Published 2016: I update this post every year at the bottom of the post with the current status of the Hidradenitis Suppurativa, my hidradenitis suppurativa diet 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 was figuring out what is my hidradenitis suppurativa diet. 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.
How to reduce inflammation with food post here. About SIBO here.
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?
Autoimmune Paleo Protocol or AIP Keto is what got me in remission.
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!
- 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.
My Resources:
- 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
Other Resources:
- 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 for my hidradenitis suppurativa diet.
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!
After putting my own HS in remission with diet and lifestyle I got certified and an NTP to understand the how and why of it all. I has compiled all of my research, experience, and resources into one master class Holistic Hidradenitis Suppurativa. It is not just a course, but it’s YOUR journey to understand your body, your disease, your hidradenitis suppurativa diet and how to feel in control! At “Holistic HS” we understand the challenges you face on a daily basis. That’s why we’ve created a step-by-step program that addresses the root causes of HS, focusing on the powerful connection between gut health, diet, and inflammation. Our course combines scientific knowledge, practical strategies, and extensive resources to empower you on your journey toward long-term relief.
Elissa says
I suffered through HS a few years back – most painful thing I’ve experienced! I had my first flare-up so bad at one point on inner thighs/groin area (basically everywhere “down there”) that I could barely walk or even lay down to sleep! I had one in my armpit that had to be surgically drained. I was put on antibiotics & told it was incurable. I was devestated. I was advised to avoid nightshade veggies. I started working on lowering my stress levels, eating healthier & took probiotics. My body seemed to be doing better – I would have a single spot here and there but they would be gone within a week or two. Fast forward to after my daughter was around the age of 3. She was having trouble with eczema. I tried steroid creams, diet changes & every soap/lotion under the sun for her. Steroid creams helped some but I was searching for a more natural approach. I came across a lotion called TriDerma Eczema Fast Healing at Walmart of all places. Lol. Said it had patented aloe – read up on it & decided to give it a try. It worked like magic on her skin! It worked so well that the next time I started to get her another crazy painful flare-up on my inner thigh I started putting that lotion on that area. The pain that usually takes a week or 2 was gone overnight!!! By day 3 the spot was reduced to nothing but a purplish color & was flat!!! I was overjoyed!! My decision to try my daughter’s eczema cream on a whim has saved me from a lot of pain since then!!! My husband & brother both have trouble with painful boils – both have had success with this lotion as well! I don’t know why it works but it does! I use it 3 or 4 times a day as soon as I feel a spot coming on & like magic they disappear within a couple of days. Ahhhh! Just wanted to share in case my story can help anyone else with this horrible painful condition! & btw I eat fairly clean / mostly kinda wheat free lol but I don’t follow any crazy restrictive special diet anymore. Who knew an $8 lotion would be such a Godsend! I hope it helps others like it has helped me, my husband & brother.
Kissnaar says
AIP works very well. the triggers along with insulin trigger for HS are circumvented.
We have a new sub just for AIP and HS
https://www.reddit.com/r/HidradenitisAIP/
Cristina says
Thanks for sharing. Insulin levels also affect hormones. While just AIP works for many, it’s not a full proof method, everyone finds what works for them. Staying low carb is a big piece of the puzzle for me. I’ve found remission and that’s what I share my story.
Shannon Nickerson says
Hello everyone! I am a twenty-two year old young lady who used to suffer from HS for several years before I learned that it can be healed. Since I was twelve, I have struggled with hormone problems (irregular cycles eventually resulting in my having to have extremely large ovarian cysts removed surgically when I was twenty- the doctors were able to save both ovaries, thank God!). I have been interested in health and healthy diets since I was about twelve and discovered the Westn Price lifestyle around when I was fifteen. Consuming traditional foods, especially raw milk greatly contributed to more regular cycles, although my hormone problems never were quite resolved following this “diet.” All this to say, when I started developing HS, I knew it was diet and hormone related. I found that reducing the amount of fat I consumed, as well as following a “healing leaky gut” diet that was a little lower in fat helped considerably, but did not eliminate flare-ups. It was then that I started looking more seriously to find help for HS. Taking digestive bitters helped with my digestion of fats (and overall digestion), but when I discovered (from Dr. Axe) that HS and boils are linked with the staphylococcus bacteria, and that bentonite clay kills that bacteria, I knew I had to give it a try. (I first looked into how bentonite clay can help with mineral deficiencies and heavy metal detoxing-two other problems I had also been dealing with.) Ladies, ease consider adding bentonite clay to your life; after just the first dose (of about 1/2 to 1 teaspoon mixed into 1-2 cups of water just before I went to bed or as soon as I woke up), I could feel the inflamation going down. My HS very soon disappeared (after the first couple doses), and I have not had any problems with it since! I do continue to take BC once a day when I am able to. I have gone without taking it for several weeks to about a month and a half at a time to see if the HS would come back. It hasn’t. Now, I’m not guaranteeing that it will work for you, but I knew I had to share what has helped me in case it can help someone else. Please give it a try, and don’t hesitate to send me an email if you have more questions. May God bless you all!
Lindsay says
Please research the amount of lead levels found in Bentonite Clay. High levels of lead have been found in many common brands and should not be ingested. Stay safe!
Kathy Brautigam says
My 29 year old daughter has HS since age 13. We were excited to read your post. Please let me know what brand of benzonite clay that you use since levels of lead are of issue. We are excited to try this!!
Cristina says
I don’t use bentonite clay.
Mari Toni says
Hi thank you so much for the information on bentonite clay. Have you experienced any bad side effects from drinking this? Are you still clear from a flare up? What foods do you avoid?
Cristina says
It can cause some loose stools.
Yes, I’m still in remission.
I cover that on my blog, there are several blog posts, as well as in both my books.
Tara says
Hi Cristina! Thank you for your blog. I have had HS since 2012, diagnosed in 2014, two surgeries, 8 months each to heal from them. I did the aip to great success, however what knocked HS finally into remission for me was lowering my oxidative stress through nrf2 activation. Happy to tell you more about that, and anyone else for that matter! It changed my life in so many ways and have been in remission since November, and I’m even eating some of my ‘trigger’ foods. I realize that HS is tricky and that what works for one, might not work for all, but if I can help just one person with HS, that would be enough for me. I wish everyone the best of luck on their journey XO Tara
Deborah Henry says
I’ve had surgery under my breast and cut on between my thighs . The pain ,flare-ups are extreme. I need surgery to loose weight the Drs say. I try to loose weight and I gain it. I cry and suffer. I have a go fund me page . Amt.is zero. Dr. Advised me to try it. I have no insurance. I haven’t worked in 2 years . I had to have bone spur surgery and another surgery where a surgeon I found several years ago whom has cut chuncks of flesh off me and multiple Lance’s of my skin. I haven’t family. I feel . You can imagine.
Cristina says
That is a terribly difficult situation. My heart goes out to you.
Tammy says
Thank you for your post on HS, it really helps to learn that I’m not alone in dealing with all of this mess! I just started the AIP diet in hopes that it heals my HS symptoms. About how long did it take you to notice results? Thank you!
Cristina says
big hugs tammy!
Kari says
The gratitude I have for you after reading this post is immeasurable! I have been following you for a few years on IG.
I never knew you dealt with this condition. I just happened to stumble across this article.
I have dealt with this issue for years with no help from physicians. I have never received a diagnosis of HS, the only advice I was given was to bathe daily and that these infections were caused by clogged pores. I began exfoliating the affected areas on a daily basis. I tried pore strips. I tried anything I could think of to unclog my pores thinking this was the problem. All of my efforts made the condition WORSE! I soon began to feel helpless, embarrassed and ashamed.
I started following a diet of less than 20 grams of carbs per day, moderate protein and higher in fats two years ago. This helped immensely. Many of my scars are healed and barely visible. However I have noticed very minor flares in the past couple of months. After reading this article, I will be eliminating foods to hopefully identify my triggers.
My only concern is the elimination of nuts and seeds as I have been seed cycling for just over a year now. I don’t want to have to stop that as I feel my hormones are much more balanced.
Nevertheless, I am in tears. Happy, joyful, grateful tears!
Cristina says
Hugs Kari!!!
ECDC says
How can low-income people with HS afford to eat an Autoimmune Paleo Protocol diet?
How much does an Autoimmune Paleo Protocol cost on a monthly basis?
Cristina says
Eating AIP only takes eating plants and animals. Keep it simple. A lot of packaged foods cost more… and in the long run they definitely do. You can buy frozen vegetables if they are cheaper. You can get meat cuts that are on sale. Costco has really good deals on avocado and coconut oil. It can be done. There is a great support group on facebook: HS DIET Connection
Helen says
I am 65 years old and suffered silently with this condition since puberty. I sought medical advice when the abcesses were just too painful to manage myself. I have always struggled with my weight but never made the connection. Often blamed flare ups on my very stressful career, not realising it was probably the sugary foods and alcohol I was consuming.
I feel such relief reading your article. I am going to tackle my diet and eliminate processed food, sugar, alcohol . It will be tough cause it involves all the food I love!
Thank you , i feel like i hsve some answers now.
Cristina says
hugs Helen!
Lisannette says
Hi Christina, I’m so thankful for your blog! Thank you for sharing so much. <3
I just started the AIP diet after being dairy free for 8 months and seeing a drastic reduction in flare ups. One week in I had the Worst flare up (one like i haven't had since i quit dairy), and two weeks in, i have another cyst forming. i'm really holding out hope that this is going to help me figure out other triggers, and send me into remission. Did you experience it getting worse before it got better? Thanks <3
Cristina says
IT takes time and yes there are periods of Healing Crisis where you flare or otherwise feel like you’r going back. Stay the course! It works!
Lisannette says
Thank you for responding. I’d never heard of a Healing Crisis before. It really helped me figure things out. <3
Rajesh says
Hi Lisannette, I have been following the AIP diet to tackle my HS for the past three weeks. During the first two weeks, i felt really better but this week, i have been getting flare ups in different places even though i have been very strict in following my AIP diet.
I think this could be my healing crisis. Wondering how did you go since your last reply please? Thanks
Cindy says
Hihi Cristina thank you for your story. Is shaving a trigger for you? Ive had hs since i was 9 and im now 26. I found out aBout this a year and a half ago and im still adjusting. Ive only cut out gluten but after reading your story im going all the way! im just so afraid to shave anywhere but i really want to. Im so inspired to be here with all these people like me. I feel like everyone understands im crying. THank you.
Cristina says
Shaving is only a trigger if I do it too often, especially in the bikini area
Sarah says
Thank you for your openness about this! I am literally finding out about HS today…although I’ve suffered since puberty (I’m 42 now). I have Hashimoto’s and have been eating whole30 then modified AIP since January. OVer-all I feel great, but what I now Know as my HS is flaring up big time. Thank you for being so willing to share about this- I suffered in silence for so many years with no hope of this getting better. I still don’t know if I’ve eaten something that is causing flare or this is my body in the healing process but now I know there is hope. Thank you!
Cristina says
There is always hope! Hugs Sarah!
Alison says
I just want you to know that you are such an inspiration to all of us and I can’t thank you enough. Although we shouldn’t be embarrassed by this disease, it is really hard not to be. Thank you for your creative talent to bring fresh food and yummy recipes to life for those of us who truly need to eat whole foods. Also, I friggin’ love your sense of humor and spin on things to do with our bodies and how they process.
So glad I found your blogs.
Cristina says
Thank you Alison! xxoo
Giuliana says
Thank you so much for this post. I have had HS since I was 12 and now that I am 22 it is still a struggle to deal with…Especially during the summer. I had a major flare up last night probably due to eggplant parm! It is so so good to know that I am not alone. Thank you Thank you Thank you! I am going to try whole30!
Cristina says
Hugs girl! You can do it!
tammy says
cristina
this is all really overwhelming for me im a HS sufferer and have just recently had surgey however all came back. can you help with some advice to start off with healing?
any help would be great thank you
Cristina says
Hi Tammy, Sorry to hear that.
If you haven’t already you need to cut out all inflammatory foods. Gluten, dairy, sugar, nightshades. A lot of us with HS see improvement, with the autoimmune protocol or a modified keto diet. I have an AIP Keto reset on the blog with a 2 week meal plan if you need specifics!
I can seem daunting at first, but it works!
Lizbet says
at age 47 i finally got the answer to this chronic condition that has AFFLICTED me since puberty. diagnosis…HIDRADENITIS SUPPURATIVA in reading your story cristina, and all the SUBSEQUENT comments i was actually brought to tears. the candid images of your inner thigh moved me it’s as if i am looking at my own scars. i can’t believe i am not the only person on the planet suffering in silence keeping my secret. i too have been misdiagnosed by medical PROFESSIONALS “wash with iodine soap”…i was even told it was a case of mrsa and put on high DOSES of antibiotics…intimacy is always a challenge and certainly only in the dark…shorts and summer another painful time to try and hide scars or flair ups…i only wish i knew sooner that this is a condition that is MANAGEABLE through diet. through the years my weight and diet have FLUCTUATED due to pregnancies and hormonal IMBALANCES and i did notice flairups CORRELATED with my diet but i never took the time to pin point the actual triggers. your information is so valuable and i am so GRATEFUL that i stumbled across this in my search for hs. I have done keto with SUCCESS but never knew about night shades, dairy issues, or ANTI-INFLAMMATORY diet. pandora’s box has open and i am hungry to learn more and make some noise about hs hopefully educating myself so i can help others the way you have helped me and so many others…you are beautiful and i thank you from the bottom of my heart for sharing your story. happy ending…my favorite!!!
Cristina says
Lizbet! sending you so much love! I’m here to help! xo