Most people will read this title and automatically their brains will say ” Not possible with PKU” and well, they are probably right.  However, after much thought, research, reading and other ; I have decided to try it. My husband has been doing intermittent fasting since January of this year. so 10 months. He says it has changed his life. He has had me listen to endless podcasts and read various studies. I have always just shaken my head and had the attitude ” so what? I cant do that ” or ” yah right that is the complete opposite of everything i’ve ever been taught”

Though, I cannot ignore the benefits and the progress he has mad. I cant help be jealous.  So we both began to think how can I do this?

I had to really think Why do I really even want to attempt this and is it safe? I have talked to other PKU adults and my clinic and thought on the information i have learnt from my husband and the information he has provided me.  The consensus I have gotten is there is just not enough known yet on is it safe for PKU or can it be done? My clinic does not think so.

So that should have ended my curiosity right there and normally it would have.  Then there is that voice in my head who argues. I have been living with chronic pain these past 8 years. After a serious car accident then multiple little accidents over the years has made it so i never really fully recover. I carry more tension and inflammation then the normal person. I have been told from multiple medical professionals its not normal at all.  It weighs me down and effects every aspect of my life. I have good days and I have bad days but it really does hold me back.  The bad days I can barely walk. I can hardly weight bare on my legs or feet.  I cant sleep because my hips burn. My back is on fire, my legs are swollen and the skin is tight. My feet ache deep into the muscles. My neck is so tense the knots stick out the back.  I have tried everything.

I am grossly over weight. I cannot stick to a regular work out routine either due to pain or my severe anxiety. I have frequent panic attacks. I dont like to go out on my own after a certain time. I dont like to work out alone, I cant keep motivated. Or it just simply hurts to much.

eating right and not working out hasnt helped the scale either. My self confidence and self worth are gone.  This is not how I want my daughter to see me , or how i raise her.  I want to give her the world and enjoy it with her.

So I have watched my husband, just from doing a 16 hour fast- From dinner the night before till lunch the next day , He has lost nearly 40 lbs, trimmed his body fat percentage, he has more energy and is happier. He dosnet need to sleep as much , he has more stamina and he actually eats better.  He still consumes the same amount of protein, the same amount of calories he just does it in 2 meals. He has changed the times her eats. Giving his body a longer amount of time to break down and digest his food.

He has taught me that intermittent fasting can change your body on a cellular level and reduce inflammation and pain.  As well as break down body fat. 2 of my biggest issues.

Here is an article that has 10 evidence based health benefits :

https://www.healthline.com/nutrition/10-health-benefits-of-intermittent-fasting

I was especially interested in how it can help the risk of diabetes. Something I am always worried about with being so heavy and the amount of carbs and refined sugars in the PKU low protein diet.

Another good resource is this podcast below :

https://bengreenfieldfitness.com/podcast/fat-loss-podcasts/the-complete-guide-to-fasting-how-to-heal-your-body-through-intermittent-alternate-day-and-extended-fasting/

and this book:

 

So going back, so much of this is NOT what we should be doing with PKU. My own clinic even advised me not to. I normally do not ever go against their advice, however this time I am trying. I want to test my theory and monitor my levels and Gage my own benefits.  I am not in any way recommending anyone should do the same. I am only hear to talk about what I am doing and why.   If this is something you are considering please talk to your medical team and please talk to your pku clinic.  Do the research , read everything you can and get direction.  Be monitored.

I will still be getting the same amount of phe, the same amount or calories, and drinking my normal amount of formula. I am just changing the times that I eat. I am going to do weekly blood dots to .

At my clinic we are all taught right from diagnosis to fast and then do our blood dots. Like a 10 to 12 hour fast.  so over night. I have always done my blood dots after waking up and having a shower. We are told this as its when our phe levels are higher and more accurate, as soon as you eat your phe levels start to lower. So my biggest thing has been , what difference will extending the fast about 4 more hours have on my levels. Will it really be that much as i will still be eating my regular diet just at different times.

Another thing we are taught is if you go to long with not eating or not eating enough , that our bodies go catabolic . That we begin to break down our muscles and the protein in our body and that raises or levels. There are many arguments on the internet now a days for regular non pku people saying if this does or does not really occur when you fast .  Apparently now scientists are changing their minds on that. and maybe it dosent really work like that? or if it does when does it exactly start and how much does it really change?  so if their are thinking this way now for regular people when will they start to consider people with  pku? These are the questions i have going into this and making sure its safe for me.  I hope to test this and find my own answers and prove my theories while sharing some of the benefits i’ve seen my husband enjoy.

Today is day 3 for me. I am so freaking hungry. I keep hearing my husbands voice in my head telling me the hunger is just a hormone called “Grellen” that is usually triggered by schedule so soon feeling hungry at my old breakfast time will fade and i wont get hungry till lunch. So now  i drink a lot of water through out the morning. I keep busy with my daycare kids and cleaning my house and prepping meals for the day etc.  and I eat my first meal at lunch with my daughter and our daycare kids usually between 1130 am and 12 :oo pm noon . I have a snack at 3 pm with my daycare kids again and a formula. Then my family and I eat dinner between 6 and 7 pm . Then we start again the next day.

I’ve been pretty cranky the past few days. Sometimes by dinner i’m in a full on rage. My husband tells me thats the sugar in my diet. As I sit here typing this i have images of low protein pancakes or waffles dripping in maple syrup and filled with berries through my head and my tummy is grumbling.   Going into this on day 1 i really thought id get the shakes and dizzy like i do if i go to long between formulas and meals . I am use to eating every 4 hours. But I havent. Actually at all. Other then just feeling hungry , I havent really felt anything else. I egarly check the clock frequently.

My husband told me not to have my first meal of the day be so sugary and sweet as it would make the hole effort pointless. So their goes my whole fantasy of waffles.

The past couple days during the fast i have made home made soups, and done some baking then its ready just in time for lunch. i have had things like low protein breakfast quesadillas with the cambrooke eggz . Yesterday I had a low protein mock tuna salad sandwich ( made with jackfruit) and my home made soup. I roasted 2 small pumpkins , a butternut squash, purred in the blender then added coconut milk and cinnamon and cooked on the stove top.  today I am thinking either tacos or burrito and soup.

 

 

 

 

Dinner I havent changed very much , its still either Mashed potatoes and veggies, Rice and veggies,  or low protein pasta!

I did a blood test on October 1st and if i remember to mail it in i will post my results here as my starting point before fasting.  my current weight is 192.4 lbs ( not something i share happily , but in the nature of transparency and for my personal study purposes.)

I guess now my next step is to call my clinic and inform them i am doing this so they can help monitor me and make sure im being safe.

check back for my progress and if im sucessful.  again by sharing my story i am not promoting anyone should do the same , specially with out medical support.

 

Here are a few more resources if anyone is interested in doing their own reseach.

I would love to hear from you if you have done this and what your experiance was and what you did and if you have been sucessful. Specially if you have classical pku like me.

 

https://www.foundmyfitness.com/episodes/satchin-round-2

 

https://www.foundmyfitness.com/episodes/valter-longo

 

https://www.foundmyfitness.com/episodes/ruth-patterson

 

https://www.foundmyfitness.com/episodes/satchin-panda

 

https://www.foundmyfitness.com/episodes/ray-cronise

 

https://peterattiamd.com/tag/intermittent-fasting/