I was recently diagnosed with severe solar urticaria, which is a sun allergy, and porphyria, which is a condition where you do not produce enough heme, which is an essential part of hemoglobin. Symptoms are lowered kidney function, anemia (which among sleepiness also causes dizzy spells), and when exposed to sunlight I suffer an allergic reaction and develop severe skin breakdown which is prolonged due to the porphyria.
My doctor has been researching ways to help minimize my effects, and one of the only things he has found is that eating a diet high in animal proteins and organ meats helps prevent and lessen some of the physical side effects of the porphyria and solar urticaria.
He came across the paleo diet, and thinks it could be quite a good fit for my diseases, but I wanted to become more versed in the diet before I decide for or against this change.
My questions are:
1)Does anybody know of anyone who has either disorder where this diet has helped with symptoms?
2) I have two children, ages 10 and 8, and live with my parents. How difficult is it to maintain a paleo diet when other members of your household are unlikely to follow?
3) Does anybody know of any studies regarding the paleo diet and kidney function? While my kidney function is lower than average, it does not require any forms of dialysis. Does the paleo diet affect kidney function in a positive, poor, or neutral way?
4) What are some tips for people new to the paleo diet?
asked byTrouter (5)
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on June 26, 2012
at 04:33 PM
I don't have much to help you with except:
There's a guy named Aaron Blaisdell who basically put his porphyria into remission via a Paleo diet. (He's a psychology professor at UCLA.) My computer is being wonky at the moment and won't let me bring up this link to verify, but I think there might be something about him here:
Porphyria & diet change (If the whole thing's not about him, I think he may have left a comment in the comments section, so check there too.)
I would check this one out as well:
As for sticking with a Paleo diet when other people in the household are not joining you, that can be very rough. There are a ton of threads here addressing that. You're not alone. Ultimately though, you just have to be tough. The more you stick with it and see/feel positive results, the easier it'll be to stay with it when your family's eating cookies/pasta/whatever. You'll feel too damn good to go back to that.
on July 03, 2012
at 08:08 PM
I have porphyria veriagata (south African) and have a hard time with the sun. At 48 I have started figuring out what effects me and what does not. I am vegan and have been for 21 years. Not eating is very bad and so is eating too much. I am now trying to avoid all wheats and other carbs (pasta etc.) to lose weight and because I do think they effect my skin condition. My hormone levels (female) have a really extreme effect on my skin and mentalstate - have not read anything on the internet about this. But for me this is very evident.
I do not know exactly which porphyria you have been diagnosed with?
on November 01, 2012
at 09:46 PM
My husband has acute intermittent porphyria, and so do his siblings and his mother. They are not allowed to cut carbs out of their diet because carbs are what brings your body out of crisis when you experience stress or sickness. Just be careful about rationing out carbs.