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Nutritional Information For Porphyrics

The following dietary guidelines are recommended for Porphyrics...
  • Energy intake should be prescribed at a level to maintain a desirable body weight.
  • Carbohydrate intake should be 55 to 60 percent of total energy intake.
  • Protein intake should follow the RDA. (Recommended daily allowance.) This may be increased in elderly subjects, and reduced if there is kidney impairment.
  • Total fat intake should be less than 30 percent of total calories. (Particularly in individuals with high blood cholesterol levels, saturated fat should be less than 10 percent of total energy intake, polyunsaturated fat 6 to 8 percent, and the remainder monounsaturated fat.)
  • Cholesterol intake should be less than 300 milligrams per day.
  • Artificial sweeteners are acceptable.
  • Salt intake need not be restricted unless it is important for controlling hypertension. (The management of hypertension (high blood pressure) may include salt restriction. This is not discussed here because most patients with porphyria do not have persistent hypertension.)
  • Intakes of vitamins and minerals should meet the RDAs.
  • Calcium intake in women should be at least one gram daily.
  • Iron intake should be adequate to avoid iron deficiency. Women with heavy menstrual blood loss and patients who have had frequent blood drawings due to illness and hospitalization may require greater intakes of iron. (Iron is a component of heme. Iron deficiency can compromise heme synthesis and may exacerbate porphyria. Therefore, iron deficiency should be avoided in porphyria. Early iron deficiency occurs before there is anemia (low blood count). Early iron deficiency can be detected by tests such as serum iron and iron-binding capacity, and serum territin.)
  • Alcoholic beverages should be avoided. Alcohol stimulates the heme biosynthetic pathway in the liver and can itself exacerbate porphyria. Alcohol has other harmful effects and can lead to weight gain. Some experts feel that small amounts of alcohol are not harmful in porphyria while others feel that even small amounts should be avoided.
  • Fiber intake should be about 40 grams per day, but should not be increased above 50 grams per day. (A high-fiber diet may increase the requirements for calcium, iron and trace minerals. High dietary fiber intakes should be avoided in patients with upper gastrointestinal problems (abnormalities in the esophagus or stomach) because sometimes excess fiber can accumulate in the form of "bezoars." Increasing dietary fiber intake sometimes causes abdominal cramping, diarrhea and flatulence. These can be minimized by increasing fiber intake gradually.)
  • Foods contain many natural chemicals that can stimulate the heme biosynthetic pathway. Although none have been definitely linked to attacks of porphyria, the possibility that these chemicals might contribute should be kept in mind especially when attacks of porphyria recur in the absence of a definite inciting factor. Some of the dietary factors that might have an adverse effect on porphyria include charcoal-broiled meats (which contain chemicals similar to those found in cigarette smoke), certain vegetables (such as cabbage and brussel sprouts which may contain chemicals that in large amounts can stimulate heme and porphyrin synthesis), and high intakes of protein. Probably, none of these foods need to be completely avoided in porphyria. However, it is important to consume a well-balanced diet and not to consume any particular type of food in excess. (The best way to maintain a well-balanced diet is to learn to eat a variety of foods from what are commonly referred to as the four major food groups. Detailed advice on how to do this should be sought from a dietitian.)
  • Food intake should be consistent, but should take into account lifestyle and physical activity.
  • The total daily energy intake should be distributed consistently with at least three regular meals each day.
  • Total energy intake must be individualized, because it varies with age, sex, and body weight, and is affected by physical activity. (Dietitians employ standard methods to estimate daily energy requirements. One of these methods is the Harris-Benedict equation.) It can also be greatly altered by illness.
  • Nutritional management of acute attacks of porphyria

    Intravenous administration of glucose (a pure form of carbohydrate) is part of the standard treatment of acute attacks of porphyria. Glucose is given by vein because the stomach and intestine usually do not function properly during an attack, and material taken by mouth is not properly propelled through these organs. Glucose and other carbohydrates can repress the pathway for synthesis of herne in the liver. As a result, the overproduction of prophyrin precursors and porphyrins is repressed by carbohydrate administration. Heme therapy (intravenous administration of hematin or heme arginate) has a similar but much more potent effect, and probably leads to more rapid improvement. Therefore, heme rather than glucose is becoming more accepted as initial therapy for an acute attack. However, it is still important to administer glucose and other nutrients. Particularly if an acute attack is severe or prolonged, sufficient glucose can be given by vein to meet the total energy requirements of a patient. This is best accomplished by a catheter that is inserted into a large central vein. Additional nutrients, including vitamins, minerals, amino acids and fat can be given in the required amounts to maintain all requirements. Provision of total nutritional needs in this manner by vein is commonly called "total parenteral nutrition". After recovery from an attack a high carbohydrate regimen should be prescribed, as described above.


  • More Nutritional & Dietary Info Porphyrics...

    Fasting or dieting is not permitted in people who have porphyria, as it can provoke an acute attack.

    The extra intake of sugar or glucose that is required to cure an acute attack may lead to a problem of overweight. Dieting should be avoided.

    A diet should be rich in fiber as constipation is a common complication for people suffering from porphryia.

    Bran should be included daily, 3 tbsp is a suitable quanity. It can be taken with a glass of water or added to milk, pancake batter, bread, waffle batter, minced meat, or Juice. 3 tbsp. of bran is about 20 calories.

    The remains of insecticides plus heavy metal toxins are stored in the liver. Eating liver should be avoided especially from wild game and poultry.

    In order to avoid insecticides in green vegetables and root vegetables, always peel and rinse them properly. Potatoes should be peeled before cooking.

    Only fruits that are not sprayed should be eaten without peeling, peel all other fruits.

    It is recommended that you avoid all alchoholic beverages, including those with low alcohol content. You should also avoid cooking, baking or marinating foods with products that contain alcohol, because they leave trace amounts behind on your food.

    Taking strong spices in excess effect some people with porphyria in negative ways.

    It is recommended to consume 6-8 (8oz) glasses of water along with other beverages high in glucose per day. (gatorade and other sport drinks are great sources of beverages high in glucose) -- also see recipe below.

    Fruit and Veggies that produce high alkaline urine are recommended for someone with porphyria.

    For an acute attack, extra carbs as in sugar or glucose are required. Some suggestions of this are as follows:
           a) 4 lumps of sugar per hour
           b) glucose tablets
           c) ready prepared glucose solutions
           d) gatorade or other high glucose beverages
           e) fruit pectin (nectar) drinks
           f) caffeine-free soft drinks ( gingerale)

    NOTE: other suggestions are routinely offered and may be helpful ! Recent suggesstion of D-50 bolus push at the hospital in addition to normal IV glucose have been highly recommended and are highly encouragable. Discuss this with your doctor and possibly have standing orders at your local ER if needed.

    NOTE2: Without a doubt, get diet counseling. Ask your doc for a prescription and it will probably be covered by your insurance or government medical assistance.


    From A VERY Respected Porphyric (an RN with diet counseling too!)... "I use this as a guide on how to plan my meals, and that way I know approx how many carbs are in what I am eating. As u can see, tons of carbs are in the fruit section. I went and received nutritional counseling a few years ago, and this is all the info that they gave me... My nutritionist also gave me this info. What is right for me might not be good for others, but she said this is pretty standard for porphyria... You can decide if you want to use it or not."



    Average Daily Guidelines For A Normal Person
     

    Grams

    % Of Daily Intake

    Carbohyrdates

    ---

    50%

    Protein

    ---

    20%

    Fat

    ---

    30%


    Average Daily Guidelines For A
    Porphyria Patient
     

    Grams

    % Of Daily Intake

    Carbohyrdates

    279

    62%

    Protein

    59

    13%

    Fat

    50

    25%

      * Total Calorie Intake Is 1800             Percentage Is 100%



    High Carbohyrdate Foods...
    Starch/Bread
    (15g carbs, 3g protein, trace of fat, 80 calories per serving) these are estimates

    1 slice of bread or roll
    1/2 english muffine or bagel
    1/2 c. oatmeal
    1 oz. ready-to-eat cereal ( unsweetened)
    1/2 c. cooked pasta
    1/2 c. starchy vegetable (corn, peas, or potatoes)
    1/3 c. cooked rice, beans or sweet potato
    3 oz. baked potato
    3/4 oz. pretzels
    3 c. popcorn (popped without fat, plain)
    6 saltine crackers
    1 c. soup (broth type)
    Starch with Fat
    (
    count as 1 starch plus 1 fat exchange)

    1 biscuit (2 1/2")
    2 pancakes (4")
    1 waffle (4 1/2")
    1 small muffin (2")
    2 taco shells (6")
    1 1/2 oz. french fries
    Lean Meats
    (7g protein, 3g fat, 55 calories per serving) These are approximate amounts

    1 oz fish
    1 oz skinless chicken or turkey
    1 oz lean pork
    1 oz veal
    1 oz. lean beef
    1/4 c. cottage cheese
    1/4 c. tuna
    2 tbsp. parmesan cheese
    3 egg whites or 1/4 egg substitute
    Medium Fat Meats
    (
    7g protein, 5g fat, 75 calories)

    1 egg
    1 oz. low fat cheese
    1/4 c. ricotta cheese
    1 oz. beef, pork or veal

    High Fat Meats
    (7g protein, 8g fat, 100 calories per serving)

    1 oz. prime cut of beef
    1 oz. spareribs
    1 oz. sauseage
    1 oz. regular cheese
    1 oz. luncheon meats
    1 oz. hot dogs
    1 tbsp. peanut butter

    Fats
    (5g fat, 45 calories per serving)
    Unsaturated Fats


    1 tsp margerine,cooking oil or regular mayonaise
    1 tbsp of regular salad dressing
    1 tbsp of nuts or seeds

    (warning: some people cant tolerate nuts with their porph.)
    Vegetables
    (5g carbs, 2g protein, 25 calories per serving) these are estimates

    1 c. raw vegetables
    1 medium tomato
    1/2 c. cooked vegetables
    1/2 c. vegetable or tomato juice
    Milk
    (12g carbs, 8g protein, 1-5g fat, 90-150 calories per serving)

    1 c. whole milk
    1 c. low-fat buttermilk
    8 oz. yogurt
    1/2 c. evaporated milk
    1/3 c. non-fat dry milk

    Fruits
    (
    15g carbs, 60 calories per serving)

    1 med fresh fruit or 1/2 c. fresh fruit
    1/2 c. orange, grapefruit or apple juice
    1/2 banana or grapefruit
    1/3 c. grape, prune or cranberry juice
    1/2 c. canned fruit (no sugar added)
    1/4 c. dried fruit
    2 tbsp. raisins
    1 1/4 c. strawberries
    1 1/4 c. watermelon
    1 c. canteloupe
    1 c. honeydew melon
    15 grapes
    12 cherries


    Foods Containing Natural Estrogens -
    which you may want to seek out, or avoid.

    Alfalfa Isoflavones 
    Anise Seed 
    Baker's Yeast  
    BarleyIsoflavones, Coumestrans, Resorcyclic acid & lactones
    Beets  
    Black Eyed Peas  
    Cabbage 
    Carrots  
    Castor Plant 
    Chickpeas  
    Clover Coumestrans
    Coconut 
    Coffee  
    Corn 1981 LA State U Med Center found death rates of colon, breast & prostate cancer were lower among populations w/increased per capita consumption
    Corn Oil  
    Cucumbers  
    Dates  
    Eggplant 
    Fennel 
    Flaxseed 
    Garlic 
    Green beans 
    Hops 
    Licorice 
    OatsIsoflavones, Coumestrans, Resorcyclic acid & lactones 
    Olives & Olive Oil 
    Papaya 
    Parsley  
    Peanuts 
    Peas 
    Peppers 
    Plums 
    Pomegranates 
    Potatoes  
    Pumpkin   
    Rape 
    Red Beans 
    Red Clover 
    Rhubarb 
    RiceIsoflavones, Coumestrans, Resorcyclic acid & lactones 
    RyeIsoflavones, Coumestrans, Resorcyclic acid & lactones 
     Sage 
    Sesame Seeds 
    SoybeansApparently most closely similar to human estrogen. Increased hot flashes have been reported by some asm members   Soy page of menopause on line www.soyfoods.com (USsoyfoods directory with recipes, research, references...) 
    Split Peas 
    Squash 
    Sunflower SeedsCoumestrans 
    Tomatoes 
     WheatIsoflavones, Coumestrans, Resorcyclic acid & lactones 

     

    Some Comments From Other Porphyria Patients
    Regarding Their Nutrional Requirements & Problems...

    Regarding Milk &
    Other Dairy Products...

    I can enjoy dairy,too, with lactaid.  I use the 100% lactaid free and fat free milk.  If I don't use to much, I'm fine.  And I can eat a little ice cream or yogurt, if I use lactaid ultra. 
    Trigger Foods...
    I am one of those people that can't tolerate these foods for some reason they set me off into attacks, not allergic reactions but full blown attacks.
    1. soy
    2. cabbage
    3. Leeks
    4. peppers (all types)
    5. cauliflower
    6. nuts (all nuts except for regular peanuts)
    7. spices that contain MSG
    8. pickled foods
    More On Ice Cream...
    I used to get deathly sick from ice cream because I have problems with lactose and with preservatives. I went out a few months ago and bought a special ice cream maker. This machine doesnt use rock salt or any type of chemicals. I experimented with it and made my own recipes. I dont use any type of preservities in my own ice cream and i can eat and eat, and dont get sick anymore.
    Concerning Soy...
    Soy contains 'phyto-estrogens' which are plant estrogens.  Estrogen is estrogen and it is contra indicated for most of us.

    And A Soy Follow-Up...
    Happy to report I am feeling so much better since I stopped the intake of soy milk.  Thank you all for setting me straight on the phyto-estrogen in soy products.  I really believe that is what triggered this last attack now and plan to avoid it in the future. 
    Soy, Flax, An Oil...
    More information on soy and flax.  I also get nauseated from flax, which is supposedly a good substitute and cheaper than Evening Primrose Oil.  Incidentally, I think Evening Primrose is good for a number of things.  It gave me a great energy boost when I first started taking it about eighteen years ago, and I have never stopped taking it.  It is good for so many things that I'll let people look into that themselves.  I never understood why I got nauseated from flax, but now that you tell me it has phytoestrogens, I can see why. 
    Soy Is A Troublemaker !
    I had heard through a well-likedTV doctor that soy protein--tofu--was a good substitute for estrogen and a good cancer preventive as well.  My husband and I started eating it daily.  For a few months, OK, but then I developed stomach cramps every time I ate it.  Now when I try it, must stop immediately.  Don't know if allergy or porphyrogenic, but I do know from T-V doctor that soy has "phytoestrogens" in it.  

    SUBMIT YOUR OWN SUGGESTIONS ON FOODS,
    HERBS, VITAMINS, ETC...
    HELP US ALL !
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    Standard Disclaimer... This information is for educational purposes and is intended to serve as a guideline for the nutrional needs of Porphyria patients. You are advised to use this information at your own risk, and only after consulting with your own physician. Follow your doctor's instructions, and do not eat anything that you feel may precipate an attack. Also avoid foods that you may be allergic to. All Porphyria patients should receive nutrional counseling from a licensed dietician or physician.