ASK: Is this really hurting me?
I wish I’d gotten this advice years ago when I was trying different diets in an effort to find out what would help me manage my symptoms and flare-ups. How do you find out? You try an actual elimination diet.
That doesn’t mean going cold turkey or suddenly throwing out everything you love from your cabinets or pantry. It doesn’t mean trying an absolutely restricted diet. It means temporarily removing a certain food or foods from your diet. After you’ve removed it/them (and this varies by individual) for at least 3-4 weeks, you can slowly bring back one food at a time and watch how your body reacts. Are you struggling with peppers and spicy foods? Is it dairy that’s contributing to your inflammation? It’s much easier when you can isolate them.
ASK: What do I need to feel satiated and happy when I eat?
You are what you eat, but there is also an element of eating that is pleasurable and meant to be enjoyed. Food should taste good. Now I’m not suggesting that you use this question as an excuse to respond with binge eating your favorite foods. Rather, if you’re following a regimented diet and still feeling hungry, you might need to eat more of what you enjoy that fills your belly in that diet.
I remember when I first tried Whole 30. I didn’t intend to eat so few carbs or deprive myself of dessert. Yet I found myself desperately making raw chocolate in my kitchen and scarfing down flax seeds and strawberries late one night to kill the hunger pains. It didn’t work. I quickly realized that in order to meet my needs with Whole 30, I needed a lot more carbs and, for me, that was a variety of potatoes.
ASK: Are there different ways I can prepare this food? What research do I need to do?
Let’s be real. When you’re limited to eating certain foods over and over again, it gets boring. You have to change it up, especially if you’re going to stick with a restricted diet for life. This means seeking out different recipes and actively looking through relevant cookbooks.
Tips for autoimmune mamas on a stricter diet
Now if you’re a mom, I know you don’t have time to look through cookbooks. I find it helpful to follow chefs and food channels like @autoimmunepaleo and @halfbakedharvest on social media. If something looks appetizing and interesting, I save the recipe.
Sometimes this means finding super delicious recipes that aren’t paleo and substituting ingredients I know I have that will work, like coconut oil or ghee in place of butter. Or coconut aminos in place of soy sauce. With Sjogren’s, I try to limit my salt intake, so I generally use no more than 1/4 tsp in any recipe. If I’m baking, I’ll use coconut palm sugar or maple syrup (the closest to what was formerly known as grade B) in place of cane sugar. I’ll also subsitute with medjool dates, like when I make Buckeyes at Christmas. Frankly, you can’t tell a difference.
In desperate times, I rely on my paperback copy of Mediterranean Paleo Cooking and my hardcover Cooking from Scratch and lately One Pan, Whole Family. You’re probably wondering when I even have time to make paleo food from scratch with my full-time job and a baby that’s almost 10 months old. I’d like to practice weekly food prep on Sundays, but most Sundays I’m resting, so… sometimes I impress myself and get fresh ingredients during the week to cook on the fly, mostly with grocery delivery or pickup through Instacart (yes, I’m that parennial). But mostly, I rely heavily on using frozen vegetables or fruits in easy Vitamix recipes and Crock Pot recipes.
I also freeze what we won’t be using or eating in a week’s time for future meal planning: homemade bone broth, apple butter, tomato sauce, or other leftovers.
Another thing I do is toss everything I need to eat in a bowl and mix it. Often I’ll just throw our leftovers into a bowl with some greens, a little bit of this dressing, and some probiotic pickled carrots.
And here’s another tip. If you can afford to outsource it occasionally, do it. Before I found local delivery service Methodology, I’d order Sunbasket once or twice a month. It made it easier on us with a newborn, even if I still had to prepare and cook the meals myself. Admittedly, most of the time I would alter Sunbasket’s recipes. I wouldn’t use their recommended salt intake and I wouldn’t pan fry it or use oil like most recipes “require” from Sunbasket. I’d bake or broil most items. Occasionally we’d grill them.
Full disclosure: I’m not perfect
I don’t want to sound like I’m preaching with my methods. I’m going to be straight with you. I’m not perfect at following my paleo diet 100% of the time. It’s not just because I’m a new mom and life is generally chaotic. Part of the struggle is I’ve always been a foodie, even before my diagnosis. I believe that part of living means experiencing what brings you joy. Part of that joy for me has always come from food.
As with any autoimmune disorder, I have my good days and bad days. I can go a solid month without drinking alcohol simply because I’m dealing with too much inflammation. Sometimes I’ll go two months without dairy, especially if I’m fighting off multiple viruses… And then sometimes when I’m feeling somewhere close to normal-ish I’ll cheat and eat pizza without feeling guilty about it. Even if it means I have to take probiotics and deal with the effects on my gut. To me, it’s just part of managing my autoimmune disease. I don’t chastise myself for falling off the bandwagon and not being as strict with my diet all of the time. As far as I’m concerned, life is too short to not occasionally indulge and eat that cake.
And the truth is I have seen many specialists over the last three years for a variety of health issues. Each one always seems to have an opinion on what I should or shouldn’t be eating and they’re all in conflict with each other. I’ve also seen different levels fluctuate in my bloodwork after being on stricter diets for 3-6 months. There never seems to be an easy answer for me.
Living with an autoimmune disease is a balancing act. When I’ve overdone it or noticed that a particular food has negatively affected me, I have the discipline to rein myself back in and do what it takes to feel better. And that’s ultimately what matters most.
What people don’t realize is there isn’t a cure. And even if there was one, it wouldn’t work for those of us already affected. Once the damage is done to your glands or organs with Sjögren’s, it doesn’t go away. Inevitably you must find a way to live with it and still enjoy living your life to your best ability.