dietary guidelines are recommended for Porphyrics...|
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.
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."
% Of Daily Intake
% Of Daily Intake
* Total Calorie Intake Is 1800 Percentage Is 100%
(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)
(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
(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
(7g protein, 5g fat, 75 calories)
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
(5g fat, 45 calories per serving)
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.)
(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
(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
Containing Natural Estrogens -
which you may want to seek out, or avoid.
|Barley||Isoflavones, Coumestrans, Resorcyclic acid & lactones|
|Black Eyed Peas|
|Corn||1981 LA State U Med Center found death rates of colon, breast & prostate cancer were lower among populations w/increased per capita consumption|
|Oats||Isoflavones, Coumestrans, Resorcyclic acid & lactones|
|Olives & Olive Oil|
|Rice||Isoflavones, Coumestrans, Resorcyclic acid & lactones|
|Rye||Isoflavones, Coumestrans, Resorcyclic acid & lactones|
|Soybeans||Apparently 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...)|
|Wheat||Isoflavones, Coumestrans, Resorcyclic acid & lactones|
From Other Porphyria Patients
|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.
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.
4. peppers (all types)
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.
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
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.
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.