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Introduction of New Diet Guidance

At DARE Fest 2022, new dietary guidance was released. Analysis of food funded by Global DARE was added to a database of dietary analysis gathered from all published food analysis allowing us to develop new diet guidelines which allow for variation in portion size and food choice. This has led us to develop a traffic light guide to food choice.

GO

These foods contain only small amounts of phytanic acid, phytyl fatty acid esters and free phytol and can be eaten freely.

Caution

These foods need to be limited to a total of a 100g portion of one or any combination of foods once a day as they contain moderate amounts of phytanic acid, phytyl fatty acid esters and free phytol.

Stop

These foods need to be avoided as they are high in phytanic acid, phytyl fatty acid esters or free phytol

 

NOTE: The guidance below provides general dietary recommendations that can be used by all individuals with Adult Refsum Disease. However, everyone’s food choices, portion sizes and phytanic acid levels are different, so it is recommended to speak with your Dietitian to get individualized advice.

GO

These foods contain only small amounts of phytanic acid, phytyl fatty acid esters and free phytol and can be eaten freely.

Meats

  • Chicken

  • Turkey

  • Duck Breast

  • Rabbit

  • Eggs

  • Chicken Liver

Meat Alternatives

  • Tofu

  • Quorn

Seafood

  • Scallops

  • Lobster*

  • Clams**

  • Perch (wild)

*There is only analysis data available for Maine Lobster. The assumption is that the content is the same for other lobster; however farming practices may influence the phytanic acid content.

**There is only analysis data available for minced clams. The assumption is that the content is the same for all clams; however farming practices may influence the phytanic acid content.

Beverages

  • Tea

  • Fruit juice

  • Coffee (see information on caffeine recommendations)

Milk & Milk Alternatives

  • Fat free or 1% fat cow’s milk (with no DHA)

  • Oat, coconut, rice
    and soya milk

  • Coconut, oat, and
    soya yoghurt

  • Whey powder

  • Very low fat Fromage Frais

Cereal and cereal products

  • Bread (white, rye, wholemeal, wholegrain)

  • Crumpets

  • Cereals (cornflakes, weetabix, shredded wheat, bran flakes, crunchy nut, cocopops, honey nut loops, Kelloggs Special K, puffed wheat cereal)

  • Porridge oats

  • Flour (white, wholemeal)

  • Rice

  • Pasta /  noodles

  • Sago

  • Tapioca

  • Pearl barley

Cheese Alternatives

  • Vegan and ‘dairy free’ cheeses

  • Vegan cheese spreads

Fruits

  • All fresh and dried fruit

Nuts & Seeds

  • Cashew nuts

  • Walnuts

  • Coconut

  • Pistachios

  • Hazelnuts

  • Black Chia seeds

  • Macadamia nuts

  • Nut butters made from any of the above nuts/seeds

Miscellaneous

  • Nori

  • Wasabi

  • Fish sauce

  • Herbs

  • Spices

  • Ketchup / tomato sauce

  • Bisto gravy powders

  • Stock - chicken or vegetable

  • Honey

  • Jam

  • Marmite

  • Crisps / potato chips

  • Ready-made sauces containing GO ingredients (including whey protein, milk protein or skimmed milk)

Legumes

  • Kidney Beans

  • Black Beans

  • Green Lentils

  • Butter Beans

Vegetables

  • Sweet peas

  • Sweet potato

  • Asparagus

  • Brussel sprouts

  • Broad beans

  • Bean shoots

  • Lettuce (iceberg)

  • Peas

  • Cabbage

  • Carrots

  • Onions

  • Cucumber

  • Sauerkraut

  • Butternut squash

  • Avocado

  • Green beans

  • Cauliflower

  • Potatoes (including fries)

  • Beetroot

  • Mushrooms

  • Swede

  • Eggplant / Aubergine

  • Green peppers

  • Tomatoes (fresh, canned, puree)

Fats and Oils

  • Vegetable oils

  • Vegetable suet

  • Vegan and vegetable oil spreads

Biscuits and confectionery

  • Vegan baking (not containing any of the nuts and seeds that are on the avoid list)

  • Dairy free baking (not containing any dairy milk, butter and cream)

  • Vegan/dairy free chocolates

  • Dark chocolate (e.g. 70 or 90%)

  • Boiled sweets or sugar candy

  • Liquorice

CAUTION

These foods need to be limited to a total of a 100g portion of one or any combination of foods once a day as they contain moderate amounts of phytanic acid, phytyl fatty acid esters and free phytol.

Meats

  • Veal

  • Pork

  • Ham

  • Bacon

  • Frankfurter sausage

Dairy

  • ​Fat-free cow’s yoghurt

Seafood

  • Tinned tuna (water/brine)

  • Halibut

  • Calamari (not coated/crumbed)

  • Coley

  • Herring

  • Sole

  • Dressed tinned crab

  • Prawns / Shrimp

Nuts & Seeds

  • White sesame seeds

  • Pumpkin seeds

  • Pecans

  • Tahini (white sesame seed paste)

Legumes

  • Edamame beans

  • Chickpeas

  • Baked beans

Vegetables

  • Broccoli

  • Spinach

  • Rocket / Arugula

  • Sweetcorn

  • Red and yellow bell peppers

  • Olives

Cereal 

  • Rice crispies

STOP

These foods need to be avoided as they are high in phytanic acid, phytyl fatty acid esters or free phytol

Meats

  • Cattle (steak, beef, burgers)

  • Sheep

  • Mutton

  • Lamb

  • Goat

  • Beef, sheep, lamb and pork offal

  • Dried pork (prosciutto)

Milk & Milk Products

  • Full fat, whole or semi-skimmed milk Evaporated milk

  • Fat free milk with added DHA (Omega 3)

  • Full fat yoghurt

  • All dairy creams (eg double cream, sour cream, single cream, whipping cream)

  • Ice cream

  • Buttermilk

Seafood

  • Fresh tuna or tinned in oil

  • Trout

  • Oysters

  • Smoked salmon

  • Salmon

  • Cod

  • Flounder

  • Haddock

  • Plaice

  • Crab, tinned, white meat

  • Mackerel

  • Sardines

Cheese & Cheese Products

  • Hard and soft cheeses (cow, sheep, goat)

  • Processed cheese

  • Cream cheese

  • Cottage cheese

  • Cheese spread

Nuts & Seeds

  • Black sesame seeds

  • Sunflower seeds

  • Golden Flaxseed

  • Peanuts

  • Peanut butter

  • Almonds

  • Brazil nuts

Biscuits and confectionery

  • All baking that includes butter, milk or other dairy

  • Chocolate

Cereal & Cereal Products

  • Breads with dairy (e.g. brioche, croissants)

  • Cereals with dairy

Vegetables

  • Kale

  • Potato flakes, dried potato or packet mash potato (if dairy/milk present in ingredients list)

Fats and Oils

  • Margarine (if it contains milk and milk products)

  • Butter and half-fat butter

  • Beef suet

  • Ghee

  • Fish oil

  • Algae oil

  • Peanut oil

  • Sesame seed oil

Miscellaneous

  • Stock – beef or lamb

  • Ready-made sauces containing dairy such as cream or milk

Good Protein Sources for Adult Refsum Disease

Protein is an important nutrient for growth, development and maintenance of muscle. Protein foods should make up 1/3 of your plate at meals. Some protein foods are very high in phytanic acid (e.g. beef, lamb, cheese, full-fat milk) and need to be avoided. Below is a list of protein foods that can be eaten daily. You will also get some protein from vegetables, cereals and grains. You can use the traffic light lists above for further ideas of protein foods (including those that can be eaten in moderation on the ‘caution’ list).

​

  • Chicken, turkey, duck breast, rabbit

  • Eggs

  • Scallops, lobster, clams

  • Perch (wild)

  • Quorn

  • Tofu

  • Kidney beans, black beans, green lentils, butter beans

  • Whey powder

  • Very low fat Fromage Frais

  • Soya yoghurt

  • Fat-free milk

  • Cashew nuts, walnuts, pistachios, hazelnuts, macadamia nuts

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