Dietary and Nutritional

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Table of Contents
General Nutritional Information
Calculations for Glucose IVs
Acute Hepatic Poprphyria Dietary Notes
     Foods to Avoid
     Must Have
A Hypertension Diet
A Diet for Neuropathy
Potassium Deficency Diet
Sulfa,Sulfur,Sulfites Notes
Nutritional and Dietary Data

General Nutritional Information

We are indebted to Sheryl Wilson MSN,RD
for much of the information in these web pages
and her PES website "Nutritional Info"

Hepatic Porphyria Dietary Needs:

Porphyria attacks are caused by the overproduction of porphyrins in the liver. Overproduction of porphyrins occurs when a person has too low a caloric intake, especially that of carbohydrate containing foods.

A minimum of 300 grams per 24 hours of carbohydrate has been found to be a dietary control of the precursors of acute attacks.

When a patient has exacerbation of another medical condition, especially conditions like influenza where vomiting and diarrhea may occur, it is necessary to have carbohydrate intake of 400-500 grams, which often includes intravenous infusion of glucose with necessary added electrolytes.

Dieting is permitted during times of remission, but may not go more than 10% below the established BMR for the patient.

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Glucose IV Calculations

7.5 grams of carbohydrate = 56 Calories
Note: To empty a 1000 ml bag at 150 ml per hour requires 6 hr 40 min.
We use 6hr or 900 ml in the calculations below.

5% DW at 150 ml per hour = 7.5 grams of glucose per hour
5% DW at 150 ml per hour = 56 calories per hour
For a 24 hour period (4 -1,000 ml bags back-to-back) = 180 grams of glucose.
For a 24 hour period (4 - 1,000 ml bags back-to-back = 1344 calories

*To bring AIP into remission a total of 400 grams of carbohydrate is
needed. An additional 220 grams of carbohydrate must be consumed.

If DW 10 is being used one would realize 15 grams per hour. Which
would be 360 grams of carbohydrate by infusion with 40 grams remaining to be consumed.

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Acute Hepatic Porphyria Dietary Notes

Glucose and other carbohydrates can repress the pathway for synthesis of heme in the liver. As a result, the overproduction of porphyrin precursors and porphyrins is repressed by carbohydrate administration.


Alcoholic beverages
Negative caloric intake -more than 10% below your BMR (basic metabolic rate)
Low carbohydrate intake (less than 300 grams daily)
*During active acute attacks avoid having less than 450-500 grams daily
including IV infusion supplementation.
Fasting more than 3 hours
*Vital to have steady carbohydrate intake around the clock.

Porphyrinogenic foods
     *Porphyrinogenic foods contain chemicals that stimulate heme synthesis.

     Brussel sprouts
     Red plums
     Red grapes
     Red / purple grape juice

Sulphur containing foods
     Brussel sprouts
     Raw onion
          Egg Yokes

Sulphite containing foods

          *Be aware of presevatives in foods as most contain sulphites.
     Dried fruit
     Lemon & Lime Juice
     Fresh shrimp
     Grape Juice

Iron supplements

Restrict fat and protein during active porphyria, otherwise follow RDA.
Remember that acute porphyria increases CSF protein levels, elevates cholesterol, lipids and blood glucose level.

Avoid High fiber intake due to bezoar formation in acute porphyria patients <40%

Avoid Chamomile containing foods

*Known sensitive reaction for acute porphyria patients, like that of ragweed.

Balsam containing foods
     Citrus fruits
     Spices including Vanilla
     Soy containing products.
          *Soy is a natural estrogen. Estrogens are contraindicated in acute porphyria.
Cholesterol must be <300 daily.

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Must Have

Carbohydrate intake must be 60% of daily intake. >300 grams daily

Must have carbohydrate every 2-3 hours around the clock.

*If diabetic be sure to include more than one nightime snack to avoid blood sugar drops.
Keep Fat intake low. If there is kidney involvement fats should be <30 % daily.
Protein should follow RDA during remission.
6-8 8 oz glasses of water daily
Folate supplementation (if using antiseizure medication).
Magnesium supplementation (if using dieuretic)
Magnesium must be used along with 400 units of vitamin D to enable proper calcium absorption in acute porphyria.
Niacin (Time releaed capsules may be used for controlling cholesterol levels.)

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For nutritionally controlling hypertension the following list may be used in
"cutting back" and reducing dietary inducers of hypertension. Remember that hypertension is often associated with acute porphyria.

     Added salt

     Alcoholic Beverages

     Caffeine containing foods
          Soda pop
     Foods containing high amount of bicarbonate of sodium.

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While there is no one set given list of foods that are known to improve PN, there are a few to avoid. Foods to Avoid in PN

Alcoholic beverages
Avoid foods containing caffeine. There is medical eveidence that caffeine contributes to neuropathy as well as pain in PN.

     Coffee (with caffeine)
     Tea (with caffeine)
     Soda pop (with caffeine)

Certain Vitamins
     Vitamin A (mega doses)
     Vitamin D (mega doses)
     Vitamin B-6 (Pyridoxine)
A Beneficial Mineral
*Added magnesium has been found to be beneficial in the reduction of back pain.

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*In the acute porphyrias there is often an associated deficit of potassium when blood serum electrolytes are run in the laboratory.
Therapy to correct the Potassium deficit uses a combination> Close monitoring of your blood serum potassium is necessary. Be sure to have it check regularly.

Most likely the potassium deficit is twofold.
Potassium deficit is due in large part to (1) the manifestations of acute porphyria and the loss of potassium due to vomiting during attacks
and (2) the daily use of a diuretic.

The normal blood serum potassium range runs (3.6 - 6.5). For acute porphyria patients the desired level runs 4.00 - 6.00.

Potassium therapy calls for the daily prescription intake of Potassium tablets. During times of acute activity added potassium of 20 meq's per 1,000 ml iv solution every 6.5 hours gives an additional 80 meq's daily during the times of peak loss of Potassium.

Daily ingestion of potassium is also important. The following is a guideline of food potassium levels.

High Potassium Levels (201 -350 mg)

Orange juice
Pepper Chilies
Tomato Juice
Tomato Sauce

Medium Potassium Levels (101 - 200 mg)
Apple Juice
Apricot Nectar
Apple Juice
Lemon Juice

Low Potassium Levels (0 - 100 mg)
Cranberry Juice
Grape Juice
Papaya Nectar
Peach Nectar
Pears (Canned)
Bean Sprouts
Green Pepper
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Dietary Notes regarding Sulphur / Sulfur

Sulfas, sulphites and sulphurs are contraindicated for porphyria patients.
One does need to look at food labeling to know what are sulphur based products.

If you want to avoid sulfur-based preservatives, these are the names to watch for:

Sulfur Dioxide
Sodium Sulfite
Sodium Bisulfite
Sodium Metabisulfite
Potassium Bisulfite
Potassium Metabisulfite

Many commonly used products at home contained some of the above ingredients.
Many of these products are medicinals.
Sulfur is used to treat many kinds of skin disorders and is contained in cream, lotion, ointment, and bar soaps. It is also found in numerous ointments.

Normally healthy persons, though not all, are able to process sulfur, but when sulfur is used to create sulfites, many people experience adverse reactions. Almost all known porphyria patients will have some reaction. And it has been authenicated by the FDA that several deaths have been the result of reactions to sulfites.

Such sulfite reactions can range from behavorial reactions to breathing difficuties, rash, hives, and insomnia. Most porphyria patients are more sensitive than others to chemicals and are very sensitive to the sulfur-based preservatives.

Drugs derived from sulphur elements are to be avoided by patients with liver disease.

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