You may at some stage have ‘stopped’ your low protein diet and are now “off diet” or following a diet that is significantly less strict than what is required to keep your blood phe levels within the range recommended by the latest guidelines. There may be many reasons why this happened:
Whatever the reason, it is never too late to return to the low protein diet.
Just as there are many reasons why individuals come “off diet”, there can be many different reasons why individuals want to go back “on diet”:
Diet for life is recommended as there is currently no strong evidence that it is of benefit to discontinue dietary management in adulthood.
Some adults do report problems when their phe levels are high and, even in those who report no problems, there is uncertainty over the long-term impact of high phe levels. Beyond the metabolic aspects of being “off diet”, there are also nutritional concerns – stopping your PKU diet, without giving thought to how you will meet all your nutritional requirements, can put you at risk of nutritional deficiencies.
The potential benefits of returning to diet (and the potential risks from not returning to diet) are outlined in depth here.
If you return to diet, the current European guidelines recommend blood phe levels below 600 μmol/l, ideally in the range 120 – 600*μmol/l. Your specialist metabolic team will advise on this as these can differ from centre to centre and person to person.
It may be a long time since your phe levels were below 600 μmol/l but do not let this put you off. With the exception of pregnant women, improvements in diet to reduce your phe levels can be introduced at a pace that suits you.
*In women, phe levels need to be under stricter control and monitored more closely during both pre-conception and pregnancy. For more information on Pregnancy and PKU, click here.
Your metabolic team will help you return to a low protein diet. If it has been a long time since you saw your metabolic team, ask your GP to refer you to your nearest metabolic centre to help you get started on a low protein diet. The NSPKU website is also helpful for information and support for those with PKU.
If you have not been at a clinic appointment for several years, you may be pleasantly surprised by what you find;
The improvements even extend beyond the clinic with social media now connecting individuals with PKU in ways that were not previously possible. The surge in popularity of vegan foods also has benefits for those with PKU as it can sometimes provide greater opportunity to order directly from restaurant menus.
Even if you decide that a return to diet is not for you (or at least not for the time being), it is strongly recommended that you remain under the care of your metabolic team and attend your appointments. The team will provide expert advice on the new developments coming through in the management of PKU in addition to monitoring your health and well-being so that, if any problems do arise, they can be quickly recognized and acted upon.