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Introduction of 2024 Diet Guidance

In 2022/2023, Global DARE Foundation funded further food analysis. This diet guide has been updated to include these new foods.


Furthermore, the diet guide is now structured to include Level 1 and Level 2 advice. We know that phytanic acid in foods directly affects phytanic acid blood levels. However, further research is still needed to understand how phytyl fatty acid esters and free phytol are absorbed in the gut and how they affect phytanic acid levels in the body. Until we have this research, it has been decided that the Level 1 advice is based only on phytanic acid content of foods. For this reason, you will notice that there has been a change to where some foods are categorised in the diet guide. In addition, Level 1 advice includes recommendations for regular meals, carbohydrates, exercise and illness management.


Level 2 advice considers foods high in phytyl fatty acid esters that could potentially influence phytanic acid blood levels. Current food analysis does not provide conclusive free phytol content, and therefore, it has not been considered in Level 2 diet guide until we have further research.


We would recommend following all the Level 1 advice as a first line in managing your phytanic acid levels. If, after following all the Level 1 advice, you continue to have higher phytanic acid levels, we would recommend also considering the Level 2 guidance.

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.



It is recommended that all people with Adult Refsum disease follow the Level 1 dietary recommendations.


These foods contain only small amounts of phytanic acid and can be eaten freely.


  • Chicken

  • Chicken Liver

  • Duck Breast

  • Eggs

  • Turkey

  • Lean pork (cuts such as pork tenderloin and loin)

  • Low fat ham

  • Bacon (back cut or loin bacon only with fat removed)

Meat Alternatives

  • Tofu

  • Quorn


  • Clams**

  • Coley

  • Lobster*

  • Perch (wild)

  • Prawns /Shrimp

  • Scallops

  • Sole

*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.

Milk & Milk Alternatives

  • Coconut, oat, and soya yoghurt

  • Fat-free cow's yoghurt

  • Fat free or 1% & 2 % fat cow’s milk (with no DHA)

  • Oat, coconut, rice
    and soya milk

  • Very low fat Fromage Frais

  • Whey powder

  • Dairy free whipping cream

Cereal and cereal products

  • Bread (white, rye, wholemeal, wholegrain)

  • Breakfast Cereals (with no added milk/dairy)

  • Crumpets

  • Flour (white, wholemeal)

  • Pasta /  noodles

  • Pearl barley

  • Porridge oats

  • Rice

  • Sago

  • Tapioca

Cheese Alternatives

  • Vegan and ‘dairy free’ cheeses

  • Vegan cheese spreads

  • Fat-free mozzarella


  • All fresh and dried fruit

Nuts & Seeds

  • Almonds

  • Black Chia seeds

  • Black sesame seeds

  • Brazil nuts

  • Cashew nuts

  • Coconut

  • Golden flaxseed

  • Hazelnuts

  • Macadamia nuts

  • Peanuts

  • Pecans

  • Pine nuts

  • Pistachios

  • Pumpkin Seeds

  • Sunflower Seeds

  • Tahini (white sesame seed paste)

  • Walnuts 

  • White sesame seeds

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


  • Nori

  • Wasabi

  • Fish sauce

  • Herbs

  • Spices

  • Ketchup / tomato sauce

  • Bisto gravy powders

  • Stock - chicken or vegetable

  • Honey

  • Jam

  • Marmite

  • Cocoa Powder

  • Crisps / potato chips

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

  • Homemade puddings with only low phytanic acid ingredients


  • All fresh and frozen vegetables

Fats and Oils

  • Vegetable oils

  • Nut and seed oils made from any of the nuts and seeds listed on the GO list (except flaxseed / linseed oil)

  • Vegetable suet

  • Vegan and vegetable oil spreads

Biscuits and confectionery

  • Boiled sweets or sugar candy

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

  • Dark chocolate (e.g. 70 or 90%)

  • Liquorice

  • Vegan/dairy free chocolates

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

  • Vegan ice cream


  • Black Beans

  • Butter Beans

  • Chickpeas

  • Edamame Beans

  • Green Lentils

  • Kidney Beans


  • Tea

  • Fruit juice

  • Coffee (see information on caffeine recommendations)


These foods need to be limited as they contain moderate amounts of phytanic acid. A total of a 100g portion of one or any combination of the below foods can be taken once a day.  If your phytanic acid levels are not responding to these restrictions (i.e., remain high), consult your dietitian for specific guidance.


  • Frankfurter sausage

  • Rabbit

  • Veal

  • Fatty Bacon

  • Pork Belly, pork lard, sausages, shoulder (higher fat cuts)

  • Mortadella

  • Dried Pork (prosciutto)

  • Salami


  • Calamari (not coated/crumbed)

  • Dressed tinned crab

  • Halibut

  • Herring

  • Tinned tuna (water/brine)


  • Fat-free and low-fat cottage cheese


  • Rice crispies


  • Baked Beans


These foods need to be avoided as they are high in phytanic acid


  • Beef

  • Goat

  • Lamb

  • Mutton

  • Sheep

  • Venison

  • Pork offal (tongue, liver, kidney)

Milk & Milk Products

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

  • Buttermilk

  • Fat free milk with added DHA (Omega 3)

  • Full fat, whole or semi-skimmed milk

  • Evaporated milk 

  • Full fat yoghurt

  • Ice cream


  • Cod

  • Crab, tinned, white meat

  • Flounder

  • Fresh tuna or tinned in oil

  • Haddock

  • Mackerel

  • Oysters

  • Plaice

  • Salmon

  • Sardines

  • Smoked salmon

  • Trout

Cheese & Cheese Products

  • Cheese spread

  • Full fat Cottage cheese

  • Cream cheese

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

  • Processed cheese 

  • Halloumi

Biscuits and confectionery

  • All baking that includes butter, milk or other dairy

  • Chocolate (white and milk)

Cereal & Cereal Products

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

  • Cereals with dairy


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

Fats and Oils

  • Algae oil

  • Beef suet

  • Butter and half-fat butter

  • Flaxseed / Linseed Oil

  • Fish oil

  • Ghee

  • Margarine (if it contains milk and milk products)


  • Stock – beef or lamb

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

Carbohydrates are important

These should be included at each meal


The brain needs a regular supply of glucose to function. Without a regular supply of glucose, your body will break down its carbohydrate stores and once it has used those, it will break down your fat stores and release phytanic acid from your body fat. It is very important not to follow a low carbohydrate diet.  Carbohydrates can come from starchy foods (bread, potatoes, rice, pasta, breakfast cereal) and sugary foods (fruit, sweets, fruit juice).  Carbohydrates should be distributed throughout the day (included at each meal and in snacks, including a bed time snack), and should not be less than 200g of carbohydrates in total per day. Carbohydrate free meals should be avoided.


If you have other health conditions such as diabetes, it is important to talk with a dietitian for specific advice.


Ensuring adequate carbohydrates when exercising

It is important to fuel your body with carbohydrates prior to exercise. This could include eating a carbohydrate containing meal or snack before exercising. If exercise lasts longer than 45 minutes, you should take a carbohydrate snack during exercise. For example, if you go on a 90-minute walk you should bring a small snack to eat at 45 minutes (e.g. banana, a couple of dates). If you exercise without adequate carbohydrates, your body will start to break down fat and release phytanic acid. If you are starting a new exercise plan or wanting to increase the amount of exercise you do, it is important to talk with your dietitian. 


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, lean pork (e.g. pork loin, ham without fat, back bacon without fat)

  • Eggs

  • Prawns/Shrimp, Scallops, lobster, clams

  • Perch (wild), coley, sold

  • Quorn

  • Tofu

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

  • Whey powder

  • Fat-free cow's yoghurt

  • Soya yoghurt

  • Fat-free milk

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

  • Pumpkin and sunflower seeds

Eat regular meals and snacks

This means having breakfast, lunch, evening meal and a bedtime snack. If you have a long break between meals (4 hours or more), have a snack. It is particularly important to eat breakfast, so that you break your overnight fast. It is also important that you do not exercise in the morning unless you have eaten breakfast.


Dieting to lose weight is not recommended unless under close supervision of your medical and dietitian team. If weight loss is desired, it is important that you work closely with your medical team and dietitian to develop a weight loss plan and regularly monitor your phytanic acid levels.  Any time you lose weight phytanic acid is released from your fat stores; therefore, very slow weight loss would be recommended.


Avoid high intakes of caffeine

Consuming large amounts of caffeine from energy drinks, sports drinks, or high intake of coffee is not recommended. If consuming products with caffeine, a moderate caffeine intake is advised. For an adult woman (not intending to become pregnant) this would be 200-350mg a day and for an adult man, 300-450mg a day.  Examples of caffeine content in various products are listed below:


Getting enough glucose when unwell

If you are feeling unwell and unable to manage all your usual meals, you will need to consume glucose at regular intervals in order to stop the breakdown of your fat stores and release of phytanic acid into your body. This is called an emergency regime, and an example of one used at Guy’s and St Thomas’ Hospital, London, is included (see Emergency Regimen). This regimen is specific for those who do not have diabetes. If you have diabetes, it is important to contact your medical team and dietitian for specific advice.


Medical procedures or surgery that requires fasting

Fasting for a surgical or medical procedure can result in increasing phytanic acid levels. To prevent the increase in phytanic acid levels, glucose solutions (oral and IV) will need to be provided prior, during and post procedure. If you are having a surgery or medical procedure, please contact your medical/dietetic team to make them aware.


Ensure you are getting your essential fatty acids

Omega 3 and omega 6 are essential fatty acids that the body cannot synthesise and therefore need to be consumed in the diet. Omega 3 and 6 are found in vegetable oils, and can be a source of essential fatty acids on a low phytanic acid diet. In addition, omega 6 can also be found in chicken, eggs and wholegrain breads. It is important to discuss with your dietitian about ensuring you are getting omega 3 and 6 from your diet.


Ensure adequate vitamins and minerals

With all specialist diets it is important to regularly monitor nutritional bloods (for example, vitamin B12, folate, ferritin, vitamin D). These should be monitored annually and vitamin / mineral replacement provided as needed.



If phytanic acid levels continue to be high despite following all Level 1 advice, we would recommend reviewing your diet to see if any of the below foods feature. These foods contain phytyl fatty acid esters, which could be contributing to your phytanic acid levels in your blood. If you are consuming any of these foods regularly, it is recommended to speak with your dietitian for specific guidance.


These foods contain moderate amounts of phytyl fatty acid esters. A total of a 100g portion of one or any combination of the below foods can be taken once a day.

  • Tahini (white Sesame seed Paste)

  • Pumpkin Seeds

  • Seasame Seed Oil

  • Olive Oil

  • Soy Oil

  • Peanut Oil

  • Peanut Butter

  • Peanuts

  • Pecans

  • Broccoli

  • Rocket / Arugula

  • Red and Yellow Bell Peppers

  • Green Olives

  • Edamame Bean

  • Chickpeas

  • Dairy free / vegan butters, cheese, cream, cheese spread or whipping creams containing any of the above oils


These foods are high in phytyl fatty acid esters.

  • Flaxseed / Linseed oil

  • Black seasame seeds

  • Sunflower seeds

  • Golden flaxseed

  • Kale

  • Soy burger (Beyond beef)

  • Dark Chocolate

  • Dairy free / vegan butters, cheese, cream cheese, cheese spread or whipping creams containing flaxseed / linseed oil

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