AIP Hidradentitis Suppurativa 

Coming out! Talking about my Hidradenitis Suppurativa & how AIP changed my life.


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.

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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.

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: 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. 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. 

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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

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40 Thoughts to “Coming out! Talking about my Hidradenitis Suppurativa & how AIP changed my life.”

  1. Sylvia Aquino
    This article brought tears to my eyes!!! So sincere and well written. I know what a sacrifice it is to watch every thing you eat. Your receipts are wonderful!! some require a lot of work but most are easy and delicious. Thank you
    1. Thank you for the love & support!
  2. Lourdes Rabel
    You are very brave and this article brought tears to my eyes. I know how hard it is and you have do it, I admire you. Congratulations!!! By the way your recipes are excellent.
  3. Thank you for sharing your experience with us. I am so happy that you've found the pattern of food and lifestyle practices that are helping you to manage Hidradenitis Suppurativa, and that you are spreading the word~!
    1. Thank you Petra! I appreciate your support!
  4. Melonie Brown
    Would you say a whole 30 is less restrictive than the AIP? I need to make dietary changes to see if that will help my HS as well, but the whole 30 looks pretty intimidating.
    1. Absolutely! Whole30 is just strict paleo without treats pretty much. AIP removes any NON OPTIMAL foods too, like tomatoes, peppers, eggplant, white potato, coffee, all nuts & seeds. The great thing about these restricted diets, they are very temporary. Make a calendar, count the days, don't do it during the holidays or your birthday. If you think you can do it, go for the AIP diet, commit to 30 days! I am finishing up an my second whole30, within my AIP restrictions. Once you see improvement, it becomes your new normal! Major bonus, I lost tons of weight eating yummy foods that also healed my skin. So there's that too :)
  5. Paz
    So glad you're better -- inside AND out! I need to try something like this...
  6. Jimmy Garcia
    Powerful story! I've been suffering from HS for about 17 years, I'm 32. I can relate with everything mentioned in your story. I've also made several changes in my life which include sleeping better, excercising and of course, following a clean diet. Awesome job! I know it's not easy to share this with the world, was not for me but finally wrote my own story about a month ago. Best of luck to you! :)
    1. Thank you Jimmy! I'm glad you've also found lifestyle changes that helped you. I think it's so important to spread the word that there are better, safer alternatives to antibiotics & surgery. So many HS sufferers undergo insane medical treatment. Where did you write your story? Do you have a blog? send me the link!
  7. Deb
    Amazing - thank you so much for sharing! This is what my daughter has been doing now for almost a year. She is making strides, getting better every day! We won't give up! I am so grateful for each of the people/books/sites you mentioned as I have scoured them for all the info I can get in order to help her heal. I wish more people would give Paleo AIP a change. We are a society of 'instant fixes' and there just isn't one for HS . . . it takes time and sacrifice. Bless you!
    1. Hi Deb! Thank you for reaching out. So glad that AIP is working for your daughter. It's definitely not a quick fix, but it's the only one. Another great resource for support is HS Diet Connection group on Facebook.
  8. Amanda
    I just read your introduction on Whole30 Recipes and want to say thank you for speaking out about this condition. I was just formally diagnosed last year, but have been suffering since pre-puberty (33 now). Have you found that night shades are a common trigger for HS? I love my tomatoes and peppers, but I would give anything to wear a tank top or bikini again without embarrassment! The dermatologist I saw wanted me to try antibiotics for 3 whole months! After 1 month and no visible results I gave up because I know they do more harm than good. Topical medication did nothing as well. Tea tree oil helped a little I think but I cannot handle the smell. I have done 2 whole 30s but no AIP. I may just have to try it that way next time.
    1. Hi Amanda, thanks for writing. It's very frustrating that the conventional medicine gives us little to no hope. Autoimmune Paleo definitely works, it takes a long time, sometimes more than a month, but it works. There are some good resources listed here also on Facebook a good support group is "HS Diet Connection" & "AIP Support" group. It's not easy, but if you've done Whole30's you can do it!
  9. Crystal Biddix
    Oh my. You started out with my thoughts exactly, what all one must give up! How do you build up the will power in the beginning? Especially when your family will be eating totally opposite that the plan?
    1. Doing a whole30 is what showed me that I already had the will power to do the AIP. They didn't eat totally different than me, I would just add a side of grains or pasta to the protein & veggies I was already making for myself and that's what they ate! And still do... to makes things easy I will cook up a big batch of rice in bone broth or have some tortillas on hand that they can add to their meals. Yeah, my husband misses tomatoes... but he's willing to sacrifice them for me :)
  10. Cliff
    Is it possible to get your email. I'm starting be elimination diet and I need your guidance. It would mean a lot.
    1. I've sent you an email :)
  11. Katie
    Thank you so much for sharing. You are amazing! I follow you on Instagram, your recipes and photographs are great!
    1. Thank you for the support Katie <3
  12. Ash
    Such a coincidence that you posted this on FB today, while I'm sitting here in tears because the pain is so unbearable today. It's been one flareup after another for the last 3 months and today I feel like giving up. I've been on paleo, taking turmeric etc and nothing is working this time. I'm 28 years old and I feel like my life is over. Sorry for the pity party, the pain is just too bad today..
    1. Hey Ash! Sorry you're in such a rut. It can be so defeating when you don't get a break and you're trying. Just paleo? Do you still eat nightshades? Those are a crazy trigger for me. I did paleo and gluten free for years (back in college) and it didn't help my HS. It really was a combination of finding my trigger foods (they are different for everyone), and then sticking with it long enough to see results. And I still find things that make me flare (most recently xantham and guar gum). Have you done the AIP? I really really really recommend it! If you need any help, I'm here! Also... are in the HS Diet Connection group on Facebook? It's fantastic support!
  13. You can apply castor oil works best for me to heal and put the inflammation under control. So as big in raw coconut oil
    1. I always have some on hand, but it's never really worked for me. I definitely use coconut oil though.
  14. Josnne
    I would like to follow you on Instagram, what is your Instagram name? Thank you in advance.
    1. Hi Josnne! My instagram handle is @thecastawaykitchen
  15. Joanne
    Cristina, would you recommend doing blood work (IGg) to see what food we are sensitive to before starting a AIP lifestyle? Would that make the journey a little bit easier? I've been suffering with HS since age 13.
    1. I would!! I have not had it done, but would love too! HS is complicated and there is often something so specific which can be your trigger.
  16. Anita
    Thank you for this blog posting! I have been suffering from HS for at least 22 years. I have tried everything. I started an AIP diet last Fall after I got desperate during a particularly bad flare up. I did see some improvement. But unfortunately, I could not keep it up after 3 months because I moved out of my apartment to travel abroad for 2 months with my husband. Traveling has been amazing, but tough on my diet and my body. I try to be in the moment, but am also looking forward to coming home and restarting my diet with my kitchen and all of my resources. I frequently read this blog posting for inspiration. As you mentioned, HS is not well represented in the AIP community, but I have read a few success stories like yours. Thanks again! I hope I can be inflammation free in a year, too!
  17. Sue
    Hello christina . Thank you for sharing your history with all of us. My daughter is just 13 , and she is being dealing with HS since 5 years old. Not easy, is a horrible condition that it can emotionally affect everyone around you. She got all my support 100% and I am waiting until she is old enough to take a decision about surgery or paleo diet for the rest of her life. For now i am making sure She eats the right food and be healthy. Your bio is great , I love it ! Thank you and God bless you. Xo
    1. Hi Sue! Thanks for stopping by! HS is really hard for kids. Good on your for taking care of your kiddo with proper nutrition to help her quality of life. Hugs!
  18. Madhura
    Thanks so much for sharing this! I have recently started medication for HS. It took me a good 12 years and 2 wrong diagnoses to realise it's HS and not acne vulgaris that I've been suffering from. There is less awareness about HS in India. I'm trying hard to lose weight as my doctor said that's the first thing i must do to help my condition. He did not prescribe any specific diet but I've come across paleo for HS. My only worry is that i stay with my family and it's difficult to cook separately just for myself.It makes me feel more isolated and i crave all the bad junk food i had been addicted to all my life. Sucks that comfort food is the thing that increases the flare ups. I am very worried that i am not consistent in maintaining diet. But your article gives me hope!
    1. You can do it! It takes so work, but stand your ground. Make your health a priority, it's so worth it!
  19. Elena Ruiz
    Hello. I am so sorry for all the pain you have gone through. I have only read your blog entry 5 minutes ago. While I do not suffer from HS, I do have type 1 diabetes (since age4) and Multiple Sclerosis since age 34. Both are autoimmune diseases. I have been on the internet looking for answers regarding nutrition for months. I don't know where to start or where to end. What I've read on your blog so far has helped but I am still very confused. Paleo? Southbeach? Keto? The Zone? So much information is out there- all promising the world. I am trying to follow your resources. Do you have any advice as to where I can start? This AIG is a brand new concept to me (as if reading this article.) Is there an association? Somewhere to get guidance. So much is out of control and I think it all about nutrition at this point. My medications are as good as they are going to get. Thsnk you so much, Elena
    1. Elena, thank you for reaching out. I know it can all seem overwhelming at first. I think a great starting point is this book: The Paleo Approach by Dr. Sarah Ballantyne. Or you can also look up The Wahls Protocol by Dr. Teri Wahls, who also had MS and was able to reverse it through diet. Those are tried and true trusted sources of information, with great published books. Start there. You will find what you are looking for.
      1. Elena
        Thank you so much! I appreciate the references and your response. I will be following closely for the wonderful recipes! Can't wait to start cooking!
  20. Donna Allgaier-Lamberti
    I am so happy to find your blog. It was recommended to me by another reader. I am age 67 and have had HS (boils/cysts) since was age 12-13 and just recently realized it was autoimmune. I relate to much of what you write. I am on the AIP Protocol for my Hashimotos' Thyroiditis and saw much to my surprise that my skin improved dramatically. I knew then there is a connection. I look forward to eading more. Thank you.
  21. Brittany
    Thank you for sharing your journey! I've been online all night, feeling defeated after a terrible flare up. I'm looking to change my diet for some relief (I've had HS since I was 10 years old, currently I'm 26). For the last 6 years I've been vegan and that has helped a lot in comparison to how terrible my flare ups were as a teen. Would you recommend the AIP for a vegan? I plan to hop off here and do more research, but is soy off limits? I'm a huge nightshades consumer, I have some form of it at every meal! I think gluten is a big trigger for. I incorporated wheat bread in my meal prep last week (Aldi did not stock my gluten free) and here I am today with a huge cyst on my inner thigh. So frustrating. Im really hoping to naturally treat (I haven't taken any meds for my HS since my first diagnosis).
    1. Hi Brittany! Thanks for sharing. So I don't think it's possible to go vegan and AIP. In the autoimmune protocol a lot of the nutrient foods we eat are animal based. It's a diet that focuses on anti-inflammatory foods, there are no grains allowed. No beans. No nuts, soy, diary, eggs, gluten or seed based spices. Would you be willing to eat animal products and do you have access to quality grass feed beef? Those make a big difference. You can read up on The Paleo Mom or Phoenix Helix for more info!

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