116 posts by PatientsLikeMe

Why is dietary advice so all over the place? Nutrition experts explain

Posted 2 days ago by

If you’re confused about what kind of milk to drink, what type of cooking oil is “healthiest” or whether the Mediterranean diet is the ticket to heart health, you’re not alone. Nutrition experts dig into the complexity of dietary research.

Digesting dietary advice

The constant churn of nutrition news, books and blog posts — combined with the growing number of food options at the grocery store — can feel contradictory and make your head spin when it comes to making healthy diet decisions.

“As a dietitian, even I get tripped up when new studies that come out that question my beliefs,” Washington Post writer Cara Rosenbloom admits in a recent article on “how to handle ever-changing nutrition science.” She interviewed Dariush Mozzafarian, the cardiologist and researcher behind this 2018 BMJ analysis of nutrition science.

They make the case that we have an issue with how we “digest” food advice:

  • We take it very personally. “If you learn in physics that there was new research about a black hole, you may say, ‘Oh, that’s interesting,’ but you don’t change your habits because the science has changed,” Mozaffarian says. But people these days tend to swiftly avoid or adopt foods (such as wheat/gluten or coconut oil) based on new information or faddish magazine reports that may not warrant dietary changes.
  • We cling to every new study. New nutrition research comes out weekly but people (and policymakers) would be wise not to focus on single studies, Mozaffarian argues. Understanding the relationship between foods, wellness and disease takes a long time.
  • We don’t have centralized government guidelines. The U.S. Department of Agriculture (USDA), the Food and Drug Administration (FDA) and the Department of Health and Human Services (HHS) are just a few sources of government recommendations on nutrition. Mozaffarian says a cabinet-level position that centralizes or coordinates nutrition guidelines would help eliminate confusion.

Other issues + pointers

Other nutritionists point out that dietary science is still in its infancy (see this infographic), and most nutrition studies are observational (rather than randomized control trials, which offer more evidence about “X may cause Y or Z”).

Researchers behind a major study on the Mediterranean diet and heart health recently had to retract and re-analyze their work because it was flawed (although version 2.0 reached the same conclusion — the Mediterranean diet can be beneficial for those with cardiac risks).

Even if you’ve figured out your own eating plan or nutrition philosophy (like Michael Pollan’s famous one: “Eat food. Not too much. Mostly plants.”), articles about diet still make great clickbait. Look for pieces that ask questions and cite research and credentialed nutrition experts, rather than making blind declarations or heavily promoting certain products. And always check with your own doctor or care team before making dietary changes or even taking new vitamins or supplements.

Do you follow a certain eating plan or style? What do you struggle with most when it comes to eating (or understanding nutrition advice)? Join PatientsLikeMe or log in to connect with the community in this forum discussion. As a member, you can also add any supplements or diet types (such as Mediterranean or low-carb/high-protein) to your profile (under the “My Health” tab) to assess them and track a more complete picture of your health.

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Hair loss with lupus: Tips and treatments others have tried

Posted 1 week ago by

Are you losing some of your locks because of lupus? Hair loss isn’t usually listed among the core symptoms of lupus, but it does affect many people living with SLE (systemic lupus erythematosus) and discoid lupus. It may be caused by lupus itself, certain treatments for lupus, or other illnesses or health issues (such as thyroid problems or nutritional deficiencies), according to the National Resource Center on Lupus. How do PatientsLikeMe members manage it and try to protect their mane?

How members manage hair loss

A number of PatientsLikeMe members with lupus have mentioned hair loss in the forum, and some say that hair loss was among their first cluster of symptoms pointing to lupus or a health condition. (Join PatientsLikeMe or log in to see members reporting hair loss, its severity and treatments they’ve tried.)

The same tips and products won’t work for everyone (and remember to check with your doctor before trying new supplements or treatments) — but here are a few pointers and perspectives from members who’ve had hair loss.

“My hair has been falling out for 2 1/2 years. What’s helped me with it is coconut oil, hair vitamins (vitamin B, folic acidbiotin). This doesn’t stop it from falling out but it speeded up healthy hair growth.”

“Plaquanil causes hair loss. I’ve been on it for over 15 years. My sink and shower usually gets clogged up from my hair loss. I get sew ins or braids and wear wigs occasionally. Just last month I got my hair cut short to eliminate breakages.”

“My hair started thinning and getting coarse before I was diagnosed, but it falls out in masses after 3 weeks on Plaquanil. I can’t afford hair extensions, but my doctor and hair dresser both told me about the same product that people with lupus and cancer use….and it is MAGIC. It is called Toppik and it comes in many different colors and forms. I find the powder fibers to work best.”

“I started taking 5000 units of Biotin. See a huge difference the first month and the second month I actually had to get my hair trimmed.”

Others say that supplements and treatments haven’t helped in their case, so they stick with short haircuts, wigs and/or extensions.

Lupus News Today rounded up “9 Tips to Prevent Hair Loss,” including talking with your doctor about your treatments, keeping stress levels low, getting plenty of rest, and avoiding sun exposure and certain kinds of lighting that may contribute to hair loss.

Have you experienced lupus-related hair loss? Join PatientsLikeMe or log in to connect with others on this topic today.

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