Monday, May 02, 2011

Life With AS

In my post The Back Verdict I mentioned that after a blood test and an X-ray, the cause of my chronic lower back pain was revealed to be a form of arthritis called Ankylosing Spondylitis.

This post is to reveal a little bit about how my life has changed since then.  I'm not trying to be a sad sack or a drama queen - many people have far worse types of arthritis!  This is just my story.

Now that I have reliable internet at home, I've been doing a lot more research on the condition.  My doctor (who actually has AS himself) encouraged me to read up on it, but not scare myself with stories of ending up as a hunchback.  The condition is manageable if I take care of myself.  He put me onto a type of anti-inflammatory called Celebrex and told me to do lots and lots of exercise.  So that's what I did.  I took my drugs, I played tennis three times a week, went walking with one of the girls on the farm, and attempted Pilates from a video I bought at an op-shop.  One positive thing that happened was that my tennis ability improved greatly.  Due to more limited movement, I had to make sure my shots were accurate.  I started playing in a pennants competition in Kojonup and ended up with a 6-1 singles record with my only loss being in a tie break.  This has NEVER happened before!  I think my last singles victory was in high school so it has definitely been a long time between drinks!

AS is a genetic form of arthritis.  A professor in the UK made the discovery that 95% of patients with AS have a genetic marker called HLA-B27.  People with the HLA-B27 gene are prone to conditions such as AS, Irritable Bowel Syndrome (which I fortunately don't have) and others.  It doesn't mean that everyone with that gene will develop one or more of those conditions, but we are more prone to it.  AS usually starts in your twenties and usually affects men more than women.  But I was about to discover more...

I was going along pretty well, finally getting uninterrupted sleep at night until Duncan and I went to our friend Rina's 30th.  There we caught up with Duncan's cousin, Liz, and her husband, Chris.  During one of our conversations, I mentioned that I had AS and Chris told me he was also HLA-B27 positive.  He told me he had been managing his pain by following a low starch diet which he had learnt about through this book:

The diet involves cutting out foods high in starch such as pasta, bread, cereals, potatoes and rice (and more).  My initial thought was Thanks, but no thanks.  Adopting a diet devoid of my favourite foods sounded like a descent into some kind of food hell!  Chris very kindly bought me a copy through The Book Depository and arranged for it to be sent to me so I could make up my mind whether it was something worth pursuing.  When the book arrived less than two weeks later, I flicked through it and immediately became very depressed.  I had doubts whether years of taking Celebrex would be very good for my body, but I didn't think I had what it took to adopt a low starch diet for the long haul.  I mean, let's face it - so MANY things contain starch!  I didn't even really know what starch was.  Most people tend to confuse starch only with carbohydrates.  It just happens that many starchy foods are also high in carbohydrates.

I've now been on the low starch diet for over three weeks.  I'm not going to's hard going!  I went to the doctor and he reckons I have nothing to lose by stopping using my medication and trying the diet.  So far I've been pretty much pain free!  I've come to realise just how starchy my diet actually was. 

Here's an example of my daily diet:

Breakfast - Instead of cereal and toast, I now have fruit and yogurt and occasionally bacon and scrambled eggs or an omelette.

Lunch - Gone are the sandwiches, Cruskits, pasta or rice.  Now I have salad and lunchmeat such as salami, ham or tuna.

Dinner - The book actually contains a lot of very good recipes which I've been trying out.  Basically I can have any kind of meat (as long it has no batter, crumbs or most sauces on it) and vegies.  But it has been a hard slog to say goodbye to sausages, lasagne, spaghetti bolognese, rice....Oh I feel sad just thinking about it :(

In a nutshell I've swapped a diet high in carbohydrates for a diet high in protein.  I can have meat, dairy, fruit, vegetables and eggs.  But I still have to check the packets on everything.  Packet-checking has now become a part of life as has carrying snacks such as dried apples, apricots, sultanas and flaked almonds (whole almonds are disgusting) wherever I go.  I've started cooking my own biscuits and muffins but with almond meal instead of flour.

Explaining why I am on this diet is actually harder than the diet itself!  I will attempt to explain why starch is bad for me in my own words.  Basically, AS is auto-immune.  My white blood cells not only attack foreign objects, they also attack my own body.  The pain often starts following an infection by a bowel microbe called Klebsiella.  Here is a quote from a website I have found to be helpful,

When one eats large amounts of starchy foods (bread, potatoes, cakes and pasta), the Klebsiella bacteria feed on it, multiply and then the immune system of the patient makes antibodies against the microbe and some of those antibodies will also have activity against HLA-B27 and against collagens in the spine and uvea, thereby acting as tissue damaging autoantibodies - hence the need to ABSTAIN from these foods.

Since the mesentery of the bowel is attached to the front of the lumbar spine, it is inevitable that BACKACHE in the lumbar area will be a feature of AS.

Since most people (myself included) don't really have much of a clue about what contains starch, having meals at other people's houses or at cafes/restaurants is proving to be a nightmare!  I really hate putting people out, but I have to take care of my own health.  In hindsight, God was preparing me for this by bringing a number of people into my life who have food allergies or need to adopt particular diets for a variety of reasons.  I have a friend who is vegetarian so I try to cook a vegetarian meal when she comes to visit.  An ex-workmate is a coeliac so I used to buy gluten-free flour and bake cookies with it so she didn't have to miss out on afternoon tea at work meetings.  I know a number of other people who are gluten or lactose intolerant and another friend of mine is on a low amine diet because she gets migraines.  I always tried to be compassionate to these people and they thought I was amazing for thinking of them when cooking.  But, honestly, there's nothing amazing about simply being considerate of others.  Now I find myself in the same boat, I would like the same consideration shown to me.

But it's not easy to get people to understand.  One of the common myths I've had to 'bust' is that I need gluten-free alternatives.  I am NOT a coeliac!  Gluten has no bearing whatsoever on my condition.  The low starch diet is actually a lot worse than being gluten-free!  There are aisles in supermarkets dedicated to gluten-free products.  I can't have any of them because I can't have ANY kinds of cereals - wheat, barley, rye, maize, corn.  I also can't have soy or lentil products.

Some people have looked at me quizically like they think I'm a freak or I'm just trying to be difficult.  Others don't really take the diet seriously and say stuff like, "Oh you can have just a little bit."  They don't understand what it's like to wake up in pain.  But most people have been encouraging when I explain that I'm trialling a diet-controlled method rather than a drug-controlled one.

I'm going to be trialling this diet for at least three months and then see if I can add a few things back.  It's really a process of elimination.

Some days I think the diet is really not that bad.  Believe it or not, I can still have soft drinks, chocolate (as long as it doesn't have caramel or any fillings), some lollies, alcohol and some icecreams.  And I've lost 3kg!

Other days I think of cake, biscuits, Twisties, pasta, rice, bread and I just want to cry, knowing this diet could very well be for the rest of my life.

I keep telling myself to keep my chin up and focus on the positives.


Jenny said...

Hey Sarah thanks for sharing your story. I had never heard of this and the diet sounds TOUGH. I think it's great that you've written about this because the more we know the better we'll all be at adjusting and being generous to others. My son has a lot of food 'things' and over the 13 years since he was born society has learnt a lot about food intolerances and allergies. It does make one weary though!

Iris Flavia said...

Oh, Sarah! That sounds horrible! Hope you get used to your new diet and somehow can enjoy it...
It´s a wee bit like my Spouse´s diet - new restaurants or others doing the cooking always is a danger. But... he doesn´t need to take those darn drugs!
Good luck and best wishes!

bettyl said...

What an informative post. You are such a brave soul.

Hey, don't worry about what other people might think. The important thing is that you eat what you need to eat.

Sarah said...

Thanks for your encouragement everyone!

Betty, yes I defintiely won't be letting people pressure me into eating things that aren't good for me. It's just tiring having to constantly remind people, and I feel bad telling people what to cook in their own house.

Jenny, yes weary is the perfect word to describe it. Sometimes I'm battling to find things to eat to keep the diet interesting. I'm encouraged by how far things have come for coeliacs though and it it gives me hope that one day they might be able to invent a starch-free lasagne (haha I wish!)

Iris, I hope Ingo's diet is going well. I recently discovered Celebrex was putting me at risk of heart failure and stroke (I have a family history of strokes but was not asked this before being put on the medication). It makes me all the more determined to try and control this condition by diet rather than drugs.

Iris Flavia said...

Thanks, Sarah, it is - as long as he isn´t forced to work shifts. Which will probably be again in... Fingers crossed, last time we nearly ended up in hospital...

Oh, my, risk of heart failure?! Hope you really find a way to somehow "enjoy" that diet!

Janine said...

Thanks for sharing this with me Sarah. I think I am going through a lot of the feelings you went through, and am discovering the wonders of eating out in restaurants (basically I've learnt so far - don't do it!) and label checking (I'm getting better but still I got back from the shop at lunch time with something I thought I could eat as it was gluten wheat and dairy free but found it contained nuts and seeds which I cant eat I obviously just concentrated on one part of the label!). Glad you are feeling better. You give me hope.

Oh - and as for the peer pressure. Seriously, it's shocking. Today I just told someone I havent gone to any of the work xmas do's due to 'personal reasons' rather than I cant drink alcohol etc at the moment - that just makes people berate me.

Sarah said...

I'm so glad I've given you some hope, Janine. That sucks about being hassled because of your diet. Some people just don't understand. I've found that trying to explain my diet to people is more wearisome than the diet itself. I've been on the diet for 8 months now. Here's the post I wrote after the 6 month 'anniversary' if it's of any help:
Hang in there. It does get easier and you do get tougher (and sometimes you can even add a few goodies back!)