Autoimmune Protocol Diet & its Impact on My HS
Hidradenitis suppurativa (HS) is a horrible disease to live with. It is debilitating, stressful, embarrassing, and limits what we can do in our day-to-day lives. I’ve lived with the condition for over 16 years. I found out I had it when I was in college. I was tested for staph infection, after coming in with a large boil on my inner thigh, and it came out negative. I was given 16 injections to numb the area before it was drained, and it ended up eating a hole into my leg 2 inches deep. Gauze packing ensued to help that flesh heal and regenerate, and after a few weeks, a horrible scar was left in its place.
That’s when my doctor began to “educate” me on hidradenitis suppurativa. What I mean by “educate” is most doctors and nurses didn’t know what it was, let alone how to help me. In their opinion, it was due to my hygiene and obesity. I felt ashamed, overwhelmed, and hurt by the time I left that detrimental appointment. I knew I was overweight, but I was also active daily. I hiked, did yoga, and walked. I wasn’t eating the best, but I was trying to make changes. As for hygiene, I showered multiple times a day. Every morning, after every workout, and if I started to sweat too much after any activity. I felt judged. Horribly and wrongly judged.
I isolated myself, hid the pain and discomfort the best I could, and didn’t tell a soul the condition I had been diagnosed with. I lived in a cave of depression, anxiety, fear, shame, and embarrassment for far too long. I couldn’t suffer alone anymore, it was bringing me down, causing depressive moods, isolating me from my family, from having a social life, impairing my ability to work, and even delayed my ability to exercise. Every time I tried; it would cause a flareup. It impacted the current relationship I was in as well. I was treated very differently once my lesions were seen in action. That relationship ended.
After spending several years in silence suffering, I took matters into my own hands and started researching every aspect I could find. I tried different soaps, different ointments, certain brands of bandages and gauze, diets like Paleo (but without nightshades), over the counter and topical medications, hygiene practices, losing weight. You name it, I’ve tried it. I came to one conclusion: there is no universal cure or remedy for hidradenitis suppurativa. It is personalized to the individual. What works best for me won’t necessarily work for you, and vice versa. All we can do at this point is share what has worked for us, and hope it helps even just a few others.
The current blessing in my life (besides my wonderful husband and sweet little boy) is finding the Autoimmune Protocol (AIP) diet. This is geared towards those with autoimmunities, and while we don’t currently know if hidradenitis suppurativa is an autoimmune condition, one study has shown AIP to be helpful in irritable bowel disease and it has been working wonders for my HS. My belief is that it’s due to the focus on staying away from foods that cause inflammation while eating nutrient dense foods that help combat and prevent inflammation. It also insists you go through an elimination phase and then reintroduce foods to identify your own personal triggers. On top of that, AIP seems to be more than just a diet. It’s a way of life.
For me personally, AIP reminds me to put self-care first. It’s not just about food. It includes focusing on what your body is telling you- when you need rest, keeping movement in your day, finding ways to lessen stress, staying hydrated and conscious of how foods are healing or hurting your body. I’ve completed a month in the elimination phase and have had successful results. When I say successful, I don’t mean that all my flareups are gone and that I’m Band-Aid and gauze free.
To put it in perspective, when I started AIP, I was suffering from so much pain and discomfort that my ability to even move around my home and care for my toddler was excruciating. I was in tears daily, doing my best for my son, for my husband, and my home. I also work from home, and it was impacting my ability to do so. I had resorted to purchasing a memory foam cushion for my desk chair to help ease the pain I felt in sitting, and it didn’t help much. I could only work in 10-minute blocks, and by the end of that 10 minutes I was helpless to the pain. I had numerous lesions that were open, draining, swelling, not coming to a head, and felt like it took me 20 minutes just to apply bandages after a shower. And of course, because of the delicate location of some of these wounds, I needed my husband’s help.
Now, after four solid weeks following Autoimmune Protocol, I have two open hidradenitis suppurativa lesions that are no longer painful, don’t cause discomfort, and just need a simple strip of gauze to catch the continuous (but small) leakage. My energy is rising, though I still feel fatigued throughout the day. My skin is clearing up. Especially under my breasts. The sensitivity I used to feel in my armpits is gone. The swelling and pain in my knees have disappeared (I have arthritis as well). More importantly, my mood has improved tremendously. I don’t feel so heavy, emotionally or physically. The brain fog has lifted, and I’m able to do so much more around my home and with my family.
The elimination phase can take a while for some, sometimes up to 3 months before you see full results. For me, I started noticing a huge change almost immediately. Four of my six lesions were healed within days. The swelling and pain in my knees disappeared after a week. And by week 2, I was feeling brighter and had more energy.
I still have a long way to go. Reintroducing foods will be both a blessing and a curse. The elimination phase of AIP isn’t meant to be a lifelong diet. But for me, I know it will be a foundation for what I feed my body. Previous eliminations highlighted the fact that yeast, tomatoes, bell peppers, and potatoes are my triggers. I have a feeling dairy may be as well, but we shall see!
So, you may be wondering, how expensive, overwhelming, or time-consuming is AIP? It’s likely different for everyone. My experience was well thought out and planned over several months. I didn’t jump into it cold turkey. I spent time reading, researching, testing AIP recipes, slowly omitting certain food groups, and focused on spending a small amount of money over a month and a half gathering up all the staple pantry items I needed. I searched for the best deals on food, practiced batch cooking a few meals, followed accounts on Instagram to keep myself motivated and informed, and prepped myself emotionally for what I was about to do. I was scared I’d fail. Worried it would cost too much. Anxious about the results. Wondering if it would just be a waste of time. And then the horrendous flareup of all-time hit me like a tsunami and I decided to dive right in where I was standing and took the plunge!
Cold turkey might work for some, but others might find it less stressful to tiptoe in and test the waters. Informing my family of the changes I was about to make also helped me hold myself more accountable. It prepared my husband for the dietary changes he’d no doubt be noticing in his own meals. Let’s be honest, I was not going to cook several different meals at one time. Him and my son eat the protein and veggies I cook under my dietary guidelines, and then I cook a third dish (if needed) to support their love of rice and/or pasta. I also batch cook their favorite recipes on the weekends, so they have leftovers to eat if what I’ve made isn’t appealing to them. Oddly enough, they both seem to enjoy everything I’ve made so far!
All in all, AIP can be overwhelming at first, especially with the pain, fatigue, and discomfort you’ll likely be feeling. But it can be worth it to find out what triggers your flareups, and how to put your self-care first without feeling guilty for it.