Returning To Diet

• You may have been advised many years ago that you no longer needed to stay on the PKU diet.
• You may have had a trial period “off diet”, felt no different and so decided to continue.
• You may have gradually drifted away from your diet as other aspects of your life – work, relationships, social life – were given higher priority.
• You may have suddenly stopped the diet because you got fed up with it.

Whatever the reason, it is never too late to return to the low protein diet.

• You may have become aware that “diet for life” is now recommended.
• You may be having challenges in life that you feel could be helped by getting your diet in order.
• You may think that, with improvements in the products available, the diet is now more manageable.
• You may experience significant changes in life, which have prompted you to return to diet e.g. a new job or promotion, new relationship or starting a family.
• If you would like more information on PKU and pregnancy, click here.

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;

• Many cities and regions now have dedicated adult-only clinics.
• More variety and better tasting protein substitutes are available, with improvements in both the amino acid based-protein substitutes and the introduction of new GMP-based ones. To learn more about GMP or Glycomacropeptide, click here.
• Improvements in specially manufactured low protein foods – both the prescribed ones and the ones available from your supermarket.

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.