First time you have heard of this? Me too. One of our clients rolled in and explained she can have only very limited sun exposure without suffering some serious blisters…that apparently can extend all the way to the BONE! You can geek out on the topic by checking out thus Wiki entry.
I found that entry by dropping the term into google (shocker) and just perusing the offerings. Then I did what I always do when I’m researching a new health condition I add a few other selection criteria. The first I added was “celiac”. You know, that wacky gluten intolerance stuff. The results are interesting. Then I checked with “hyperinsulinism” and again, the results are very interesting.
Now correlation is NOT causation, I do not want to head down that road but I hope it’s clear to folks that when we see gluten intolerance associated with virtually every autoimmune disease known…there is something significant going on here. Similarly, when excess insulin (too fucking many carbs) is tied to a plethora of health conditions, you’ve got to perk your ears up and think about this.
I often feel like the crazy guy in the shed (our gym) who is on par with Roswell/Area 51 fans. Aliens are invading…and they are using wheat and sugar to destroy our health so they will easily conquer our fat, sick selves. How can staple foods, the base of the food pyramid possibly be a problem? It’s absurd! It’s also true. Not the Aliens…I don’t think.
I don’t know that it is a loosing battle but it is an up-hill affair. If you read this blog I’m likely preaching to the choir, but if folks have not at least TRIED a grain free, paleo type diet they have no real experience in how beneficial it can be. Try it for a month, you’ll be amazed at what it can do, how good you will feel.
Scott Kustes - Modern Forager says
Wow man…you must be getting bored up there at Norcal, what with 4 posts in as many days. This one is great…seems to be so many ways that wheat affects the body adversely. I’m with you; if people gave it a month of swapping their grains for vegetables, I guarantee they’ll end up leaner and healthier than they started.
But alas, people are addicted to bread.
I hear you on the “crazy guy” analogy. I often keep my mouth shut at the firehall, because talking about grains and excess carbs being the root of health issues would more than likely get me strung up in the hose tower. It’s unfortunate that people are so resistant to the facts.
Great blog, always looking forward to your posts. Highly educational, keep ’em coming.
Thanks for the props mike! Maybe when the mother ship does arrive they will serve a gluten free menu?
Steve Caddy says
It’s incredible how resistant people are to this. My wife is a cardiac nurse and sees the point end of this situation every day, she understands the (short term) effects of insulin and glucagon and she still refers to my eating habits as ‘your crazy weirdo diet’.
More surprising to me though has been my own resistance to abandoning the diet. Before going paleo I said I’d never live without cereal for breakfast (ok, I still eat oats), milk, rice or pasta. Before going Zone I told anyone who’d listen that you had to be the most extreme Type A personality to weigh and measure your food. Life’s too short right?
And now that money’s a little tighter (new baby) I’m shocked at how quickly I volunteer my meagre personal funds towards propping up the quality of our grocery load at the expense of bike parts, gym equipment … you name it.
Once you stop getting sick, start training harder, recovering faster and performing better on less it’s very, very hard to go back. You’ll kick and scream. I’ve been considering trialling paleo/IF in place of paleo/Zone but I can’t think of what I’d eat and when now I’m in Zone autopilot. Probably just a shit-load more nuts and fruit and a little less protein.
I have a great hospital story involving nurses. This young kid…I think about 13 years old was being moved from ICU to the main floor. The poor guy suffered a head injury as a toddler and was developmentally very challenged…as he was wheeled past the nurses station he started calling out “Candy! Candy!” with his hands reaching towards the station. The nurses were stumped by the whole scene…”Candy? What does he mean?” I was doing my paperwork and commented “It’s a pavlovian response…the kid saw nurses, he knows all that you eat is shitty junk food…hence, “Candy””. The nurses were not impressed.
I guess it does seem extreme (paleo/zone eating) but when people are sick and fucked up from their diet and lifestyle that can get pretty extreme also. Most folks in medicine seem to have this blind spot…they have this vague notion that diet has an effect on health but some kind of emotional disconnect occurs. “my family is just fat and prone to heart disease…are you going to eat that donut?”
If you are dialed on a paleo/zone diet I’d just run with that. Keep it simple!
Great stuff rob. I think i may be a crazy like you. Do you think gluten could be blamed for bad grades in school?? If so, thats my excuse! haha.
I was having a conversation yesterday with a couple guys and somebody said that in 30 years he thinks people will look at sugar like our generation looks at tobacco. I disagree and think it may be more like 60 years. I am interested to hear what you think the future of our nation looks like. The new USDA recommendations are due out in 2010. Do you see any steps closer to paleo or zonish? Just looking for an educated guess, nothing scientific.
The NewScientist had a piece a few years back saying the FDA knows it’s recommendations are dead wrong, but they would face a class action lawsuit that would make tobacco look like a parking ticket. The shift will likely happen but it’s going to take time to back away from the past, flawed recommendations. AS to bad grades: School just sucks!
I almost forgot, but today on Good morning America Jenny McCarthy was talking about her autistic son and how his attention and understanding of certain ideas was inproved by cutting wheat and gluten out of his diet. I was amazed! I didn’t catch the whole thing but definetly interesting. Especially from Jenny McCarthy.
The Autism/gluten connection is pretty impressive. But then again, so is Jenny McCarthy!
J Jones says
I know how you feel.
Sometimes I have to keep my mouth shut otherwise a 1 hour personal training session will become a rant about grains and sugar and sleep and the media and. . . you get the idea.
Porphyria isn’t an auto-immune disease, It’s a genetic disorder thats pass down through a gene defect. Porphyrics need high carbs. It helps the disorder.
Well Penny, good luck to you. We have put 3 cases of Porphyria into remission from a low carb, gluten based diet. In case you missed that these folks no longer suffer from the condition. And Penny, getting sunburn is also a “genetic” disorder that is passed down….it involves being alive and receiving an environmental insult, just like porphyria.
Arlene Sediqzad says
Where can I find these sites? Thank you, Arlene
Hello, I have Porphyria Cutanea Tarda. Can you please send a few websites with this diet Rob? I do find when I eat more protein and veggies I feel better than when I eat grains. I have read that I should be on a high carb diet, but I do feel better than when I am not. Also, I am vain, therefore I am not willing to gain weight. Please send info my way.
Robb Wolf says
To my knowledge my site is the only one with info linking porphyria and autoimmunity. Here is a good getting started and please read the comments from folks who have put their conditions into remission:
Arlene Sediqzad says
I have Porphyria CT & VP & would be very interested in viewing the sites you found.
Thank you, Arlene
Arlene Sediqzad says
I also have Porpyria CT & VP and would be very interested in finding a low carb diet. The list of things not recommended is endless.
Thank you, Arlene
Monica Dart Photography says
Hi Robb, I have vp Porphyria and was advised by my nutritionist to eat a high carb diet. I have recently been to listen to talks by South African Prof. Tim Noakes, Swedish doctor Andreas Eenfeld and LCHF follower Monique Forslund on the paleo/lchf eating. Apparently there is no scientific evidence that porphyrics should be eating a high carb diet. I have been on lchf/paleo for a week now, and although It is still early to notice any major changes, I don’t feel ill on it. It’s quite hard to know what the right thing is to do, as I don’t want to bring on an attack. Any other advice? Should I just keep going with the paleo for a few more weeks and see what happens?
Hi Monica, I am curious how you are doing and if keto/LCHF is still tolerable for you? I would love to learn more about what porphyria means in real life.
Emily B says
I have Acute Intermittent Porphyria, and had several acute attacks before going paleo(I am 36 years old). I have been Paleo since 11/2012. I slowly reduced carbs and added proteins and fats over a two week period. I started Autoimmune Protocol 09/2014 to take care of my autoimmune hepatitis, within a week my liver enzymes were going back to normal (they are currently normal). Since that time my only Acute attacks have been from essential oils (strongly filling the air in the room), and today, going keto to try and get rid of chronic sinusitis. A little about porphyria: There are 7 different types of porphyria. Six of them are hereditary. Attacks happen when a step along the path of blood being made goes wrong. For me, Drugs are the number 1 thing that sets off an acute porphyria attack. Secondly being sick, stress, dieting, and women’s hormones. Usually it has been a combination of three different triggers. As long as I follow some guidelines, that I have discovered along the way, I am able to live attack free and healthy. Porphyria will ALWAYS be with me, unless I receive a liver transplant. So there are precautions that I take. I eat proteins, fats, vegetables and some fruits and nuts, plus about 150 grams a day of sushi rice/ sweet potatoes/ etc. When I have a porphyria attack, it starts with a stomach ache that won’t go away and proceeds onto peripheral neuropathy in my left hand and arm and continues into my face. The one thing that I have found for home treatment to stop the attack is huge amounts of gatorade until the symptoms stop and then carbs that have no protein/fat or iron in them. I follow this protocol until I am feeling better. At which point I am able to go back to my normal paleo autoimmune protocol lifestyle. This journey has been mine. Each individual needs to find what works for them. My hope is that my account will help others with porphyria.
Helen Schollar says
I have Porphria Cutanea Tarda Type 2, which is the familial type and only passed down if both parents are carriers, although not to all children, my brother doesn have it. I was diagnosed at 3 years old. I have struggled with my weight all of my life and in January I went keto. I am 35lbs down as of today, down from 271lbs start weight I have also started the couch to 5k programme and intend to add some weights in to my regimen very soon. I would highly recommend keto to anyone and everyone. It’s amazing! Thank you for posting this and giving me the science to back up the best life decision i
Robb Wolf says
This is awesome Helen!!
Helen Schollar says
Thank you! It really has been the best decision of my life. I’m struggling at the moment because of the eostrogen dump that’s coming when the fat cells are emptying (excess oestrogen is an issue in PCT type 2) but I know that’s temporary and once I get to where my weight is stable, that will stop and I can hopefully then be symptom free. 🙂