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Vorstand

Unser Vorstand ist Teil der von der Refsum-Krankheit betroffenen Gemeinschaft und hochmotiviert alles zu tun, um bessere Therapiemethoden und letztendlich eine Heilung zu finden. Da wir selber, direkt oder indirekt, von der Krankheit betroffen sind, setzen wir uns voll und ganz für die Sache der Refsum-Betroffenen ein.

Unser Vorstand ist Teil der von der Refsum-Krankheit betroffenen Gemeinschaft und hochmotiviert alles zu tun, um bessere Therapiemethoden und letztendlich eine Heilung zu finden. Da wir selber, direkt oder indirekt, von der Krankheit betroffen sind, setzen wir uns voll und ganz für die Sache der Refsum-Betroffenen ein.

Unser Vorstand ist Teil der von der Refsum-Krankheit betroffenen Gemeinschaft und hochmotiviert alles zu tun, um bessere Therapiemethoden und letztendlich eine Heilung zu finden. Da wir selber, direkt oder indirekt, von der Krankheit betroffen sind, setzen wir uns voll und ganz für die Sache der Refsum-Betroffenen ein.

GO

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

Meats

  • 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

Seafood

  • 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

Fruits

  • 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

Miscellaneous

  • 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

Vegetables

  • 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

Legumes

  • Black Beans

  • Butter Beans

  • Chickpeas

  • Edamame Beans

  • Green Lentils

  • Kidney Beans

Beverages

  • Tea

  • Fruit juice

  • Coffee (see information on caffeine recommendations)

CAUTION

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.

Meats

  • Frankfurter sausage

  • Rabbit

  • Veal

  • Fatty Bacon

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

  • Mortadella

  • Dried Pork (prosciutto)

  • Salami

Seafood

  • Calamari (not coated/crumbed)

  • Dressed tinned crab

  • Halibut

  • Herring

  • Tinned tuna (water/brine)

Dairy

  • Fat-free and low-fat cottage cheese

Cereal 

  • Rice crispies

Legumes

  • Baked Beans

STOP

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

Meats

  • 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

Seafood

  • 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

Vegetables

  • 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)

Miscellaneous

  • Stock – beef or lamb

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

Unser Vorstand ist Teil der von der Refsum-Krankheit betroffenen Gemeinschaft und hochmotiviert alles zu tun, um bessere Therapiemethoden und letztendlich eine Heilung zu finden. Da wir selber, direkt oder indirekt, von der Krankheit betroffen sind, setzen wir uns voll und ganz für die Sache der Refsum-Betroffenen ein.

Unser Vorstand ist Teil der von der Refsum-Krankheit betroffenen Gemeinschaft und hochmotiviert alles zu tun, um bessere Therapiemethoden und letztendlich eine Heilung zu finden. Da wir selber, direkt oder indirekt, von der Krankheit betroffen sind, setzen wir uns voll und ganz für die Sache der Refsum-Betroffenen ein.

CAUTION

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

STOP

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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