I was diagnosed with PKU one week after birth, meaning that if I consumed high levels of protein during my lifetime (especially childhood), it would cause irreversible brain damage.

My body can't digest the phenylalanine in proteins, and undigested blood phenylalanine above 6 mg/dL is a neurotoxin. So, I've never eaten any sort of meat or dairy product during my lifetime, which are the main sources of protein.

To be able to grow like everyone else who consumes protein, I have to take in "pre-digested" protein so that my body doesn't have to do the work and fail miserably (also if you don't feed it digested protein twice or thrice every day it tries to digest itself and gets your blood phenylalanine mg/dL skyrocketing, so that's cute and convenient).

The possibility of getting intellectual disability (and related stuff) still haunts me to this day.

Ask me anything!

You can find the box of the "pre-digested" protein and my username here: https://ibb.co/zNgcCn0 (Imgur is banned in Turkey.)

Edit: If you're curious, PKU stands for phenylketonuria (derived from phenyl ketone in urine), and it's just the abbreviated name of the condition I've described. Nobody says "phenylketonuria" because it doesn't describe the condition better than just saying "PKU."

Comments: 966 • Responses: 65  • Date: 

sikkerhet693 karma

wait imgur is banned in Turkey?


also, do plant proteins trigger it?

MutatedAlgorithm898 karma

Turkey bans all sorts of sites (including Wikipedia), look it up.

Plant proteins trigger it, yes. I usually don't eat large sums of corn, peas, etc and I almost never eat other legumes.

KingNopeRope227 karma

Why does turkey ban all sorts of sites?

ButtsexEurope661 karma

Because Erdogan is a dictator.

MutatedAlgorithm574 karma

Yes, basically.

MutatedAlgorithm595 karma

Bad governance.

totallyanonuser36 karma

But baklava...

MutatedAlgorithm170 karma

Baklava has nothing harmful in it. I eat some nuts on a small scale, and baklava has very few nuts on it. And also, I can eat any sort of pastry, they're not that much in protein.

PayData473 karma

I was a food service manager for a school (head lunch lady I called my self, I’m a dude.) and we had a PKU kid. It was very difficult with him because at the middle school years is when peer pressure was the worst. As dictated by the law, we ordered low to no protein foods for him and I was constantly in contact with his doctor and dietitian to try and match his meals to what we were serving everyone else that day: if we had chicken nuggets, I had the mushroom nuggets for him, if we had spaghetti and meatballs, he had no protein penne with mushroom balls. The loaf of bread we ordered to make him grilled cheese was like $15.

What made it super difficult is he wanted to be just like everyone else, so I had to keep a watch for him and swap his food out so other kids didn’t question or make fun of him but after school was the hard part. He’d go with friends to a fast food joint and get some nuggets and a hamburger and not tell anyone.

How did you deal with the peer pressure of meat eaters and asshole preteens who might not have understood PKU? Did you ever eat meat just because you were tired of being different?

MutatedAlgorithm382 karma

No. Never. Nobody peer pressured me to eat meat. I would like to give a more detailed answer but nobody ever encouraged me to do that, really. I usually brought lunch from home, so lunch wasn't a problem, and when out with friends, I would just order something that I could eat.

I think it has to do with the fact that the kid's friends didn't know he had PKU. I, however, usually don't hesitate to tell my friends I'm vegan. I don't tell them that I have PKU. I just tell them that I don't eat meat and they understand. Of course, to not seem picky, I say it's just an allergy. Which turns out to be pretty much on point. They always understand.

squid50s343 karma

What’s a few of your favorite foods?

MutatedAlgorithm834 karma

Main: Fried asparagus and/or oyster mushroom, Turkish ravioli (with artichoke instead of minced meat), sushi (yokozuna roll, no fish)

Dessert: Baklava (traditional Turkish sweet pastry), bitter chocolate fondue

Fruit: Blueberry, stawberry

Aditionally, I LOVE salads.

Edit: Sorry, it's not Swiss fondue. I really just looked up "fondü in English" and "Swiss fondue" popped up. Turns out it wasn't precisely that.

jackaroo134446 karma

Can you post that Turkish ravioli recipe?? I immediately went and googled artichoke stuffed manti but can't find any likely looking recipes, but that sounds so freaking good honestly.

MutatedAlgorithm104 karma

We know a woman here in Istanbul, and she makes the ravioli for us. I think it's like making normal Turkish ravioli, but out of artichoke slices. You need to stuff your dough with them. By the way, yes, it tastes AMAZING.

Edit: I found a recipe in Turkish language (http://www.nefisyemektarifleri.com/enginarli-ravioli/) but it has egg yolk in it, I would remove that but you can keep it.

sgursel44 karma

Friend of mine rejects baklava after turning vegan. How do you deal w butter in Turkish desserts?

MutatedAlgorithm110 karma

Butter doesn't affect me that much.

Charlieuk218 karma

Was there ever a food you weren't supposed to eat growing up that you decided to just try anyway?

MutatedAlgorithm531 karma

No, never. I've always been haunted by the fact that I could be disabled (and I can't get used to it), so I've always kept my diet as strict as possible.

A_Blunt_Object127 karma

I bet that would have taken some extreme will power at times

MutatedAlgorithm529 karma

No, not really. Since I have always known it to be that way, it takes very little will power. I am just a person who is too withdrawn from trying out new things just out of curiosity or to "fit in." Many people my age with the disorder eat fish etc, and some eat anything they want but I think they're just trying to be cool as teenagers. I don't want to affect the most important years of my academic career with such foolishness.

Psa-lms127 karma

You’re very bright for recognizing that. Many young people your age do all sorts of foolish things for foolish reasons. Perhaps this has kept you cognizant of risks?

MutatedAlgorithm185 karma

I think you're saying me having a strict diet created a positive feedback loop for my overall consciousness. Yes, the rich get richer, and the poor get poorer (methaphorically). If I were less smart, I would've probably been jammed in a vicious cycle that would make me less and less intelligent (because I would eat meat recklessly). But I also come from an educated family, so their regulation was important in me figuring it out too.

Psa-lms66 karma

I’m saying that hopefully as well. My child has extreme food allergies so I’m hoping he will develop your attitude toward risk.

MutatedAlgorithm66 karma

That's tough! I hope so.

chocomilkgoddess93 karma

damn, allah şifa versin kardeşim. isn't it hard to live vegan in such meat-based cuisine?

MutatedAlgorithm128 karma

Kafayı yiyeceğim, it's extremely hard to go out eating with people who constantly say "I want kebap! Let's eat kebap! Kebap for the win!!!" (as you may have guessed I am exaggerating but it gives that vibe).

Quaon72 karma

Since everyone else is asking about your condition, how are you doing personally right now? Do you game or have any hobbies?

MutatedAlgorithm199 karma

Thanks for your consideration. I don't like to talk in an emotinally low level, but I'm very stressed out. I'm going to this university physics course where they teach 4 months of university courses in 8 days. At first it was easy, then it got out of hand quickly. Even though I was outdoing my peers at first, I realized I knew no calculus and had to learn it, and my grades started to go down a little. And our teacher is a crazy sort of proffesor (from MIT), so he's very unpredictable. My grades can plummet in Monday, and I should start studying. I wanted to study integrals and derivatives this weekend but woke up late this Saturday, and had to practice piano before the lesson. Then my mother said I had to get her some medicines so I crossed into Europe by train and got her medicines from 30 kms and a continent away. Mom didn't stop talking, and it turned out that pretty much the whole day was gone. I woke up recently and had lunch, I'm looking forward to study, write my English physics project proposal, read 50 pages of Mandelbrot in English, and do the fluid resistance and dynamics homeworks before the end of the day. Wish me luck. Plus, there's a wedding of a family member at 19:00, so that's very convenient. Hobby-wise, I like computer programming, and I also like games like Minecraft (cool again) and Terraria. As I said, I also play the piano.

Gurty00770 karma

Are you BH4 responsive or do you have classical PKU? Have you tried Kuvan yet? My son has PKU and is on Kuvan. With this medication he is able to have a completely normal diet. If you haven’t yet tried it, try and get some to test your responsiveness to it. It truely is a life changing drug for those that it works on.

MutatedAlgorithm98 karma

This is the third or fourth time I'm getting this question (first time was in Turkish). So, in order to save time for everyone, I paste here my last answer: "We didn't test Kuvan, we were offered the test, but I rejected (because I was afraid, and wanted to keep following my regular diet). Now I regret it." (taken from another answer)

It may be life-changing but I though PKU was a characteristic of mine and I didn't want to lose that. So that's why I rejected it. Then I instantly regretted it. We're still waiting in line to get offered a test one more time, but it's hopeless. I lost my only chance when I rejected it. At this point, 17 years old, it really doesn't matter whether I take Kuvan. I just can't eat more types of food and that's it.

gussmith1220 karma

We’re still waiting in line to get offered a test one more time, but it’s hopeless.

What do you mean by this - is the test only available at certain times or to certain people? Can you get it somewhere else?

MutatedAlgorithm16 karma

I think if I go abroad to study, I might be able to. But that is not certain, I need scholarship. In Turkey, options are extremely limited.

SinisterCheese59 karma

Apparently this disease affects about 1/25.000 worldwide (1/100.000 in Finland where I live, for some reason.) But it is really common in Turkey (1/2600) .
How does this show among the common population?

MutatedAlgorithm107 karma

It's seen mostly in the Black Sea region, and there's crazy incest going on there, so it's like the Dixie land of Turkey. Incest causes these sorts of recessive genetic disorders to spread like fire. Neither my mother nor my father come from anywhere near the Black Sea region, but out of sheer luck, they happen to pass on the same recessive genes to me. Most other people in Turkey have it as a family disorder, but I'm one of a kind in my family.

the-magic_dragon59 karma

You said it'll get better as you reach adulthood. Do you plan to ever try meat or dairy?

MutatedAlgorithm154 karma

Not meat, but maybe dairy. Eating meat will cause trivial effects like low concentration, low mood or forgetfulness at first but I don't want that either because they may be long-lasting over time, and can even develop into a psychiatric disorder like depression or ADHD.

the-magic_dragon27 karma

Good thing you live in Turkey they make a lot of food suitable for vegan diet. Is there anything you're really curios to know what it taste like?

MutatedAlgorithm73 karma

Meat and fish smell so good, but I want to know how they taste. I've always imagined them to taste like French fries with onion seasoning but people seem to disagree with me. And also, if you know salt bae (dead meme), he is huge here in Turkey and people go there to eat like it's the best, most high-class meat restaurant ever. I really want to go to NusrEt (salt bae's place), eat his food and taste how good it is.

0h_Neptune11 karma

So if you’re curious as to how it tastes, could you try a bite, chew it up and taste it, then spit it out? Or would that be bad too?

MutatedAlgorithm64 karma

I don't want to taste it because then I'll get used to it, but I think I could do that.

0h_Neptune14 karma

That’s true. Have you ever tried a Beyond Burger? It’s a plant-based burger that has no meat in it. I personally haven’t, but others have said it tastes very similar to a regular burger patty. It’s pretty pricey, but could serve to let you try it.

Edit: As 4 of you have pointed out, these have a lot of protein in them as well, so not a good choice. I get it. You can stop replying to tell me that now.

MutatedAlgorithm25 karma

Yes, we have some variation of it in Turkey. It tastes good but just like any other fast food, gets boring after a while.

Justtryme9010 karma

Or schizophrenia. Prolonged elevated blood Phenylalanine can result in you becoming schizophrenic.

MutatedAlgorithm11 karma

Let's hope not!

DrHivesPHD31 karma

What's your view on Tofu? What do you think meat tastes like?

MutatedAlgorithm39 karma

I think Tofu was some sort of vegan cheese? I ate it once and it tasted weird so we never brought it home again.

I think meat tastes like low-calorie French fries with onion seasoning.

BluePeriod-Picasso15 karma

Did you cook up the tofu?

MutatedAlgorithm12 karma


Fire_Blast16 karma

It does have a lot of protein so are you able to eat it even? But yes cook it in hot oil with asian spices and let it get crispy.

MutatedAlgorithm14 karma

Anything below 9% protein (except for certain dairy products) is allowed to me by my dietician.

SolarpunkArtist9 karma

tofu is not vegan cheese. "Tofu, also known as bean curd, is a food prepared by coagulating soy milk and then pressing the resulting curds into solid white blocks of varying softness. It is a traditional component of East Asian and Southeast Asian cuisines; it has been consumed in China for over 2,000 years. - Wikipedia "

meat doesn't taste like french fries. Completely different texture too.

MutatedAlgorithm5 karma

It smells like them though.

lightningface30 karma

Was it hard for your parents to make sure your strict diet was kept when you were young? Especially before you could really understand for yourself.

MutatedAlgorithm102 karma

It was hard for them and I still think they could've done a better job. They forgot to buy protein formulas several times and one time hired a babysitter who made me eat chicken (my sister noticed it, told my mother, and the babysitter was fired, I threw up crying). At least mine is a more mild version of PKU so me just not eating meat or dairy products was enough for the most part. My IQ measurements or grades didn't change over time and things stayed OK.

paul-blarts-wife37 karma

Jesus christ.....was the babysitter told that protein was forbidden?

MutatedAlgorithm54 karma

She said she "forgot," and apologized.

fuckitillsignup20 karma

What’s your experience with restaurants accommodating your condition? I hope it’s good but I feel like it’s very risky.

MutatedAlgorithm61 karma

It's very risky indeed. I always ask specifically what they add to each of their menu items that I wish to order. Some restaurants have a vegan food indicator and that's useful, but the options are very limited in Turkey. This spring, I went to Prague and Budapest, and they were amazing places. Aditionally, they had a lot of options there and I had a feast. They had vegan meat, vegan cheese, vegan sausages and much more. One specific vegan restaurant in Hungary made me comfortable like never before and I've had the best meal of my life there. We don't have anything near that in Turkey, as culturally, people are meat lovers (especially lovers of national food like döner kebap, lahmacun and kokoreç). I can almost feel my IQ decreasing when I have to randomly eat at a place that serves, say, spinach but doesn't write what it exactly consists of on the menu and I can't ask waiters because my friends will be annoyed, the restaurant is busy etc. I end up having to ask a friend to try it out as I feel insecure and guilty because it tastes weird to me, and if (s)he tastes meat, I have to explain my disorder to the waiters and compell them to switch it with something else. This happens more frequently than you would think.

miki15111 karma

Wouldn't vegan cheese or sausages also have a lot of protein in them? They're usually made of soy, beans and the like.

MutatedAlgorithm21 karma

They have much less, though. Soy beans are not deadly for me. I can't eat it every meal but once in a while, it's ok. By the way, who can find vegan sausages here in Turkey, anyway? It's nice to make exceptions in Europe. I want to go back to Budapest right now and eat that meal again so hard that I can't put it into words.

Tearfalas9 karma

I don't know about sausages but I found vegan salami in Turkey just yesterday on istegelsin. It's pretty small tho, 14TL is a bit too much but most vegan alternatives tend to be expensive.


It says sucuk but i opened it up and it definitely looks like salami. The taste was meh when raw, I'm hoping it'll taste better cooked.

MutatedAlgorithm5 karma

LOL, thanks. :-)

MutatedAlgorithm12 karma

No, but that's awesome.

TheOctoberOwl14 karma

You’ve mentioned that Turkey has the highest rate of people being born with PKU, do you know why? You also stated it’s more common with inbreeding; is inbreeding an issue in Turkey?

MutatedAlgorithm11 karma

Yes, it's an issue and I think the old Turkic religion that banned eating meat may have had an effect on this but I have no basis for that. Inbreeding causes the same (shared) mutated alleles to go into one baby and make them suffer from PKU. I've explained this in detail in my other answers.

daniellosaurus8 karma

Or maybe the old Turkish religion figured it out, before we new PKU was a thing!?

MutatedAlgorithm11 karma

Seriously, there is an idiom or something about PKU in Turkish, saying that one who eats too much has their head small. This observation was then made part of the general knowledge of the public. In fact, scientists believe that kids growing up with PKU who ate too much got their brain development halted, thus with small heads.

purrson13 karma

Do you ever get paranoid that maybe you did suffer brain damage/have a disability and people are just being nice to you?

MutatedAlgorithm28 karma

Yes, all the time. It used to be worse when I was younger. I've met many people in the last years with PKU (at PKU meetings) and they seem cool about their disease. It might be caused by the fact that 90% of PKU patients in Turkey come about because of incest, and have it in their family, so they don't feel alone. I, on the other hand, am completely lonely and know no one in my family or my friend circle with the disease. So it was impossible to know what I was like from outside and it really affected my self-esteem. Since this sort of exlusion has been engraved in my personality, my social skills suck, and I even have problems fitting in to the PKU community, let alone other social groups. I am haunted every day and night by the possibility that you've mentioned.

Itstightasabear13 karma

Can you not eat any protein at all? You’ve mentioned eating several items that I know have protein in them in a couple comments. And you also mentioned refusing to eat chicken seasoning which would have basically no protein in it. Have you ever considered eating low protein animal products or is your veganism for ethical reasons as well?

MutatedAlgorithm47 karma

My veganism is for health reasons. I can consume protein but to a limited degree. I don't think there exists a low protein animal product apart from honey, which I consume fondly. I also sometimes use yoghurt and butter because they have very low phenylalanine levels. I think getting myself used to chicken would be dangerous so I try to avoid these stuff at all costs, unless they're specifically made for vegans or people with PKU.

iambluest13 karma

Does your urine smell like maple syrup?

MutatedAlgorithm29 karma

No, this is a different disorder. Phenylketonuria only affects the digestion of phenylalanine, so unless you have very high blood levels, your urine is exactly like anyone else's on the surface. That being said, the disorder affects the urine of course, and this can be used for measuring how well you follow your diet. Nathan Kuehne developed a method to do this: https://youtu.be/OFbF16DVTXY

yessica0o012 karma

Are you able to eat things like nuts, which are high in protein but not animal based?

Both of my sons were sensitive to dairy in my milk when they were very little, so I had to stop eating dairy completely for the first 6 months of they're lives. Did your mom also have to adjust her diet while she was nursing?

MutatedAlgorithm17 karma

I can eat nuts but to a limited extent. It doesn't necessarily have low protein but since it's not animal-based, it's technically not against my diet. I especially eat it whenever someone asks me, out of kindness. Apart from that, though, I don't eat nuts, legumes etc for fun.

I think my mother adjusted her diet also while nursing me.

purrson11 karma

Non health related question maybe you can explain:

My company has an office in Turkey. When we tell the Turks “no” about something, they take it as “try harder” and won’t stop arguing the point.

Is this because I work with assholes, or is this a Turkish thing?

MutatedAlgorithm22 karma

Turks are a bit stubborn, yes. Unlike Europeans, it's okay for them to act like anybody they see on the road is their friend, and act very sincerely. I find Europeans very cold and insincere. But some people may exclusively be assholes on top of that, I don't know. Or else, I can say that it's a basic cultural clash.

wearer_of_boxers11 karma

I have to take in "pre-digested" protein so that my body doesn't have to do the work and fail miserably

is that like.. like how birds feed their young?

MutatedAlgorithm12 karma

I chuckled a bit, but yes, exactly.

BiologicalWizard8 karma

I used to work for BioMarin. They have a couple cutting edge treatments that can be heavily subsidized for folks outside the US. Have you tried getting in contact with them?

MutatedAlgorithm4 karma

No, should I?

duduorion7 karma

Hi There, Fellow PKU carrier here. I'm 38 male living in California. My younger brother and I have PKU but my older does not. Came here to say that if you follow diet through adolescence after your brain is developed you don't have to worry about losing IQ or retardation nearly as much as when you are young and developing. Just stay on the diet and you're fine. Sounds like you're doing great. When I was younger and in elementary School in the late 80s being vegan was not really a thing so it was tougher with the kids at school sometimes. But anyways, keep it up! Also, not sure if you know this but gene replacement therapy is here for pku and they are entering human trials with many drug companies competing to the finish line. My Dr. says not yet but around 5 years from now PKU will be cured with a simple one time injection that replaces the gene. Future generations will not have PKU as long as this therapy is made available. Pretty cool right?!

MutatedAlgorithm6 karma

That's cool!

cr1zzl7 karma

How were doctors able to find out so early? Did something happen that prompted them to do the test or is this a regular thing that all babies are tested for?

I can only imagine what it’s like to have to restrict your diet so much and constantly be afraid of developing a mental illness. Has your concern/anxiety/worry gone down now that you’re older? Will there ever be a point (like maybe when you’re 50 or something) that you’ll be able to eat meat?

Thanks for sharing with us. I’d never heard of this condition before.

MutatedAlgorithm12 karma

This is a regular thing that all babies are tested for. My anxiety has never died down, and the disorder itself isn't the problem, but its psychological implications. It causes me to be socially awkward, but I'm trying to overcome it. It's interesting that this social awkwardness and introvercy is only seen in me in the entire PKU community, so it has nothing to do with the disorder. I think my psychology got affected by multiple factors, but I can't discuss everything here. I think this anxiety is dying down as I "grow out" of the disorder.

At 50, when I have accomplished everything and hit the golden ages, I may say "Fuck it!" and eat meat. But the effect stays the same after the end of brain development. So eating meat at 30 and 50 has the same effects.

austinmiles6 karma

Two of my cousins that i grew up next door to have PKU. I’m always surprised how so few people know about it considering it’s literally the first test they run on all newborns.

How have you coped with the “Milk” formula you use? I know that there are often weight gain side effects and some people develop eating disorders because of it.

My cousin has struggled with that. Though now he’s a sous chef at a nice Italian restaurant at 27yrs old.

MutatedAlgorithm3 karma

Congratulations to your cousin. It takes a lot of determination to have PKU but still make people food. I really didn't have any problems with being overweight due to the milk formulas. I rarely drink them. In fact, I am underweight. But there are so many milk formulas, you can always try some other one. Taranis is not as addicting as others, I must say.

Chemical_Diamond5 karma

Have you watched Quiz of God on Netflix? The fifth episode is about a kidnapped child and how the main characters try to save the kid. The kid suffers from the same disease as you and I realize how hard it must have been to not eat a lot of the food other people eat. I hope you never accidentally eat food you're not supposed to eat (as I have countless of times).

MutatedAlgorithm6 karma

No, but I'll take a look.

raddaya5 karma

What exactly is the pre-digested protein that you have to eat?

MutatedAlgorithm24 karma

It contains all the things that one would get from eating what I can't eat, but with reduced amounts of the amino acid phenylalanine that acts as a neurotoxin in my body at high levels. My body still needs that substance and it doesn't act like a neurotoxin as long as I intricately control how much of it I take in for my body. They're imported from foreign countries, even though Turkey is the PKU capital of the world. At least, the government pays for them instead of us. Since it's extremely high on its nutritional value, to be frank, it tastes like shit when you try it for the first time. (Pardon my language but that was the best way to describe it.)

Justtryme905 karma

Are you non responsive to Kuvan? Do you know what mutations you have in your phenylalanine hydroxylase enzyme?

MutatedAlgorithm6 karma

We didn't test Kuvan, we were offered the test, but I rejected (because I was afraid, and wanted to keep following my regular diet). Now I regret it.

I didn't get my DNA analyzed, but almost certainly there is an inherited mutation. Which mutations, though, I don't know.

HarrietBeadle5 karma

My husband is vegan, and I was vegetarian for many years. One thing for vegans is danger of being low in some vitamins like the B vitamins and vitamin D. (B12 in particular) And I read your comments about anxiety and depression and I wonder if vitamin/mineral balance could be helpful. Do you take supplements, or are vitamin D and b12 in your supplements? And wondering if you have regular blood work not just for the PKU protein thing but also for vitamin and mineral deficiencies that may be exacerbated by the diet.

MutatedAlgorithm8 karma

As I said in the post, I take everything that I miss from a nutritional supplement that I drink twice or thrice a day.

GoldenEst825 karma

Was your mother able to nurse you? Or was that how they figured out you had your condition?

MutatedAlgorithm6 karma

Yes, she followed a diet while nursing me. My condition was discovered right after birth.

dueUevenlift5 karma

What if you want some day to put on some muscles? Is it definitely an impossible thing?

MutatedAlgorithm4 karma

No, I take in protein supplements everyday. In fact, I'm pretty strong and my muscle development is normal.

MyHouseisBoiningDown4 karma

Do you support Erdogan?

MutatedAlgorithm8 karma

No, he sucks.

ketchupROCKS4 karma

Can you eat protein now? My cousin has the same thing and she can eat meat now from taking meds (she was part of a trial study at children’s hospital most of her life)

MutatedAlgorithm10 karma

That medicine is called Kuvan.

"We didn't test Kuvan, we were offered the test, but I rejected (because I was afraid, and wanted to keep following my regular diet). Now I regret it." (taken from a previous answer)

twitchtvtulegit3 karma

Did your parents tell you you were diagnosed with it or have you been to hospitals/doctors and had them confirm it since you were diagnosed at birth?

MutatedAlgorithm5 karma

Since I was restricted from eating any sort of meat or dairy literally my whole childhood (while my sister was allowed to), they had to explain this to me. But it was evident that I had the disorder.

We used to send blood samples to doctors regularly so that they analyze how we're dealing with the disorder, and how it can be treated. It turned out that I didn't completely have the disorder, but had a milder version of it, so just being vegan was enough (also a small restriction for legumes). It didn't turn out that the first blood sample recording was wrong and that I was actually healthy. So, that birth check-up wasn't one time, but repeated hundreds of times during my lifetime. Now that my brain development has mostly come to a halt, we only do it every 6 months, but we used to do it every week when I was young.

ThomasRedstone3 karma

You mentioned needing to ensure you consume the predigested protein, to avoid your body breaking down muscle for energy, does that mean that if you ever did become over weight, you would be unable to diet? It does seem an unlikely situation, but it got me thinking!

I don't think I've seen this asked already, if it has I apologise.

MutatedAlgorithm7 karma

Yeah, I think it's mildly infuriating that my body thinks it can just digest itself whenever it's hungry and get off fine. But protein itself is just nothing. It's just a balanced dietary amount, so that my idiot body doesn't try to balance itself and screw things up. So, in order to lose weight, you have to eat less, and if the body realizes that and tries to digest itself, you are basically doing cannibalism which is technically non-vegan. I think overweight people with PKU should do a lot of sports and eat as little as possible without allowing the body to digest itself.

Basically, drinking the protein formula is important or else the body will try to digest the protein itself, and eating enough is important or else the body will eat itself (which is meat).

el_dude_brother23 karma

What did you eat as a very small baby? Could you take breast milk or was there special milk you had to take?

MutatedAlgorithm4 karma

Breast milk wasn't harmful because my mother was on a vegan diet too (or something like that).

Tod_Gottes3 karma

Hey so in biotech ive modified protein production to use a different amino acid because the bioavailability was better. We should be able to knockout phenylalanine production when growing lab meat. How widepsread is the illness?

MutatedAlgorithm5 karma

Very widespread, found in every corner of the Earth. Especially Turkey. Please do it.

DennisNedrey2 karma

If your body can't break down proteins how does your body get energy? Are you tired all the time?

MutatedAlgorithm3 karma

My body gets its protein from "pre-digested" protein formulas, and I also can eat carbs so no problem there. But of course, these limitations cause my weight to be less and I'm borderline underweight. I'm 1.98 meters (6'6") but only 73 kilograms (161 lb).

microliteoven2 karma

Would you consider yourself healthy otherwise?

MutatedAlgorithm6 karma

No, I am borderline underweight.

nosfw1229042 karma

How do you tell people that you literlly can't eat meat/dairy without looking like some hipster?

MutatedAlgorithm16 karma

Being also an atheist and a leftist, I give the wrong image. I'm just a speck of dust, flying with the wind, trying to find my way. I don't want anybody's attention. Sometimes this miscommunication causes people to hate me because they think of me as showing off how obnoxiously vegan I am while in reality I'm just following a strict diet to hold on to my consciousness, for the good of everyone.

kaancl33441 karma

Bunları duyduğuma üzüldüm dostum acaba geliştirilmekte olan bir tedavisi var mı bu hastalığın ?

MutatedAlgorithm1 karma

Var tabii ya, Türkiye'de çok sık görülen bir şey zaten. En sık Türkiye'de görülüyor hatta. Yani hastalık olması için et, süt falan yemem lazım, yemezsem çok bir etkisi yok. Tam bir tedavi var ama herkeste işlemiyor, bana 8 yaşında deneteceklerdi ama ben istemedim (PKU benim özelliğim, bunu benden almayın, diyordum). Şu an biraz pişmanım.

DrSpiffman1 karma

What is your favourite breakfast cereal?

MutatedAlgorithm3 karma

I like Nesquik. My body can deal with one bowl of Nesquik for a day, and even a bit more than that.

Chayden1531 karma

How hard is it to follow a strict vegan diet?

MutatedAlgorithm10 karma

At home, very easy. You just cook rice and vegetables, and you know exactly how you're making it so there's no risk of having unwanted stuff in it. But being vegan in Turkey is a tough job outside of home. When my friends go to eat, I sometimes have to exclude myself because they go to meat restaurants and I don't want to spoil their fun (as meat restaurants are very popular and also of very high-quality in Turkey). Other than that, eating outside is a challenge even apart from meat restaurants, as chefs add whatever they want in their food and I don't know what I'll get. Even in something as simple as rice, they sometimes want to add chicken seasoning which I find annoying because at first waiters say they don't add it, but then I call the chef to make sure and he says that they indeed add it. Of course, having to ask on the spot is sometimes awkward and unnecesaary so I resort eating it slowly, "analyzing" any foreign-tasting element and if there's anything, spitting it out on a napkin, asking for clarification. The guilt I feel while having to eat something I'm not sure of takes all the fun away, and sometimes I learn the truth too late that I puke it out.

Pessot0 karma

I have to google what PKU stands for?

MutatedAlgorithm1 karma

It stands for phenylketonuria but why would you care to know that?

KyrgyzManas0 karma

Merhaba arkadash! I love the Turkish cuisine and I've been there so many times already (Manti, Adana Kebab, Lahmacun, mmmmhm) ,... but would you think it would be possible to properly live with your condition in more rural parts of the country? The vegan diet can by quite diverse if made properly and you get the right ingredients, but I can imagine that it's kinda depressing to have this outside of the larger cities since I found Turkish dishes quite meat heavy. Imagine for a second that you live in some small town near Erzurum or Batman (love that city name haha) ... could be harsh.

MutatedAlgorithm2 karma

Merhaba, iyi ki İstanbul'da doğmuşum. Çok kibarsın. Regular check-ups would be impossible for us if I were born in a village etc and I might've not even been diagnosed. So basically, I would still be alive, but not alive as in having a state of consciousness, but alive as in still breathing. Without a nearby hospital, it's basically impossible that they would discover the disorder. Also, I would have no access to protein supplements, so my body would digest itself and make me "eat my own meat," which still is harmful to me. I think that's cute in a very annoying way. Most rural people move to cities because their kids have PKU, but also incest in villages of small population causes a boom in PKU (because it's a recessive genetic trait). I like mantı too, and I mentioned that I like it with artichokes instead of minced meat in another answer. My father is from Adana but I could never eat Adana kebap :-( Though, PKU is more of a Karadeniz thing and less Erzurum or Batman, so I probably wouldn't have been born there.