Guidance Statements for Low Protein Labelling Interpretation and Allocation of Protein Exchanges in PKU
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1 Guidance Statements for Low Protein Labelling Interpretation and Allocation of Protein Exchanges in PKU Sharon Evans, Suzanne Ford, Anita MacDonald People with phenylketonuria (PKU) are advised to follow a low phenylalanine/protein diet for life. Some phenylalanine (Phe)/protein is essential for normal growth, development, repair and replacement of body tissues. In order to provide Phe, people with PKU are allocated a defined amount of Phe each day, measured in 50mg Phe (1g protein) exchanges. We mainly use the protein content of food to estimate the amount that will provide 1g protein. For most foods, like wheat, milk, yoghurt, and rice: 1g protein will contain 50 mg Phe. Fruits and vegetables contain a lower amount of Phe for each 1g of protein they contain, and therefore we commonly do chemical analysis to estimate their Phe content. Sometimes calculating exchanges from food labels causes problems. Knowing what to do when a of food is just under or just over one exchange can be confusing. Manufactured foods from the supermarket provide variety in a low Phe diet, but health professionals do not always agree on the interpretation of how different types of foods should be allocated in daily diets i.e. allowed without measurement / not allowed /allowed as part of phenylalanine exchange system. Easily accessible, professional, accurate and practical information on low protein foods (natural and specially manufactured foods e.g. bread and pasta) is not always readily accessible. People with PKU and their families are increasingly reliant on the internet and social media but there is a wealth of opinion and variable advice causing confusion and frustration. 1
2 Recently, the culmination of several issues has identified the need for a review of current guidance on food label interpretation and protein allocation in the UK PKU diet. These issues include: - 1) Recently published European PKU guidelines have specified criteria for fruit and vegetable allocation which differ a little to current UK guidelines; 2) New European protein labelling guidelines stipulate that any food product with a protein content up to 0.5/100g of food can legally be labelled as 0g of protein; 3) There is increasing availability of new types of fruits and vegetables; as a consequence the NSPKU diet list of restrict to one per day for fruit and vegetables was likely to become very long if we did not look at this category carefully. Consequently, during 2016/17 the British Inherited Metabolic Diseases (BIMDG) dietitians group (including over 70 dietitians from 30 centres treating PKU across the UK and Ireland) have worked together with the aim of developing consensus guidelines on food labelling interpretation and allocation of protein/phe exchanges for PKU. The purpose of these guidelines is to harmonize dietary advice for all people with PKU across the UK, both children and adults. Sixteen consensus statements have been agreed by the BIMDG dietitians group and endorsed by the NSPKU. These guidance statements are suitable for all people with PKU, although further guidance for maternal PKU patients who require stringent dietary guidance is in the process of being developed. Guidance statement 1 Free foods, unmeasured or non-exchange foods should be referred to as exchange-free foods. 2
3 Guidance statement 2 Food exchange amounts for food s should be rounded up or down based on the rule of maths. The protein value of food s should be interpreted as per table 1. Table 1 Interpretation of protein content per food item/protein Protein content per item/ when calculated from label 0g protein per food Calculated exchange Exchange free: if the protein value is 0g per 1 slice = 0g protein 0.1g protein per food If a food contains only 0.1g/per food of protein; up to 3 s is exchange free but 4 s should be counted as as ½ exchange. 1 slice = 0.1g protein (EXCHANGE FREE) 2 slice = 0.2g protein (EXCHANGE FREE) 3 slice = 0.3g protein (EXCHANGE FREE) 4 slice = 0.4g protein (0.5 exchange) 5 slice = 0.5g protein (0.5 exchange) 3
4 0.2g protein per food If a food contains 0.2g/per food of protein; one is exchange free and two s should be counted as ½ exchange. 1 x 13g packet = 0.2g protein (exchange-free) 2 x 13g packets = 0.4g protein (0.5 exchange) 0.3g protein per food If a food is 0.3g/per food of protein; one is exchange free and two s should be counted as ½ exchange. 1 x 20g packet = 0.3g protein (exchange-free) 2 x 20g packets = 0.6g protein (0.5 exchange) 0.4 to 0.7g protein per food ½ exchange protein 1 x 16g packet = 0.4g protein (0.5 exchange) 0.8 to 1.2g protein per food 1 exchange protein 1 x 28g veg finger =1.1g protein (1 exchange) 4
5 1.3 to 1.7g per food 1.5 exchange protein 1 pattie = 1.7g protein (1.5 exchanges) 1.8 to 2.2g per food 2 exchange protein 1 x 50g gluten free roll = 2.1g protein (2 exchanges) 2.3 to 2.7g per food 2.5 exchange protein 1 free from white sandwich thin = 2.5g protein (2.5 exchanges) 2.8 to 3.2 per food 3 exchange protein 1 x 42g B-Free Quinoa and Chia Seed Wraps =3.2g protein (3 exchanges) 5
6 Guidance statement 3 All herbs, spices and seasonings are considered exchange-free, as the quantity used in cooking is very small. Guidance statement 4 Fats (oils, butter, margarine) are allowed as exchange-free foods as only small amounts are used. Guidance statement 5 Allow sweets as exchange-free foods if their protein content is no more than 0.5g protein/100g. s Jelly Tots contain protein 0.1g/100g. They are exchange free. Skittles contain protein 0g/100g. They are exchange free. Guidance statement 6 Any soya sauce that contains protein up to 1.5g/100 ml is considered exchange-free (based on quantities commonly consumed). Please note there are only a few soya sauces that have a protein content below this amount. We have introduced this guidance statement as the protein content of soya is highly variable (protein content as high as 15g/100 ml). Also soya sauce may be served as a dip and could potentially provide a hidden source of protein in the diet. 6
7 s Amoy Dark Soy Sauce Blue Dragon Dark Soy Sauce Cooks' Ingredients Sauce Light Soya Protein 1.3g/100ml Protein 1.1g/100ml Protein 0.8g/100ml Guidance statement 7 Any gravy that contains protein up to 0.5g/100 ml when reconstituted as a liquid is considered exchange-free. Bisto Vegetable Granules Protein content = 0.2g/100 ml made up gravy. Exchange-free. Guidance statement 8 Any wet cooking sauce is exchange-free if it contains protein up to 1.0g/100g. If a wet cooking sauce contains protein above 1g protein/100g and contains exchange ingredients (e.g. cream, egg, coconut) it should be counted as an exchange food. However, if a wet cooking sauce contains protein above 1g protein/100g and contains exchange free ingredients only (e.g. fruit and vegetables only) it should be counted as an exchange-free food. 7
8 s Exchange-free cooking sauces Uncle Ben's Indian Medium Curry Sauce Protein content 0.8g/100g. Exchange-free. Ingredients: Water, Tomatoes, Onions, Red Peppers, Sugar, Modified Maize Starch, Coconut, Sunflower Oil, Roasted Onion Paste, Spices, Salt, Acid (Lactic Acid), Curry Powder, Ginger, Garlic Dolmio Bolognese Original Pasta Sauce Protein content 1.3g/100g but contains exchange-free ingredients. Exchange-free. Tomatoes, Tomato Paste, Onions, Sugar, Cornflour, Lemon Juice, Salt, Sunflower Oil, Basil, Garlic, Parsley, Herbs, Spices Sharwood's Tikka Masala Extra Creamy Protein content 1.6g/100g. Count as exchange cooking sauce because it contains exchange ingredients and contains protein over 1g/100g. Tomatoes, Water, Double Cream, Yoghurt, Sugar, Modified Maize Starch, Onion, Ginger Purée, Garlic Purée, Ground Cumin, Ground Coriander Seed, Salt, Ground Spices, Coriander, Concentrated Lemon Juice, Acidity Regulator, Colour Guidance statement 9 For fruit and vegetables (except potatoes) containing the following amounts of phenylalanine: Phe content up to 75mg/100g phe = exchange-free. Phe content mg/100g phe = count as exchange foods but using a standard exchange of of fruit/vegetable = 1 phe exchange. Phe content above 100mg phe count as exchange foods (we use its Phe content to calculate exchange amounts). 8
9 New fruit and vegetables that can be given as exchange -free foods (all have a Phe content below 75 mg/100g) are summarised below. Banana Plantain Raisins Banana chips Dates Physalis Fruits and vegetables that will now be counted as exchanges (all have a Phe content above 76 mg/100g). Fruit and vegetables containing Phe 76 mg or more per 100g Figs Asparagus Beansprouts Broccoli Brussel sprouts Cauliflower Yam Sugar snap peas Amount for 1 exchange 9
10 Mange tout Whole hearts of palm Romanesco Chestnuts 35g 40g We are still awaiting further analysis for seakale and avocado. Guidance statement 10 If any frozen/canned product only contains fruits or vegetables (in wet rather than dried state), that are already designated exchange-free in their fresh form, they should still be considered exchange-free foods (exception dried vegetables/crisps). e.g. carrots, mushrooms labels on tin. Guidance statement 11 For fresh/frozen potatoes, use the phenylalanine analysis from the fruit and vegetable analysis conducted by the NSPKU. If the phenylalanine analysis is unavailable, then use the protein content on the food product label. If potato products contain exchange ingredients e.g. wheat flour, or milk, the protein analysis on the packet should always be used to determine exchange amount. Guidance statement 12 Vegetable crisps (although derived from exchange-free foods) are concentrated in protein due to their cooking method so must be used as exchange foods. It is important to use their protein content per 100g to determine the amount that can be given for one exchange. Tyrrell s Veg Crisps Mixed Root Vegetables containing beetroot, parsnip and carrot. Contains protein 4.7g/100g. 21g =1g protein (1 exchange) Guidance statement 13 Low protein special products (e.g. bread, flour) should be allowed without measurement if all their ingredients are exchange-free irrespective of the Phe analysis per 100g on the label. 10
11 Mevalia Pizza Base 1 low protein pizza base =36 mg Phe. All ingredients are exchange-free. Therefore, allowed as exchange-free food. Ingredients: gluten free wheat starch, water, thickeners: guar gum, hydroxypropyl methylcellulose, locust bean gum; gluten-free wheat fibre, palm fat, rice syrup, dextrose, rice starch, flavouring, yeast, salt. Guidance statement 14 If the ingredients on a food label are clearly exchange-free, then it is appropriate to give as an exchange-free food even if the protein analysis is unavailable on the label. If there is no nutritional analysis on the product but it contains ingredients that are counted as exchange foods, then it is not appropriate to use this food until the food protein analysis is known. Guidance statement 15 If a label states its protein content is 0g and yet one or more of the ingredients that it contains is a protein source e.g. gelatine, this product should be avoided until an accurate protein analysis is known. Guidance statement 16 All patients and their families should be advised to read ingredient lists as well as read the protein content/100g or item. If ingredients are protein containing (but the protein analysis appears very low), it is important to establish more accurate protein analysis before eating. Conclusions We finally have a group of guidelines that have been developed very carefully and agreed by UK metabolic dietitians over the last 2 years. There are still additional guideline statements that are needed (e.g. use of plant milks), but we have a process by which we can develop these. We are hoping that these will help to lessen the confusion and standardise the treatment used for everyone in the UK. NSPKU (UK) Ltd tel: info@nspku.org 11
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