Published 2016: I update this post every year at the bottom of the post with the current status of the Hidradenitis Suppurativa and my health!
As of late, I have been contemplating a lot about where I am. The last six months have been some of the most testings of my life. I have made enormous lifestyle changes. I have seen a lot of success, at times, and others were painfully frustrating- filled with relapses, flares, and standstills. Being a part of the online Autoimmune Paleo community has been one of my biggest comforts. Although, I don’t see my disease well represented in it- I know the reason… We, all of us who suffer from Hidradenitis Suppurativa, suffer in silence. I use the word suffer knowingly. There is no living with HS, there is, often, only pain.
What Is Hidradenitis Suppurativa?
Hidradenitis Suppurativa is a chronic, debilitating skin condition where your body is riddled with boils, abscesses, wounds, or scars. It often starts as a lump or a pimple in your groin or underarm and usually gets worse & worse, leaving a lot of people handicapped. It can affect one to several areas of your body. While our faces might glow, and people say… but your skin looks great! Underneath our clothes, there is a war going on! To learn the science behind HS check out my Hidradenitis Suppurativa Survival Guide.
HS affects delicate areas, and as such, makes it really hard for people to talk about. Only in threads, in closed groups, do people often feel comfortable to commiserate of the painful boils surrounding their genitals, breasts, underarms, and groin. I get it. People who have known me my whole life do not know what I have suffered. Hiding my scars became an art, coming up with excuses for wincing when I sat down or walked. Always changing away from others. Shorts at the beach. Band-aids, everywhere. Lights out during sex. Pants in the summer.
Honestly, the only reason I think I can be so open about it now is that I have it under control. As I write this my skin is clear… of boils that is. Still riddled with scars, but healthy, not swollen or red or painful. Dark spots mark where they used to be. Healthy, for the first time since I can remember. How, why? Paleo. Autoimmune Paleo. Whole30. FOOD.
It’s been a long journey; I’ve had to examine my resolve many times. I’ve had to begrudgingly give up foods I was clinging to. Many tears have been shed, especially when my skin flares. But I’ll tell you… what I now call a flare-up is a regular-sized pimple that lasts no more than a day or an old scar swelling that also lasts no more than a day. No more are the days of multiple boils, which drain and swell over weeks and months. I’m still fine-tuning my diet. I often yell to the skies, why me? Why do I have to give up so much?… but then again it’s worth it. Will I ever eat a hot dog at a ball game or order pizza with my kid?… no.
I WILL be happy, healthy & not in pain. My scars will fade, and along with them, the emotional scars too.
What I’ve learned….
Hidradenitis Suppurativa is an auto-inflammatory/ autoimmune disease. The root of the cause is inflammation. This inflammation can be caused by a leaky gut, an inflammatory diet, poor digestion, and an impaired ability of the body to detox properly (root causes vary). Hormones can also affect HS, and blood sugar dysregulation can drive hormone imbalance.
To get your hidradenitis suppurativa in remission you need to heal your leaky gut and reduce inflammation. Work on managing stress, proper digestion, and keeping your blood sugar stable. To heal your leaky gut you need to find your trigger foods & stay on an anti-inflammatory diet until you see progress (less, no, or shorter flare-ups).
What diet Helped my Hidradenitis Suppurativa?
What does that mean? NO: grains, dairy, legumes, nuts, seeds, processed foods of any kind, chocolate, coffee, nightshades (pepper, eggplant, potatoes, tomatoes) & eggs.
- YES: Lots of vegetables, organ meat, seafood, pastured animal proteins, fruits, coconut (will be your BFF), coconut aminos (are a lifesaver), tallow, lard, coconut oil, olive oil, bone broth.
- NO: to processed foods, lots of starch or sweeteners
- YES: to healthy fats, lots of quality protein, and real salt.
Switch to a non-toxic lifestyle to improve symptoms of Hidradenitis Suppurativa:
- Yes to holistic topical care strategies and non-toxic living! Learn more here.
- Once you begin to feel better you can start adding in foods little by little. Keep a journal. Write down everything. Read. Read a lot. Shop. Plan. Batch cook. Join the community.
- Conquering Inflammation
- Guide to the Autoimmune Protocol
- What are Nightshades?
- Try my AIP KETO Reset as a 15-30 day elimination protocol to balance blood sugar and reduce inflammation.
- Starter Guide for AIP Keto
- Importance of Fatty Acid Balance for Managing Inflammation
- Holistic Hidradenitis Suppurativa Course
- The Paleo Mom, blog: thepaleomom.com, books: The Paleo Approach, The Healing Kitchen
- Autoimmune-Paleo.com, related books: Mickey Trescot’s The Autoimmune Paleo Cookbook
- The Phoenix Helix, Eileen Laird, awesome podcast, articles, and just a constant stream of information.
- Go on Instagram, search #AIP #autoimminepaleo #autoimmuneprotocol, and reach out to me @thecastawaykitchen.com
- Whole30’s are a great way to get in gear. If you’re worried about going full AIP, do a Whole30 first, and start eliminating inflammatory foods little by little. Before you know it, you’ll be crushing your elimination phase.
- Get my cookbooks!
Lastly, talk about it. Reach out. You don’t have to do it alone.
My personal AIP Journey in a Nutshell
I lived with HS for 18 years. Stage 2 + 3 in 4 areas of my body for most of my life until I was 30 years old. That was when I finally said enough.
My elimination phase was a little wonky. I read The Hidden Plague by Tara Grant. She has HS, she put it in remission, it was a good read that outlines an altered AIP diet. I think AIP diets vary per individual. It still helped, but in the end, after keeping coffee, almonds & cashews in my diet in the beginning I took all nuts and seeds out for a while. I read The Paleo Approach, read all the blogs… went back to the basics. AIP Elimination phase has to be militant… temporary, but militant! 6 weeks later, I started adding foods back in. Not going to lie… I started with wine… then eggs! After 4 months of reintroducing and testing foods, I found my trigger foods.
I can’t do nightshades or gluten at all! Lactose is also a trigger. Very starchy vegetables like yuca as well. Nuts and seeds are fine in limited amounts. Eggs are perfectly safe (win!). No sugar. I’m very sensitive to sweets, even honey, and maple syrup. Little sleep/lots of stress are major inflammation triggers. I can do small amounts of wine or tequila, but not often. I stick to quality protein, salmon, oysters, red meat, lots of green veggies, bone broth, lots of water, and dark chocolate 🙂
- Updated #1 (October 2016): I have found that guar gum and xantham gum make me flare, it starts with a migraine.. If I keep consuming it, my HS will then flare. Since I wrote this I have done a few more Whole30’s. I can eat most nuts and seeds too. I can eat rice without flaring but usually, don’t. I can eat some cheeses (lactose-free). Still no nightshades. Alcohol and I don’t get along. I have started working out, a lot. Spinning, HIIT training, and weightlifting. Things have only gotten better and my scars are actually fading! My body is really changing. I feel really strong and capable of anything.
- Update #2 (August 2017): Still thankful for the miracle that is the AIP and the dedication I have had. Almost 3 years paleo! Nightshades and stress are my biggest triggers. I have also started working on balancing my hormones and am seeing great results! I am doing a combination of keto (low carb/no sugar) and paleo (no grains or dairy) and I feel really good! My scars continue to fade and my body keeps changing. It’s so much stronger and leaner than it was before. It’s been an amazing journey and I’m not done yet!
- Update# 3 (December 2018): I had 2 flares in the last year due to ingesting nightshades, but in remission otherwise. After being fat-adapted for over a year, and starting my NTA training, I have begun to use strategic supplements like digestive enzymes. Nothing crazy. The benefit is that I have been able to add some foods back into my diet. I still do a super clean, low-carb paleo without nightshades and have no plans of stopping.
- Update #4 (April 2019): I have had no more flares and even though I might have ingested nightshades on one or two occasions. Remedying my low stomach acid and lingering lower GI issues (SIBO) has been great. Taking omega3 and really honing in on nutrient density these days. I feel the best I ever have! My inflammation is gone and my HS hasn’t shown any signs. I am doing Orange Theory Fitness, I feel like my body is much more resilient! Happy Day!
- Update #5 (June 2020): I’ve had 2 flares in the last year, one was pretty bad the other went away in 48 hours. These came on due to the combination of VERY HIGH STRESS and the ingestion of a trigger food (nightshades). While I’m glad that once the flare was over, I was back in remission, I did take antibiotics for one because I developed cellulitis- but then reacted to the antibiotics. Fall 2019 to Summer 2020 has been a very hard year. From launching my second book during a pandemic to my husband deploying. However despite all the drama of my life, and high stress, my body has been pretty resilient. I have eaten tomatoes once or twice without consequence. Dairy seems to be okay these days. At the moment I’m in remission and feeling good. But the last year has shown me that HS is forever, and it will always take lifestyle and diet to keep it in check.
- Update #6 (February 2021): My HS hasn’t flared again, but overall the insane year caused some overall inflammation issues. I’m currently back on a short AIP reset. Leading a group in March through my coaching program Better Together. Feeling good again and really happy for life to go back to normal *hopeully* soon.
- Update #7 (October 2021): HS and inflammation overall is really good, and very low. I have tattoos over my scars with success. Feeling really good. I’ve added a lot of foods to my diet like chickpeas, brown rice, and limited amounts of cheese without reaction.
- Update #8 (September 2022): We moved back to Hawai’i in January and 5 months later Justin and I split up (after 13 yrs together). While it’s been amicable, it has been really stressful, divorce is never easy with kids involved. In the Spring my gut was in REALLY good health, no inflammation and I was able to add potatoes back into my diet and some other nightshades in moderation. Then I got Covid, followed by Strep. In the month that followed, I had 2 flares. Nothing that bad or that lasted too long, but enough that I cleaned up my diet and leaned into self care. Definitely, a reminder that HS is forever and takes constant work to stay in remission. Getting sick, taking antibiotics, stress – all these things impact that. But I’m okay!