My healing journey - phase 2
Finding your personalised healing protocol
From the moment I was diagnosed, and throughout the months that led up to my misguided FODMAP adventure, my tireless research kept bringing me back to the same solution - The autoimmune protocol. A modified version of the Paleo diet, the 'AIP' is specifically tailored to manage and reverse the symptoms of autoimmune disease. The aim of the protocol is to eliminate all foods that may trigger an inappropriate immune response within the body and any that may irritate the digestion. As with the Paleo diet the focus is on nutrient density and correcting any deficiencies you may have. I read so many case studies of those who had embraced the AIP lifestyle and watched a lifetime of symptoms fade, as their conditions were put into remission by this miraculous diet. I read blogs, I browsed articles and I scanned recipes. I wont lie - it looked extreme. Too much like hard work and just downright unappealing. I couldn't begin to comprehend how anybody could function on such a limited and uninspired diet and how that much meat could possibly be good for you. It looked so excessive I began to wonder if the AIP community was some kind of carnivorous satanic cult with obscure and nonsensical beliefs about the healing powers of food. I suspected witchcraft. There was no way I was going to follow a diet that encouraged stewing bones and eating animal organs. I dismissed it repeatedly despite its claims to alleviate my most troubling symptoms. It just wasn't appealing enough for me to buy into it. It was missing the allure that the glossy magazines give to all these trendy super food diets, it just wasn't very photogenic.
In March of 2015 I turned 30 and decided to commemorate this hideous occasion with a trip to Paris. By this point I had given the low FODMAP diet everything I'd got and more. Although my health was better than it had been three years previously, I still wasn't where I needed to be. I'd spent so long on this elimination diet - what should have been 6 weeks quickly became over a year. I decided that I'd served my time and if there were ever a place to treat myself to a few cheeky re-introductions it was in Paris. My husband and I spent a long weekend indulging in gluten free versions of everything typically French. We even had a full multi course breakfast in an entirely gluten free patisserie - bacon, eggs, pancakes, smoked salmon, bread, croissants rounded off with some kind of iced choux pastry bun bursting with custard. It was blissful and I savoured every sugar laden second. My stomach even did me the honour of not complaining afterwards. This was it. My hard work had paid off and I was on the mend. But clearly I was so hyped up on sugar and the heady delights of my Parisian jaunt that I missed all the warning signs, after all what goes up must come down. I didn't so much 'come down' after my gluttonous Parisian binge, I crashed hard in spectacular fashion. As soon as I returned home the irrational tears came, the moods swung and the hair loss increased dramatically. Every symptom I had ever had decided to make an appearance in some form or another. I was furious and disappointed in myself. I'd spent so long trying to heal and a few delectable treats later and I was back to square one. I hadn't eaten gluten. I hadn't even eaten that much in the way of FODMAPs, but whatever had happened, I was right back in autoimmune hell. I suffered for an entire month after and concluded that nothing I had eaten in Paris was worth this heart ache.
To add to my misery, when I returned from Paris I received my most recent set of thyroid blood results. I was being monitored every three months at that point. My TSH levels were still sky high. I just didn't understand, I thought I was doing everything right. My doctor recommended I commence with thyroid medication immediately, but I just couldn't bring myself to do it . I begged for three more months to try and rebalance my thyroid naturally with diet. He scoffed condescendingly, but decided to humour me, all the while assuring me that my TSH would only get worse and the next time I returned I would have to accept the medication.
I was desperate. I was so anti medication that I was prepared to do whatever it took to reclaim my health naturally. And sometimes when you are desperate you turn to witchcraft and carnivorous satanic cults.
I discovered the work of Sarah Ballantyne - The Paleo Mom, who had created the autoimmune protocol after years of thorough scientific research. It appeared that Sarah was in no way a witch or maniacal carnivore, but in fact a very clever lady with a PhD to boot. She didn't just spout claims, she backed it all up with enough science and logic to make your head spin. Now that I had seen the science behind the reasoning coming from a very credible source, the diet suddenly got my attention. Before I began, I had to address one major concern. I had struggled so much on the low FODMAP diet without any real guidance or resources, that the thought of eliminating more food terrified me. I was at my lowest ever weight and I couldn't afford to lose any more. More troublesome still was that the AIP requested the strict elimination of all nightshade vegetables, eggs and rice. My low FODMAP diet consisted mainly of those very ingredients. The AIP also encouraged the consumption of red meat for its rich nutritional value - something I had never even contemplated before. After all we are living in a society that demonises red meat as a contributor to a wide array of life threatening diseases. I now realise how ironic it is that we vilify red meat - one of the most nutrient dense foods on the planet, but happily send our children to school with a packed lunch of white bread, chocolate biscuits and crisps without giving it a second thought.
I went in search of the seemingly impossible - a low FODMAP version of the AIP diet. There were a few recipes floating around on line, but they didn't fill me with inspiration. I had stumbled across an assistant of Sarah Ballantynes whose name kept cropping up - Christina Feindel. I was literally close to tears when I discovered Christina had produced an entire collection of low FODMAP, AIP recipes. And this wasn't a thoughtless collection of thrown together dishes, this was a months worth of carefully planned and nutritionally balanced meals. Meals that encouraged batch cooking so you could enjoy leftovers for lunch and had plenty of options for breakfast. Christina's considered approach meant that I didn't have to panic about calories, or whether I was consuming a balanced diet or if I was going to breakout in some hideous reaction. This low FODMAP, AIP plan became my bible, and still very much is.
I threw myself head first into a rich, nourishing diet of vegetables, very little fruit and high quality meat. And yes, I even bought a slow cooker to boil bones and started consuming liver - what's more I enjoyed it.
Over the course of the next two months I felt things beginning to change slowly and steadily. My moods began to feel slightly more even, my hair loss lessened, I got off to sleep much better though I still woke throughout the night, my digestion felt calmer and I slowly began to gain weight. No matter how much I ate on the low FODMAP diet I couldn't put on an ounce. I was absolutely loving my recipe plan and felt like I was making steps in the right direction, all by simply eliminating a few select foods. This just serves to prove Sarah Ballantynes point - those non AIP low FODMAP foods (potatos, eggs etc) were inadvertently exacerbating my condition and halting my progress. I kept going with no intention of making any re-introductions. I was adamant I was going to get this right and I was more than content with what I was eating. Over the following three months things began to improve further. I felt so much better in myself and had phases of just feeling like a normal functioning human being again. My anxiety disappeared almost entirely and feelings of stress seemed to lessen. 6 months into the diet and my skin was silky smooth - it had NEVER felt like this. My aches and pains lessened, my body temperature improved, the pain in my leg disappeared entirely and I returned to my optimum weight. And when the weight returned, so did my menstrual cycle.
I returned to the GP to have my thyroid labs repeated. My TSH level had dropped slightly and my other thyroid levels had improved. He told me I was an anomaly as my results were not following the expected pattern of getting worse. I dodged another bullet and he let me escape again without a lifelong prescription. He gave me another 3 months before I needed to return again.
I was fully sold on the AIP diet and 100% committed. What felt like hard work initially, and a hell of a lot of cooking was paying off. It very naturally became my way of life and way of eating and I didn't feel deprived. I continued to read the stories of others who had triumphed and I no longer felt the isolation and desperation I had on my low FODMAP diet, I felt a part of the wider AIP community of success stories.
During one of my AIP google marathons I discovered 'Grazed and enthused' the AIP and Paleo labour of love by Alaena Haber. And I could not stop smiling. I bookmarked that bad boy instantly. The recipes are to die for and I have adapted them to suit my additional intolerances where necessary. Not only are the recipes awesome but Alaena is hilarious. Her posts are full of charm, sarcasm, humour and hope that there is a life to embrace after an autoimmune diagnosis, and sometimes quiet frankly you need a moment of silliness to keep you going.
These three aforementioned ladies - Sarah, Christina and Alaena have added the sparkle and the glamour to the diet that I failed to see first time round. I have made leaps and bounds with my health thanks to them and I am exceptionally grateful for the resources they so generously share. I wholeheartedly recommend checking them all out if you are on an autoimmune journey of your own and looking to manage your symptoms.
Prior to the AIP I would have put my health at about 50%, even on a gluten free diet. But I honestly feel the AIP has taken me to about 90%. I feel so much better in general that I almost forget what my symptoms felt like in the first place. What's just as important is learning that for all its phenomenal healing capabilities, your diet will only take you so far - there is still a bigger picture that contributes to your overall health and wellbeing. But once you have got your personalised protocol down, you will have built a strong foundation to support you with any other lifestyle changes. For me, those additional changes are the final phase of my journey.
My favourite AIP resources:
The Paleo Mom - Sarah Ballantyne.
Absolutely everything you could possibly ever need to know about the standard Paleo or AIP diet, plus a whole heap more. If you suffer from any kind of autoimmune condition, Sarah's research is a must read.
A clean plate - Christina Feindel.
Here you will find a whole host of amazing allergen free recipes and resources to support all your dietary needs.
Please note if you follow the AIP low FODMAP plan in the UK, you will need to make a few substitutions on some ingredients unless you have a well stocked international foods store nearby. However I had made these work very well with substitutions - please feel free to email me for suggestions.
Grazed and Enthused - Alaena Haber.
A whole lot of fun and fabulous food. This is what elimination diets should be about.
DISCLAIMER: The information on this blog is purely based on my own thoughts, views and opinions. I am telling these stories to share my experiences with you. The information does not constitute medical advice of any kind and is not intended to substitute the advice of a medical professional. You should consult with a registered GP for guidance on any health related issues and not make any medical decisions based on the information contained within this site. I have no medical training, I am quite simply a coeliac with a story to share.
My healing journey - phase one
Elimination diets - a cautionary tale
After my diagnosis in Christmas 2013, and my brief flirtation with gluten free products, I was on a mission to reclaim my health and my sanity. I started researching and reading day and night. If food got me into this mess and had the power to create so many symptoms, then surely it could help me out of it too.
Super foods were big news and I went hell for leather on them. Goji berries, flax seed, raw cacao, chia seeds, coconut oil, maca powder, quinoa, pumpkin seeds - if David Wolfe wrote about it, I ate it. I was sold on their nutritional properties and all the touted benefits that came with them. Anti – inflammatory, anti-oxidant, hormone balancing, digestion soothing and all the rest. I watched ‘Food Matters', an awe inspiring documentary about the health and food industry so many times I was quoting it in my sleep. By the way, if you haven’t seen it – you absolutely need to. I started to detox and cleanse my body with fruit and vegetable juices and eliminated all refined sugar from my diet, replacing it with agave syrup.
I had a bit more energy, I lost weight, I felt…ok. On a standard day I would have gluten free oats or chia pudding for breakfast with almond milk, coconut oil, raw cacao powder, pumpkin seeds and a mountain of berries. For lunch I would have quinoa and salad with olives. Dinner would be all manner of veggies and pulses with chicken or fish and loaded with garlic for its multiple medicinal properties. I was doing EVERYTHING that the health foodies in all the shiny magazines were doing. But I didn’t feel like they did. My hair was still falling out, my eyes were still swollen and purple. I still had shooting pain down my legs and my moods and hormones were very erratic. I wasn’t sleeping well and I had moments of feeling very low. I would get so upset at the slightest thing with very little rational reason. I was trying to manage my stress with yoga, but would abandon the yoga mat because the peace and stillness would aggravate me even more.
I persevered and kept consuming the foods in vast quantities and juicing everything in sight. I knew healing would take time so I was prepared for the slog.
I carried on this way for a year and a half. Yes, I undoubtedly felt better off the gluten. I was less tired, less anxious and felt better in myself overall. But too many niggling symptoms still remained and I couldn’t understand why a year of juicing beetroot and half-arsed yoga hadn’t taken this away.
I decided I needed help. I found a nutritionist and we began working through a mammoth questionnaire relating to all aspects of my health. We talked through my symptoms, emotions, past traumas, stressors and their impact on my health. Sometimes its not until you are asked to specifically note these things down or round up your life events in a few paragraphs that the obvious just smacks you in the face. I had experienced everything on the list of stressors in a very short space of time. Combine that with a body under attack from itself and it was never going to end well. We talked about the steps I would need to take to get back on track and I was warned that the body might take as many years to heal as it had done to damage itself. But I was more than up for the challenge and raring to go.
Firstly, I was going to need to make adaptations to my diet. Based on the digestive symptoms I was still presenting, a low FODMAP diet was recommended. This would explain why for me, a super foods diet was not the right approach. I was clearly struggling with FODMAPs and in my juicing hysteria, I was inadvertently drinking myself into tummy ache. Not to mention the world of pain all those garlic cloves were causing.
The protocol I was to follow was to:
Remove – all food irritations and intolerances
Repair – The damage to my digestive system
Replace- The necessary enzymes and acid
Re-inoculate – My gut with probiotics
Re-introduce – Foods that I have eliminated
When you look at the protocol it makes perfect sense. And once you get the right diet for your needs – this protocol is the foundation to any digestive healing program.
I immediately cut all moderate and high FODMAPs. Now I know people often and understandably find elimination diets difficult to adhere to. No one willingly wants to give up the cookie dough ice cream. But I will always commit, 100%, to the letter. No cheating, no exceptions. I put this down to a lifetime of health anxiety and the overwhelming desire to take back control of my health.
So the FODMAPs were kicked to the curb. To assist in the protocol I was given an array of supplements. Supplements to soothe and heal, to balance gut bacteria, to support my intolerances to food and to break down and assimilate much needed nutrients.
For the first few weeks I was blissfully content and positive I was on the mend. Creating meals was difficult but I was convinced it was worth the effort. After all, this was a 6-week protocol, and then I could start re-introducing FODMAPs.
But I found it increasingly hard to know what to eat and my ‘allowed’ list seemed to be ever shrinking. My diet started to revolve around some low FODMAP staples – eggs, potato’s, rice, tomato’s, peppers, fish, meat and root veg. I had very little to no red meat on the basis that I had been brought up understanding the dangers too much consumption posed to your health.
When the 6-week mark came around I began to make my food re-introductions. I sampled the tiniest amount of avocado to test my reaction and within half an hour I looked close to giving birth. I was so disappointed not to mention uncomfortably gassy. I waited impatiently for a few days for the symptoms to subside before attempting some sweet potato. The same reaction. I left the FODMAPs alone and I carried on with the supplements. I carried on feeling less than average but I persevered. A few weeks later I almost exploded with excitement when I discovered a recipe for a gluten free pizza base made from cauliflower. As it had been a few weeks since my last failed introductions, I thought id try again and whip up a pizza complete with a small sample of un-pasteurised mozzarella. I say ‘whip up’- it took hours. Have you ever tried to get all the liquid out of a minced cauliflower? Don’t bother. A half soggy, half burnt pizza later and my gut were expanding and my old lactose triggered head pain was back.
I had totally plateaued. In fact with the cocktail of supplements I’d been on, the elimination of the best part of my diet and the inability to reintroduce them, I felt thoroughly defeated and lost. My nutritionist suggested that given my digestion was in a bad way it would simply take some more time. So I started again. I scrapped the FODMAPs, ordered more supplements and pushed on. The problem was that I didn’t really have any recipes and I was becoming fearful of food and my reactions to them. Instead of cooking up a balanced FODMAP storm every day, I was merely eating a selection of low FODMAP ingredients - an abundance of eggs, potato’s and tomato’s in a variety of ways. My symptoms were getting worse again and I was losing weight. A lot of weight. The issue was I didn’t have a great deal spare to be losing in the first place and my days became panic stricken with trying to get enough calories. I would eat mouthfuls of coconut oil just to try and desperately bump up my intake. I became obsessive and started tracking the calories in everything I ate and made myself stressed when it wasn't enough. People started to comment on my weight and I began to feel uncomfortable in myself, but I vehemently defended my diet in my misguided belief it was right for me. It wasn't until I looked back on photos of myself months later that I realised just how gaunt I was. Over the course of the next year I tirelessly pursued a low FODMAP diet of a few select vegetables, eggs and meat, just waiting to get better. I lost two stone in weight and I lost my periods. My hair fell out more and my hormones took me from euphoric highs to crashing lows. I discussed my concerns about my weight and losing my periods with my nutritionist but she felt they were unrelated and dismissed them. This alarmed me and I felt she had not only been irresponsible, but also put my health in danger. The one thing that did start to improve in this time was my digestive symptoms. In the absence of the FODMAPs my bowels were more regular, I had little to no bloating and abdominal pains were becoming less intense and frequent.
But enough was enough and something had to give. I couldn't continue to lose more weight and I needed to find hormonal balance. I knew the FODMAP diet was helping me but it wasn't ticking all the boxes. My digestion was improving in many ways but all my other symptoms remained or were exacerbated by my new limited diet. I felt like I was missing the bigger picture somehow so I continued to look elsewhere for answers to heal my entire body.
For me, I have learnt that a low FODMAP diet is a very valuable tool when suffering with digestive issues as a result of food intolerances and IBS. However I didn’t have the correct resources or support I needed at the time to use the diet to my advantage. I cannot stress enough how important it is to find recipes for balanced low FODMAP meals to ensure you are still meeting your individual needs. I have since found the missing part of my dietary puzzle, which I will share with you in my next post, and how I have successfully incorporated and adapted my low FODMAP diet into this with great success. I am also pleased to say another year on and I can happily eat avocado and sweet potato without having to unbutton my jeans.
This blog tells an ongoing story about me and my journey back to health and happiness. A boho soul always looking for my next European adventure. I am a Coeliac, Yogi, paleo advocate, dreamer, Bon jovi connoisseur, sun worshipper, snuggly jumper wearer and wife to my lovely Paulie.