Let the experiment begin…

10 03 2011

This past year I’ve been experimenting with many different diets in an attempt to control my lupus (SLE) through diet. So a little background first since this is my first post and the stepping off point on my paleo journey.

Lupus is an autoimmune disease. An autoimmune disease is one where the body’s own immune system mistakes its own organs and tissues as foreign and attacks them.  This creates inflammation that can cause joint stiffness and pain, skin lesions and fatigue . Sometimes the inflammation becomes so severe that entire organs or systems are compromised. In my case, I have been on the brink of kidney failure. Other autoimmune diseases include: MS, rheumatoid arthritis, scleroderma, type 1 diabetes, addison’s disease, etc., etc.

Lupus has periods of inactivity (remission) and activity, called a “flare up”. I have been in a flare since November 2008. I started a new job that was extremely stressful and within 2 weeks my 11 year remission was over! My treatment – without hesitation my docs put me on corticosteroids (prednisone), anti-malarials (plaqinil) and immunosuppressants meant for organ transplant recipients (Imuran). Some pretty strong, intense, side effect laden meds. These side effects included weight gain, nausea, hair loss (on my head), hair growth (on my face and arms), extreme fatigue, moon face, bloating – all of which made me feel pretty defeated and a little depressed.

So, I began my diet odyssey in order to find some sustainable way of life that would essentially quiet my lupus flare (enough to get off the meds) and eventually put me into remission.

I began with vegetarianism because vegetarians are all really healthy right? Didn’t work, I didn’t have any reduction in symptoms.

So then I went fully vegan, for 7 months in fact. I did have less joint swelling and pain but was unable to come off the meds completely. I’m still taking a full dose of plaquinil.

So my last ditch effort is the paleo diet. If this doesn’t work I’ll go back to vegan, swallow my meds and call it a day. I’ve read many instances where this approach has helped with autoimmune diseases. Let’s hope it helps me!

This diet is indicative of eating like our ancestors did 10,000 years ago (as much as possible in this modern world of GMOs, etc.). So I’ll eat lean meats, fish, shellfish, eggs, veggies, fruit, nuts and seeds. That’s it! No dairy, no grains – which means no rice, corn, wheat, bread, ice cream and chocolate 😦

But I’ll get over it!

So, I started the diet on Monday (March 6, 2011). It’s been about 3 1/2 days and I have to say that I had a little stiffness in my left hand which kind of comes and goes but my hands and joints are not swollen and are, in fact, the most un-swollen i’ve seen them in a very long time. As, for fatigue, I’m going to give myself a couple of weeks before I comment on that because I am just getting over a nasty chest cold that has lasted 2 weeks. As for my weight – it’s been 3 1/2 days and I’ve lost 4lbs!! I haven’t even started back to running since my cold and I cannot believe the loss! So I’m saying with NO exercise I’ve lost 4lbs! I also have no delusions here, I know it is all fluid but it still makes me feel good!

Week one is going pretty well, no cravings and easily staying on track.

Until then,




3 responses

11 03 2011
Susan Morgan

Hi there. I have RA and started a paleo-type plan about six weeks ago. Initially that meant no grains whatsoever – which was huge for me, I esp loved my daily oatmeal – but including a bit of plain yogurt and the occasional dark chocolate. About three weeks ago, I started stumbling across all the lectin-info related to RA and learning more about the paleo diet movement on the web, and so have now also gotten rid of the yogurt and chocolate. I eat a lot – fish and chicken, steamed and roasted veggies, salads, nuts, almond butter and fruit – and haven’t been hungry. At all. Have just lost a couple of pounds, but I don’t have that much to lose. The biggest thing is, like you, my left hand looks very … different. Not swollen. Dare I say it, normal! I have been admiring it all day, in fact. I don’t know what the future holds and if this will continue to improve, but so far I don’t miss grains a bit!

11 03 2011

I love “normal” looking hands! It has been a while! Yeah, I just went cold turkey with the diet. I was vegan for 7 months I had already eliminated dairy but the thought of eating meat again kind of grossed me out so I thought I would just jump right in whole hog. Like you, I ate oatmeal every single morning but so far (and it’s only been 4 days) I’ve had no cravings for grains (which being vegan, consisted of about 60% of my diet). Unfortunately, I have a stocked pantry full of quinoa, amaranth, rice, etc., etc., etc.
Are you relatively pain free now? If so, how long did it take? Have you started reducing any meds and/or do you plan to?
I wish you pain free mornings and slender fingers! If you don’t mind, I would love to stay up to date with your progress. I would like to know what I have to look forward to!

14 03 2011
Susan Morgan

And of course, have stiff fingers this a.m.! Spoke too soon. Although throughout this process there have been a few blips, probably from something unknown I’m eating in meals out, or who knows what. But overall there’s no question things are improved. In “digestion” (TMI?) and numerous other areas. I’m just starting my 7th week and will happily stay in touch. We can share tips!

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