The following is how we structure my diet to avoid attacks. We’ve developed this through research and trial & error (painful). Please do your research; I am not a dietician or doctor. And, be careful.
Some things are absolute triggers, like broccoli; while other things are irritants. An irritant (in our definition) may or may not cause an attack; it depends on my general health and if irritants reach a tipping point.
- Eat mostly carbohydrates, preferably raw fruits and vegetables; moderation has to be exercised with fruits, because of the fructose. I can eat carbs with no protein or fat. Pasta and potatoes are ok; but, veggies are better.
- Go light on protein; eat preferably chicken or white fish. Make sure there are a lot more carbohydrates on the plate, than protein & fat.
- Eat fruit on an empty stomach, as it screws up digestion when eating fruit after pasta’s or meat.
- Eat lots of mushrooms – good for the liver. The liver is where the heme production is faulty in AIP, Variegate, etc. Also, any type of porphyria creates poisons for the liver to have to deal with.
- Add milk thistle to drinks – good for the liver. However, it is bad for those with hereditary hemochromatosis.
- Glucose tablets and glucose powder when feeling symptoms coming on. See products page.
- When using apple juice on cereal, I add glucose powder to offset the fructose
- Trigger broccoli
- Trigger cucumbers
- Trigger white chocolate
- Trigger almond milk
- Trigger maca
- Trigger going hungry.
- Trigger red grapes / red wine
- Avoid fat – this is hard to do. Read the contents of food at the grocery store.
- Avoid porphyrenogenic foods (stimulate heme synthesis) – red grapes / grapejuice, red plums, red/purple prunes, cabbage. There may be others. * Thanks to Chris’ comment pointing out the problem with red grapes.
- Avoid fructose, sucrose, maltose, and lactose – again, this is hard to do as fructose is in everything. Table sugar is a disaccharide composed of fructose & glucose.
- Avoid alcohol – again hard to do; my favorite beer is Sweetwater IPA…but, those days are gone.
- Avoid MSG
- Avoid caffeine (I used to have 1-2 cups of coffee daily…I really miss those days). I still have a cup or two with my wife on Saturday and Sunday; pleasant way to start the day.
- Avoid sulfites – They are everywhere; there is even a website dedicated to this (http://holdthesulfites.com/). My first cut at a list included tomatoes, dried fruit, bananas, bottled lemon / lime juice, grape juice (all colors), pickles in jar, yellow die #5, powdered mash potatoes. A comment by Ann clued me in on the depth of this problem.
- Avoid chocolate, especially white chocolate
- Avoid bottom feeders – cat fish, shrimp, etc; they eat a lot of garbage. I picked this up reading The Makers Diet, by Jordan S. Rubin.
- Avoid farm raised tilapia – I saw an episode of “Dirty Jobs”, in which Mike Rowe is helping clean out a fish farm, after the primary fish had been harvested. They then used tilapia and another fish to clean up the droppings. Ever wonder why tilapia has become so plentiful and cheap. As Mike said “poo”
Suggestions from comments made by others in the porphyria club (that I have no experience with):
- Avoid guar gum & similar thickening gums (gum Arabic, carob bean gum, etc) * Thanks to Zibbi for the comment pointing this out.
- Avoid “natural cinnamon flavor” (cinnamaldehyde) * Suggestion from Zibbi. Actually, anything labels “natural … flavor” is probably fairly risky.
- Be careful with spinach & green beans. If I eat a bunch, it bogs me down; so, I have them in moderation…however, I’ve heard they are both triggers from some sufferers.
We joke in my home, that if it tastes good, I can’t eat it.