Nutritional Information 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.
  

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."

Grams

% Of Daily Intake

Carbohyrdates

---

50%

Protein

---

20%

Fat

---

30%

Grams

% Of Daily Intake

Carbohyrdates

279

62%

Protein

59

13%

Fat

50

25%

  * Total Calorie Intake Is 1800             Percentage Is 100%

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

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