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Natalie

In mid 2009 I found myself unwell overnight, with extreme tiredness, a chronic gallbladder attack, yellowing skin and eyes, and chronic nausea.  Some hours later I was admitted to AKL City Hospital’s Liver Transplant Unit, as all signs indicated chronic infection of the liver (fatigue, abdominal pain, nausea, jaundiced skin).  Many days later and with my bloods being negative for: Hep A, Hep B, Hep C, Hep D, Hep E and Non Hodgkins Hepatitis … my blood work confirmed Acute AutoImmune Liver disease, with an overwhelming ALT of  2559 and AST of 1171 (count of a healthy liver,  between 5 – 45 for females)..

The inflammation on my liver, was treated with a steroid (Prednisone) immediately, and additionally I started on Azathioprine, an immune suppressant.  This is the same drug given to Organ Transplant recipients.  It works by suppressing my immune system enough for it ‘not’ to destroy foreign (tranplanted) liver cells, in my case, it stops my immune system recognising my liver cells as foreign.  Immune suppresion is usually for life, but at some stage (once stable) you can begin to find some efficacy – the best effective dosage for you..  Today I am successfully taking 50% less of the daily dose that I took for 3 years, through a soundly managed (reduction) plan to reach a place where I was taking the least dosage, that is still effective..  Personally, the biggest adjustment was to accept that (dietary, lifestyle) change was needed, and to go ahead and support a lifestyle that is ‘immune system/liver’ sensitive.

For me it was opportunity to ‘grow’ my intelligence about biology, nutrition and health.  I read and researched, and tried approaches that resonated with me.  I asked questions, (when I didn’t get replies, I wrote to important people).   I became ‘proactive’, I took charge of my health and responsibility of what I put into my mouth/body.  I supplement my diet with: LSA, organic yogurt, organic spirulina, brazil nuts, soya/nut milks, white tea (organic white tea leaves), green tea and roobois teas, and vegetables, all year round.

 



Kath

Hi, my name is Kathy and I was diagnosed with AIH 14 years ago (1998).  It came on very quickly, I became very tired and my skin started to turn yellow.  This sent me to my doctors where my bloods indicated chronic liver inflammation.  My ALT was over 1200 and my Bilirubin of over 400, which drew a diagnosis of hepatitis.

I went on to see a liver specialist, but quickly ended up in hospital, where I was fully diagnosed as having Auto Immune Hepatitis (AIH).  I was put on large doses of Prednisone to control the inflammation.  A few months later a liver biopsy further confirmed the AIH diagnosis, and now that the inflammation had reduced, I went onto Azathioprene, to lower my immune system.  Sadly this reacted with me and so I stayed on Prednisone for the next year, although my liver enzyme counts (ALT, AST etc) never normalised.  Changing to Cyclosporine my bloods finally normalised, but by this time there was significant damage to my kidneys and liver and after a second liver biopsy.

Today I am on Mycophenylate (CellCept) (immune suppressant), with little side effects.  All of my life I have enjoyed fantastic health and generally still do.  I suffer from tiredness and will never work full-time again, but I do what I can.  I love life and I love everything in life and this will never beat me..



jess-fisk
Jess

Here is a little insight of my journey with Ulcerative Colitis (UC) and how I have stayed in remission for 3 years, almost symptom free without any medication.

UC is a form of inflammatory bowel disease that has an incidence of 1 to 20 per 100 000 individuals per year. Symptoms of UC are generally not a favourite discussion for sufferers, not many people I know love sharing information about their time in the toilet! The main characteristics of the disease (when the disease is active and flaring up) include ulcers in the large intestine with symptoms including diarrhea, frequent toilet visits, stomach pains, bloody stools, mucus/pus in stools, bloating, gas and not to mention the exhaustion that comes with disease due to the inability to absorb nutrients efficiently and loss of blood resulting in anaemia. Anyone who has this condition or anything similar (Crohn’s Disease) will know exactly what I’m on about and the emotional drain that comes with it.

Current literature states there is no cure for UC, however there are a number of drugs that aim to keep the disease in remission. Genetics plays an important role in UC (my grandmother has the same condition, however due to severity has had part of her colon removed). The most common drugs used for treatment are Immuno suppressant drugs. These drugs are usually successful because they reduce the activation of the immune system. As the disease progresses or during a flare up the use of Corticosteroids such as Prednisone can work wonders due to their short term fast healing effects. Yet, like any pharmaceutical drug we are only putting on a band aid and not getting to the root cause.

Every person with UC will have their own story and how they manage the disease. But, sadly many will take the medication only option without realising there may be hope for them in a more natural way. This was me up until 3 years ago.  I just want to make clear that this is my story and what has worked me, not necessarily for you. Although, with the evidence mounting up in favour of a more Traditional/Paleo style diet to improve and/or heal auto-immune disease I can’t help but feel my lifestyle has helped me get to where I am now and I want to share my story with as many as I can. It’s not much fun spending half your life in the toilet and remembering to take 13 pills a day (that was how many I was taking at one point)!

I was 15 when I was diagnosed with UC and at this time of my life I was a competitive swimmer (training 9x in the pool), while on top of this I competed in Surf Life Saving and Waterpolo. I remember the diagnosis being very scary, but a little young and naive I guess I just brushed it off and thought it would go away.  Long story short, I gave up my dream as a swimmer and took time out to heal. I did what the doctor ordered, took my medication and gave my body a rest for the summer.  I got back into training eventually but my body was just exhausted, I was having B12 injections each week as I was anaemic. After many emotional tears I threw in my love for swimming and fell into a bit of a depressed state with everything that was going on.

I can’t recall the doctor discussing my diet with me, but I believed I came from a healthy family so this was not a concern for me. My diet back when I was 15 was better than your average kid having grown up in a very health conscious family with no junk in the house. All thanks to my Mum and Dad who live and breathe nutrition and health and have helped many people throughout their lives with the guidance of Dads ‘Insulin control diet chart’. I still agree with him that many of our modern diseases are probably contributed largely from an excess secretion of Insulin hormone which comes with eating a typical modern western diet.

I grew up on eggs on toast for brekky, nuts/fruit and tuna sandwiches for lunches and a meat and 3 veggie style dinner. But like all teens I still ate a lot of crap too. When I compare how I eat now, to back then, I would admit my diet was very poor at times. The foods below I believe I was eating in excess around the time of diagnosis that I now have eliminated/moderated (as much as I can) are: Vegetable oils, Refined sugar, Preservatives in all processed foods, Wheat, Protein powder, Alcohol. Junk food of any kind was the worst culprit as these contain the first 4 on the list in excess).

Fast forwarding 7 years of Azathiaprine, Predizone and Asacol…………………… Three years ago I settled in Margaret River, Western Australia on a self-sufficient sustainable farm. During my time here I learnt how to live a more sustainable way and lived a more simplified life. It was only for 6 months but during this time I learnt a lot about Permaculture and more to the point I spent endless hours researching nutrition on the internet. I was having a year out from my degree in Nutrition which I am so grateful for, as it lead to hours of research and internet trawling and the discovery of what are now some of my most reliable blog sources for information. Including Julianne Taylor! (www.paleozonenutrition.com)

A huge turning point for my diet I feel was the near elimination of grains. I can’t say I ate a lot of grains prior, but compared to my diet now – well, yes I ate lots of grains. I turned to raw milk as this was one of my daily tasks – milking the cow! We would drink raw milk in our coffees, make butter and use the cream for cooking. Probably sounds like we ate a lot of dairy but because I don’t eat cereals or porridge, milk is generally only added to a hot drink. I have not found dairy affects me and I feel raw milk may have played a role in my healing process. I eliminated vegetable oils as these have proven to cause a lot of inflammation in the body and tip the Omega 3: 6 balance. I eliminated refined sugar, obviously had the odd treat but while I was strict I wouldn’t go near it. I ate fruit but no more than 1 piece a day, I prefer vegetables anyway so don’t tend to eat a lot of fruit. I never have protein powders, I can see their place for convenience at times – but I aim to eat everything in its whole form and protein powder just doesn’t fit this category! It just seems so clear that more often than not when man has tampered with food it comes back and bites us in the butt eventually….

A typical daily diet for me now would be:

Breakfast: Glass of apple cider vinegar in warm water with lemon,  2-3 free range eggs with veges of any kind (often spinach or Kale), Sprinkled with dried seaweed kelp (high in iodine) and depending on the day there may be free range bacon, mushrooms or a little bit of raw feta (that I’ve recently started making myself). All cooked in coconut oil or butter if fried. Plus a coffee with either a dollop of cream or unhomogenised milk (raw milk ideally). Sometimes I’ll even throw in some of the previous night’s dinner if I’m running low on ingredients.

Occasionally I’ll  have a smoothie made with coconut milk or coconut cream (about ¼ can), tonnes of spinach or leafy greens, 1-2 raw eggs, half banana or berries and Cacao powder for flavour and added nutrients. My aim for my smoothie is nutrient dense, low-moderate carbohydrate and a good amount of quality fats (coconut, eggs and cacao).

Lunch: Protein of some kind (chicken, fish, red meat or lambs fry once a week). It’s usually always leftovers from the night before as I feel if you’re going to put in lots of effort to have a nutrient dense dinner then you may as well take the same for lunch. Beats reaching for a sandwich!

Dinner: Again, nothing fancy generally meat of some sort and LOTSSSSS  of veggies. I basically just throw as many veggies I can into a dish. I go light on starchy vegetables as I will put on weight by literally the smell if it’s too high in carbs! I generally base my carb intake on my activity levels so if I’m surfing lots then I will up my starchy veggie for a bit more energy.

Snacks: I tend not to snack because my meals are hearty enough to get me through. Plenty of protein and fat to keep me full without the need to snack. But, if I do my aim is to avoid grains e.g. at a dinner party I’ll snack on a few bits of cheese or olives etc and skip the crackers and chips (to avoid wheat (gluten). It has become routine for me to make bone broths and I try to have a cup a day. I have started experimenting with Kefir yogurt also to help encourage good gut bacteria.

This is a typical day for me.  Basically Paleo/Western A Price, without being excessive about dairy and legumes. But in saying that I would never put legumes in my shopping trolley as I prefer to spend my money on quality veggies and meat.  I’m unsure about the big dairy debate, I have seen success without the elimination of dairy but I’m open to the idea of that I could be even better perhaps if I eliminated it.

Exercise: I aim to do 2 weight training sessions a week and surf as much as I can to keep fit. I find too much cardio becomes too exhausting. I tend to go easier on the cardio as I can easily become exhausted if I do too much. It can also be irritating for the gut (all the jumping around) and I just find the long duration needed for cardio can lead to fatigue. I used to take part in CrossFit 3x a week which was the perfect amount of exercise I found and enough to keep me in a good shape without hours of plodding the pavement.

Stress: I believe that the amount of swimming training I did would have caused huge stress on my body and being genetically pre-disposed to an auto-immune disease it may have been enough to tip me over the edge, with a bad diet and alcohol thrown amongst it all. Exercise as we all know is hugely beneficial for our health and wellbeing, but too much exercise, often referred to as ‘chronic cardio’ can lead to chronic inflammation in the body.

Cosmetics: Not only do I care about foods I put in my body but I am also very aware of anything I might put on my skin. Call me a hippie but I truly believe that we are what we eat and what we put on our body so that includes cosmetics and all lotions and potions! Cosmetics contain thousands of ingredients that I have no idea what on earth they are and I don’t care whether they have been proven safe on a rat in a laboratory. It is not natural to dose the body daily with unnecessary ingredients so I feel the less exposure the better for my health. I use natural or home-made shampoos and toothpaste. I use coconut oil if I need to for dry skin and my make-up bag goes as far as Mascara, very boring! The amount of cosmetic products on the market continues to baffle me, I don’t see a purpose in most of them and not to mention how bad they must be for the body. I won’t go into sunscreen as I know how much dispute it causes, but I choose not to wear it – but I am sure to be sun safe by wearing zinc when necessary and cover up with clothes or find some shade, like the good old days.

In many ways I am grateful for going through this journey as it has taught me a lot about life and my own body, in particular how much food really does affect the way our bodies function. I have learnt through both research and trial and error that most modern processed foods will send my health on a downward spiral. I could be less strict, take medication and eat the foods that aggravate my symptoms when I like (grains in particular) but I prefer the challenge to control my condition as natural as I can. I love cooking and making everything from scratch so not only is it the best for my body, but it’s my passion. I find it really sad that modern society is so out of touch with the food they eat. For me, cooking isn’t a chore it’s just a way of life and I will always find time to cook no matter how busy I am. If you can’t find the time to eat well, health is not your priority – end of story! I haven’t met anyone in person who has UC and does not take medication, but thanks to the internet I have found others who follow a similar diet/lifestyle and are also symptom free.  I’m becoming fairly confident it’s not just luck! Eating the old fashioned way, the way our bodies are physiologically designed to eat just makes a lot of sense. A lot more sense than the hugely profitable food pyramid that’s for sure!

If anyone wishes to contact me regarding their own journey with UC I am more than happy to discuss further with you! I have a Facebook page that I share articles/recipes that I inspire me and hopefully others https://www.facebook.com/pages/Eatwise/160005027431439

Or alternatively jess.l.fisk@gmail.com, and now on Facebook:

Couple links to others who’ve had success following a wheat and/or grain free diet (these aren’t research articles, just personal experiences):

http://www.wheatbellyblog.com/2013/03/ulcerative-colitis-tamed/

http://robbwolf.com/2011/12/19/testimonial-the-solution-to-my-battle-with-colitis/

http://empoweredsustenance.com/about-2/



Seamus

Seamus McCaul

In 2006 I was diagnosed with a rare Auto-Immune condition, called Myasthenia Gravis (also know as the Rag Doll disease).  Myasthenia Gravis is a condition that affects the voluntary muscles where my immune system attacks the messages from my brain to my muscle receptors thus preventing my voluntary muscles from working.   Myasthenia Gravis is neither hereditary nor contagious. The cause of it is unknown.  There is no known cure at this stage.   It is an Auto-immune disease. It can be controlled to a certain extent by medication, that dampens down the immune system. A lot of people with MG have also 1 or more Auto immune conditions., as well as Diabetes type 2.

At the time I was working as a store Security Officer.  The first indication I had that anything was wrong was when I was driving home after work. My right eye kept closing. I had to hold my eyelid open with my fingers. That evening I had bad double vision. The following day my eyesight started to get worse. I noticed as people got near me, I was seeing less of them. My eyes appeared to be closing.

The GP was unable to find out the cause of my problem. I had numerous tests and x-rays but was still none the wiser. My general strength was going downhill. At night I struggled to breathe if I lay down. The only way I could sleep was to sit in a Lazy Boy chair and lean over an Ironing Board. I lost 10 kg in 14 days, as the only food I could eat was tinned baby food. Even drinking water was difficult, I could not swallow it.. I was referred to the A & E where I was subjected to between 8 to 10 hours of various tests, sadly the mis-diagnosis was stress.   It was suggested that I see a Psychologist.  After a couple of weeks my GP sent me back to the A & E as my condition had worsened.

At the hospital I was seen by a Neurologist. He did a couple of basics tests and was able to correctly diagnose ‘Myasthenia Gravis’.  Upon filling my prescription, I was. I was feeling almost normal.  As with most AI condtions, medication can control but not cure, in my case, Myasthenia Gravis.  Taking too much or not enough can cause or prevent what is known as a ‘crisis’. Although I can control it, there are a lot of variables that can cause MG to do its own thing.  There have been times when I’m crossing a road or it starts to rain when I’m walking, I try to hurry up but my legs slow down and on several occasions have stopped working altogether leaving me standing in the middle of a road. At times I am unable to swallow and my voice gets very soft or even disappears altogether.  My general strength gets very weak and even simple tasks become  ordeals. I have fallen a few times when I tried to stand up and found that my legs don’t exist (for a short time anyway).

Other effects of MG are Intolerance to heat or cold. In my case my optimum temperature is 17c. Any hotter and I feel wiped out. Short sleeves are the order of the day. Double Vision to overcome this I am supposed to wear an eye patch over my weakest eye. I have become allergic to a number of items ranging from Citrus foods (tomatoes,Kiwi Fruit, oranges etc) to the glue on plasters.

In 2007 we moved to a single level home. I could no longer walk upstairs. (Falling down was easier).  On the 29th December 2007 I finished putting the last block in the garden I was feeling worn out and was struggling to breath. An ambulance was called and I was taken to Lower Hutt Hospital where I was diagnosed as having a mild heart attack.  On the 1st January 2008 I had a triple bypass and a Thymectomy (for Myasthenia Gravis). It appears that my heart had stopped several times on 31/12/07 and the operation had to be done asap.
Over the next few years I was admitted to hospital several times with breathing and other problems. As a result of the Myasthenia I have to avoid certain medications as these can cause problems. (Basically any medicine with ‘cin’ at the end, or any medicine that works on muscles ) Most of these medicines are commonly prescribed. I suffer from leg cramps. I was prescribed ‘Quinine’ at one stage. This is a definate non starter for anyone with MG.  Most GPs have heard about MG but have never come across it.  The instances of Mg was 1 in 100,000. The degree of MG ranges from occular to general. Occular affects the eye only. General affects all the voluntary muscles. I have general MG. My first indication was the inability to control my eye lids, then gradually my muscles started playing up. With rest the muscles returned to normal until they decided to stop working again. The only way to control MG is to dampen down the immune system so that the message get through thus enabling the muscles to work. The downside is that with the immune system shut down there is a possibility of catching any illness doing the rounds. I have Diabetes Type 2 (controlled by Insulin and Tablets) and Rhuematoid Arthritis.

I have had to give up work and other activities involving the use of muscular control. My muscles like to control themselves and me. Short term memory loss can happen any time.  I can walk from one room to the next and in that time forget why.  My balance is not good and even stepping down of a kerb can cause me to almost topple over.  My voice can sound very weak and sometimes disappear altogether but it comes back eventually. (abridged by AINZ).



059

Jen

I have always been an outdoor and active person.  I used to consider that a holiday wasn’t a holiday unless you came home needing a rest after doing everything that you could possibly fit in.
I am now 41 and about 9 years ago I suffered from overnight joint seizures, mostly hands but other ones as well.  It was quite frightening as I had no idea what was happening and I could not move my fingers or wrists without extreme pain.

After much testing ( over a few years) it was diagnosed as Sero-Negative inflammatory Arthritis – which was a diagnosis that meant it was really unknown.   It has also been described as ‘reactive arthritis’ and ‘lupus antibodies’.   Prednisone and high dosages of ibuprofen allowed me to continue life in a relatively normal way but I hated taking these drugs.

In 2010 after being off prednisone for about 6 months and thinking that things were going along really well, I suffered an attack of acute fatigue that left me in bed for 3 weeks running.  Again – a frightening prospect to a person who has suffered insomnia since childhood.  I have never recovered my energy.  And I want to.  I still sleep during the day, suffer from foggy head, lack of drive, blah days and frustration at what is happening to me and my life.  I want to change that.

I came across this forum and thought how positive it was.  Although I am Australian (and go for Australia in the Bledisloe cup), I have a love for NZ and its people.  I have spent a large amount of time hiking and holidaying and some time working in NZ.  I recently competed in the Takapuna Cup (waka ama) and would move to NZ in a snap of my husband gave the nod.  The primary reason for this affinity of mine to NZ is the land but mostly it is the attitude of Kiwis.  I have a huge respect for the tenacity and zest for life that New Zealanders have, it is truly infectious and inspiring.  At the risk of stereotyping, Australian’s tend to lay back and expect someone to fix it for them or play the blame game (yes I have been guilty).  Forums and medical advice in Australia are not much different from this sort of attitude and I find myself getting despondent with it.

Though association with positive people and those who believe in keep on keeping on, I hope to lift out of this health slump and live a positive and engaging life with the condition that I have.  In return for your support. I offer mine. I offer any findings that I progress with and I offer a cyber hug/smile across the Tasman when you are having a bad time.  And…I promise to go the NZ whenever they are playing anyone but Australia.

Yours in good spirits

Jen

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