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.
Gen says
I’ve had HS since I was maybe 8 or 9. I remember having to skip gym class due to the excruciating pain between my thighs. I went so far as to even have all the hair laser removed in that area as I thought that the hair might have been the culprit. I’ve changed my diet many times in the past and have picked up on interesting things. When I removed certain foods from my diet, my condition reversed for the better. A Dramatic and complete disappearance. HOwever, Within the first 24hrs after eating some not-so-good foods like fruity candy(dark chocolate was fine!) or crackers, cakes etc… BOOM they came back in packs.
Cristina says
Yes unfortunately remission is contingent on eating this way for the long haul. Glad you found what works for you.
Michelle says
I recently started the Paleo diet and assumed,Ike you said, my worsening flair are a result of toxins leaving my body…through further research, I am now thinking it’s necessary to go even more strict and cut out the non aip foods. Looking forward to the benefit, but concerned about how time consuming the planning and prepping eating aip, and paleo will be. I’m committed to it, but really not wanting to give up coffee. Have you determined if coffee is a trigger for you? Heard others that have been able to drink it?
Cristina says
Coffee isn’t a trigger for me. Leave it in at first… give up nightshades and nuts for sure. See how that goes. Hang in there!
Stephanie Thompson says
I never had a name before today. It makes me relieved to know there are others out there that suffer with the same thing as me. I have had this disease since I was 12. As soon as my hormones started for puberty. I was never obese or overweight then. Then after I had my twin girls at 25 everything got horribly worse. In the beginning I would only get one at a time every few months, then after my girls I would get up to 15 at once. Clusters of 3-4 in my groin, butt, but crack, inner thighs, armpitts. I would never get full on boils on my boobs but they would get deep painful lumps and hurt so much that I had to stop wearing bras 4 yrs ago. and my boobs are very small. Barely a size b.
Currently I am 40.7 BMI, I usually have at least 4 wounds open at a time, I have high blood pressure, i am only 33 and i am 5′ 3″ and weigh 230lbs. I am constantly battling depression because its seemed like no matter what i do i cant lose weight or stop them.
Cristina says
Oh, Stephanie, my heart hurts for you. I have been where you are!!! I was there. 275lb post partum with boils all over my body. You can change your life. Know that you CAN, you have the POWER!!!
Christina says
i HAVE BEEN FOLLOWING YOU FOR MONTHS AND ABSOLUTELY LOVE YOUR RECIPES AND YOUR SPIRIT BUT I HAD NEVER REALLY READ ABOUT YOUR STRUGGLE. after READING THIS I HAD NO IDEA WHAT I HAVE BEEN SUFFERING WITH FOR 42 YEARS IS HS! I HAD MY FIRST FLARE AT ABOUT 11 WHICH RESULTED IN SURGERY TO REMOVE THEM (STILL DON’T KNOW WHY THEY THOUGHT THAT WAS A GOOD IDEA) YERS OF PAIN AND NOW I CAN’T STOP READING ABOUT IT. I HAVE BEEN ATTEMPTING PALEO/WHOLE30 FOR ABOUT A YEAR BUT ALWAYS SEEM TO FALL BACK INTO OLD HABITS…NO MORE. I’M JUMPING INTO AIP TOMORROW FIRST THING. MY 18YR OLD SUFFERS FROM THIS AS WELL AS GUTTATE PSORIASIS SO I’M GOING TO MAKE HER FOLLOW THIS WITH ME AND HOPEFULLY IT WILL HELP BOTH OF US. I’M DREADING GIVING UP COFFEE BUT I’VE THOUGHT ABOUT TRYING MATCHA….CAN WE HAVE MATCHA ON AIP??
THANK YOU SO MUCH FOR YOUR BLOG! ORDERING YOUR NEW BOOK TODAY TOO SO I CAN HAVE YOUR GREAT RECIPES AT MY FINGERTIPS.
(I HAVE NO IDEA WHY THIS IS IN ALL CAPS, IT WON’T LET ME TYPE ANY OTHER WAY)
Cristina says
Oh my gosh Christina!!!! It is sooo common for ppl to go undiagnosed with this. I am so happy you found my page. And YESSSS its going to change your life! And yess you can have matcha! Whoot whoot!!!!
Rubi Ambrosio-Tully says
Hi. I’ve been strictly on the aip diet for almost 6 weeks now, and my skin has absolutely erupted with flares. …i’m at the worst I’ve ever been. I don’t know why. I know I I not eating enough, and am losing a lot of weight… but I’m getting discouraged. I don’t know what to do.
Cristina says
Rubi that happens… with HS there is a lot of detox effect. It gets worse before it gets better. Try adding some healthy fats to your diet like avocado so you’re not loosing so much weight. Hang in there! It gets better, I promise!!!!
Try rubbing tea tree oil in a little coconut oil on affected areas to help with flares. Take magnesium. GEt plenty of sleep. Please let me know in a few weeks how you’re doing.
Monica Fernandez says
Thank you so much! I had no idea what to do last night, i just cleaned it. I went to a natural nutritional doctor 3 days ago. the diet he gave me is very Similar to what i have been reading aBout Aip. But he gave me nuts except peanuts and cashews. He said i can also eat eggs but from Reading your information here and the book ‘your Personal Paleo code’ i should not eat egGs? Im also not sure if i should have onions?
Cristina says
Follow your docs orders! Give it at least 3 mos. If you don’t see improvement then omit eggs or other things. If you’re going to try something, try it fully before deciding if you need to tweak it!
Monica Fernandez says
I CURRENTLY have a boil and started draining today. Im not sure what to do with it? How Do i take care of it and the draining?
Last year i went to the er for This, they opened it up and drained it, it was an aWful experienCe. I started seArching last weEk about this and found out about the pAlEo diet and started on it IMmediately. I cant wait to see results. How lOng has it Taken For you to reVerse The hidrodenitis suppuratiVa?
Cristina says
Take a warm shower and try and push down around it to drain it completely, this might hurt a lot. But then clean the wound and put a bandaid on it until it closes up. It varies from person to person how quick or slow they heal. But hang in there!
Amanda says
Hi cristina, Do you ResponD to questions and advice via emaIl? I could really use some advice, the hidden plaque will arrive tuesday. But im cureently in so mich pain, i could really utilize some insight. Thanks so much.
Cristina says
yes, email me castawaykitchen@gmail.com
Rebecca Kramer says
Thank you for all this information. My son who is 13 years old was just recently diagnosed with HS and he is having a really bad outbreak right now. he has it under his arms,in his groin, on his neck, on his back and his chest. First he was diagnosed with nodular acne and we’re treating it as such. Finally we have a diagnosis and we can start working at figuring out what triggers is outbreaks. as a Mom it is so hard to watch my son go through this pain and agony. I want to do whatever I can to help him figure out what is triggering this condition. We just started the Elimination Diet on Wednesday and we are hoping to see some improvement so we can try to figure out a trigger foods like you had said. I know it’s not going to be easy because of 13 year old boy doesn’t want to go on a special diet but he is willing and says he’s committed to trying to figure out what’s going on with his body so he doesn’t have to live like this the rest of his life. I will be visiting your site often TO Hopefully find some more information and some encouragement. Is heartbreaking for me to watch him go through this and feel helpless. I wish I could take it away from him and put it on me instead.
Cristina says
So tough mama, but I wish I knew this when I was 13 instead of living 17 years with this disease totally out of control. Just being informed will help him so much!
tony says
ASking for my wife…she plans on cutting all gluten and nightshades tonight. just recently found out what this was. about how long until the flare ups start going down? Week? month? More?
Cristina says
Hi Tony it’s different for everyone. There is no telling… she might see some improvement in a month or a few months… full remission can take time. Is she doing the autoimmune protocol or just cutting out gluten and nightshades? She might as well cut out dairy and sugar too – common triggers.
tony says
She already cut out dairy due to our baby having an intolerance and it did nothing. she just started with gluten and nightshades and so far she feels better though still a long way to go. we are not sure which it is (hoping it is not both and she would rather go gluten free since we are from south louisiana and everything is cooked with pepper spices! plus she is a dr pepper fan). she will add things slowly in a few weeks.
Cristina says
A few weeks might not be enough time. You have to be patient. I know it’s hard, especially with a new baby… but you know, the only way to really find out triggers is to eliminate all possibilites, then add them in one at a time, after symptoms have subsided or improved. See which causes a flare up. There is a great support group on facebook HS diet connection <3
mICHELE says
OMIGOD! i NEVER HAD A NAME FOR THE HORROR I HAVE EXPERIENCED. i WAS TOLD ONCE BY A GYNECOLOGIST TO “USE SOAP” (!!!). i FOUND YOUR BLOG BECAUSE i AM KETO AND SOMEONE RECOMMENDED YOUR COOKIES (BEST DAMN KETO COOKIES I HAVE HAD!) i ALMOST CHOKED READING “I know the perfect cookie is hard to come by. So when I tell you that THIS IS IT. I am not fucking around.” ha! nOT THE NORM IN THE KETO BLOGVERSE 🙂 :d aNYWAY, THANKS FOR SHARING-THE RECIPE AND YOUR STORY!. i’VE GOT A TERM TO GOOGLE NOW. i AM MOSTLY HEALED BEING STRICT KETO, ALTHOUGH, I SHOULD PROBABLY TRY DAIRY FREE AGAIN. tHANK YOU, THANK YOU, THANK YOU!
Cristina says
Oh girl soooo glad you found me! Happy to help! and haha yeah I don’t have a filter! Glad you love the cookies! LMK if you need any help!
Cinzia says
Wow thank you so much for sharing your story and being so organic and HonesT because thats not easy to share. I am now 4 months fully vegan and 70% raw with ocassionak cooked or steamed foods and i have seen a tremdous difference! I had to suck it up knowing i Was going to miss my seafood and chicken & Waffles , i know i had to say enough was enough and change my eatIng to no longer suffer. i cry wheN i get asked To share my stOry because it’s still so sensitive to me . I am so happy to be able to find amazing inspiring individuals like your self. Thank you for creatIng positive safe Space to connect and help one another Battle this disease!!!
We Got this !! Let’S REVERSE THIS SUCKER!!!!
Cristina says
Amazinggggg!!!! way to go Cinzia!!!! <3 <3 <3
Ebonee Green says
Thank you so much. I have had HS since I was 12. I was dubious but started AIP in March, and it has saved my life. I occasionally get a flare or two, but these are little zits, not the interconnected killers that ooze for days. I came to your site looking for inspiration because I miss my old food…BUT. I do not miss feeling horrible boils on my bum.
Cristina says
Ebonee!! So amazing that your body has healed!!! You got this!!
MIchelle says
Thank you for sharing! Ive been struggling with this for Many years…and even tHe dermatologist had little to offer. im pale skinned, so it looks terrible! Im recently divorced, so even more self conscious about it now that i want to get back out there.
Cristina says
<3 dermatologist usually arent much help unfortunately!
lisa says
Thank you thank you! I have been dealing with this since i was 13 (puberty). ive been in denial that this is food related as i am a huge foodie. i have significantly cut back on processed foods and my flare ups are now reduced to a few times a year.
i really appreciate all the advice and want to try eating paleo and stay away from dairy as much as possible.
Cristina says
Here if you need anything!
Cristina says
Thank you Fanny!