Restricted Foods

One of the hardest things about living with Porphryia is eating a healthy-for-Porphyriacs diet.  There are so many food triggers and there is lots of conflicting information about what Porphyriacs can and can't have.

Our approach: We use this list more as a guideline rather than a hard-fast rule and you probably should, too.  Everyone responds differently to different triggers.  Essentially, you need to know your body and your triggers.  Your best bet in determining how foods affects you is by doing an elimination diet.  While you don't need to do this under the care of a doctor or Registered Dietitian, you probably should.

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Some of the distinctions between the "Foods to Avoid" and "Foods to Enjoy Occasionally" categories are somewhat arbitrary.  The main reason for this is that we're not quite ready to give up items in certain categories (mainly alliums and dairy).

Foods to Avoid (High in phytoestrogens or sulfur)

Foods in this category should be avoided or eaten/taken infrequently at most.  They may be high in phytoestrogens or sulfur or they may be porphyrenagenics.  We do our best to avoid items in this category as much as possible.
  • Alcohols and vinegars: Prepared mustard, all alcoholic drinks, all vinegars
  • Brassica vegetables: bok choy, broccoflower, broccoli, broccoli rabe/rapini, Brussels sprouts, cabbage, canola/rapeseed oil, cauliflower, collard greens, daikon radish, horseradish (reg or Japanese), kale, kohlrabi, maca, mustard greens, pak choi, peppergrass, radish, rutabaga, turnip, wasabi, watercress
  • Fabacea vegetables: chickpeas/garbanzo beans, kidney beans, lentils, lima beans, peanuts
  • Fruits: coconut (sulfured), dried fruits (sulfured), grapefruit, prepared lemon/lime juice (sulfured), prunes, raisins, red grapes, red plums, red/purple grape juice, tangelo
  • Supplements: Acidophilus (dairy source), ALA, Biotin/Vitamin B7/Vitamin H, bromelain, chlorella, Cysteine, DMSO, extracts of the high sulphur foods, glutathione, Methionine (converts into cysteine), MSM, NAC, papain, Thiamin/Thiamine/Vitamin B1/aneurine, Turmeric
  • Uncategorized: asparagus, barley, chamomile, clover, fennel, flax, millet, rye, sesame seeds, spinach

Foods to Enjoy Occasionally

Foods in this category may be eaten, as the title suggests, occasionally.  They may have a higher level of phytoestrogens or sulfur, but not as high as those items listed above.  We try not to eat these items that often, but we're not super strict about it.
  • Allium family: chives, garlic, kurrat, leek, onion, ramp, ramson/buckram, shallot 
  • Dairy products: cheese, cream, milk, ricotta cheese (also has vinegar), sour cream, whey
  • Fabacea vegetables: beans of all sorts, bean sprouts, carob, green beans, jicama (yam bean), peas, split peas
  • Fruits: papaya, pineapple
  • Other: chocolate

Foods Not Yet Assessed

Foods placed in this category may have conflicting information as to whether they are porphyrenagenic or not.  Also, there may be conflicting anecdotal evidence as to how they affect certain individuals.  Or, we may really like food items in a certain sub-category and are really loathe to cut it out without some serious testing first. We try not to eat these items that often, but we're not super strict about it.

  • Fruits: apple skins, avocado, banana, cranberry, raspberry, watermelon
  • Other: coffee, egg yolks, meat, seeds, tea, turmeric, yeast extract (vegemite)
  • Uncategorized vegetables: corn, cucumber, kelp/kombu/alginate, okra, sweet potato (american yam), swiss chard, tomato

NOTE:

I am not a Registered Dietitian. I have compiled this list based on information found on the web.  I've done my best to make sure that it is accurate, but I can't be 100% sure about that.  I've culled most, but not all, of my information from the following links: 
Porphbook on Tripod
High sulfur/thiol raising foods (LivingNetwork) 
High sulfur foods (Canary's-eye view)
PorphyriaFacts (this site is really confusing)

Please leave any comments regarding how these foods affect you.  Also, feel free to ask any questions and I'll do my best to help!

(Updated 11/17/11)

8 comments:

  1. I have followed the Porph book diet for 12 years now and did the elimination diet and I am down to only one major attack per year from 15 or so per year, prior to the diet.
    D Sadly for us all, the APF refuses to acknowledge food as being even such a thing as a "trigger". It reminds me of the fight between Standard Medicine, and Alternative, You have die hards in each camp Poo-Pooing the other, while some of us in the middle try from both sides, always testing everything out. Nice Blog!

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  2. Thanks for your comment!

    The Porph book was really helpful when I was doing my research. It was the first page that actually clued me in to the details of foods to avoid.

    I wonder if the APF has that stance because so many people are sooo different? I've spoken to some that will say they're fine with tomatoes and onions and others who get the beginnings of an attach when they eat them.

    It's all interesting.

    Thanks again for the comment!

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  4. I'm sorry but I don't think chlorella supplement should be avoided. It's a great detox partner and I can actually attest to it because I've been taking it for almost a year and it's really effective in detoxifying my body.

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  5. I wish I had seen this earlier. I took Biotin for about three months last winter to attempt to jumpstart some hair regrowth after surgery and pain meds started it falling out. I was miserable the entire three months. No hospitalization or anything, just constant belly pain.

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  6. Shouldn't eggs be the first thing listed?

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  7. I cannot even smell garlic. i eat tomatoes, lemons & broccoli a lot though. I can't eat eggs, oranges, corn, wheat and i have a reaction to red food dye. i stay away from anything with estrogen. green raw things are best. Vitamin water is about the only thing i can drink without any negatives (besides bottled water, but that's lacking nutrients). I got my Medical Marijuana card in Colorado and that's the best medication for all the symptoms. and if you eat the raw plant, like juicing, you get that chlorophyll. Chlorophyll is the best thing for us. Besides blood itself. they are the only two things with complete poryphin chains. broken poryphin chains are the cause of all the problems. i can eat dark lettuce during an attack and have immediate relief.

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  8. i am ok with banana, avocado, corn, eggs, dairy, split peas.

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