame?
It was probably a coincidence. The doctor was right
I started noticing bad effects from diet anything a few years back, and cut them out 100%. Feeling better ever since. This stuff is poison.
@@ManderSeis lol no. OP's symptoms are a classic allergic reaction and the doc would have known that. Aspartame allergies are not common, but hardly unheard of.
Yeah, no. You definitely don't have PKU. You would have much more trouble typing if you did.
Jeez. That's terrifying.
Welcome, Savannah! I loved the energy in your presentation and I hope you're doing more, soon, because you did a really kickass job.
Wow! I've worked in flavour houses for a considerable part of my working life, and covered such roles as Flavour Applications and Quality Control. As FA technician, I used to have to make up samples of various beverages, including the so-called 'Diet' ones, and as QC, was involved in testing fruit juice compounds that were made on site for soft drinks companies. Part of that work was measuring the quantities of artificial sweeteners in those soft drinks compounds using something called 'High Performance Liquid Chromatography', but, other than making sure the levels of the sweeteners fell into specification for the juice compound under test, didn't know why.
One thing I did note, and always struck me as odd, was that the tiny container of pure Aspartame we used every week to make up control and calibration solutions for the HPLC, also had this warning about containing a source of phenylalanine on it. Odd, because no-one, not even the sweetest tooth would want to eat that much of the stuff in one go.
It's been a while since I did that work, but every now and again I've thought about that warning, especially as here in the UK, in an attempt to cut the amount of sugar we all eat, all soft drinks now have a mix of sugar and artificial sweeteners, unless they are either 'premium' soft drinks or imports from abroad. You've now solved a 30+ year old mystery for me.
This is my first time seeing Savannah in a video and they knocked it out of the park! SciShow, you da best, as always.
Did not really expected to see so many people with PKU in the comments. Here in Portugal "we" are about 400 with it. Does anyone knows the ratio of this condition in north america and any possible treatments being used there?
Yes there are a lot (maybe friends showed them this video). But there also some comments like "Yeah I get migranes if I drink diet coke, I've pku". Seems like some people don't get the servertiy of this illness and do the same people do with gluten and celiac disease.
Very well explained, nice job Savannah!
Here in NZ we get the Phenylalanine warning on pretty much every cola drink, not just specifically diet varieties.
Wow this is really interesting to learn about! Crazy how many different unique ways the body can stumble.
There are also those of us who get headaches and have other side effects from consumption of Aspartame.
If I want to eat or drink something I have to make sure it's not sweetened with aspartame. Other artificial sweeteners can cause other side effects, so I stick to sugar.
It would be believable if it was one or even one class of synthetic sweeteners. If it's all, its definitely psychosomatic
@@ManderSeis no, aspartame is known to cause issues. personally im okay with it, but some people have side effects.
Holy crap. "These people need to avoid ... everything".
I've long said that we all have issues, some worse than others. This one's a bit of an arse!
Sounds a lot like what I experienced with coeliac disease but way way worse. My heart goes out to y'all.
Ah, finally. I have been wondering about this for ages now. Thanks. :D
Type 1 diabetic here. Can't tell you the amount of fear mongering I've encountered over phenylalanine, meanwhile a mix-up at the drive-thru where I get regular soda instead of diet will cost me a sick day at work at the very least, or a trip to the hospital in the worst case.
I've noticed that people tend to be biased against anything that's relatively new and unfamiliar. Most people are somewhat familiar with diabetes and we certainly know how unhealthy sugar is, but there seems to be more fear around artificial sweeteners.
Can you taste the difference between diet and regular soda?
@@Catlily5 usually, but not always. Depends on the restaurant and the flavor. I can tell the difference between Coke and Diet coke straight off, but Coke Zero tastes the same as regular to me. You can line up diet coke from 10 different places, and I could tell you which one was McDonalds, which one was Wendy's, and which one was poured out of a can into a cup of ice. Get me in front of regular vs diet Dr.Pepper from Chick-fil-A and I have trouble though.
@@zakm0n Interesting. I can taste diet cokes of all kinds right away. Diet Dr. Pepper is the closest. But I don't think I could tell if it is from a machine or not. Taste buds are interesting.
My cousin's sons have PKU. When we took our kids Trick or Treating we'd go through the candy so my son could give them the few candies the boys could have. When I lived in Arizona they did tests on newborns for PKU, but I was surprised they didn't do it in Oregon. There was a commercial about PKU in Arizona as well. Too bad they aren't as progressive in other areas as well.
Wuuut they don't do screenings in some US regions? It's even common in third world countries...
My non-PKU brother and I always did the same thing with our candy. He got all the nut-based stuff, peanut butter stuff, and I got all the Smarties and Twizzlers I could ask for. Mind if I ask what their favourites are? I'm always curious what others have found that fits the diet.
I had a feeling it was some kind of allergy warning, but the details are fascinating! Thanks!
Savannah - love your presentation - you are soooo enthused and your intelligence gleams. LOL (there’s a difference between Mice and Men - good one! i didn’t think kids read Steinbeck anymore, but he’s a very good and important writer - Grapes of Wrath, Cannery Row. . . )
Have a good one. looking forward to more Savannah 😋🌹🌱
1:36 Another disclaimer for food containing natural sweetener - "Excessive consumption may have a laxative effect"
Learned this the hard with with RICOLA.
Glad I’m a compulsive reader and read every single thing on packaging. That disclaimer was the LAST thing I read. After I had already had more than enough for the… effect.
Depends on the 'natural' sweetener. Sugar alcohols can be wicked.
@@kathyjohnson2043 Oh no xylitol...
@@cfromnowhere yep.
I don't have pku, but nearly any low calorie sweetener has a pretty good chance of triggering my migraines-- even stevia etc. I always read ingredient labels these days, bc of the number of things that will at least make me very uncomfortable, though probably wouldn't kill me.
Whatever doesn't kill ya, makes you stronger, right? :)
... only metaphorically lmao. Migraines, heart issues, arthritis, a few other minor things-- all physically impact my ability to do things lmao. But knowing first hand what it's like to have a Real Bad Time has given me patience & perspective to just believe whatever someone says about their own health needs, even-- perhaps especially-- if that's inconvenient for me.
I am allergic to all those synthetic sugars myself as well.
@@SoManyRandomRamblings yes, allergic to a wide variety of substances, coincidentally all of them synthetic sweeteners, totally not psychosomatic at all
@@ManderSeis you are being unnecessarily rude about someone else's health. It is indeed possible to be allergic or have adverse non allergic reactions to many things and sometimes what causes a trigger may become more or less of a problem. Autoimmune responses are definitely not all in the person's head but people like you will probably tell them they are lying, faking or that it is all in their head. They live with their body they know it better than you do.
detailing out a laboratory confirmed phenyalanine per 100g in the nutrition info of every product would be so helpful
This is really interesting. I'd love to learn more about other rare quirks like PKU, if even just to help accommodate people in the future!
can someone correct me on this, but shouln't it, scientificaly speaking, be pronounced more like phenyl-alanine, because it is alanine with phenyl group attached instead of pheny-lala-nine?
ive had pku my whole life and it varies from one medical professional to another. i even pronounce phenylketonuria differently than they did in the video!
@@alexandriahall2843 SAAAAME!
I assumed there was some rare disorder that made it so some people couldn't have diet soda, but I didn't know what it was called or that it was such a serious problem.
Wow, I really learned something. Thank you. And now there is hope for those suffering with this.
Interesting 🤔 thank you for making this video 👍
That shirt is awesome! Anyone know where it’s available?
Sticking with the real thing, cane sugar, has always been my preference.
Just making sure that you aren't falling for marketing gimmicks and that when you mention "real" you mean sugar vs sugar-free alternatives and not implying that cane sugar is real and HFCS is fake. As there is simply no difference between the fructose and glucose in HFCS, and the fructose and glucose in sucrose, the disaccharide derived from cane sugar.
All individual sugars are the same across the planet. Glucose, fructose, galactose, or ribose, whether produced by a plant, an animal, a bacteria, or a manufacturing plant in Saskatchewan, are identical. The chemical formulas are exactly the same. It’s the exact same carbons, the exact same hydrogens, and the exact same oxygens.
I really appreciate these warnings since they're bold and at the end of the ingredient list. It makes me able to quickly see if eating something is going to make me nauseous.
Unfortunately, we seem to be in a rush to add artificial sweeteners to everything instead of simply cutting the sweetness by adding less sugar. If if you're (pre)diabetic you either get high sugar items or artificial sweeteners. It's a double-whammy.
Imagine how different John Green’s life would be if he couldn’t drink Diet Dr Pepper
PKU here. My migraines are absolutely kicked into overdrive if I mistakenly ingest phenylalanine. Takes me months to detox.
Have you ever tried a sauna to detox? I get migraines & heaps of intollerances & allergies (although not PKU) I find regular spa & sauna sessions help me a LOT in clearing the crap out of my body so I can better handle small accidental exposures. TBH I'm not totally sure if it's the spa or sauna or combo that does it, I tend to start with a sauna, get my body warm & sweating, then into the spa to massage all my lymphatic system with the jets & also to loosen muscles & release knots, especially around my neck, combined with doing lots of gentle stretching while muscles are warm & relaxed by the jets, then I go back into the sauna to reheat & relax everything & really sweat some more to detox all the stuff I've worked loose with the spa jets. I mean I really don't know if/what it's doing, but I do know it helps me a lot & I know they did a study on plastics in the body & found long term ones were excreted really well by sweating, so there is science to support sweating literally detoxing. I find massage in the place of the spa works too, but it's more expensive - is what I had for a while during covid lockdowns though with the public spa/sauna closed, longer term I bought my own for home, along with a massage chair, which helps with spasms, but I don't think it does anything for detoxing
Anyway, if you haven't tried it, I really recoment giving it a go, nothing to lose :) Don't do it when you have a migraine or for the next day or 2 & make sure you drink LOTS of water or you'll just make yourself worse, but I find anything more than a couple of days after an exposure helpful, next day I tend to feel like I've been hit by a bus, but the following day & days after that, I feel WAY better than I would have had I not done the spa/sauna
1 This is actually only on cans with aspartame. Cans with sucralose (Splenda) or saccharine don't have that because neither contains phenylalanine.
2 The warning used to say something like "Phenylketonurics: Contains phenylalanine" but they changed that in the 1990's in the USA
Love the shirt!
As a PKUer myself (HI!) I am alwasy as excited as I am grateful to see videos like this on youtube, thanks for all the hard work you put into your videos. And yes, managaing PKU is verymuch an hourly struggle. I would add that there are 500 known mutations resulting in PAH deficiency that are categorized as classical, moderate (which I have), and mild. Each category reffers to the amount of PAH your liver can produce on its own with classical PKU being the most deficient. Think of these categories as levels of heat on the stove with classical PKU being the hottest. Treatment includes low protein diet (adjusted according to how much phenylalanine your body can process,) supplementation with formula (which tastes much better these days with the development of glycomacropeptides, a whey derivative) Palynziq as described in the video, Kuvan - sapropterin dihydrochloride (which I am on) and hopefully soon gene therapy. Feel free to as me anything!
Hope gene therapy treats you well! BioMarin requires a level of discipline that I have trouble keeping up with sometimes. Palynziq and Kuvan are my only options where I am. Also glad to see someone else mentioning the diversity of mutations!
This is phenylaminal !
I actually lol’ed 😂
A family I grew up with the mother had it and it’s caused her seizures apparently so I remember vividly that she wouldn’t let her kids go anywhere near our diet soda it didn’t have a name back in the 90s that I knew about but the condition definitely was known about love the video you guys are still awesome
Awesome episode. Where did you get that amazing T shirt?
I drink my diet soda exclusively from a GulpBuster™️ jug.
GET OUT OF MY HEAD SCISHOW. I JUST DID A PROJECT ON ENZYMES AND FOCUSED ON PKU.
I was just talking about phenylalanine with a friend almost exactly when this was posted. Crazy stuff.
I remember learning about phenylketonuria back in elementary school. In retrospect, that was probably not universal, and it's probably also weird to remember a one-off lesson about phenylketonuria from 30 years ago.
I have PKU! Love to see people talking about it!
You're not alone!
This is the first vid I've seen Savannah in. They're a cool host ngl
@@unclem7816 when in doubt, gender neutral pronouns are the safe option to use. But SciShow makes it a point to put the host's preferred pronoun with their name in the video description. In this case you can see there that Savannah prefers to be addressed with they/them so please respect that.
I’ve missed you hosting!
I like Savannah! Great job. 🙂👍