19 posts tagged “TOA”

Zoodles! Let’s dish on lupus/food + swap recipes

Posted 3 weeks ago by

If you’re living with lupus, have you found any particular foods that affect you and your condition — for better or worse?

Member Jeanette (JeanetteA6872), a member of the 2018 Team of Advisors who’s living with systemic lupus erythematosus (SLE), shares which ingredients she tries to include or avoid in her diet, plus three of her favorite recipes (psst—one involves zoodles!).

Food Q&A with Jeanette

Jeanette says she turned to dietary changes when she stopped taking Plaquenil due to severe side effects, including retina damage. “I had nothing to lose — I signed up for Tony Robbins’ Unleash the Power Within [a self-help program] that made me look at myself and my relationship with food differently,” she says. “I started logging my food intake for a few weeks on and off, I noticed how some of my favorite foods were causing me some issues ranging from stomach pains to full inflammation. That’s when I started paying close attention to what my body was telling me and I needed to do something about it.”

Here’s what else she shared with us in a recent Q&A. Everyone is different, so these foods and dietary changes may not affect you and your lupus the same way. Talk with your doctor or a registered dietitian about finding foods that work for you.

Have you noticed any specific ways that your diet or certain foods affect your symptoms?

I didn’t go on any specific diet at first, I started eliminating certain foods like sugar (which was causing major fatigue and pain), garlic (causing major inflammation in my knees), eggplants (fatigue and pain in my feet), bean sprouts (stomachaches) and alfalfa (full inflammation and full flare) — some of the known foods that lupus patients shouldn’t eat [learn more at lupus.org].

Then I noticed how meat was causing me fatigue and I noticed inflammation directly in my knees. I tried giving up red meat for two weeks, and I felt good and noticed a reduction of pain. Then I gave up chicken the following two weeks and felt even better. It was so amazing that I decided to give it up for good. After the first few months without meat, my doctor started noticing my blood work was improving drastically, so she began reducing my medications since I was no longer flaring or feeling pain. After a full year she reduced all of my medications to zero and even stopped my infusion.

I notice that if I eat too many potatoes like French fries, baked potatoes or mashed potatoes, as well as tomatoes, salsa, mushrooms and peppers, ice cream and cheese, I feel a little stiffness, so I know it’s too much. I really try to avoid processed and fried foods in general as I immediately notice stiffness.

I do still eat gluten and dairy products, just not every day. Everything in moderation works best, I’ve noticed. If something bothers me this week, I know not to repeat it.

Are there any foods that you try to eat often?

I don’t eat many of the same foods daily. I drink my shakes, but I like a variety of foods from pastas, salads, homemade cauliflower crust pizza, rice and beans, and I started eating fish again, so that’s more protein. There are meat substitutes like Gardein, Beyond Meat and black bean burgers that make great meals.

With the new eating style, I knew I needed to find some type of supplement for my vitamins and minerals because you get so many different vitamins from animal products and I wasn’t eating the same way as before. I tried Herbal Life, then Shakeology, then Modere, and none agreed with me because I have so many allergies. So I gave Isagenix one last try. It was perfect for me. Wow — my blood work started coming back so good, my doctor asked me what my secret was, since I [also] started working out and feeling even more amazing. I feel as if my life is back.

Do you have a few favorite recipes you’d like to share?

(Click on the links for a printable version of these recipes picked by Jeanette!)

Veggie scramble – This veggie-packed egg dish is scrambled in coconut oil and topped with avocado and tomato

Citrus fish tacos – Lettuce leaves serve as the “tacos” in this tilapia recipe, complete with mango salsa

Creamy zucchini pasta with shrimp – “Zoodles” (julienne-peeled zucchini “noodles”) and an avocado-basil “cream” sauce? Yum!

Which foods do you eat or avoid with your lupus in mind? Please add a comment below or join PatientsLikeMe to chime into this forum discussion!

Share this post on Twitter and help spread the word.


Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Posted 5 months ago by

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.”

I’ve always been a sucker for a focus group. Give me some free pizza and I’ll tell you everything you want to know about your product, service or ad campaign. In fact, I got into advertising as a career because I liked the research part of it so much.

So, when I was diagnosed with multiple sclerosis, I applied that same mindset to my disease approach.

The first MS research study I did came a few months after my doctor prescribed Avonex. For someone with a virulent needle phobia, a weekly intramuscular shot sounded almost worse than having MS. So I spent the next few months imagining myself on a beach—right before I tried in vain to push an inch-and-a-half needle into my leg. The meditation didn’t quite take, but my passion for research didn’t waiver (thank goodness for a husband who didn’t mind giving shots and, later, the Avonex quick inject pen!)

Next came the EPIC Study — “an intensive observational study of over 500 people with MS who have been carefully studied since 2004.” I even got my parents involved as a control group. Once a year for twelve years I’ve been getting evoked potentials, an eye screening, a hand-eye coordination exam, and a bonus MRI — I also play a dreaded number addition memory game. I’m proud to be part of this study—last week I was lucky enough to see some of the preliminary findings that I contributed to (hint: there is some AMAZING stuff happening in the MS therapy world.)

I made a brief, but unsuccessful, journey into a Copaxone clinical trial where I had the honor of getting lipoatrophy faster than any patient my doc has ever seen. My case even made it into a medical journal. And while the dents in my thighs never let me forget this one, I like to think my experience helped someone else avoid their own unseemly dents.

My research obsession doesn’t stop with MS. I fit a patient profile for a breast screening study to determine if mammograms alone or with a DNA test can improve outcomes for detecting early cancers. I was happy to be a part of this work, plus I learned I don’t have a carrier gene—a nice bonus of helping out.

Yes, health studies are a bit addictive to me. I get a thrill from trying a new approach or having my data contribute to a new protocol. And while there are different levels of research (especially when it comes to drug trials), every observation, every data point moves our collective understanding about MS and chronic illness forward. I’m grateful to play a role in that; it’s powerful to use a devastating diagnosis for good.

So, what’s next? The other day I heard about an MS gut microbiome study. The details are…a little gross. But sign me up!

Share this post on Twitter and help spread the word.