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.
Linda ONeal says
So happy to have found you!! Just started whole 30, lots of chronic pain, MS, Fibro, degenerative everything disease, acne rosacea (im 67) as well as HS. Wow, I did not realize it was autoimmune, but makes sense. Just got on a course of antiobiotics, had to go to urgent care and get a very large boil lanced under my breast. Dont get as many as I used to, but excited to know changing my diet will help. THANK YOU, I appreciate your sharing, God bless you in this journey of life
Cristina Curp, FNTP says
Way to go!
LaShaundra says
Your story is truly an inspiration! It has given me meaning to my own story and silent struggles. You definitely taught me some things about HS and living with that I was not aware of. I’ve been living with it for 13 years.
Erika Sandy says
I am tore completely apart. Going thru a very toxic abusive separation and finally able to leave but I’m scraping to keep a roof over my and my 9 yr old son who is autistic. I have dealt with HS for years but it never got like this. It’s all in private area inner thigh.. bikini areas and butt area completely. I am waiting for insurance. Is there any products I can purchase that aren’t expensive that will help some. I stay exhausted and most days I wake feeling like someone has beaten me I’m so sore in my muscles. I have an appointment but I made it for another month hoping I will have my insurance by then. Anything u can help with I would appreciate. U are amazing to share all you have and I wish I could afford to purchase ur guides and course. And wish I lived close to have you help me.
Cristina Curp, FNTP says
Erika, sorry you’re dealing with all of that. My website is full of free resources, like all of the recipes, and also my HS survival guide that is free, and my AIP guide, the How to Conquer inflammation post and more. Wish you all the best!
Amy says
I’ve been making your flourless avocado brownies for awhile now (the best brownies ever!), and I just dug deeper into your blog and discovered you also have HS. I have had HS on my groin since I was 12 years old (22 y/o now). It has been painful and embarrassing as many of you know. I was on a vegan diet for four years and then swung into a carnivore diet from Jan 2021-August 2021. The carnivore diet was a great way to reset and detox, but for me, I did not want to just eat meat for the rest of my life. Once I started reintroducing foods, my flare ups stopped. Over the past 5 months, I have had a few instances when my #1 main flare up spot would get inflamed for a day or two but it never resulted in drainage. I’ve been going through these comments and read that you and some others experience inflammation after shaving. I shaved my bikini area two days ago and by the evening, I could tell I was about to have another flare up, and lo and behold, the flare up is here. How interesting that a quick shave can irritate it so much. Do you have to completely avoid shaving?
It is so freeing when you don’t have a painful flare up, and it can be so debitliting when you do have one. It is so comforting to know that there are other people out there like me. I will see if this flare up goes away but if it continues I might have to get back on another elimination diet to get to the root cause! or maybe just avoid shaving!
CH says
Thank you for sharing your story. I believe I have HS (all the classic symptoms and looks like I’m in stage 2, in my 40’s now but it started with just one blemish when I was 19 and has gotten worse over the years). My Drs refuse to diagnose me and say it’s folliculitis even though I have all the classic symptoms of HS (double headed boils, scarring and tracks/tunnels etc).
I keep hearing that keto diets do not come out well in long term studies which has put me off, as has the lack of nutrients and fibre which help heal gut health (how can you make sure all recommended nutrients are consumed?). But I am open minded and shall read more of your blog as I think patients often have such a depth of knowledge that even some Drs don’t have (I also have hypothyroid and in the UK Drs are woefully uniformed on this issue). I find it so hard to navigate various approaches as I have several autoimmune disorders and Drs in the have no interest in a holistic approach.
The one research study demonstrating remission of HS for all patients was when yeast was removed from the diet of 12 (too small a sample to be hard evidence) participants all 12 had a remission of HS. Could it be that no yeast in your diet is the root of HS clear up? Just curious to know. if that could be a link. Though if you are not consciously avoiding yeast I assume you would be consuming it in one form or another as it is in so many things.
Thank you for sharing your story and giving hope to those of us with several chronic autoimmune disorders. It is a real headache trying to find out which approach will be for the best in the long term.
I hope your continue to thrive and make choices that are best for your body.
Melanie says
Would like a copy of your ebook
Cristina Curp, FNTP says
go to my homepage there’s a link to download it
barbie b. says
Im just at the beginning of my AIP diet…
just started my research, building food lists, gathering recipes
I don’t have HS, I believe I have sjogren’s syndrome.. I’m in a very depressed state atm but I am looking forward to cleaning my body & hoping to see some progress. I love your enthusiasm. zit helps.
So kinda random but I was wondering about your scars , I have quite a few that I want to try & cover with a few tats 🤩 🤩🤩 hoping I am able to…I know it’s challenging sometimes.
Amber says
Sorry if I missed this but how long after starting AIP did you stop having draining and flares in your stage 3 areas? And then how long after that did you reach full remission?
Did you wait until you were fully healed to add things back or did you just wait for stability in symptoms?
Cristina Curp, FNTP says
Everyone is different… So you can’t really compare my journey to your own, but it took 4 months to see improvement and a year to see remission.
Amber says
Thank you! I appreciate your answering, it helps me to know to stick to it and be patient.
Kathi Beer says
If you get tired of making everything from scratch Jovial Foods.com has Cassava flour pasta and other products that you can cook and eat. Also read their info on Einkorn. I was in the hospital once for 4 days because of wheat. Einkorn wheat is grown on small farms in Tuscany and has Very Little gluten. Commercial wheat has been messed up by greedy corporations. Hope this helps.
Pat Smith says
Hey, as you said you and alcohol do not get along in your 2016 update, I was wondering if you have consumed alcohol since then and what was the results of this? I have had HS since I was 14 and am now 22, it’s only in the last 2 years that alcohol has caused me to flare up (and it’s badly) but it never did before, I wonder if it is just making the current infection worse or it it is genuinely is a trigger, or if it is just certain alcohol that does this.
Cristina says
Hey Pat, I can have a little alcohol and it’s okay. But I do think that it can still be a trigger. If I do drink I stick to vodka or tequila. I can do a little white or red wine. Anything with yeast is a no, like beer, which also has gluten. Sugary drinks are a no go either. Everyone is different though.
Raven says
Hell yeah ! Who knew a diet would help, dermatologist definitely don’t have anything to offer. There’s been times I thought I would just have to get my whole inner thigh cut open, absolutely no joke! I’m glad there’s others. Thank you so much for the advice !
Cristina says
I hear ya Raven!
Joanna Redd says
Hi. What are nightshades?
Cristina says
https://thecastawaykitchen.com/all-about-nightshades/#:~:text=Nightshades%20Are%20Plants%20Belong%20to%20the%20Solanaceae%20Family&text=Yup%2C%20nutrient%2Ddense%20vegetables%20like,%2C%20oxalates%2C%20phytic%20acid).
Phoebe says
I am thankful to have found this post I’m on a similar journey. I am looking for other people to have an accountability buddy to get through this crazy HS journey. I will poke around some of the links you shared. I too have read The Hidden Plague. It helped however I haven’t been able to get into remission for several months-a year. Thanks for the inspiration.
Doug says
How about Doctor Steven R Gundry
Cristina says
I’m not a fan. But a lot of ppl like his approach.
Jasmine Hope says
Thank you for sharing!! I’m sure you know the depths of what it means!!!
Cristina says
hugs!
Naajiyah says
Hey Cristina,
Your article gave me hope, i have been having this since I was 8 years old. It got worst around my period. I normalized this all my life. I will get huge boils around ovulation and 2 days before my period. Lately with all the covid stress etc its been flaring like crazy that I had to go to emergency to get one drained in June. And i currently have 5 under my left boob! Its fkig crazy. I am so happy you shared your story throughout the years and how cutting certain foods helped.
You said egg was ok no?
I started this journey and i hope i will get releif soon. Its really hard though as i am such a big foodie. Hahaha but hey i can have foie mousse for a snack, yes!!
I’m 32 now and hoping those hideous scars will go away and the boils will stop.
Thank you for taking the time to share your story, gives your tips, etc
Xoxox
Cristina says
Hugs Naajiyah! It’s so hard! But yes, diet helps. Eggs are okay for me, but it’s different for everyone.
Christina says
Do you know anyone that has tried laser hair removal? Thoughts?
Cristina says
My best friend has, but not from just a laser hair removal place- from her Dermatologist Doctor and said it was helpful.
Adria says
I had laser hair removal done at Hopkins under both arms and it helped for a while. However, ten years later and the HS is back. Unfortunately this condition manifests differently in everyone.
Cristina Curp, FNTP says
Bio-individuality is key, but if we understand the pathology of the disease, we know that inflammation is at the root.