Diet

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.

My Guidelines:

  • 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.   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 if for those with hereditary hemochromatosis.
  • Glucose tablets
  • When using apple juice on cereal, I add glucose powder to offset the fructose

Avoid

  • 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 still have 1-2 cups of coffee daily…shouldn’t; but, I do)
  • 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.

80 Responses to Diet

  1. Hannah Prescott says:

    Hi there, thank you ever so much for posting this. I am having a lot of trouble at present trying to come up with a porph-friendly diet plan. I don’t suppose there is any way you could send me a more detailed list of what you eat (and what you don’t?). Or point me in the direction of a resource? It’s all feeling a bit overwhelming at the moment but I’m reacting to things left right and centre so I really need to find a way to understand all of this. Thank you! Hannah

    • Greg says:

      Hannah,

      I am terribly sorry about the long response time. Finding a diet that suits your needs entails removing all the triggers, while getting enough nutrients…as you are painfully aware.
      * First – plenty of carbs…veggies, pasta & baked / roasted potatoes work best for me. Plain – nothing on them.
      * small amount of protein – chicken or white fish. Avoid frying
      * Keep fats to a minimum & stick with nuts, seeds, and whatever fats you get from the chicken or fish.
      * Avoid fructose – read the labels and choose fruit with as much glucose & as little fructose as possible.
      * Supplement, carefully, with glucose. Too much will make you tired.

      Caveats – broccoli, cranberries, and cabbage are triggers for me. When you are stable, carefully experiment with foods.

      • Hannah says:

        Greg – oh I only just saw this, while yet again searching for porph food info! I must have missed the notification that you replied. Thanks so much for replying to me, and for all of your information. It really helps 🙂 Hope you’re well! Hannah

        • Greg says:

          Hi Hanna,

          WordPress is a great blog tool. I must be doing something wrong; because, I am not getting notifications, either. I am glad that my blog is helping. Please let me know if you have any suggestions in regard to porphyria or improvements that I can make to the blog.

          Thanks,

          Greg…

  2. Corie Ganoe says:

    This is by far the most difficult thing for me. With all the research I have found, it is either too vague or too scientific for this public relations girl! I feel like I need a nutrition degree to understand how I get enough carbs from my caloric intake or is it calories from carbs… Ekkk, so overwhelming! Honestly, I’m so scared to eat. I never feel like eating. I went from being 145 lbs down to 118 lbs now, and I’m a 5’9″ female. I know it’s not healthy but I’m just not interested in food anymore. It is very important and I’m trying. I started a food diary. Thanks for posting your experiences, it really helps to see I’m not the only one struggling with the right combination of food.

    • Greg says:

      It is a real challenge, Corie. I hope my descriptions have been understandable. I have found the same thing as you have – most information is either too vague/generic or too technical. I do have a technical background; but, even with that, it is a real workout, to get through the information. The diet information that I put up may be impacted by the fact that I have diverticulitis; but, it just means that I have to avoid more foods than most people with porphyria.

      I would like to encourage you to be diligent in eating enough carbs, even if you aren’t interested in food. One of my children have the problem with being repulsed by food, sometimes.

      One thing that I have found that really helps is to keep glucose (dextrose) around for a quick carb boost, to keep me going until I can get some food digested. Raw vegetables are the best; but, you do need some protein and something that sticks around, like potatoes or pasta. At least that helps for me. If I have just veggies and some meat, I am hungry in about an hour. Fruit is good for you, too; but, you have to be real careful not to get too much fructose as that will cause an attack.

      Seriously read labels. Try to avoid high fructose corn syrup, msg, and any chemical additives. Stay away from anything involving grapes. My wife says anything red is dangerous; but, I do ok with peppers…so, that is only partially right.

      When I have an attack – painkiller, magnesium, carbs, glucose, rest. Painkiller – first Donnatal and possibly ibuprofen (never Tylenol), escalating to Percocet, last resort is to go to doctor for Morphine. Donnatal is a bit strange in that it contains phenobarbital (which is normally on the bad, bad list); but, the belladonna may correct for that problem. You may find a better (for you) painkiller. Magnesium – to relax the smooth muscles that the attack is causing to spasm. I mix epsom salts (magnesium sulfate) & Calm (magnesium citrate) in a drink. Glucose / dextrose gives goes directly into your bloodstream for use in fighting the attack. Then eat a meal, if possible.

      I snack all day long on carbs. And, I eat within an hour of going to bed, so that I don’t wake up hungry in the middle of the night. Many times I’ve had to go eat a meal at 2:00 or 3:00 AM, to avoid an attack.

      Greg…

  3. Zibbi says:

    Check out maple syrup on Wikipedia: low in fructose, high in sucrose. I have unconfirmed “probable” porphyria but whatever it is responds to the same principles of management. No more belly pain!!! 🙂 My favourite cocktail is Yogi ginger tea with obscene amounts of maple syrup and a dash of milk. I have it every day with my mandated post-work rest period.

    Q – How are you folks with peanut butter? I eat spoonfuls of it during my work day.

    Greg – Great blog and site! Thank you!

    • Greg says:

      Hi Zibby,

      Pain free? I am so happy for you! That is such a great place to be.

      Thanks for sharing diet details; it is good to get other perspectives, since our reactions & preferences aren’t all the same. I do partake in ginger tea, occasionally…though, I tend to drink peppermint tea. Mayple syrup doesn’t seem to bother me, either. However, I do place a lot of caution on the fructose / glucose ratio. I’ll indulge with syrup over pancakes; but, I can only get away with it if I am feeling well & have glucose around. Generally, though, I’ll put pear jam on pancakes. I’ve never tried syrup for other uses; you are creative.

      Peanut butter is not a porphyria problem for me; however, I avoid it because of diverticulitis. In the immortal words of Rosanne Rosannadanna – “It’s always something”. We feel a bit safer with sunflower seed butter; however, it all depends on how thoroughly the seeds are ground up. I guess the same can be said for peanut butter.

      Greg…

      • Zibbi says:

        Thanks for the feedback. It is so great to be able to share! Thank you, thank you, thank you!!

        Yeah, no contraceptive and no alcohol made a huge difference, with lots of sleep and rest. I get sick fast if I lose sleep. Saying no a lot more to keep stress levels reasonable, possibly to the point of overkill as life has gotten a bit boring. I’m still gunshy. I’m trying to figure out the exertion and sun-exposure patterns now. I’m afraid to exercise much for fear of the neuropathy coming back as it had seemed to get worse after exercise but maybe it was the sun…??

        Its funny, alcohol always has hurt and nauseated me, like the hangover coming with the drink. I can’t get drunk because those extra drinks would come back up first. I can handle one, feel oddly great the following day (reverse hangover) and then get sick on the 3-5th days.

        last Q – Have you noticed problems with “natural cinnamon flavour” (cinnamaldehyde)? I heard myself tell someone I don’t like cinnamon any more as I poured away my chai tea, and I just about fell over. I love cinnamon! It occurred to me that it didn’t taste like cinnamon but rather like those cinnamon heart candies. So I made myself some real cinnamon toast and loved every bite. The biochemistry is over my head, but it seems that isolated cinnamaldehyde may have different effects than the real natural spice.

        Happy new year!

        • Greg says:

          You do ask some tough questions, Zibbi. You’ve got me digging through the panty, again! I do like cinnamon toast & the bread that we get lists “cinnamon”, not “natural cinnamon flavor”…thank God. I will add that, too, to the Diet page & talk about this with my wife (she is the real foodie in our relationship 🙂 ). I could not find cinnamon in with the spices; but, I know we generally have some. Cinnamaldehyde sounds nasty.

  4. Zibbi says:

    PS. I forgot to mention guar gum and similar thickening gums (gum Arabic, carob bean gum, etc). Read your labels. They are in everything from cottage cheese to sport drinks. Xanthan gum is mildest and I will tolerate occasional amounts if all else is under control. If you look up the science, these gums (galactomannans, “natural plastics”) are well known to slow stomach emptying thereby reducing appetite. They lower blood sugar although fleetingly and erratically, drop blood pressure, lower cholesterol, etc. All of this is touted as a benefit to our overweight, overeating culture but that is NOT my problem (or likely yours). They make me nauseated, stupid, COLD and turn my fingers blue 10 minutes after I eat them. Needless to say, I don’t eat them anymore.

    • Greg says:

      Thank you for pointing out the thickening gums, Zibbi. I went back and looked through what I eat & was happy to find that none of them included these gums. I did try sports drinks in the past, for electrolytes; but, they all made me feel bad…maybe it was the gums. I’ll add a note to this, on the Diet page. Sounds like they really affected you, negatively.

  5. Betty says:

    I have been diagnosed with porphyria but along with that I’m diabetic. I can’t seem to find any Doctor that know much about the disease or seems willing to help.
    I don’t know what kind of porphyria I have. I don’t have issues with skin problems or light issues.
    I will have a little blood in my urine first thing in the morning. In a day or two I will have an attack. Attack will last from 10 minutes to 25. Then in the next hour to two hours I will have diarrhea! The worse case you can imagine and there is know way you can get to bathroom in time. This will last for hours!!!
    At other times I will be feeling great out doing errands and having fun. I can go to the bathroom and still feeling fine. Then my stomach will start to feel funny and I will be so sick with diarrhea and stomach cramps. It last for couple of minutes. If I drink a 7Up real cold it seems to help. After this attack I know in an hour I will have diarrhea!!
    I can’t eat fruit hardly at all and chicken. I do ok with fish and red meats.
    I usually find out the hard way about the foods I can’t eat. I can eat it today and then next week it will cause an attack.
    I found your blog very helpful. Got any more info for me?

    • Greg says:

      That sounds like a real challenge. Some quick suggestions, Betty:

      Doctor – focus on hematologists; you can find them at oncology centers. I guess most blood problems involve cancer.

      Diet – it sounds like your reactions are very quick & short lived. You may want to keep a rigorous food log and match it to your attacks. I’ve found very interesting things, that I was missing, that should have been obvious.

      I do hope that helps.

  6. Carolina says:

    hello, my name is Carolina, I´m 35 years old, I live in Argentina, sorry about my english! I think that I´m dealing with porphyria..I found a medical center in Buenos Aires with specialists in porphyria, I have an appointment in march. I´ve been reading your blog and a lot of other sites and it´s like you talk about me and my story. I have had attacks with lots of medicines (diclofenac, metoclopramida, escitalopram, alprazolam, progesterona, melatol, etc.) and there are a lot of foods and chemical products that make me sick. I thought I was dying many times. I had problems with red food, prunes, tomatoes, cabagge, caluiflower, broccoli, brussel sprouts, kale, caffeine, tea, dried fruits, ALCOHOL! chocolate, red meat and FATS. I feel better with rice, pasta, white bread and potatoes. Do you have any information or experience with olive oil?
    And any infusions for breakfast?
    another thing, I feel dizzi and nauseous while traveling by car, it began with the first attack with metoclopramide, have you heard anything like that?
    I thank you greatly for your blog..is very difficult to lead with this alone. It feels better shearing it with other people who suffer the same..
    thank you very much!!
    Caro

    • Greg says:

      Hi Caro,

      I am sorry to hear about your troubles. I am not familiar with any of the medications that you are taking; but, I think all meds increase porphyria problems…even the necessary drugs. I am terrified to take any kind of medicine.

      Olive oil, in small doses works ok for me. We put some on asparagus, with sat, before baking. The problem with any fats, is that they can irritate porphyria. So, it has to be balanced with lots of carbs & liberal use of glucose, if necessary. We are very careful with any kinds of oils/fats.

      Do you have trouble with dark chocolate? I seem to do ok with it. We get a candy called York Peppermint Patty that is peppermint and dark chocolate, that I seem to have no trouble with.

      I am not sure what you are talking about, in regard to infusions for breakfast. Generally, I eat chicken soup for breakfast.

      I am glad the blog is helping you. Once you identify your triggers, it does get a little easier, maybe a lot easier. Good luck with your doctor visit. Be careful, though; many don’t know as much as they want you to believe.

      Greg

    • Charmaine says:

      Hi Carolina
      I have just started reading this very interesting blog and came across your questions. With regards to the medications – the diclophenac and metoclopramide are a definite NO – the others also carry a ‘possibly unsafe’ or ‘avoid’. If you go to the American Porphyria Foundation website you will find links to information about safe and unsafe meds.
      Porphyria Varigate is in my family so I mostly use the South African website to look up safe and unsafe meds. You can also download an app if you have a smart phone and thus have information with you.

      • Zenergi says:

        Hi hi we have Porphyria in our family and my mom was one of the first diagnosed in South Africa and this was a serious process to get the diagnoses. My sister has it and I have tested negative on numerous occasions? so confused, but learned over the years to avoid certain foods regardless (brocolli, cabbage, tomatoes, orange juice, and kale etc etc) Chili is a BIG no no for me so avoid spicy foods as I even think I have a mild allergy to chili, but yet again difficult to medically still establish even after loads of allergy tests. I do know that Pankreoflat helps me as it makes a huge difference for me when I start to feel unwell and when the pain starts. I have to add I don’t have a gallbladder or Thyroid anymore. Please can I ask about name of the App or a link? TIA. We stay in Abu Dhabi (close to Dubai) 🙂 have a fab day further. 🙂 P. S love the blog. Reconfirmed soooooo many things I already know causes me issues and comforting to know there are people to talk to.

        • Greg says:

          Hi Zenergi,

          Sorry about my slow response; it has been difficult, lately.

          I am not sure what app or link you are asking about. And, I don’t know what a TIA is. (in my industry TIA is a transimpedance amp).

          Thank you for your kind words about my blog. I am very happy to hear that it is useful to you.

          Greg….

    • Ara says:

      Hi Caro,
      I hope you are feeling better. I’m originally from Argentina but I’ve been living in Canada for many years. I’ve considered going back to get tested and I wonder if you would mind sharing the name of the medical centre you are referring to? It’s been a year since you posted your message so I’m hoping that you get my reply.
      Thanks!
      Ara

      • Greg says:

        Hi Ara,

        You may want to check out Caro’s blog. http://mividaconporfiria.blogspot.com/

        Have you not been able to find a medical center in Canada that understands porphyria? If you are open to travel, there is a porphyria center in Birmingham, AL (U.S.A.), that is part of University of Alabama, Birmingham (UAB). A family member of mine was tested there. I received my testing from a hematologist that I see.

        Thank you for contributing & sharing. We all do appreciate it, very much.

        Greg…

    • l. c. taylor says:

      Try sea bands. Developed for sea sickness, but I suggested them for someone with severe vertigo and they worked. They are starting to use them at some cancer centers for nausea. Bought mine at Wal-Mart. Also at dive shops or online. They work using acupressure. Ginger may also help nausea. However it can be stimulating so limit the amount and use early in the day. It’s an anodyne so can really help with pain. Avoid if you have a bleeding disorder, are on anticoagulant or expecting to have surgery. Comes in tea or candy forms.

  7. Carolina says:

    thanks for the feedback!!! it feels so good to be able to share..I, m glad I found your blog.
    I had an attack last night, because of lentils. no need to say I won´t take them anymore..
    It made me feel nauseous, weak, I could not speak or think normally. I noticed that I can´t stand loud noises when I feel bad. I think you are right, It will get a little easier if I identify my triggers. I´m trying very hard.
    Have you got any problems with bananas, beets or sweet potatoes? I can´t figure out if they are good or bad for me. I feel bad with many red meals.
    The last time with dark chocolate was terrible, it scares me to try other varieties..
    Thank you for the idea of the chicken soup for breakfast, it is not very common here but worth a try!
    Thanks for your help!!!!!!
    caro

    • Greg says:

      I will be careful with lentils. I don’t think I’ve ever had them.
      Bananas – another person, who commented, warned me about banana, because of the sulfites. They don’t seem to bother me.
      Sweet potatoes – big problem, for me.
      Beets – I don’t think it is a problem, as I’ve had borscht a couple times with no trouble.

      Glucose is very important to fight attacks. Can you get powdered glucose or chewable tablets in Argentina? There is a good source for powdered glucose on the “Sugars” page of this blog.

      Soup – I make my own. I posted a recipe April 28, 2012 that can be used as a starting point. I make small, safe changes to it, all the time. One way to find it it to follow the “Diet” category over on the right side of the page.

  8. Betty says:

    Greg,
    I did go to a hematologist that’s how I found about that I had porphyria. The Doctor
    was not helpful with what foods I should stay away from. He just told me to go to the internet. That was just confusing!!
    Thanks for the help and I just love your blog.
    I seen to be able to eat vegetables with no problem but fruit causes attack.
    Thanks,
    Betty

    • Greg says:

      That is interesting, Betty. I saw a dermatologist & was very surprised he knew about porphyria; but, by that time, I had identified most of my triggers and had developed a lack of trust for doctors, in regard to porphyria…so, I didn’t ask him about anything except meds for the rash. But, he wasn’t comfortable enough with acute porphyria types to choose a med. After your comment, I wonder how much he knew.

      Do you think your problem with fruit is from the high fructose content? Have you tried using glucose with the fruit to balance the fructose / glucose ratio?

  9. Carolina says:

    Hi Greg,
    I´ll try to get the glucose tablets! never heard of them here but i´ll try.
    Please be careful with lentils, it has been very difficult, i´m steel very weak.
    I think that drinking lots of water helps, and sleep well.
    It´s good news that you do not have problems with bananas and beets.
    Do you have problems with watermelon and melon? I also have problems with pears.
    I´ll try chicken soup this week 🙂
    take care!
    caro

    • Greg says:

      Hey Caro,

      The problem with fruit may be because of all the fructose. When I have too much watermelon, I have problems…unless, I use glucose to offset it. So, in response to your question about melons and pears, I don’t have problems, generally; when I do, I can compensate by using glucose.

      I don’t think I have problems with beets; but, my wife disagrees with me. We have a general rule that anything red is bad. But, I have red peppers all the time; but, they may be just an exception.

      Kind of a confusing answer; sorry.

      Greg…

  10. Betty says:

    Greg,
    No, I have not tried glucose. I do have tablets in my purse that I keep on hand for my
    diabetes but have never used them. Is this the same thing you are talking about? I keep my diabetes under control with a pill. I watch what I eat so it stays A1C around a 5.
    I found out I can’t eat White chocolate at all (Its my favorite)! Can eat dark a little I can have a snickers but can’t have a Hersey bar.
    On fruit I can’t eat a whole apple or I will have an attack. If I have fruit I know I cant eat any nuts, oats, or anything bulkier. I have no problems with bananas, beets, celery,
    cucumbers but lettuce can trigger an attack.

    I agree with Caro about your Blog its nice to know someone is out there to help you struggle through foods.
    Thanks,
    Betty

    • Greg says:

      Hi Betty,

      The way I use glucose may be dangerous to someone with diabetes. I have no problem consuming a lot of glucose to fuel my bodies need for energy. And, I use glucose to offset any bad feelings I get from eating fruit; which I expect to be a problem with too much fructose.

      Cucumbers don’t bother you? You are so lucky. I grow cucumbers for my wife; but, I can’t eat them because they are one of my triggers.

      And,thank you for the kind words. I am glad that this blog is helping you. It really does mean a lot, to me. It is easy to feel someone isolated; even my family and friends don’t really understand. They try & are very helpful; but, there is no way to understand. And, I don’t like to complain; so, even though the discomfort is always there, they won’t know.

      Hang in there, Betty!

      Greg…

  11. Caro says:

    Betty,
    my glucose package clearly says that should not be consumed by diabetics. Be careful with that!

    Greg, I also think it is very difficult for our family to understand what happens to us. No one can imagine, so it’s a wonderful experience to share with you all. Your blog and all the energy you put into it is a gift for many people. You are doing a great job.

    I remembered that I can not eat oatmeal like Betty. Cucumbers are poison for me 🙂
    8 hours sleep radically changed my day if I sleep less I feel bad.
    I wanted to tell you that the artichoke tea help me digest food and sometimes even helps me with nausea.
    Caro..

  12. Zibbi says:

    Bad week. Ate a large dose of lentils last week. Do most of you all react to lentils? Maybe I won’t do that again…
    Zibbi

    • Greg says:

      Well, Zibbi, I’ve never met a lentil. But, it is a bean & generally I don’t do well with beans…so, I probably won’t experiment with them. Sorry to hear that you had a bad time of it. But, thank you for sharing; it may save someone from trouble.

    • Caro says:

      Hi Zibbi! I had a terrible reaction to lentils…It made me feel very, very sick. there are some foods that make me feel very bad when consumed in large quantities. This is the case of lentils. A large amount induces an attack.
      I won´t eat lentils ever in my life again…
      take care..
      caro

  13. Caro says:

    Hi Greg!
    I would like to add what happened to me with propolis.. I hope you understand my poor english 🙂 Propolis is used as a dietary supplement, it is not on medication lists because it is only a supplement. It serves to attack colds , increase energy levels and improve overall condition.
    When I tried it I started to feel very dizzy , tired and nauseous . By taking the second dose a minor attack began. It made ​​me feel terribly sick.
    I decided never to take it anymore .. On a trip to Brazil a friend gave me candys with propolis but it was written in another language so I didn´t understand which were their contents … I had an horrible episode, I could not open my eyes or speak, and stayed in bed for a whole day .
    I think it’s very important to share what has happened to us with dietary supplements because sometimes they work as medicines but are not listed in safe or unsafe drugs lists . Please be careful with propolis..
    Caro ..

    • Greg says:

      Thank you for sharing that, Caro. I’ve added a “Supplements” page and included a comment on propolis.

    • Zibbi says:

      Ever curious, I had to look up Propolis because I had never heard of it. Apparently, it is a resin-type substance bees produce to seal up the hive:
      “Typical northern temperate propolis has approximately 50 constituents, primarily resins and vegetable balsams (50%), waxes (30%), essential oils (10%), and pollen (5%). Propolis also contains persistent lipophilic acaricides, a natural pesticide that deters mite infestations.” (Wiki)
      This is all pretty complex aromatic hydrocarbon stuff, guaranteed to excite a liver, I would think. It says it also may contain the gums I referred to earlier. Definitely sounds like a bad idea for porphyric folk to me.
      Thanks for the heads up. Sorry you went through that.
      Very educational!
      Zibbi

  14. Ann says:

    The list of things that contain sulfites much more extensive than you mentioned here. I have been avoiding sulfites in food for years and have just put together the porphyria piece of the puzzle in the last month. Google sulfite allergy and get a more complete list. Thank you for the information here. It has helped me a great deal.

  15. rosa says:

    hi
    i dont have any problems with tomatoes but have alot of problems with chocolate any one everthing that is peppermint, black pepper corns is very dangerous for me. so any dairy product im carefull with, i love fruits but if i eat mango it makes me sick. one day i can eat cheese and garlic and then sometimes i cant. lentils also dont do it for me but i love greenbeans is it dangerous to eat it to much. i have low cholestrol so the dr said i must eat more fat but i cant dont like fatty foods or cream. otherwise im ok just need to get a diet to help me loose some weight was always skinny but gained alot of weight.

    • Greg says:

      Hi Rosa,

      Thank you for sharing. It is really difficult to figure out which foods are safe and which ones are not. There is no safe food list that applies to everyone with porphyria; and there is no unsafe list, either. But, I have found that it helps to hear what other porphyria folks experience, as an aid in the search for a diet that works. So, your comments may help someone solve a problem.

  16. bean says:

    I am trying to determine my triggers, but I still get cant always avoid them. Basically, my question is if anyone else has issues with severe vomiting. I vomit frequently and I stay hydrated when I can keep fluids down, but when I even vomit from sucking on a wet rag (attempt to wet mouth because of dryness and also it gets tiny amounts of water in me, a sort of trick I use) I then have to worry about replacing electrolytes. I get consumed with chills, to a terrifying degree due to the fact that I cannot sweat. When I went to the ER recently, they gave me IV fluids and I poured sweat right away. and it felt so good! I know that sports drinks are dangerous but simply water is not enough. How do we keep our fluids correct when you vomit almost daily? I am writing this so fast because I am at a public computer so sorry for grammatical errors ! Thanks yall!

    • Ara says:

      I’m so sorry you are/were going through such a challenging health situation. I wonder what is triggering the attacks. Foods, medications, stress, all of them? Re-replenishing your electrolytes the only thing I can think about is homemade chicken bone stock plus chicken broth. Bones have tons of minerals and if you try remember to add sea salt to taste, sea salt or himalayan salt have lots of minerals as well. Chicken broth helps me with many digestive symptoms.
      Good luck!

  17. sela says:

    is anyone up for starting a database for food, herbs, and supplements? basically anything that goes in your stomach? i see some people eat herbs of all kinds but i am terrified of them. i am sure there are many we can handle but as i am so nervous about it, it would be nice to see people’s experiences gathered in one place. i am sick a lot so i try not to take chances. i would though if i saw that 95% of us tolerated say… milk thistle, or only 60% can eat bananas. i am way too foggy to figure out how to do it but it NEEDS TO BE DONE!

  18. Ara says:

    I want to share a book that helped me a lot with my diet. It is called “Porphyria: de ultimate cause of common, chronic and environmental illness” they have it on amazon but the author sells it in his website, and it’s cheaper.

  19. Ara says:

    I just wanted to clarify that the Porphyria book is not sold on Amazon, there are some mostly great reviews there though. I guess I can’t post here the website’s address but you can google the name of the book and author, and you’ll hopefully get to the website. Cheers!

  20. Gwendolyn Jones says:

    Hi Ara:

    I also read that book: “Porphyria: The Ultimate Cause of Common, Chronic and Environmental Illnesses, with Breakthroughs in Diet, Supplements, and Energy Balancing” by the author Prof. Steven Rochlitz.

    Being a sufferer of porphyria, I am so privileged to have discovered this book. It changed my life forever. This amazing book lifted a veil for me, as far as getting to the ultimate causes (porphyria and other factors in the book) of my lifelong health problems, and the optimum things to do that led to my finally getting well after doing the book’s recommendations.

    I highly recommend this book as its unique, practical and useful information is so far ahead of the field. To put it simply – when a physicist writes a health book, it’s beyond anything else.

    The book is available on the website: wellatlast dot com, and if you would like to know what other readers had to say, take a look at that site’s testimonials page. There are many great comments from physicians and us laypeople. That’s what convinced me two years ago.

    It’s turned out to be the best thing I ever did for my health. No doctors’ visits these last two years! I can only hope that Greg gets the book too.

    Gwendolyn

    • sela says:

      i have heard of the rochlitz book and heard comments like those above, but i have never heard anyone say WHY it is so good , what information they got that is not available elsewhere, for example. it’s a big mystery book. exactly what did you learn that you can’t read on websites, napos, yahoo groups, etc?

  21. Patricia says:

    i have porphirya , I like to know more about a diet

    • Greg says:

      Hi Patricia,

      I can only offer what works for me; there are suggestions by other commenters that have helped me greatly (these are included in my diet postings).

      On this site, you can find information about the diet guidelines that I follow by clicking on the word “diet” on the menu bar (under the picture) or by clicking the word “Diet” under categories on the far right side of the page. Please realize that all of this is from my viewpoint & how it affects me.

      I strongly suggest keeping a food log so that you can determine what foods are triggers and what foods are irritants…for you. For an example, I’ve found that cucumbers will give me an attack, almost instantly; but, there are people with porphyria that can eat cucumbers. And, I’ve identified irritants that in combination with other irritants can lead to an attack.

      Stay strong & focused; you can control this.

      Greg…

  22. susan letteer says:

    greg, or someone!
    please start a yahoo group so we can communicate more! there is so much to talk about and waiting a couple of months and maybe getting an answer isn’t good enough!
    sela

  23. Hi Greg

    Thank you for your porphyria blog.

    This is Steve Rochlitz, PhD, author of three books on Porphyria, including the first: . PORPHYRIA: The Ultimate Cause of Common, Chronic, & Environmental Illnesses, with Breakthroughs in Diet, Supplements, and Energy Balancing

    Please allow this post to go up as I am misquoted on your “in the news” page.

    You stated that I claimed that 20% of people have a porphyria. The Downey-Rochlitz hypothesis is that 20% of our species may have a genetic predisposition for acquiring a chronic porphyria after many types of toxic exposure.

    These can include mercury and other heavy metals, mold, formaldehyde, pesticides, drugs, even high doses of supplements, and other substances.

    I am sure you see the difference, so kindly correct. Also that page pointed to a site that has not sold my books for years. Please point people to my http://www.wellatlast.com site or this page: http://www.wellatlast.com/whatsnew.html

    Or wellatlast dot com

    Finally there is a link on the testimonials page at my wellatlast dot com site to listen to an hour long great, free, recent interview of me by a British nutritionist who said she was ‘in awe” of all the new information I gave on porphyria and its sequelae, as it relates to causing chronic or env. illnesses.

    Note it also includes my recent finding that 3 British MDs stated in in 1957 that “porphyria is not a rare disease in Britain” Again this was back in 1957.

    I hope you enjoy that interview, Greg. Be well.

    Steve

  24. Susan says:

    Aloha Greg –
    My name is Susan and I’m 60 years old. I have been sick on and off of most of my adult life with various illnesses that just seem to come and go. In August 2014 and again four times in January 2015, I landed in the ER with extreme abdominal pain along with a variety of other symptoms. Including a blistered rash. The doctors in the ER could not come up with a diagnosis but encouraged me to see my gastroenterology who ran me through lots of test – all negative – and then he tested for heavy metal poisoning and porphyria. By the time of these tests, it was nearly four weeks after the last attack that landed me in the hospital. Sure enough, the test came back with hereditary coproporphyria III and varigate porphyria but in lower levels than enough to be “diagnosed” with the disease. He referred me to a hematologist who reviewed my medical history (I keep great records) and tested me again (this was about three months after the ER attack). The hematologist “very highly suspects” porphyria and told me to proceed with all future medical contacts as if porphyria was my diagnosis until proved otherwise. Now I’m trying to avoid major attacks and trying to figure out how I can live my life without pain.

    I found your blog and have read through most of it. I have cut out caffeine and do not drink alcoholic beverages. A couple of my medications were on the “don’t take” lists that I have found on various sites. I have had all of those changed to ones on “approved” lists. Since taking these steps, I have not had a major attack but still experience minor, short term, attacks. I am wondering if I would become a vegetarian it this would help? I have already cut back the amount my meat consumption. I have not found any information on porphyria and vegetarianism. It makes sense to me that limiting proteins could help since protein is what is not metabolized correctly by my body. Do you have any information on this? Aloha – Susan

    • Greg says:

      Aloha, Susan

      I am sorry to hear that you are having to deal with porphyria. The good thing is that you know what you have and it looks like you are doing a good job of addressing the problem. It really does become a “lifestyle” dealing with porphyria. I don’t know if becoming a vegetarian is the answer…a family member tried it, with less than positive results. They researched the topic, got plugged into the community, and stuck with it for a couple years; this person is back to eating small amounts of meats with each meal. Granted, the sample size of that study is one; I don’t know if anyone has done a reputable research into the topic. It is my understanding that the darker the meat, the worse it is for us; I can’t remember where I found this. I stick mainly with chicken and white fish; sometimes, I cheat and have steak or salmon. And, I stay away from pork and bottom dwelling (scavenger) fish. Oh, yeah, and I stay away from fish that accumulate mercury. And, I try to stick with organic meats. But, that is just me; I don’t know if there is a “one size fits all” dietary response to porphyria.

      Maybe someone will post a positive comment (with suggestions) about a vegetarian response.

      Mahalo,

      Greg…

  25. Carson says:

    I’m newly diagnosed with AIP after 42yrs of attacks. During an extremely long attack period I made up a breakfast that I still eat years later. Use grape nuts as the base and add a very small amount of raisin. I was add coconut, pecans, and walnuts. I had switched to almond milk to pour over the mixture but after reading this blog will go back to the nonfat milk. This is what I eat for breakfast at work everyday. I seem to do much worse on holidays and vacations. Now that I know the problem. I guess this mix will start being used more often now

    • Greg says:

      I am glad that you have found food that works, Carson. Have you considered keeping a food log? You might be able to isolate triggers and find some more helpful foods?
      You are blessed to have a diagnosis, finally; not knowing can be deadly.

  26. Suzie says:

    Thank you for this blog, it has helped me. The comments from others have been helpful too. I have fibromyalgia and about a year ago my doc suggested testing for porphria, it came back positive though he said I should be tested further. So many people in his practice with fibro tested positive so I believe they are related. I was on a high protein low carb diet but now mostly carbs. No flour, beans, nuts, coffee, chocolate, garlic, cru vegis, dairy or achohol. Even with all of that my skin burns sometimes and my stomach aches. I take gabapentin every four hours, 1200 mgs, as much as you can take. That helps but doesn’t stop it. I just bought the book everyone is talking about so I hope that helps. Between the awesome pain of the fibro and the skin burning of porphryia I feel like I’m running out of gas but it helps to know what its from.
    Thanks again.

    • Greg says:

      Hi Suzy. I am glad that this blog is helpful to you. Writing it has helped me clarify my thoughts & beliefs; and, many commenters have added substantial insights. What you say about the number of people with fibromyalgia who also have porphyria is fascinating. I wonder if they might have the same root cause, in some cases, or if fibromyalgia can precipitate porphyria. It is known that exposure to some toxins can lead to porphyria, at least in the case of PCT (which can also be hereditary).

      When you take steps to lessen the effects of porphyria, does it have any effect on your fibro?

  27. Jennifer Wood says:

    Hi,
    My name is Jennifer Wood. I’m 46 years old and have had IAP symptoms since I was a toddler. When I would be sick the smell was overwhelming. All of my underwear from awhile ago are stained black, and still have an awful odor. I was hospitalized so many times from 4 months to 16 years, from 9 to 16 psychiatric.
    I developed P.T.S.D from a hospitalization at 18 months. Because of this I’m always stressed out and when I have an attack I’m bedridden.
    Please help me and my mother, she’s actually had to carry me into a hospital when I had an attack.

  28. Gina says:

    Hello, Everyone.. 2001 I was diagnosed of Porphyria (HCP) Hereditary Corproporphyia. What is the hardest thing hat if I go to my doctor. He doesn’t understand. Most of them just prescribe me retidine, antibiotic. Despite I am telling them that I have (HCP). Recently, I have been very sick lately. Pain stomach, bloating, back ache, muscle ache. Dizzy. Instead, doctor ordered more stool tests. Result Negative. Upon reading the blogs, forum in the internet. I found this site.
    I bought dextrose powder but my muscle spasm still comes and go. Recently I am taking celtic salt. This help a little. Been drinking power rade. Tried to use olive oil, boy made me really sick. Sometimes, I am afraid what to eat. I remember what I was eating before chickpeas. Now, been sick for about almost two months. Well, got worst when my doctor prescribed me cipro.. Hope can recover soon. Been a journey.

    • Greg says:

      Hi Gina,

      I am sorry to hear about your suffering.

      Antibiotics are very hard on people with porphyria. May I suggest that you keep track of the antibiotics that you use & note the affects that they have on you. A neurologist that I saw for carpal tunnel told me that he is familiar with porphyria because of the nerve damage antibiotics cause to some of us. Personally, I cannot take penicillin because of seizures.

      Figuring out a safe diet is key to dealing with porphyria. Some foods are absolute triggers and others are irritants. Also, I’ve been told that if you eat the same too much, a sensitivity can develop. Keeping a food log of everything you eat is critical. Triggers are easy to identify; for instance, if I eat cucumbers, I have an instant attack. Irritants are harder to determine. We erred on the safe side by sidelining foods that might have been safe; then, after setting up a stable diet, we introduced suspect foods to see what happened. It is kind of like figuring out which knife hurts worse; but, there is really no other way to determine what is safe and what is not.

      I’ve found that powerade, gatorade, etc make me feel bad; not sure what is in it. Olive oil doesn’t bother me, except in excess. That brings up a point about fats & proteins – you need them; but, it is my belief that people with porphyria should keep both at a minimum. I know that if I get too much fat or protein, I have an attack.

      When I am feeling porphyric – glucose is essential, sometimes I add magnesium, and, if necessary I take pain killers. For the magnesium, I mix magnesium citrate (Calm) and magnesium sulfate (epsom salts); I find that this tastes better than either of them alone. If I only had one on hand, I would prefer epsom salts, for better results.

      I do hope this site helps. Thank you for making a comment; please feel free to share what you learn.

      Greg…

  29. Kim says:

    This is very interesting. I am convinced that a form of porphyria, which is not acknowledged by the mainstream medical and is called pyrrole disorder or pyroluria by non mainstream, causes schizophrenia in one of my sons and depression in the other. In this form, there is some genetic abnormality which causes zinc and/or B6 to attach to one or more of the intermediates in the pathway, severely draining zinc and/or B6, which leads to various problems not encountered in the traditionally recognized porphyrias.

    They both became ill after having had mononucleosis, which I believe triggered their illness by increasing oxidative stress and upregulating the heme pathway. Once their B6 levels became low a vicious cycle started because low B6 and/or zinc increases oxidative stress.

    I found this site because no amounts of B6 and zinc supplementation can put a stop to the vicious cycle because supplementing one increases the drain of the other and one or the other is always low or with the right balance they are both somewhat, but not so extremely low, and I have come to the conclusion that some way of slowing ALAS1 might help them to be able to resolve their problems, along with B6 and zinc supplements.

    Something that may or may not be helpful to people with more traditional porphyrias that I have discovered is that glycine limitation helps. Glycine is used in the first step by ALAS. The body makes its own glycine from glucose, which is changed through several steps to serine, and then into glycine by SHMT, a folate enzyme. B6 deficiency increases the concentration of glycine in the mitochondria (where the first heme step takes place) because glycine decarboxylase requires B6, which is another reason why my sons have a vicious cycle. (You should all be careful to have the right amount of B6, whatever that is for you.) I have found that if my sons have high doses of folate the drain on B6 and/or zinc is much greater. It might be that other porphyrias would benefit by avoiding all folate supplements and also perhaps avoiding beans and lentils, which are excessively high in folate. You don’t want your folate levels to be too low, so don’t avoid all high folate foods. I actually mix my own folate free B vitamins to keep from taking extra folate. But my sons also have another reason they need lower folate levels, too, that wouldn’t apply to other porphyrias.

    I imagine that there is a certain amount of biological individuality at work here, so perhaps some would benefit and others would need more folate. But this is something to consider for people who don’t get adequate control by other methods. Don’t expect instant results from a change in folate intake – it probably would take at least several days to notice a difference.

    One problem for us is that the symptoms of my sons are changed slowly by changes in diet, etc., so we don’t get immediate feedback such as you people seem to have to help us. I am going to have my sons snack on carrots and maybe even consider glucose pills.

    Thanks for all the helpful information!

    • Greg says:

      That is a lot to think about, Kim. With that in mind, I will research glycine and possibly experiment with B6. That may be the problem that people with porphyria have so much trouble with proteins.

      Unfortunately, feedback on dietary changes are not always immediate nor are they always obvious. There are some things that we have categorized as irritants (sometimes we mis-identify these) because there is not an instant response; but, by circumstances, are led to believe they are an issue. For example, cucumbers cause and instant attack (for me…maybe not others) & carrots are sort of ok in moderation.

      I’ve read a book by Steven Rochlitz which posits that porphyria is not as rare as reported and, in fact, is related to other diseases. This is in agreement with what you are saying. I tend to agree with the two of you.

      I am truly sorry to hear about your difficulties and really appreciate the time that you took to post such a well thought out comment. Our prayers are with you.

  30. Ashley says:

    Thank you so much for putting this list together and sharing it! I was just wondering how you knew bananas were bad/ high in sulfites… is there a website where it says that?

    Thank you,
    Ashley

    • Greg says:

      I wish I could remember where I saw that bananas were high in sulfites. When Ann posted a comment about sulfites, researching sulfites became a major project for me. When it was done, I moved on to my next research project. As you know, dealing with porphyria is very complicated. Anyway, a couple things on the list don’t bother me a lot – bananas being one of them. I will have a banana occasionally, with no perceived problems. And, I do use tomato sauce on my pizza’s.

  31. stefani says:

    I’m newly diagnosed with AIP. I have a nutrition back ground but would like to know if there is a specific diet plan available I would love a guide to follow and be able to stay healthy while lowering my weight.

    • Greg says:

      Stefani,

      You are so far ahead of most sufferers, since you have a nutrition background. The problem with any nutrition guide is that we are all affected differently…significantly so. For instance, I have an immediate attack from eating cucumbers; but, from what I can tell, most people with porphyria are ok with cucumbers. There are some things that may be bad for most people in the porphyria club, such as red grapes, broccoli, alcohol. Anyway, the best bet is to start a food log and try to correlate problems with triggers. There is a complication in that some things are irritants and others are out right triggers. For instance, I can have carrots; but, too many carrots will cause me problems. Also, there are irritants / triggers in the environment; this can mess up your analysis of your food log.

      One huge caution – do not go hungry in an attempt to loose weight; this will cause lots of porphyria side affects. For weight loss, I recommend exercise. The flip side to exercise is that you will need to consume more calories.

      I hope this helps.

      Prayers,

      Greg…

  32. Colleen says:

    Hi, it seems as though it has been a while since you’ve been on this page, but I thought I’d ask you anyway. You say almond milk is a trigger, is that because of the additives? Guar gum, etc, and not the almonds or do you find almonds to be an issue? Thank you.

    • Greg says:

      Hi Colleen,

      I’ve set this site up as a resource & don’t really use it much as a blog. I do periodically check for comments, though.

      Almond milk? Well, I only know that it triggers attacks in me; and, I really don’t know why. I used to spend a lot of time trying to figure out that kind of stuff; but, the efforts really did not bear fruit. So, I just put it on my bad list & avoid it. I am not sure about almonds, in general, because I avoid all nuts because of diverticulitis problems. I can, however, have peanut butter and sunflower seed butter.

      It may or may not be a trigger for you? I get the sense that my triggers may not be triggers for others with porphyria. So, you might be able to have almond butter…but, please be careful. Keep your glucose and painkillers handy for the experiment.

      Does that help?

      Thanks,

      Greg…

  33. Matthew says:

    I have Aip, also a strength coach with a nutrition background, but I’ve had trouble with diet. I haven’t figured out what’s causing the pain because no matter what I’ve tried I cannot stop it. Constant pain. My biggest trigger seems to be hunger itself; my stomach will go from a little growl to full-on vomiting and seizures within minutes. Carbs are essential, obviously. Still trying to figure out the rest🙏🏻

    • Greg says:

      Hi Matthew,

      Can I suggest a food log? Absolute triggers are pretty strait forward; irritants are harder to identify. For instance, I can get away with eating carrots; but, too many and I will have an attack. One of the obstacles that your strength coach will face is letting his experience lead the two of you into expecting your food needs to be similar to non-porphyria sufferers.

      I have to eat every couple hours. The amount of protein or fat in any meal is very low; but, I eat enough meals to get what I need. I do use quite a bit of glucose as a supplement; but, it does not fill the stomach. I’ve read (maybe in Dr. Rochlitz’s book) that hunger signal actually triggers a call for heme production (which, as we are all painfully aware, will bring on porphyria problems).

      Keep praying and working on that diet!

      Greg…

  34. Matthew says:

    Oh sorry, I’M a strength coach!

    Yes I’ve started taking vitamins and specific minerals, eliminated meat completely, and am keeping a food log.

    I think I just learned asparagus is bad, lol! Still on 180mg of sr morphine per day. Very slow progress. I just came of cymbalta & long term Ativan, which were absolutely devasting to my nervous system. The goal is to be off everything, though. The opiates take the sharpness and intensity away for certain. They’ve been a lifesaver. However, I cannot say I’ve been anything but worse since I put myself in the medical industries hands. They sure love an incurable disease!
    I gave them 3 years of my life, and it almost killed me. Going naturopathic now, with a heavy interest in minerals and rare earth supplementation.

    Hope you’re doing well 😊

    Matthew

    • Greg says:

      Thank you for the update, Matthew! Sounds like you are on the right path. I am terrified of medical doctors; some do love incurable diseases (like the medical drama House).

      I’ve been seeing an O.M.D. / L.Ac for about a year. Somethings help noticeably and others I am not sure of. I’ve used the muscle testing results to fine tune the results of my food logs.

  35. Barbara says:

    Hi there…Greg, when you mention certain foods that are trigger foods, what kinds of reactions do you have? Stomach pain? Nausea?

    What kinds of symptoms does the glucose tab help? Nausea or stomach pain, etc.?

    I have just asked my Dr. if she will test me for Porphyria – I have been sick for so long, and react to everything, well, certain foods, supplements and meds are the worst, I have varying reactions from facial swelling and itchy eyelids, to extreme fatigue and muscle aches, to severe heartburn and acid reflux…I had been on a very low carb diet and the longer I was on it, the sicker I got. I had tried taking enzymes and those make me vomit horribly…I have always had reactions to prescriptions and antibiotics, etc. – a lot of my symptoms match up to Porphyria.

    Recently I had a diverticulitis attack and had to go to the ER, but my heart rate was elevated and I had no fever…they did an MRI and said the diverticulitis looked ‘mild’ – but my pain was severe. How does the pain differ between diverticulitis and Porphyria? I am wondering if that is what I actually had. They gave me an IV dose of an antibiotic and a prescription for another, which I had explained would make me sick. I did try taking 1/2 pill, but that also made me vomit. The pain was very intense.

    I had suspected for years that I have a salicylate sensitivity (related to aspirin and is an additive in many foods, soaps, shampoos, toothpaste), etc., as a lot of my triggers do contain salicylates (which is also something people with fibromayalgia should avoid!!) – in foods too, mainly fruits and veg. and anything herbal, especially spices are very high in salicylate. (also in essential oils, which are highly concentrated plant extracts, a MAJOR no no for me, found that out the hard way). I also just tried CoQ10 and had a very bad reaction to that as well, nausea, heartburn and burning and itching on my face and eyelids. So basically I take nothing…I will take one regular Tylenol occasionally if I have unbearable pain, but that is it.

    I will be anxious to hear from my Dr. and hope she will allow me to be tested for this, as I do have many of the symptoms and other things have been ruled out, I just feel SO sick all the time, I want to know WHY!

    Are there other blood test results that could point to a Porphyria diagnosis? Several months ago I had very comprehensive blood work done and some of my levels are good, but some are VERY off, I have high magnesium, low D, low in all of the B’s except for B6, my enzymes are low, zinc and manganese are low, just very hit or miss with the results. My Dr. wanted me to take supplements for the things I am low in, but again, since I can’t tolerate supplements, I am left feeling sick and wondering what is wrong. Tired of running in circles trying to figure out what is wrong!

    • Greg says:

      Hi Barbara,

      When I have encounter a trigger, several things happen.
      Pain – severe pain that normally starts in the area of my liver / start of colon / gall bladder (at least where it was). However, the pain can be anywhere on my torso.
      Yuk – you know that toxic feeling when you have the flu or a hang over?
      Eyes – droopy, red, glazed
      Thinking – hard to think
      Emotion – irritability
      Energy – goes away. Even after the attack, I am worn out.

      Glucose – for me, it improves everything. A trigger causes an avalanche productions of porphyrins that my liver cannot deal with; it is my understanding that the liver consumes all the bodies energy (glucose) trying to clean up the mess. Think about it, the doctors’ response to an attack is painkillers and IV glucose. So, I figured, the best thing to do is start with the glucose the second I feel the toxins building. Than process works phenomenally for me; I cannot say it will work for everyone, though. I don’t have to take painkillers too much anymore; I used to use Donnatal a couple times a day, now it is every month or two.

      Supplements and medications generally cause problems. I have to use a lot of glucose to avoid an attack; and, sometimes, it is not successful.

      Difference between diverticulitis and porphyria…with diverticulitis, the pain is dull constant pain like sitting on a billiard ball; with porphyria, the pain is like having a serious cut and the raw sides of the cut are rubbing against each other (based on experience). The porphyria pain general starts near the start of my colon and radiates throughout my chest in waves. The pain can be enough to cause me to pass out. With diverticulitis is can feel like having a fever in my gut.

      I was tested positive by a 24 hour urine test. I think they can prove it with blood and DNA tests. However, it is my understanding that any test can give false negatives. My blood is analyzed every year and there are always several things that are flagged as being outside of acceptable levels; but, my hematologist keeps an eye on that.

      I’ve read many times that a home test for porphyria is to put a glass jar with your urine in the sun and if it turns colors that it is indicative of porphyria. Porphyrins are light sensitive. People with cutaneous porphyrias apparently accumulate Porphyrins in their skin.

      Have you kept a food log? An activity/exposure log is handy, too.

      Hang in there. Keep searching.

      Thanks,

      Greg…

  36. Geraldine Murch says:

    Hi,

    I have suffered with acute intermittent porphyria for 35+ years and I have found that we all tend to have different triggers what suits one does not suit another glucose does not work for me but I was informed by a doctor at one time to have chocolate mars bars at hand because they have what our body needs if I feel attack coming on I always keep a few bars in the fridge handy but thankfully the older one gets the less the attacks are.

    • Greg says:

      Hi Geraldine,

      You are absolutely right! Each person has different triggers and solutions. So, it is up to each of us to do what it takes to find those triggers and solutions.

      I am sorry to hear that you’ve had to suffer with AIP. But, I am glad to hear that you have solutions and a doctor that works with you; both of those things can be in short supply.

      Greg…

      • Nancy Kennedy says:

        Hi Greg: I just finished reading comments from 2013 and it was certainly an eye-opener! Thank you for this great site! My 52 year daughter has suffered with AIP for 20 years and has been on painkillers and PanHematin prescribed by her Hematologist. We have also suspected that myself and other family members have the disease. Two years ago I was diagnosed with Metastatic colon cancer and treated with surgery and chemo. My cancer, thankfully, is in remission but porphyria has reared its ugly head in the form of a two month attack that started with stomach distress and morphed into what I was convinced was left kidney stones for the last 3 weeks. However, my doctor (the same hematologist who treats my daughter), is convinced I have porphyria and has sent in my blood and urine. After reading the multiple stories above I am sure he is right. I can identify with just about everyone. In trying to bring my cancer into remission I cut out ALL sugar and have eaten just about everything on the trigger diet! As a result I now live with agonizing pain around my middle and have lost even more weight and am miserable. I am on Oxycodone q 8 hrs for pain, which affords relief from the worst pain, plus a plant capsule called Chanca Piedra, which has also strangely given some relief. I took it because I thought I had kidney stones. Anyway; the bottom line is that I am almost 100% sure I have AIP and am going to start at square-1 by reading the above book and doing my best to coordinate it with my cancer diet. I am also on monthly infusions of Avastin the rest of my life and I take 3 caps of Red Rishi Mushroom per day. Thank you for this wonderful web site. My prayers are with us all.

  37. anna maria smith says:

    my name is anna and I reside in south Africa, I have been diagnosed with variegate porphyria 43years ago, I have had 5 attacks in all theses years,can you please tell me what do you experience during your attatcks, mine mainly consists of severe vertigo and nausea I have to be treated in hospital by sitting upright against pillows with a drip in my arm, I eat whatever I want except fatty foods, but found grapes to be bad for me, my problem seems to be more nerves, I get panic attacks easily and very upset
    and cannot stand loud noises,I feel lousy nearly every morning when I wake up but
    after and hour or so it subsided and I am fine, I once had memory loss for 1 hour.

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