Working my way back to AIP. Again.

It’s been well over a month since I finished my antis and I have a few flares on my unmentionables. They are at the front, so don’t rub when I walk and I’ve actually learnt to accept them. I realised that just because I am having a flare, it does not have to mean I am a failure or that it is game over. It is just part of my life and if it pops up in an area that doesn’t cause me too much grief, I’m happy with that!

I really am trying to be good. I had been writing a food diary religiously and I do plan to get back to my nutritionist doctor. I have ordered more Bactivit and more Permeaprotect and have been taking it all as advised, along with cod liver oil. Do these things work? Who knows?! 

Going back to AIP eating is a tough call. The best part is that eating mostly paleo/AIP for the past two years means that jumping back in the saddle is not too scary, although I can’t say I’m 100% back on board just yet. However, I rarely eat processed foods, so that’s no biggy. I never drink any sodas or fruit juice, so nothing to miss there. I have cut out wine for the past two weeks – I didn’t even drink when we went to visit some vineyards. It doesn’t take as much effort to say no anymore and I guess coming to terms with the longevity of the disease has stopped me being so emotional about having to be denied certain foods. That’s not to say I’ve got it cracked, but it’s just that if I look at where I was a year ago, it really has gotten easier and easier.

We currently have a freezer full of bones, carrot peels/ends and celery just waiting for my stockpile of stock to run low. We have a slow cooker ready to make the stock if it does get low. We have pork belly curing in the fridge ready to make the next batch of bacon. We have a bag full of measured out ground spiced pork sausage for breakfast. I have sliced onions and frozen them in weeks worth of portions, ready to use and peeled and halved all the garlic I need for the week. I have peeled and topped and tailed carrots in a tupperware in the fridge – easy for a snack or to use in my recipes.

We do all of these things as a family, which takes a lot of the effort out of them and even if I am in the kitchen prepping food, Mr B will be helping by entertaining Baby B or sorting out another meal and Ty will be folding washing or unloading the dishwasher. There is definitely about having a complete group effort that takes the pressure off and makes the whole thing much easier.

I am still battling with a bit of a sugar dragon. Tonight I caved and as I have a whole bag of beautifully ripe avocados, I indulged myself and made an avocado chocolate dessert using 100% unsweetened cocoa powder, organic honey, coconut oil and of course avocados all thrown in a blender and whipped up into chocolatey heaven. No reactions yet and even though it was a little avocadoey, I really could see how avocados can be used as a creamy substitute in puddings. I reckon if there had been another stronger flavour in there (mint perhaps?), I really would not have tasted the avocado at all. In any case, it was delicious and filling and not forgetting that if I was eating like any normal person, I would’ve just made one of the healthiest chocolate mousses out there!

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My Paleo Success story!

I sent in my Paleo story to paleoplan.com and the lovely Neely Quinn sent me an email to say it had been published. Have a little read ūüôāScreen Shot 2013-09-25 at 15.08.30

http://www.paleoplan.com/2013/09-24/paleo-success-story-losing-weight-healing-hidradenitis/

 

A dramatic mini flare.

Life has been rosy lately. No Hidradenitis Suppurativa means I am a new woman. I can sit down like a young person again – no awkward movements whilst I ease myself into a chair like an arthritic 90-year-old sucking on a lemon. I can walk for miles without developing a John Wayne swagger. I can let Baby Bodros jump up and down on my lap without wanting to cry out like a wounded dog. I go to work. Actual work and I physically work my ass off. To a normal person, these little delights are commonplace and now I am also guilty of taking it all for granted, as it has been so long with no pain.

Then – uh, oh…complacency came and bit me on my healed, pain-free, little ass! We had a take-out and the next day – mini flare!

It was an asian shrimp and ginger dish. No extras, no rice, no noodles, but no doubt cooked with sugar, soy and God only knows what other unhelpful foods this HS sufferer should probably avoid. And it wasn’t even that good!

I developed a tiny spot in one of the unmentionable zones. It was small and leaked straight away. I nearly cried. Not from the pain, but reaching for all my little potions to clean it brought back the horrible memories of constant cleaning, wound dressing, confinement to the house during a flare and all the emotions I went through at these times. Yes. I was feeling very sorry for myself.

Two days later and it is all fine. It has nearly healed and after much placation by Mr B, my Inner Drama Queen has headed back up to her tower, back on look out for the next inevitable, looming crisis. He gently explained that it took the HS two years to get as bad as it was, so a little hiccup is unlikely to induce over 30 open sores overnight. I had been so used to any little flare aggravating the whole area, it is hard to believe that with no open sores, a little flare will remain just that. Little.

So the moral of the story? Be kind to yourself and don’t freak out. Our HS is always going to be a part of us – a part of us that we have limited control over – so we will always have to find ways to adapt around it.

Bonne journ√©e ūüôā

The Bridget Jones of dieting and yam-yams.

8 days. 8 days of antibiotics and 8 days of eating clean. Supposedly.

I’m happy to say that I have only missed one dose of my antibiotics. Not happy because I’m intoxicating my lovely gut with these drugs and a missed dose means a health break for my insides. No, happy that with the chaos of moving out, I have managed to remember to take them so often. It helps that Mr B is on board and I get the odd gentle reminder to get my ass of the sofa at night and take them. If I’m going to trial this antibiotics thing, I’ve got to do it 100% otherwise, what is the point?

My update on the antibiotics…well, I have still got the unmentionable going on in (and then swiftly out of) my stomach, although it is only happening once a day, so it’s bearable. ¬†I have no gouty symptoms anymore, but what I do have is overwhelming tiredness. Like the type you get when having a flare (or a hangover). Just ridiculous I’m-gonna-lie-down-right-here-on-the-tiles type tiredness. Tiredness that makes my fuse reaaaaally short. The same as when you’re horomonal. That kind of tiredness. I’m hoping it’s yet another one of those symptoms that will gradually fade away, but until then I am having to be extra kind to myself, in order to achieve anything. Otherwise my Inner Perfectionist (she lives on the opposite side to my Inner Hypochondriac) keeps getting really cross that I am not getting my chores done, efficiently or at done all in some cases. I’m ignoring her and the Hypochondriac. Let them battle it out together. I’m just too tired to listen to either of them.

A new side-effect is yam-yams. This term may not be a familiar term to you, but you’ll see it makes true, onomatopoeic sense. Have you ever had a dry mouth from surgery, or from taking medication? When you are so dehydrated , your mouth feels like the inside of Ghandi’s flip-flop, in the desert, after he’s walked a few hundred miles? Well, yam-yams is the sound your mouth makes when you try to rehydrate it without actually drinking. When you suck your tongue and open and shut your mouth. Yam, yam, yam. This is what I have. Constantly. Despite drinking a fish pond of fluids daily. Still, I won’t die (really, Inner Hypochondriac, I really won’t.)

Then there’s my diet. Hmmm. I am mostly doing good. Lots of beautiful meals, but little creativity going on. Roast chicken or pork. Roasted vegetables. Pan-fried fish. Saut√©ed courgettes, garlic and onions. Roasted sweet potatoes. In cubes. In wedges. In bigger chunks. Lots of smooth coconut oil, lavished all over everything I cook. Lots of raw coconut. Tinned fish. Sauerkraut. No grains, bread, pasta, sweets, processed food. ¬†Ok, no processed foods apart from two or three. Dried apricots and wine. And a little cheese. I had one glass of beautiful, high-quality, red wine at a Wine and Cheese party Saturday night. You would think that I would have learnt my lesson after nearly dying the day before of all the side effects of my meds; instead I ignored the potential cirrhosis of the liver and sipped a lovely glass of Burgundy.

I am Bridget Jones. Of the diet world. I make poor choices, repeatedly.

To be fair, the wine didn’t cause me to flare, neither did the raw milk cheese, called Langres (delicious by the way and from a beautiful little Fromagerie, where 95% of their stock is cheese made from raw milk). Maybe this lulled me into a false sense of security.Then came the dried apricots….

Yesterday, I was baking for Ty’s school fair. My Sugar Dragon was mocking me, as it always does when I’m baking. How tough is it to wash your hands every time a bit of chocolate or cake mix touches your fingers? To put the dark chocolate-smeared spoon straight in the dishwasher, fighting every instinct to put it in your mouth?? So, I caved and had a few apricots. No big deal, I thought, I’m on killer antibiotics, so it should be all right…

WRONG! The apricots have the highest fructose content of anything in the house (apart from the dried figs – thank goodness I didn’t see those!). Fructose and anything high sugar causes me to flare. In fact there is so much fructose in those little, seemingly harmless, gooey balls of organic, dried fruit, that I would probably have been better off licking the dark chocolate off the spoon.

So, take antibiotics if you want. Or don’t, it really is an individual choice that may even change over time. However, if you are going to make one personal choice that helps you to heal, try to cut out the sugar. It does seem that sugar, along with heat and humidity, really does affect so many people’s Hidradenitis Suppurativa. It is not that easy, especially if you live with others who happen to exist in a world where school fairs demand cakes. Especially if you continue to feed your inner Sugar Dragon, instead of slaying it. But it is definitely worth it in the end.

Today’s conclusion. An autoimmune protocol diet (with no added sugar) definitely works and hopefully Bridget Jones will learn to accept this very soon.

Day 8 and the jury is still out on the antibiotics. Now, where did I put my pint of water? Yam, yam, yam……

Good food, good wine, good cheese. Hangover.

Hangover Day.

I had a fabulous evening with friends last night. It was a perfect end to a not so perfect week. Last night I ate most everything I am not supposed to, and I thoroughly enjoyed it. It was a conscious choice and almost certainly swayed by the fact I was having a flare up anyway – what’s a couple more days pain once you’re in it?

I have three suspects on my flare list. Number one – gluten. Straight forward, right? You’d think so. But it was an accident. I was making pasta for the kids – they don’t always eat everything I do – and I cooked the carrots in with the pasta. When I dished up, I absent-mindedly ate a few of the carrots. Oh. There’s gluten in the water and probably soaked all the way into my otherwise innocent carrots. What an idiot. So, instead of having a lovely piece of homemade flatbread with garlic infused olive oil and parsley, the olive oil dripping down my chin, whilst I savour the moist, hot, doughy piece of heaven….I got carrots. Idiot.

Number two: Lady’s time of the month. Boo. ‘Nuff said.

Number three: Walnuts. A conscious decision to have walnuts, as I had already started to flare from either Suspect One or Suspect Two. Ed made an amazing dinner of organic chicken breast, filled with pesto, with a side of sautéed cabbage and paris mushrooms. The pesto recipe came from my Well Fed cookbook and it happened to include walnuts. It was delicious. Walnuts may not have been the culprit, but as I was on a downward spiral already, who knows?

So there we go. By last night, I had already flared up pretty bad. My decision to slowly reintroduce foods was thwarted again, by an accidental ingestion of gluten, damn hormones and well, a slippery slope from there. So, last night we had this:

An appetiser of julienne cut raw carrots and radishes, with a creme fraiche and chive dip (I didn’t have dip). Then I made the aforementioned flatbread, dripping with roasted garlic infused olive oil and parsley, cooked on a pizza stone ( I had a bit of this – first time I’ve had flour in three months).

For main we had marinated a huge rump steak in olive oil, salt and pepper in the morning and left it all day. The same with two duck breasts, skin on. We also had pork strips, just ‘nature’. Just an hour or so before dinner, we squeezed the juice of a Sanguinello orange (blood orange) into the duck marinade.

These were cooked on our BBQ and seared with a salad of rocket, iceberg lettuce, thinly sliced fennel, sliced radish and diced cucumber, with a Sanguinello, lemon and oil dressing. The combination of all the meats and the salad, especially with the citrus dressing was amazing! I probably enjoyed this food the most, despite the other food indulgences. There’s nothing quite like grilled meat with an amazing salad.

My other downfall. Wine and pudding. Ty had made an amazing apple crumble and once I started tucking into this, I helped myself to quite a bit! It was probably nothing compared to the portions I would have had before, but I guess there is no such thing as a ‘good’ sized portion of flour, butter and sugar! We drank 3 bottles of quality red wine and finished off with some organic Brie and Tommes cheese. Heaven.

I woke up at 4.30 am in a bit of stomach distress and with a headache. I had one (usually prohibited) ibuprofen, lots of water and went back to bed.

So, here it is. Hangover Day. But this morning I feel good. I had a great night. I didn’t beat myself up about what I ate and today all I am craving is salad. I am not in hideous pain (yet!) I hope I stay on course and that my flares go as quickly as they came. Roll on beautiful Sunday!

 

The autoimmune protocol diet in baby steps.

This time last year and hadn’t even considered giving up any of these foods. A couple of month’s down the line, I had started a “Paleo” diet, having read a little about how Hidradenitis Suppurativa could be an autoimmune disease and therefore influenced by diet. At that early stage, I knew then that I’d never be able to cut out eggs if I was hoping to get enough protein in my diet without bankrupting us. I definitely could never have envisaged living without tomatoes, spices and chilli – my staple foods for cooking up tagines, curries and most of my evening meals. Six month’s down the line, and many hours of research on the internet, my diet is almost virginal (slight exaggeration, but that’s how it feels sometimes!). I am a fully fledged autoimmune protocol diet fan!

What I should be drinking right now…..

As with any times of restrictions in life, I found that it helps to have some kind of boundary or end date in sight. Without this, my motivation to abstain wouldn’t have lasted past my¬†initial¬†pain-motivated, stubborn determination. I set my timeframe as 60 days of a complete elimination diet, before starting to¬†reintroduce¬†foods one at a time. Somedays, I would comfort myself with the fact that I may only need to do 30 days and other times, I would face the (sometimes depressing) reality that this diet may become my way of life. Forever. However, for the sake of sanity and positivity, it is good to keep in mind that there are definitely worse realities in life than this!

….what I’m actually drinking right now
(NOT recommended for AI elimination diet!)

Just snacking on a piece of fresh coconut with a lovely cup of freshly brewed cup of Fairtrade organic Ethiopian coffee (which should read ‘a lovely cup of organic mint, nettle and¬†gunpowder green tea’, but no-one’s perfect!) ¬†and thinking that I’d share a little of what I have read and researched in terms of things to avoid whilst on the autoimmune diet.¬†Despite it being a little negative to start with what I¬†can’t eat, it is a known fact that bad news is far more exciting/interesting than good news…so we’ll start with what we can’t eat….

Foods to avoid

  • Eggs
  • Dairy, including all dairy (yes, even fermented dairy, goat’s milk and any thing else that comes from an animal’s udders)
  • Cereal grains¬†(rice, oats, wheat etc)
  • Seeds of any variety.
  • Seed and vegetable oils¬†(all except coconut oil and olive oil, which I have in abundance – see Foods to Eat’)
  • Spices derived from seeds (cumin, coriander, mustard – anything which I used to eat that made my food taste good)
  • All nuts, including nut butters.
  • Legumes, including all types of beans, chick peas (garbanzas), lentils, soy, peanuts etc.
  • Any soy derivatives (soy milk, yoghurt, tofu, soy sauce)
  • Refined sugar in any form.
  • Honey in any form.
  • Processed foods – bread, pasta, any gluten-free ‘health’ alternatives, cured meat, ham, bacon.
  • Alcohol (boooo)
  • Nightshades. This includes tomatoes, all types of peppers, including bell peppers, pimento, chilli pepper (excluding black peppercorns), egg-plant, tobacco (not many people still eat this, but you probably shouldn’t smoke it either!) and common old potatoes.
  • Coffee – especially if you are a caffeine addict! (I am not a coffee drinker per se, but I have started to have a cup here and there, in the name of¬†rebellion¬†and inner freedom. Also, I haven’t noticed a reaction from it….yet)
  • Fruit juices (too much concentrated sugar, not enough fibre).
  • Any food that contains an ingredient that you cannot pronounce, like stock cubes and sweeteners and anything containing sweeteners, like sugar-free gum.
  • Many vinegars ¬†– I even avoid organic balsamic vinegar; I think the ‘concentrated grape must’ contains too much sugar.
So it’s not a long list, but the combinations of processed foods out there are endless. Dark chocolate, carrot cake, “Paleo” muffins, cereal bars, smoothies, V8, gluten-free crackers – so many things that look innocent (ooh, Innocent Smoothies – yum yum…No. Stop it. Illegal), but are now off limits. Melissa Joulwan, author of Well Fed, a beautiful Paleo recipe book, tried the autoimmune diet for 30 days and as she puts it, there is zero “food fun” during that period.
Anyway, enough of what can’t be had and onwards and upwards to what can and should be delightfully savoured in the name of self-healing….
Foods to Eat
  • Fresh vegetables – anything in season, although when your diet is so limited, I’ve found it’s better not to fully restrict yourself to keep some variety and sanity in your life.
  • Beautiful squash and versatile sweet potatoes (I know these are vegetables, but they become your “pasta/rice replacements”, so I think they deserve a line on their own)
  • Fresh fruit – I have read so much about limiting fruits, eating one piece per meal, eating them before dinner not after – oh so many pieces of advice, but I just tend to eat as much as I want. It may have a¬†negative¬†affect, but it’s got to be better than eating a handful of Haribo Tangfastic jelly sweets.
  • Fish – preferably wild and line caught.¬†
  • Grass fed beef¬†and¬†pastured meat of any variety and game.
  • Poultry, again organic and not battery farmed would be best.
  • Coconuts, coconut oil and¬†coconut¬†milk (preferably (homemade!) with no guar gum and BPA-free- although hard to find unless you have dedicated organic shops).
  • Olive oil and olives (organic as non-organic contain various preservatives).
  • Herbal teas (I’m bang into Jasmine green tea – amazing!)
  • Naturally dried fruit (although I’d avoid this as a staple ingredient as it’s too high in sugar).
Ok, so the ‘Foods to Eat’ list looks shorter, but when you consider all the amazing varieties of fruit and veg in the world, it is an endless list of variety and choice.¬†I know that to back this all up I should include all the yummy recipes that we try every week, here at home. One day I will, but until then, I’ll leave it to the experts, like Michelle Tam from nomnompaleo.com¬†and Sarah Fragoso from¬†Everyday¬†Paleo.
 
Until then, I am back on my autoimmune ‘wagon’, and hoping to start reintroducing foods in the coming months. For all those who are embarking on this journey, it is baby steps all the way and a constant reminder to “be kind to yourself”. Bon courage!
 
I’d love to hear people’s experiences of how they have survived the elimination diet and things that have or haven’t worked…..
 

I am not a physician, licensed dietician, nor nutritional specialist. The dietary information provided is not intended to diagnose, treat, or cure any illness or to provide medical advice. it is advised that you make your health care decisions based on your own research and the advice of a qualified health care professional. Good luck!