Written by Suzette Wenzler
Dear Robb,
Hello, I’m 38 years old, female, 5’2″ and 95 lbs. Although I have been relatively healthy for most of my life, approximately 2 and a half years ago, I was diagnosed with Lupus, but only after a seemingly sudden and mysterious onset of symptoms: Vasculitis (BP went to 200/105), branch retinal vein occlusion in the right eye, uveitic glaucoma (intraocular eye pressure of 60 mm/Hg in the right eye and 40 mm/Hg in the left eye), I developed cataracts (had cataract surgery in both eyes in 2010), and severe joint pain in nearly every joint in my body. After being referred to a rheumatologist by my retinal ophthalmologist, I finally received the diagnosis of Lupus. Although it was a relief to finally know the explanation for all my health problems, I felt that I was basically sent up the veritable “creek without a paddle.”
Having been practically turned away by my rheumatologist because I didn’t want to take the prescribed treatment for Lupus (an anti-malarial medication called Plaquenil) after it played havoc with my gastrointestinal system and effectively squelched any semblance of an appetite), I have been left to my own devices, and ibuprofen. After extensive reading about dietary factors (ahem, GLUTENS!) leading to the inflammatory processes in the joints, I started thinking that I would benefit by cutting back on my intake of glutens. Little did I know that they should be eliminated completely in order to break the inflammatory response cycle, but as luck would have it, I recently stumbled upon your book. Around three weeks ago, I cut out all the glutens. Never having been able to digest legumes, those were easy to eliminate from my diet since I rarely consumed them anyway. I’m lactose intolerant (self-diagnosed) so it was also not a problem to limit my dairy intake. I’ve mostly been buying unsweetened coconut milk to use instead of cow milk anyway, knowing that soy milk is a painful experience for me.
Getting to my point: your approach to eating the Paleo way has been a life-changing experience for me! I haven’t been this pain-free in my joints since I was literally a teenager! For the first time in YEARS, the joints in my feet don’t shriek out in pain when I first get out of bed in the morning. Going up and down the stairs doesn’t leave me weeping from knee and hip pain. Typing on the computer keyboard doesn’t leave my fingers tingling with joint pain. I told my Dad that if I were not agnostic, I would forsake any deity that I had previously chosen to worship, and I would worship you instead! (As for Dad, I’m still working on converting him to the Paleo lifestyle, but he’s pretty opposed to cutting out his beloved grains and legumes….) Having given up my bicycle years ago as the result of “unexplained joint pain,” I’m actually shopping for a new one right now. I realized that I don’t have to excuse myself from going hiking in the beautiful Blue Ridge Mountains where I live!
Thank you soooo much for your efforts in writing about the Paleo lifestyle. As a healthcare worker myself, I am exposed to many patients on a daily basis with all the typical health problems: obesity, diabetes, CVD, arthritis, etc. I want you to know that I have been spreading the word about how you’ve helped me, and with persistence, we can keep spreading the word as often as we can. I think that people facing health crises will tend to be more receptive to this information than those who are not yet aware of the time-bombs upon which they’re sitting, but I’m going to be working on the latter group also. Thank you again, Robb.
Kind regards,
Suzette Wenzler
Sienna says
An amazing story. I’m so happy for you! Only 3 weeks? It’s almost a miracle isn’t it? People just can’t believe that eating something as delicious as a sandwich can make them sick. I know, I even have trouble with it. I’m brand new to this paleo diet too. But so far I think it’s weird, amazing and wonderful. I’m obsessed!
Love your story Suzette.
Barb, RHN says
“I think that people facing health crises will tend to be more receptive to this information than those who are not yet aware of the time-bombs upon which they’re sitting.”
Truer words have never been spoken! I am a nutritionist who promotes the paleo diet. I had occasion to sort of almost “work” with a Crossfit gym in Edmonton, AB.
They simply could not wrap their heads around the idea that everyone was different, and that not everyone was young, lean, healthy and able to work out intensely 6 days a week.
Plus, they were doing a good business selling hemp protein shakes to their clients, and misinforming their clientele by telling them that they were “paleo”…once I laid the truth on them,
they could not get me out of their club fast enough! LOL!
mhikl says
Hey fellow Canuck, glad to see a nutritionalist who isn’t tied to the standard guide of bad nutrition. Thankfully we have so many great gurus from whom to learn, such as Mr Wolf. Nora Gedgaudas is another great source, truly the goddess of Paleo: see “Paleo Body, Paleo Mind” for a good nutritionalist that is bucking the trend to sugar diets pressed by the medical authorities.
The biggest problem is getting people to overcome their indoctrination, a life of such in all facets of life. Fat fear, ignorance about cholesterol and triglycerides is a big one. Animal fats being dangerous is another. That seed oils are healthy is a terribly noxious truism to overcome. According to Ms G, Animal fats, coconut oil and a little truly virgin Olive Oil are about the only food oils to consume. Check out Tom Muller’s books “ Extra Virginity—The Sublime & Scandalous World of Olive Oil” or hear him at RainmakingTime http://itsrainmakingtime.com/tom-mueller-olive-oil-isnt/ . We just cannot assume anything in the realm of health and that you, an RHN is bucking the trend to conformity is so heartening to hear.
Preach on, good nurse! 🙂
Gabby says
May your food be your medicine! Great story and results.
Miki says
Great story. So interesting that IMO being agnostic is equivilant to believing the SAD is healthy. Not judging, just stating my thoughts. I have thanked God many times for leading me to smart guys like Rob Wolff and others who have shown us the information we needed to save our son’s life.
Erica says
Great story with a touch of inspiration!
Mark says
Great story. New to site but have known of Robb since his early CF days. I am 51 and type 1 diabetic. I also have joint pain and am looking forward to new eating philosophy.
Thanks for your story.
lisa says
Hi all! I’ve got the first week of paleo eating under my belt and I’m feeling great even energy and clear thinking, but I am experiencing and increase in joint pain, particularly in my hands. Has anyone else experience this in their first week? Doing everything the same as far as use. I’m hanging in there as I expect it’s an adjustment my body is making, but would love your comments! Thanks!
denice says
I have RA for the past 3months.-when i found out i did paleo, but not autoimmune pale-absolutely got worse joint pain. nutritionist put me on 7day liquid only diet, then 10 days steamed veggies and veg soup-in 12 days joint pain improved 75%. now i only have minor joint paint in hands. feet knees and wrists all good.
Jil says
I, as well, have RA. I have been gluten free for the most part, as it is a learning experience, for 3 months. I have been experiencing a very obvious, almost crippling in my hands and now wrists and very swollen. I feel better in a lot of ways and will never eat a piece of bread among other things. However, if I can do something to stop this I am all for it.
Stephanie says
Hi Denise just curious if u continued on this diet and could u explain more about how the liquid diet worked and what was involved in that and how did u go forward with this diet and have ra symptoms calmed down?
mhikl says
lisa, see my other post on ligaments, tendons and bone broth. Half my life now in pain is gone having gone paleo, at least 90% or so. The addition of natural, full complex glucosamine from these overlooked foods has put that bad puppy to bed, 100%. I actually eat the ligaments raw-I get them from T&T, a Chinese grocery. I cut them up fine and swallow about 20-30 or so grams, about an ounce,e a day. You can cook them slightly if you are worried about pathogens. They have no taste and are great to stew in soups to give ‘body’ or mouth feel. I think you will be amazed with the results.
Namaste and care,
Michael
Missy says
Thank you for this story! I have vasculitis (no known cause) and I’m on plaquenil. My doctor wanted me to start methotrexate, a chemo drug, to help with my recent flares, but I felt like diet and exercise had something to do with it since I had recently gained about 10 lbs. After spending the ENTIRE weekend reading about anti-inflammatory diets, I can across this. I’ve already started, and I”m looking forward to watching the results.
Elisabeth says
Hi Missy,
Not sure if you’ll see this reply or not, but just curious how you’re doing with the vasculitis and whether going grain-free has helped! My father-in-law was diagnosed with vasculitis earlier this year and has been on chemo, steroids and a host of other drugs for side effects. I’ve been hunting down alternative therapies, mainly nutritional ones, and just found your comment!
Lupus on a Paleo Diet says
I’m commenting in case others suffering from lupus find this. I was diagnosed with lupus in 2011, after years of weird symptoms, including chronic fatigue, discoid rash, and culminating in horrible, paralyzing pain along all my major nerve systems. Was originally tested for multiple sclerosis, but they settled on lupus. The drugs (Prednisone, Plaquenil, Methotrexate) only exacerbated my symptoms.
I went to a good naturopath, who put me on a restricted version of the paleo diet (no dairy, eggs, or anything I’m allergic to or react to; I can have low-glycemic fruit eaten only with fat like coconut oil, and non-starchy vegetables).
I also take high-EPA/DHA fish oil, vitamin D, curcumin (I can’t take NSAIDS), and a host of other supplements in a program designed for me by my naturopath. Fish oil and D have been proven in studies to help lupus.
My lupus markers are down, but better yet–I am feeling much better! If you do this, please work with a really good naturopath. Also, please be diligent and patient. It took me 3-4 months before my trigeminal neuralgia and sciatica went down significantly, and 8 months before I could walk more than a mile. I don’t have flares, like many on regular lupus meds (at least not in the last 2 1/2 years).
The diet and the supplements were key. If you have lupus, and don’t have good results trying the paleo diet, perhaps you’re not going far enough. See a good naturopath, keep up with your blood and urine tests, and keep at it! Good luck!
JodiMac says
Hi there,
Can you comment on the host of other supplements you use for your lupus? Have you remained flare-free since the time you wrote the post?
Thank you
Margarida says
Dear PM,
I was diagnosed with Lupus two weeks ago. Thank you for your piece of advice and for sharing your experience. I would like to follow your steps concerning diet, naturopathy, etc. Let’s see if here in Portugal I find alternative ways to replace medication.
Cheers!
Vitaliy says
Dear “Lupus on a Paleo Diet” please advise me your naturopath
Jenny says
Hi all,
I am newly diagnosed with lupus and have been on a gf diet for well over 5 years. I was wondering if anyone could explain the mechanisms that paleo interrupts with regard to lupus and why df and other modifications may be helpful.
Best regards
Jenny