Tuesday, February 3, 2015

Goundhog Day Was Day One.

Oh-oh is right. Oreos are seriously no-no for the next thirty days. 

Guys. I've embarked on a thirty day project. Want to hear all about it? Of course you do....

It all started about two weeks ago when the Pacific Northwest had a stretch of unusually warm and dry weather. Ahhhhhhh......I loved soaking up that sun.......even though I had sunscreen, long sleeves, and a hat on while doing so. After about three days during which I took some walks outdoors and spent some time in my wicker rocker on my front porch, I noticed with dismay the return of a few faintly pink but undeniably lupus blotches.


Sigh. I am currently taking prednisone, Plaquenil, and CellCept for cryin' out loud. Dr. Young Guy would rather we did not add my much-loved rituximab to the mix any time soon since although it boosted my energy levels, it did not keep the subacute cutaneous lupus at bay; and in view of a previous nasty drop in my leukocytes thought it best not to tempt fate again. So I feel as though I have reached the high end of my comfort zone regarding pharmaceuticals entering my body seeing as I'm currently taking just about all of the recommended meds for SCL and autoimmune disease in general.

(Remind to to write a post about the benefits for me while on CellCept later. Actually I find that taking it positively affects my fatigue. Not as much as rituximab, but without the dramatic highs and lows in energy levels that accompany that drug. More about that another time....)

The thought of spending yet another spring and summer hiding indoors does not sound fun and to be honest, makes me rather cranky. Seriously cranky. There HAS to be something else that I can do to decrease my body's dumb stupid response to sunshine, I thought.

So I'm trying to problem solve. Here's my line of reasoning: What strategies are typical suggestions to avoid SCL flares?

  • Sunscreen? Yes.
  • Protective clothing? Roger that. 
  • Avoid being outdoors in peak sun exposure times of the day? Check.
  • Take prescribed drugs that have reputable studies supporting their use in treatment of autoimmunity? Yep, Yup, and Yessirree.

What other avenue of change could I possible explore?

Sigh. I knew this was coming: dietary changes.

Many of you have suggested that I consider examining my diet with the goal of decreasing some of the symptoms from my autoimmune diseases, and I've grudgingly come to realize that making a serious attempt at changing my eating habits may be long overdue. So here's what I have decided. After reading several books, The Autoimmune Solution by Amy Myers, MD and Anti-Inflammation Diet for Dummies by Dr. Artemis Morris and Molly Rossiter, to name just two; as well as reviewed endless websites dedicated to some type of diet that has the goal of decreasing the effects of autoimmunity, I've come up with a plan.

First of all, John and I are taking this little journey down healthy eating road together. While John does not have autoimmune issues and is overall a really healthy guy, still he struggles with some allergies which cause his eyes to occasionally be reddened and sore and he has frequent sinus infections. He uses a prescription nasal inhaler and uses a netti pot regularly, but his symptoms still re-occur. Many of the authors of these books and websites suggest that modifying one's diet may have the effect of decreasing allergy symptoms as well, so he's had his arm thoroughly twisted consented to be part of this experiment with me.
We're going to try changing our diet for thirty days. We're going to eliminate gluten, dairy, sugar, caffeine, grains, beans, processed foods, artificial sweeteners, and nightshade plants.


I won't deny that this is really intimidating. But I kind of like Diane Sanfilippo's attitude toward these types of diets as an ongoing effort to improve one's lifestyle:

  • That the foods you eliminate or avoid as part of a Paleo approach are the ones that are doing the most harm to your body. So, the first steps of simply eliminating grains, beans, refined seed oils, sugar/sweeteners, and grain-fed/pasteurized dairy products takes you at least 80% of the way towards achieving optimal health on a Paleo diet.
  • That Paleo is more about eating foods that are real, whole, unrefined, unprocessed, and nutrient-dense than it is about striving for some (non-existant, if you ask me) level of perfection.
  • That the largest benefits of Paleo are not about having access to food of optimal quality 100% of the time.
  • That fussing over the minutia of optimizing every aspect of your diet (some call this hacking) may actually do you more harm than good. You do realize that stress can undo everything you do nutritionally, right? No? You didn’t know that? Well, now you do. It can. Stressing over your diet may actually be making you far less healthy than those few bites of dark chocolate or that non-organic banana. Or that (gasp!) grain-fed flank steak. You likely take great pleasure in that dark chocolate (or insert other imperfectly Paleo food here). Life is about not just being healthy, but being able to enjoy being healthy!

You can continue reading here; and more about Ms. Sanfilippo here.

After thirty days, if we see no noticeable difference in A) my sun sensitivity and lupus outbreaks and B) John's allergy symptoms and C) our overall energy levels and feelings of well-being, we're going back over to the dietary dark side.

So there.

Wait. I should temper that. We're going to gradually reintroduce foods and try to discern if they make us feel differently.

I'm not going to allow myself to hope that these restrictions will allow me to get off my DMARDs and immunosuppressants altogether. I'm just not ready to go there yet since I remember all too well what life was like without them. But if passing up bread and cookies allows me to actually live life outdoors once in awhile.....I'm in.

February 2nd was day one. I'll keep y'all posted.

Do you follow a restricted diet? Has it helped? Share.


Heda said...

I cured my sun blindness (well almost) with saffron capsules. I was literally blind in sunlight. Had stopped driving during the middle of the day. Started taking saffron and never looked back. Now was it the saffron or did my illness progress to another region? Who knows? But I'm still taking saffron. My triggers are gluten, sugar and yeast. I'm not very good at avoiding them. Especially fresh pretzels.

Nicole said...

I am gluten-free. I try to go low on sugar, too, but if I cut it out completely I lose too much weight. Ditto cutting out anything else, although by far the majority of my foods are high-nutrient with a focus on whole foods. This seems to work for me. Again, if I could do it without losing weight I would go for a 99% cleaned-up diet rather than the 70% cleaned-up diet I have now. I don't have sun sensitivity so can't comment on that. Good luck wiith your trial! I hope you see results! :)

Kate S said...

I have Sjogren's and IBS, and have tried various diets. I have never managed to go sugar free, but have gone gluten free for two 6 month trials. Had little impact on either my Sjogren's or IBS.

What's helped with my IBS is FODMAP, which refers to various food sugars. For me, I have to avoid high insoluble fiber foods, many fruits and vegetables, as well as the typical dairy and fats. Counter to most conventional wisdom on good eating, but it does help my IBS.

Best of luck. In any of the diets I've tried, I've found the trick is to focus on what you're eating, not what you can't have. As in "mmmm this shrimp is good" not "yuk, it's not fried shrimp".

Anonymous said...

Back in Feb of 2013 a friend told me about a "diet book" called The Plan by Lyn-Genet Recitas. I had just been diagnosed with SJS and needed help. This so called "diet" is actually a 20 day elimination plan. Three days of detox (all fresh foods) and then reintroduction of other foods. Even if you don't follow her plan, her information is invaluable. I lost some weight and am able to keep it off but more importantly I learned from it that I'm gluten intolerant. After being off gluten and avoiding foods that make me feel bad, my blood test are coming back fantastic. Just more food for thought, so to speak. Good luck in your food journey!

Anonymous said...

I read The Immune System Recovery Plan by Dr. Susan Blum, and I am three months into cutting out gluten, dairy, and soy. I took out corn but didn't have any problems with it, so I put it back. I definitely have sensitivities to gluten, dairy, and soy, and I never would have believed it if I hadn't taken them out. I felt like I was having a Sjogren's flare when I started eating them again! Like one of the other commenters, I have to be careful with not losing too much weight by eating this way, so I need to figure that out--but... my fatigue is SO much better, I'm stronger, and I am not in pain anymore. It's really hard to do but I found that if I keep looking for recipes that inspire me, I can do it.

Kelly said...

Yes and yes. I am on pretty strict carb limits to keep pre-diabetes in check and recently was diagnosed with Interstitial Cystitis which requires further limitations, some at odds with my Low-carb regimen.

My blood sugar levels have remained under good control for many years without the drugs and I continue to heal from a recent major flare of the IC unless I eat something from the list of known bladder irritants, which sets me back.

It's hard, but do-able. I've been able to find foods I like that satisfy the requirements of both regimens pretty much everywhere I go. We are lucky to be living in these times of dietary fads. Almost every restaurant I visit has gluten-free choices, which often dovetail with my low-carb plan.

Cauliflower and spaghetti squash are my best friends when carb cravings creep in. Also if you can have a little dark chocolate, that helps.

Nicky said...

I always suffered from spring time allergies until I removed lactose from my diet. Its been 7 years besides the one year I worked at a hotel and ate all the goodies but 2 days after givig it all up the symptoms were gone ot was well worth giving up on those goodies good luck finding something that helps