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Lichen Sclerosus and Diet? Does the research look good?

Lichen Sclerosus and Diet? Does the research look good?

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Introduction And Exciting Announcements

Hey! Welcome to episode nine of season 2 of Lichen Sclerosus Podcast. Today we are joined by Erica Ebrel, a registered dietician and fellow Lichen Sclerosus warrior. Erica is here to talk to us about the relationship between the food we eat and Lichen Sclerosus. She is going to tell us all about what the research says, what we should do if we are interested to know if diet impacts our Lichen Sclerosus, and weighs in on some popular Lichen Sclerosus diets (e.g., low-oxalate).

Lichen Sclerosus Support Network – Thanks To Our Sponsor!

Before we jump into today’s episode, however, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring information, education, and most importantly, support to all Lichen Sclerosus warriors.

Be sure to follow them on IG and FB @lichensclerosussupportnetwork. Continue reading to the end for exciting announcements coming from LSSN!

LSSN logo, a teal heart and white letters reading LSSN through the heart with a purple background.

Lichen Sclerosus and Diet: What Does the Research Say?

Erica performed a study looking at different papers on Lichen Sclerosus and diet in literature databases. Thus, this study was not just academic for Erica, but personal as well (as she too has LS). 

This study was very comprehensive. Erica took the same angle as a researcher, mining literature databases and combing through the literature. Importantly, this process was complex. She searched for many different combinations of words in these databases. For example, “diet” + “Lichen Sclerosus”, “food consumption” + “Lichen Sclerosus”, “nutrition” + “white spot disease, etc.

Then, Erica filtered out irrelevant papers. Consequently, Erica was left with a mere 3 papers. Of course, this is rather unsurprising, given the limited amount of research on Lichen Sclerosus in general, but even more so when it comes to diet. 

Important note!

Importantly, these papers aren’t available to the general public. However, Erica has downloaded them and shared them with the LS Warriors membership. If you want to access the membership, join the wait-list.

Findings from Erica’s study

First Study Results on Diet and Lichen Sclerosus

Image of vegetables and fruit on a table. In the center are avocados, which were prominent in the diet used by the Italian study.

Initially, Erica began with a clinical trial in Italy, conducted in 2015. The study looked at 23 women with mild to moderate Lichen Sclerosus. Importantly, these women were not successful with steroid therapy.

They were given a cream to apply twice daily for 24 weeks. The cream consisted of vitamin E, soybean, and avocado oil. During this time, they also ate a diet high in fatty acids, for instance, soybean and avocado.

The women cited an improvement in their symptoms. For instance, at week 24, women reported less itching, burning, and pain during sex.


However, some caveats should be noted. First, the improvement at 24 weeks with the cream and the diet was the same seen with the steroids at week 12. Thus, steroids are more effective than diet. Second, this was a small stud. A mere 23 women were included, and 3 dropped out at the twelve week mark. Finally, the study was not double-blinded and there was no control group. Double-blinded control group studies are the most reliable because they screen for and reduce bias in the results.

Second Study on Diet and Lichen Sclerosus

Erica then looked at a case-control study. Case-control studies are observational. In particular, the researchers observe the lifestyle of participants without any intervention. The researchers wanted to see if different forms of vitamin A, such as retinoids (e.g., milk, liver, meat) and carotenoids (e.g., carrots and greens), had an impact on Lichen Sclerosus.

The study had two groups of women: 75 with Lichen Sclerosus, and 223 without Lichen Sclerosus. Both groups were asked to fill out a food frequency questionnaire. For example, they would be asked things like, “in the last month, have you consumed dairy” or “ have you consumed carrots”. Both groups took the same questionnaire.

Importantly, the researchers found most individuals with Lichen Sclerosus ate a diet low in carotenoids. Conversely, the people without Lichen Sclerosus had a much higher intake of antioxidant-rich foods. Additionally, they saw no statistically relevant association with Lichen Sclerosus and retinoids.

Image of carrots, which contain carotenoids which were lower in the diets of those with Lichen Sclerosus.

Importantly, this study too has its limitations as well. First, it is a control case study that is purely observation-based. Second, the questionnaire is also problematic in that it does not represent a full spectrum of what the individuals were eating. 

However, despite its results being non-conclusive, its findings are exciting as we know vitamin A is anti-inflammatory and has an effect on the immune system. Therefore we need more quality research and replication with respect to this study (especially since it was published in the 1980s).

Third Study on Diet and Lichen Sclerosus

Finally, Erica looked at was a study from Portugal comprising 228 patients with Lichen Sclerosus. Researchers asked them about their diet and if they had any triggers. Of the 228 patients, 85% had symptoms and the rest were asymptomatic. Critically, only 25% reported food as a trigger.

In fact, this 25% aligns with the results of a symptom tracker challenge we did in the LS warriors memberships. For a couple of months, members tracked their symptoms and we compared notes. Importantly, of the 4 women that tracked symptoms, only 1 reported food (dairy and gluten) as a trigger for their LS. This matches up with the percentage from the third study.

In sum, the 25% reporting food as a trigger, the top three foods were:

  1. Pork.
  2. Spicy Foods
  3. Fried foods.

Similarly, Heather Cooan also noted a pork sensitivity in her episode on nutrition therapy. If you haven’t yet listened to that episode, you will definitely want to listen to it here.

Lichen Sclerosus, Diet, and Finding Your Triggers

Indeed, there are two main routes you can go down if you want to see if your diet is affecting your Lichen Sclerosus and causing flare-ups.

Route One: Elimination Diet with an Expert

If your lifestyle permits, Erica highly recommends seeing a dietician/nutritionist. They can put you on an elimination diet to help identify trigger foods. Erica stresses the importance of working with a professional for elimination diets as they can be risky to do alone. First, when people do elimination diets alone, they often forgo the re-introduction phase. That is, they cut out foods, feel better, and never re-introduce those foods back into their diet. Accordingly, they can end up with more intolerances than they initially had and you run the risk of developing nutrient deficiencies.

Route Two: Journal your Diet with a Tracker

However, if seeing a dietician/nutritionist isn’t feasible financially, Erica recommends using a food journal.

I have a symptom tracker I created for LS warriors. It’s a downloadable Google Sheet, which you can completely customize to suit your needs. Get it here at lssupport.net/symptomtracker.

There are also a number of apps on the market for tracking food and symptoms. Recently, one of the members of the LS warriors found an app called Bearable. Browse through your app store and play around to find an app that suits your needs.

Of course, you can kick it totally old school and go paper and pen style! You do you! 

How Long Should You Document in your Food Journal?

Erica recommends as long as it takes to find important correlations. The length of time journaling depends on other factors in your life. For example, stress and sleep are big triggers for people’s Lichen Sclerosus. Thus, if you track for two weeks when it’s exam period, for example, the type of data your journal is giving you may not be accurate. Consequently, it might not be the food responsible for your symptoms, but your stress instead. Therefore, you want to track long enough where your sleep and stress levels are good so you are getting data isolated to food.

Image of journal for diet tracking.

Another important factor with respect to tracking and triggers is hormones and your menstrual cycle. For example, perhaps your Lichen Sclerosus flares the week before your period, but during this time you munch away on chocolate. Accordingly, try removing it and see what the data says. Indeed, you may see a reduction in symptoms and it might be food-related. Conversely, you may notice no difference, in which case your triggers might be more hormone-related. In sum, experiment to find what works for you.

An Important Side-Note

One of our ladies in the membership found that her Lichen Sclerosus is triggered by her cycle and in fact, I have heard this from many menstruators in my DMS. Therefore, you might consider customizing my tracker to include your menstrual cycle. As we learned with Dr. Jill Krapf, there is not a lot of research on people of reproductive age with vulvas, and, accordingly, we have to go out there and create our own research.

If you haven’t yet listened to that episode, check it out here lssupport.net/drjill

Low-Oxalate Diet

Briefly, there is little evidence supporting this diet and its ability to reduce inflammation and help with Lichen Sclerosus. The low-oxalate diet is recommended for people with kidney stones. Only one study mentions oxalates, but this study has yet to be replicated (and replicated is key when it comes to quality scientific research).

Therefore, if you suspect oxalates trigger your LS, you may want to work with a professional to craft a nutrition plan as this diet is really hard to manage on your own as it’s not obvious what the oxalate content is in food. Moreover, the oxalate levels in food vary depending on how they were processed.

Nightshades and Lichen Sclerosus

For the general population, Erica notes nightshades are not a problem. In fact, they are rich in antioxidants and help reduce inflammation. However, if you find them to be a trigger for you, then cut them out. Accordingly, all bodies are different and you may be part of a small group that has an inflammatory response to them.

What Should we be Eating?

While diet is highly subjective, there is a list of vitamins and minerals Erica suggests consuming for inflammation and healthy skin. These include:

  • Vitamins: A, B6, and B12 (fish, greens, meat), C (citrus, greens), E (antioxidant and can be immunosuppressive, found in nuts and seeds, and D (sunshine or supplements).
  • Minerals: zinc, folate, selenium, and omega-3 fatty acids.

Conclusion

In sum, just as Lichen Sclerosus is highly individualized, so is diet. What works for one person may not work for you. Thus, Erica advises working with a dietician/nutritionist or tracking your food in order to identify your own personal triggers. 

I am so grateful for this amazing conversation with Erica. If you want to reach out and talk to her, you can find her on Instagram @ericasappletite or email her at ericaeberl.dietitian@gmail.com.

Virtual Meetup Information

Did you learn anything new from this episode? Are you curious to delve deeper into the realm of nutrition and diet? Let me know! Email me at Kathy@lssupport.net or DM me at @lichensclerosuspodcast on Instagram.

Better yet, why don't you tell us at our Lichen Sclerosus Support Virtual Meetup!

We meet every other Saturday from 2-4 pm and/or 7-9 pm Eastern Standard Time. This is your opportunity to share your diagnosis story, what is working for you and what isn’t, and ask a question to the group. Perhaps share your experience with appointment anxiety! I have met so many incredibly strong LS warriors through these meetups, and I would love for you to join our community. 

Sign up at lssupport.net/connect for notifications and updates! Our next meetup is tomorrow, April 3rd. I cannot wait to meet you!

Exciting Announcements From LSSN You Do Not Want To Miss!

My girl over at The Lost Labia Chronicles just dropped her third blog post this Tuesday. If you haven’t read it yet, check it out here: https://lssupport.net/self-blame-facing-my-inner-demon/

In this post, Jaclyn discusses a critical aspect of mental health and Lichen Sclerosus.

Specifically, she delves into the topic of self-blame and proposes a three-phased approach to help work with these types of feelings.

Image for TLLC's latest blog: a woman boxing, metaphorically representing fighting her inner demon.

Furthermore, if you haven’t yet, be sure to subscribe to The Lost Labia Chronicles so you get all the juicy updates and notifications here: lssupport.net/jointllc 

Resources:


Symptom Tracker: lssupport.net/symptomtracker

By Jaclyn

I am the author of The Lost Labia Chronicles, a blog about Lichen Sclerosus, Sex, and Mental Health. I was diagnosed with Lichen Sclerosus in 2019 but had been symptomatic for over a decade. My mission is to provide support and hope to others with Lichen Sclerosus.

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