dominikki, I went around and around with my gynecologist when it first showed up: she tested me for STDs - every one, even though I told her DH was faithful and I hadn't strayed either. Negative. She took a small biopsy of a lesion when it was inflamed. Nothing but "generalized inflammation".

So she sent me to a pelvic-floor specialist in Philadelphia. I was told it was an inflammatory condition, and auto-immune related, so most likely HS. I'd never heard of it before. At first she thought it was lichens something or the other, then said it wasn't. She did a series of hoo-ha injections that did nothing to help, suggested excisional surgery as a possibility. I left and didn't go back - and up until last December suffered regularly from flare ups that made it very hard to sit or even walk at times.

One thing I did do years ago was give up caffeine, which seemed to aggravate and make the flares much worse. That helped, but I was still suffering regularly.

Imagine my delight when changing my diet last November seemed to make such a drastic difference.

Before changing my diet, I was eating a very low-fat, relatively high carb (lots of veggies and whole grain products) and very lean proteins.

The Paleo diet is a simple concept, but it is a huge change for most people: it cuts out all processed foods, cuts out all grains and grain products (bread, pasta, cereal, etc), cuts out all sugar and anything with added sugars, eliminates industrial seed oils (canola, corn, "vegetable", soybean, etc), and is restrictive about things like fruits due to sugar content. Also low on starchy things like potatoes. Officially it cuts out dairy, but I cheat and have a little full fat heavy cream in my decaf and cook with butter and hard cheese.

So what do I eat? Lots of saturated fat from whole animal and plant sources, followed by a modest (maybe 25%) amount of protein, and rounded out by non-starchy vegetables, mainly dark leafy greens. I eat fruit maybe once or twice a week at most. I try to buy grass-fed or pastured sources of animal protein or fats, but it's expensive so I can't always do it.

Reason for grass-fed being preferential is its desired balance of protective omega-3 fatty acids vs. pro-inflammatory omega-6 fatty acids. Industrial raised and feedlot animals are fed grain instead of their natural food of grass, this fattens them up quickly (note: grain fattens cattle fast) but also raises the omega 6 balance.

Anyway, typical day for me: breakfast was a 3 egg omelette with cheddar cheese and mushrooms and 4 slices of bacon, plus decaf americano with heavy cream. Lunch was arugula salad with a sliced up avocado, leftover chicken with skin on, and simple dressing of olive oil, balsamic vinegar and cracked black pepper. Dinner will be grilled flank steak and roasted asparagus smothered in homemade hollandaise sauce.

Sometimes I'll sub out the omelette with a berry crumble made with blueberries, nuts, butter, vanilla and cinnamon. I've also made a creamy butternut squash/coconut milk "hot cereal" as well as a pureed almond/walnut "hot cereal".

Eating this way does require a bit of meal planning ahead of time, which some find onerous, and it's not easy to "eat out" since restaurants revolve around high carbs, sugar and seed oils, but the incredible relief I've had has been so sweet after 15+ years of suffering that I can't imagine not eating this way. I initially started Paleo to lose more weight on top of what I'd already lost by semi-starving myself. I had no idea it would also help with HS but it has. I'm also never hungry (except for right before the 2 or 3 meals I might eat a day - the bigger the breakfast, I am sometimes not hungry until dinner).

Some good starting sources of paleo lifestyle and closely related subjects:

http://www.marksdailyapple.com/primal-blueprint-101/
http://www.wheatbellyblog.com/
http://coolinginflammation.blogspot.com/search/label/anti-inflammatory%20diet
http://jackkruse.com/easy-start-guide/

Finally, I can't recommend highly enough three books: Robb Wolf "The Paleo Solution", Dr. William Davis "Wheat Belly", and Gary Taubes "Why We Get Fat."

Paleo and variations of it are a huge help for stubborn health issues. I've got several problems that are dramatically minimized by eating grain free.

I've been indulging in a lot of fruit since it's in season, and this thread is a good reminder of how I know I need to eat. I haven't been feeling quite tip top lately, and keep wondering what's creeping into my diet. Excessive fruit, and some guilty, sugary, milk chocolate. _I_ need to moderate the fruit and save the chocolate for truly special occasions. :)

And I totally hear you on the chocolate angle. Every few weeks, I nosh on a little Ghirardelli Intense Dark 72% cacao.

Yeah, it's cheating but I used to drink 3 or 4 IPA (beers) a week and now I might have one every 2 months.

Except I switched switched off to red wine and tequila (ranch water! nectar of the gods!), so I still waste way too many carb grams on booze ;-)

On Paleo - I've noticed that the gassy, bloated feeling I always had after eating has also gone away completely.

I'm psyched for my birthday later this week because I know my MIL is getting me a Paleo cookbook I've been dying to get my hands on: "Well Fed" by Melissa Joulwan, whose blog is http://www.theclothesmakethegirl.com/

Happy eating!

Giving up chocolate won't be a problem for me, it's bread. I LOVE bread! Bread is like...everything :-( I will miss bread. But if it truely help then it's worth a try right? I've had HS for 8 years, and it's freaking painful! Sometimes the flare ups get as big as golf balls and walking or sitting is agony!

I'd never heard of HS either, until last year. I was having my regular check up and my OBGYN said she thought HS was what I had. She'd seem the flare ups before but had always thought it was folliculitis. She finally figured out it was HS because of the scarring. I was reading about HS online and everything I've found says there is no cure, no medication they've found that will really help and even surgery, a last ditch effort, is not 100% effective because the HS will just transfer to a new area. Good times!



Edited 1 time(s). Last edit at 07/31/2012 10:58AM by dominikki.

Bread can be really really tough to give up. It really is a lot like an addiction. The longer you get away from it, the less you should crave it, but the first two to three weeks can be pretty bad.
It actually acts on opiate receptors in the brain(and guts), so don't be surprised if you have some tummy upset as you adjust to living without it.
It's surprising how hard it is for some people.
I had been gradually eating less and less wheat as my reaction to it was pretty obvious. Then I figured out that gluten can cause all the things I was trying to fix, and at that point it was easy. Just knowing the source of the problem, that it wasn't that cookies or pasta disagreed with me, that it was all wheat and gluten.

But that's a little different than paleo. I tried using substitutes for a while, but eventually even rice seemed to disagree with me, so I am 99% grain free now. I do still indulge in root vegetables in moderation though, so I'm maybe not a perfect paleo eater. :D
Much closer than the SAD!

dominikki, I flinched with empathy in reading what you've been through. I've suffered through ‘can't walk or sit’ pain more times than I can count, but never had to tolerate flare ups the size of golf balls. Yeeooouuchhh!

I'm in a minor HS flare right now: 2 super tiny spots, not really bothering me at all, and they'll be gone in a day or two. This is now a typical flare since I started Paleo, whereas before they'd be much larger with deeper and more painful tracts, and torture me for nearly two weeks before healing.

Thanks, too, WinksWinks (NudgeNudge? KnowwhatImean?) for some excellent points, particularly the opiod receptors. Carb cravings are real for a reason: they're causing an addictive physiological response.

I do agree that bread and grain products are hard to give up. We're so used to using them, conditioned to want them, we're marketed to like there’s no freaking tomorrow, used to the convenience, and brainwashed that they’re “wholesome and healthy” when the science simply does not support this.

Will try not to write a book today, just give some more Paleo relevant links that I've found fascinating, interesting, and compelling:

http://www.marksdailyapple.com/why-grains-are-unhealthy/

http://www.marksdailyapple.com/lectins/

http://www.biomedcentral.com/1472-6823/5/10

http://coolinginflammation.blogspot.com/

http://www.ajcn.org/content/early/2010/01/13/ajcn.2009.27725.abstract


For anyone who's just starting a Paleo or other low carb diet, these tips helped me immensely:

http://www.proteinpower.com/drmike/ketones-and-ketosis/tips-tricks-for-starting-or-restarting-low-carb-pt-i/

You might find this article interesting:

http://news.yahoo.com/ancient-poop-gives-clues-modern-diabetes-epidemic-113056682.html

Richard the Bad, this makes perfect sense to me. Thanks for the link. The Masaii in Africa historically subsisted on a diet that was almost entirely milk. They did fine. The Inuits were almost exclusive blubber (fat) and meat eaters.

Like the Native Americans, these non-Westernized peoples quickly started having major health problems - obesity and diabetes - once they adopted starch and processed carbohydrates as diet staples.

Does nixing the low carb thing possibly help with IBS too? I'm just falling apart at the seems!!!

frogdogs, thankfully the golf ball sized flare ups are not often but enough that I DREAD everytime I feel one coming on. They are usually spread about 6-8 months apart. Mostly they are dime sized but still just as painful. I actually went a whole year with no flare ups once! I thought I was cured but alas that was not the case :-(

Well, so much of what I've read about points quite compellingly in the direction of inflammation being a key factor in causing both autoimmune diseases and damaging the gut lining.

The primary components of an inflammatory diet as defined in the literature includes any grains, processed carbohydrates, starches (potatoes, rice), sugars including excess fructose, and 'vegetable' (seed) oils such as canola, corn, soybean, safflower.

I believe that such a low carb, anti-inflammatory diet utilizing primarily saturated fats, a moderate amount of protein and whole non-starchy vegetables may be the best type of diet to address problems with a damaged gut (IBS) and autoimmunity.

I've been paying increasing attention to the issue of replacing healthy gut bacteria that have no doubt been decimated by years of chronic antibiotic use, but so far, short of planting my own garden to have a little 'clean soil' clinging to home grown veggies for me to actually eat along with those veggies, I'm not sure how I'll address that issue. Probiotics only take care of the handful of species endemic to dairy and do not address the boatloads of other species a healthy gut usually has.

Anyway, all I can say is that if you're ready to give it a try for 30 days, don't cheat, and see how you feel. Only then will you have an idea of whether it's the right approach for you.

Good luck if you decide to give it a go!

Very possibly helps with IBS. I'm pursuing a diagnosis right now, but if I can identify all my triggers then it's not IBS, it's a food sensitivity.
That was the area I saw the biggest improvement with going grain free/extremely low. Stress still does me in though!

Won't be a cure all for everyone, but it is really worth giving paleo a try, so many people see complaints like that cleared up. If gluten is a problem for you, bloat should begin to dissipate within three days of going grain free, but improvements will continue the longer you stick with it.
I lost 50lbs just giving up gluten grains. I felt like I ate more, but weight just dropped off.

I thrive on paleo style eating, but I clearly have a problem with gluten, not everybody will see such a difference, and some people will find this way of eating doesn't agree with them at all. Everybody's different! :)

I never had noticeable problems with gluten in years past, but when I ditched the grains for weight loss/paleo/low carb I noticed months into it that if I 'cheated' and had something made from flour (or even a beer, which is made from grain) I'd feel gassy and bloated.

It actually surprised me, how noticeable it was. I didn't expect it.

If I stick with paleo, I never get heartburn, gas, bloating or other abdominal food-related discomfort.

With that in mind, I'm off to get dinner going!

I think that breakfast is the most challenging meal when you're trying to reduce grain consumption. One breakfast that I like is thinly sliced salmon accompanied by mustard-dill dressing (available at IKEA stores) or honey-mustard dressing. I have it with some cottage cheese on the side.

Sounds good!

I was just discussing this with my sister yesterday: we're so culturally conditioned to what breakfast should look like that we've forgotten we can decide to eat anything we want, even if it's something we'd "normally" eat for lunch or dinner.

Why not?