My Story Through AS and Out the Other Side
This Q&A originally appeared here: https://starchfreefeasting.com/?p=7821
This Q&A originally appeared here: https://starchfreefeasting.com/?p=7821
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
Thankfully I am no longer dealing with any health issues – at all. I have been completely well for about 5 years. But it wasn’t always that way…
I first experienced mysterious lower back pains in my mid 30s. The pains would come and go – sometimes they were so bad I had to lie on the floor, but most of the time they were manageable. I thought they were due to my posture at work, so I saw a chiropractor and changed my work set up, but to no effect.
When I turned 40 things got worse. I started getting heel pain which was almost constant – and maddening! To have pain from your first step of the day to your last was really uncomfortable, and I developed a strong limp, which was very obvious, and began to affect the way I saw myself (and how others saw me of course). Again, I thought it was due it the wrong footwear or something like that. The pain continued.
I knew something was really wrong when my toes swelled up into ‘sausage toes’. The pain also worked its way up my body – to my hips, back, shoulders and even my jaw. Also, I noticed the pain could ‘hop’ around my body from day to day.
My doctor was initially puzzled and it was only after a blood test showing I had raised CRP and ESR levels (showing high inflammation), and also low HGB (showing anaemia) that he sent me to a rheumatiologist.
The rheumatologist visit was disappointing and depressing. For a start, the rheumatologist didn’t even see me, only his assistant did! He then relayed his findings to the rheumy, who prescribed me methotrexate. To come back home with a vague ‘diagnosis’ of an umbrella term like ‘spondyloarthritis’ and a bag of methotrexate was a truly depressing experience.
When were you diagnosed with AS?
Dissatisfied with this visit, I went to a private, ‘family’ doctor which my uncle kindly paid for. He was very old school and did a thorough examination. He diagnosed me with AS. I think I was 42 at the time, so probably 7 years after my first symptoms had appeared. He warned me of the dangers of methotrexate, told me to swim as much as possible, and prescribed painkillers (Naproxen). Although a distressing diagnosis, it was something of a relief to finally know what I was up against.
What has been your approach to healing?
Following this doctor’s advice, I decided only to take the methotrexate as a last resort. Researching AS on the net I found a lot of scary information about how the disease was likely to progress. I was in a distressed state, caught between constant pain and near panic as it dawned on me that this could be a lifelong condition. I was also very apprehensive about taking the methotrexate as I was aware of its potential side effects.
I determined to try everything else I possibly could to impact the disease first, and if nothing worked, I would take the methotrexate.
What led you to first try a healing diet approach?
Through researching on the net, and also asking friends and family I became aware of some stories of diet having a positive impact on similar conditions. So I began to change my diet, to see if I could lessen the pain. I read a book called ‘Arthritis: Allergy, Nutrition and the Environment’ by Dr. John Mansfield which confirmed to me a link between symptoms and diet. Then I continued researching online and reading. I hunted out success stories, and put into action what people said had worked for them.
What was the lowest point on your health journey?
There were many.
One occasion that sticks in my mind happened on New Year’s Eve shortly after my diagnosis. Everyone else had gone out to celebrate. I was sitting at home on the sofa, watching TV, in immense pain. I decided I might be better off if I lay on the floor. It took approximately 30 minutes to get myself onto the floor from the sofa – I was that disabled. Once on the floor, however, I realised the pain was just the same. It took me another 30 minutes to get back on to the sofa.
Other low points included: speaking to friends and being unable to concentrate on what they were saying because my head was swimming with pain; at work having to lie down in a prayer room and just crying my eyes out with pain; being unable to do simple tasks like cooking a meal or looking after my young kids. And knowing that this disease was likely to be incurable and lifelong.
Which healing diet protocols have you used?
I’ve tried every diet that I thought could help – elimination diets, the London diet, AIP, low starch, no starch, and finally GAPS. I don’t know if you’d call it a diet, but I also tried fasting (2 x week long water fasts with colonic irrigation – an eye watering experience!)
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
Most of the diets helped to some degree, but the results of most were unpredictable and incomplete. When I fasted, my symptoms definitely decreased. But they reappeared upon eating again (even when slowly reintroducing foods, 1 new food every 2 days). I certainly had some success with low and no starch diets. The overall level of pain and symptoms reduced. But I would still have difficult times. Sometimes I would be really strict with my diet, but my symptoms (and blood results) would show that the disease activity was still very high. Other times I was less strict and yet I felt slightly better. It was often mystifying. Despite keeping a very close note of what I ate and when, it was not a linear process.
I found the GAPS diet, which cuts out all starches and sugars, and focuses on healing the gut, to be the most successful. This was the diet I was on when I finally became completely well. Over a period of several months, my symptoms began to slowly evaporate.
What foods are you most sensitive to? Which foods do you avoid?
For the past 5 years I have been able to eat whatever I want, with no sensitivities.
When I was unwell it seemed I was sensitive to almost everything, but in particular, the things I had always eaten a lot of: pasta, breads, biscuits, sugary snacks. This always seemed worst around Christmas, when there are so many ‘treats’ to eat – for example sugary mince pies. I was mostly vegetarian before going low starch and had to get used to going without my starchy staples; they were probably the things I was most sensitive to.
Share any personal victories your real food journey has helped you achieve!
Ultimately, to heal my gut and stop the autoimmune response that leads to the pain and symptoms of AS. Which is such a massive victory that it puts almost everything else in the shade.
Where do you source ingredients for your recipes and daily life?
Usually from local markets. I try to buy the best quality meat available that we can afford. Some meats are extremely nutritious and amazingly cheap – like lamb’s liver. I love to buy organic veg, but with 2 teenage boys the amount we consume as a family makes it unaffordable. Organic eggs are quite widely available. And once you cut out the super-processed, packaged foods, you find you have more to spend on the quality, unpackaged, less processed good stuff!
What you eat when you are HUNGRY (or HANGRY!) and need something quick?
Preparation and planning is vital. As convenience foods are not really an option on the GAPS and other diets, I always planned ahead as far as was possible – big batches of soup which could be frozen, bread alternatives which could also be cut up and frozen, and generally cooking in bulk.
I would always carry something to eat around with me. Brazil nuts and some fruits make quite a decent snack.
What is your go-to easy breakfast? How do you start each day?
It used to be bacon and eggs, sometimes with a 100% meat sausage too, plus a slice of low/no starch bread. It was actually very hearty and something to enjoy.
What are alternative therapies you have used?
Kinesiology, mindbody connection, emotional healing, yoga, meditation, tai chi, chi kung, amalgam filling removal, LDN.
It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you joy?
Painting and drawing. Nature and walking in nature, walking by the river, by the sea. Meditation. Friends and family. Keeping a diary or journal to make sense of it all. Sitting in the sun. Doing yoga and relaxing. Speaking with others who are sharing similar pains.
What are words of wisdom you’ve learned on your journey?
It is possible to get completely well.
What advice do you have for people who are just starting out?
Don’t scare yourself too much by roaming around on the internet reading horror stories. Gravitate towards success stories. See what methods other people have successfully used. Don’t panic. be patient. Keep an open mind. Practise trial and error. Aim to have a positive impact on your symptoms. Look beyond simply physical remedies. Consider your wider lifestyle. Minimise the toxins you ingest and put on your skin. Find your optimum diet. Engage in gentle exercise. Be as hopeful as you can. Drink plenty of water. Learn about supplements and which are worth taking. Befriend your body rather than battle it. Keep a journal. Set positive goals and work towards them. Get out in nature. As much as possible do things you enjoy, like hobbies. Try meditation. Create positive habits for your body and mind. Heal your gut. Learn to relax as much as possible.
Chris is a health coach and offers 121 sessions and a mentorship course specifically for AS.
You can get in touch with him on email: chris_bailie@hotmail.com or Instagram: healing_ankylosing_spondylitis