My Hidradenitis Suppurative Story & How I Healed It With The AIP Diet

As of late I have been contemplating a lot about where I am. The last six months have been some of the most testing 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 stand stills. 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 with Hidradenitis Suppurativa, we suffer in silence. I use the word suffer knowingly. There is no living with HS, there is, often, only pain.

dark-haired woman drinking a glass of wine

A few months before I got pregnant, I was working in a health centered kitchen and eating healthy. My skin was on fire in this picture, although it was not cold I was wearing a jacket to hide a boil under my arm.

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! 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 because 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 that 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 in 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 autoimmune disease. The root of the cause is leaky gut. To get your HS in remission you need to heal your leaky gut. 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? Autoimmune Paleo Protocol.

What’s that? NO: grains, dairy, legumes, nuts, seeds, processed foods of any kind, chocolate, coffee, nightshades (pepper, eggplant, potatoes, tomatoes) & eggs.
YES: Lot’s of vegetables, organ meat, seafood, pastured animal proteins, fruits, coconut (will be your BFF), coconut aminos (are a life saver), tallow, lard, coconut oil, olive oil, bone broth.

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 GO TO 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 pod cast, articles and just a constant stream of information.

Go in Instagram, search #AIP #autoimminepaleo #autoimmuneprotocol

My personal AIP Journey in a nutshell:

OK, so 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 seed 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 out my trigger foods.

I can’t do nightshades or gluten at all! Lactose is also a trigger. Very starchy vegetables like yuca or plantain as well as nuts & 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 moderate amounts of wine or tequila, but not often.

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 weight lifting. 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 thankfor 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 reallllyy 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!

scars from hidradenitis suppurativa

 

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.

Lastly, talk about it. Reach out. You don’t have to do it alone.

Feeling great! Inside & out <3

man and woman on the beach in Hawaii

progress photos of healing hidradenitis suppurativa

53 Replies to “My Hidradenitis Suppurative Story & How I Healed It With The AIP Diet”

  1. 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.

  2. 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.

  3. 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.

  4. 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!!!!

  5. 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!

    1. 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!

  6. 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?

    1. 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.

      1. 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.

        1. 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

  7. 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.

    1. 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!

  8. 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.

  9. 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?

    1. 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!

  10. 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?

    1. 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!

  11. 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.

    1. 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.

  12. 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)

    1. 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!!!!

  13. 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.

    1. 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!!!

  14. 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?

    1. 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!

  15. 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.

    1. Yes unfortunately remission is contingent on eating this way for the long haul. Glad you found what works for you.

  16. 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!!!

  17. 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

    1. 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!

  18. 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!

  19. 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.

  20. 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!

  21. 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.

  22. 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

    1. 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!

      1. Thank you for responding. I’d never heard of a Healing Crisis before. It really helped me figure things out. <3

  23. 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.

  24. 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?

    1. 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

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