Monday, February 18, 2019

My experiences on an anti-inflammatory diet to help hidradenitis suppurativa

I'm going to talk about health and food here. I am not a medical professional, nor do I play one on this blog. Please consult a medical professional before diagnosing or treating any conditions you may have.

Hobo Mama wants you to know she's a professional blogger! Look at how professional she's being!

It started, or so I thought, with persistent ingrown hairs. They were red bumps in my bikini line that often grew swollen and painful, but every search result told me to be more careful about shaving and to try warm compresses. No matter that I barely ever shaved the area, I took it as fact that these were just a nuisance, even as they grew larger and numerous.

Then I had an open wound on my stomach. It was during hot weather, so I wrote it off as some sort of reaction to the heat and sweat. I felt embarrassed, really, that apparently my stomach folds weren't letting in adequate ventilation, and pledged to keep the area drier.

Then I got a small open sore in one armpit. That sent me Googling. I didn't have a knee-jerk reason for wounds in my armpit, even tiny ones like this.

It was that small sore that connected all the disparate symptoms. I didn't have ingrown hairs and severe heat rash and mystery sores. I had an autoinflammatory skin condition known as hidradenitis suppurativa, which I will abbreviate as HS for ease of reading. (You're welcome.)

HS was initially considered to be an inflammation of the sweat glands that caused leaking wounds (hence the mouthful of a name, if you want to consider the root etymology of hidra/sweat + aden/gland + itis/inflammation + suppurativa/weeping). It's now more accurately considered to be obstruction of the hair follicles, but tomato-scientific-jargon-tomahto. Whatever the internal workings, externally HS presents as painful swollen cysts that ultimately break to the surface and expel pus and blood, recurrent open wounds, and resulting scar tissue. To avoid traumatizing you further, I won't post any photos, but feel free to do an image search if you haven't eaten recently.

HS can show up anywhere on the body, but it's most common in areas of heat, sweat, and friction, such as the armpits, under the breasts, inner thighs, and groin area. While this means most people can hide their HS, it can feel shameful even as the pain becomes excruciating. It's more common in people who smoke or are overweight, which compounds the sense that it's a failing of the victim. Some sufferers assume an STD or, as in my case, user error, and avoid getting help as a result.

HS is not contagious, just FYI, and it is not an STD or caused by poor hygiene. What causes it and how to characterize it, though, remains somewhat of a mystery. Some consider it an autoimmune condition, while others say it's more rightfully an autoinflammatory one. Again, I'm not sure it even helps to delve into the distinctions here (you can read more here under "Autoimmune vs Autoinflammatory"), but I'll just say that, whatever the case, I do believe that there is a strong component of inappropriate inflammation in the flare-ups of the disease.

In an otherwise healthy body, inflammation is a warning sign, as this non-scientist understands it. If your ankle swells, it could be because you twisted it. If your throat is sore and hoarse, you might have a virus. The problem in conditions like HS comes when inflammation is divorced from its purpose, when the body reacts with inflammation to triggers that should be benign.

This is where an anti-inflammatory diet comes in. I'm not anything close to a doctor, so consult your own medical professional for diagnosis and treatment options if you suspect HS or another autoimmune condition. For me, I was very discouraged at the prognosis. There is no cure for HS, and the treatments to me seemed just awful (and, frankly, unsatisfactory in their success rates). They start with antibiotics. As someone whose acne was unsuccessfully treated with antibiotics for years with the only result being chronic yeast infections and resistance to a whole family of antibiotics, I personally will never cavalierly use these powerful medicines again and will take them only when necessary for a diagnosed infection. Other treatment options include lancing the boils, immune-suppressant drugs, steroid injections, and hormone treatments, all the way up to skin-graft surgery, where the affected skin is excised and healthy skin from another area of the body replaces it. Even that extreme measure is not 100% effective, since the HS can come back in the treated area.

By panning these treatment options, I'm not throwing shade at the patients who choose them or the doctors who hold them out as a possibility. HS is painful and can be debilitating as open wounds and subsequent scar tissue take hold. Sometimes extreme treatments are called for. I just felt very discouraged realizing that the treatments were so dangerous and, not to put too fine a point on it, unhealthy for my body overall.

I started researching the diet connection, because I immediately started hearing from the stories of people with HS that dietary changes had helped them, even if they hadn't lost weight as a result. There are two diet-specific research studies in the scientific literature. One is of a very small sample size, but it shows that all the 12 people on a no-yeast diet (no leavened breads and beer, pretty much) saw improvements. A slightly larger study saw 83% of 47 people improve on a dairy-free diet, while the remainder saw no worsening of symptoms on the same. Yeah, there's not a whole lot of research, is there? So we turn to the people experimenting on themselves.

Anecdotally, many in the HS community found relief with some form of dietary change, though it was bewildering to pin down. Some were grain-free, some dairy-free, others vegan or keto; some avoided nightshades or nuts, others eggs or FODMAPS. I decided it was time for my own dietary n=1 self-experiment to see if I could improve my HS without stronger medical intervention.

I chose the Autoimmune Protocol as my elimination diet of choice. I wasn't sure what to make of some of the health claims, but I knew it would help me greatly streamline my eating. Since it has paleo underpinnings and Sam and I already eat grain-free, we thought that would be a good place to start.

The AIP is an extreme elimination diet in that it eliminates everything fun from your diet. Just joking. Kind of. It eliminates grains, legumes (including soy), dairy (including butter), eggs, nightshades (peppers, tomatoes, eggplants, goji berries, and pepper-based spices), seeds (including coffee, chocolate, and seed-based spices), nuts, alcohol, and added sugars and artificial sweeteners (leaving honey and maple syrup as natural options). It might be easier to say what it leaves on the literal table, which is to say meat, fruit, and veg (nightshades excepted). It's very limited, but you're supposed to follow this elimination phase for only a short period before gradually testing your body with each potential trigger in turn to see what foods can be safely added back in.

The elimination phase is meant to last at least 30 days, but I didn't feel better at 30 days. Or six weeks. Not until around 2 and a half months in did I really notice enough of an improvement to feel confident that this extreme diet was doing anything but making it impossible to eat like a normal human.

Once that corner turned, though, it all seemed worth it. When my HS was at its worst, I was barely able to walk from the excruciating pain in my thighs from open sores rubbing against each other. I had been trying out all types of bandages until I finally settled on hydrocolloid bandages, commonly used on blisters, that I bought online in a jumbo size and quantity. Obviously, there was no walking around, even in private, without clothes on both legs to keep the wounded areas from touching. This both made sense of my obsession with avoiding thigh rub, and put me in a good position to do the best I could to keep the area friction-light. Still, some mornings, I would wake up covered in blood and pus because one of the boils had ruptured in the night. The condition was affecting my ability to go out with my children, because I had to keep scoping out places I could sit down and have some relief from the pain. After the diet took its effect in my body, my lesions went from a dozen to just a few, more manageable ones. I still get some cysts and open wounds, but I'll take the clear reduction in severity and the fact that the disease is not, as of now, progressing to become worse, as would be the usual prognosis.

I might consider topical treatments in the future to help the persistent sores I have in my armpits, since those are the ones that don't seem to get better or worse, just stick around. They're not bothering me as much as the others, though, so I might just leave them be and see what happens as my body continues to heal.

Being on the Autoimmune Protocol has had its ups and downs, but overall it has been a surprisingly positive experience. Even when my health wasn't clearly improving and I was thinking I might be wasting all this effort, Sam and I were enjoying the healthier diet. That's right, my husband with no autoimmune conditions agreed to go on this weirdo diet with me! Bless his heart. Sam's our chef, so without his support, I probably wouldn't have lasted very long and would have been miserable. With Sam's cooking skills and his research into autoimmune cookbooks (our favorite has been Nourish: The Paleo Healing Cookbook, by Rachael Bryant), we're eating the most delicious rotation of meals, including Swedish meatballs, German homemade sausage with "potato" salad, spinach-artichoke dip with pita "bread," and carne asada tacos — all grain-free, dairy-free, nightshade-, nut-, seed-, and egg-free. Amazing, I know. I'll see if he'll share his recipes sometime!

There have been financial and convenience tradeoffs to adopting this diet. To make life easier, we've bought some off-kilter snacks and condiments from small online retailers who specialize in the AIP lifestyle. (You can see some of our selections at the end of this post.) We can't eat many convenience foods from the grocery store, so Sam is spending many hours a week in the kitchen to prepare our meals. We eat one main meal together a day and otherwise choose smaller snacks or mini-meals that we can easily grab. Sam does a lot of meal prep and usually makes enough food to heat up for several dinners in a row to cut down on the cooking burden. We can't eat out pretty much at all — even apart from huge triggers like eggs and dairy, it seems like everything has soy or disallowed seed oils in it. I've found a couple places where I can make my own salad from permitted ingredients, and then I either bring my own AIP salad dressing or I ask for olive oil and vinegar. Honestly, though, it's usually tastier and more filling to bring something yummy from home to have as a picnic lunch. The good news is we're probably saving money by not eating out!

Psychologically, we've been doing pretty well as long as we're in our little AIP bubble. We've cut the kids back to just a few snacky items around that aren't very tempting to us. (Don't worry — they're not deprived and have barely noticed.) The only times I've really felt bummed out by AIP has been when we're around normies. For instance, my brother and his wife visited, and we spent two days out sightseeing, so of course everyone else wanted to stop for snacks and a lunch during the day. I had to make do with my backpack stash of cassava strips and bites of fruit while my family members were eating cheese curds and French pastries. At lunch, everyone else had pizza while I had my boring salad. I felt a little sorry for myself, I'll be honest. Usually, though, it hasn't been an issue. This is when it pays to be a hermit!

Other health improvements have been intriguing. Both Sam and I feel like we're doing well digestively and energy-wise on this way of eating. It will be interesting to see how we react to the trigger foods when we start adding them back in. Sam has lost some extra weight. I have not, because my body is nothing if not persistent. Before starting AIP, I'd been noticing a lot of swelling in my hands and feet and some obnoxious acid reflux that made me feel like I was being low-grade strangled every night. The swelling has gone, and the acid reflux is a lot better unless I eat too many sweet things. (Yes, even with AIP, it's possible to overindulge!) I might need to experiment with doing a combo of AIP and keto. Sam has been commenting that this is all just what we can externally tell from the dietary change — imagine what might be happening internally with the relief of all this unneeded inflammation. And, indeed, autoinflammatory and autoimmune conditions tend to cluster, meaning if you have one, you're more at risk for another, so it's worth it to get your body's inflammatory responses under control.

Plus, remember from before where I tried giving up nuts and dairy to see if it would help my acne? I made it five weeks on no dairy before I caved, and everyone who said in the comments that that wasn't long enough was apparently right. My skin on AIP has never been clearer! I've broken out a couple times, and the rest of the time, there's just … no … acne. It's so weird. My skin hasn't been this clear since I was pregnant. I'm still using my benzoyl peroxide, but I can experiment later with cutting back. I might be getting overly smug there. HS is more common in people who've had adult acne, by the by, and another name for HS is acne inversa, so there certainly seem to be triggers in common, including hormonal involvement.

Normally, this is the time when we'd be adding ingredients back into our diet to challenge our immune system. However, we've hit a little snag in our timing. We started this diet just after Thanksgiving in November. (Yep, we stayed faithful all through the other holidays! This is the sort of diet that's all-or-nothing, which actually makes it easier to comply, knowing you'll have to start the healing process over if you mess it up for one measly treat.) However, next month we're going on a trip overseas, and since we're flying and won't have access to a kitchen for at least the first stretch of our itinerary, we've accepted that we won't be able to keep to strict AIP for the duration of the trip. We're planning to do what we can and get back onto the elimination phase when we return. I'll see how long it takes to return to this baseline, and then we'll start adding back the potential trigger foods, one by one.

From my own self-experiments and my research into both HS and acne, I suspect keeping away from grains, legumes, excessive sugar, dairy, and nuts might be in my best interest even if I can't avoid everything else, such as on a trip or when choosing to eat with others. I've pinpointed that certain nuts can cause me digestive distress; I immediately feel it if I have too much sugar in my throat swelling and feeling the reflux; and there are numerous studies showing a link between dairy and skin health, perhaps because of the hormones contained in mammals' milk but maybe for some other reason of intolerance.

I'll have to report back with how things go as we add items back in after our trip. I don't want to avoid potential triggers for all time, because there are some reports that that can lead, somewhat counterintuitively, to further immune reactions. I'm hoping the trip doesn't cause my HS to flare up in a way that makes it too painful to enjoy myself. I'll have to watch myself and cut way back on anything inflammatory if that happens. Even if I have to survive on sad salads for the rest of the trip, it's better than not being able to walk!

That's my main takeaway from doing the Autoimmune Protocol. I'd read about it years before I ever got up the gumption to try it. For me, it really took intense suffering before I could weigh that the diet would be less suffering than the condition I was seeking to cure. We all have to find our motivation to improve our health. Acne wasn't enough for me; hidradenitis suppurativa is.

I'd appreciate hearing your stories of autoimmune or autoinflammatory conditions in the comments, and/or any dietary changes that have improved your health.

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