Thursday, January 7, 2010

New Years resolution... of sorts.

Here I sit munching on rice cakes topped with (low fat) cottage cheese mixed with a combination of garden grown herbs and spices from my cupboard, and finely chopped, garden grown tomatoes nestled on top. It's delicious. Really. Every bite reveals a hint of cumin, or thai basil, or garlic chives, or regular chives, or a splendid burst of tart tomato and the gentle warmth of ground black pepper. It's a tropical sunset for my palate -- delectable and oh so inspiring.

This simple breakfast item delivers a protein punch, which is essential for energy maintenance throughout the day. It also abides by my dietary requirements... at least I think (hope) it does.

I have resolved (resigned) myself to a self-diagnosis of gluten sensitivity. That's really a no-brainer given my dietary history, physical and emotional symptoms and the fact I have one autoimmune condition (acquired 20 years earlier than is the norm for that condition) and, in the words of my specialist for that condition, was on the fast track to rheumatoid arthritis. Oh what joy that would have been.

Beyond that though I abide by the low FODMAP(tm) diet, a diet devised by Sue Shepherd. The diet is based on sound new scientific research into how simple sugars are digested by the body, and identifies those sugars which are poorly (or not at all) tolerated. Though Sue has celiac disease, her advice and recipes extend beyond the exclusion of gluten from the diet and encompasses all the other foods that cause digestive disturbances. I have all her recipe books which are suitable for celiacs and those on a low FODMAP diet.

Until this week, I have not been ruthless about excluding gluten from my diet. I avoid the main players, being wheat, rye, barley but had been including oats and gluten containing sauces and thickeners. When I stick to the low FODMAP diet (which encompasses gluten free), my symptoms are almost fully resolved. I say almost because they are not entirely resolved. As I am my own therapist, researcher, doctor, specialist... you name it, I have nowhere but the internet to gain insight into why this may be the case.

Basically, there are two possible explanations: 1) I am more gluten sensitive that I've realised and the inclusion of even minute amounts of gluten is continuing to compromise my digestive system, or 2) my digestive system is still healing -- it can take months/years to heal and given that I've had symptoms for well over five years, it's unreasonable to expect my health to immediately bounce back.

So, without knowing for sure which it is, the safest option is to go to option 1 assume that I require a gluten free diet, rather than a gluten reduced one. I've found it relatively easy to avoid wheat, rye and barley as a main ingredient, however avoiding all gluten sources is much harder.

At home, in control of my own kitchen and daily eating menu, everything is pretty much okay. I plan ahead, make sure that I always have something on hand that is quick and easy for those times when I'm tired and could be tempted to eat the wrong thing. Eating out though, and socialising is a whole other thing.

Yesterday my colleagues stood around my desk and discussed pasta restaurants, recipes and wheat based food that left me feeling isolated and abnormal. They meant no harm. They are lovely people, but the reality is that wheat permeates every part of modern dietary life. Even if it's possible to avoid it as a main ingredient, it's near impossible to avoid it as a thickener or additive, which makes eating out either difficult (if I am to abide by my dietary requirements) or sickening (if I give in and eat a convenient, but damaging, food). Neither option is appealing, so I rarely eat out. It's not so bad for hermit-like people (as I am), but there are times when I long for human company and generally that means going to another person's house or meeting up at a food place. The complexity of that sometimes seems like just too much effort, so I stay at home, alone, and nibble on my own food knowing that at least I'm not compromising my physical health.

I also learned yesterday that wheat is addictive. I'd never have guessed it, but it does make sense. 

The plus side of this is that I am regaining my health and vitality. After years of chronic diarhoea, recurring bouts of fatigue, weakness, joint pain, depression and mood swings, I now wake most mornings feeling rejuvenated and alive. My oral autoimmune condition rarely causes me any trouble and the tube of steroid cream is never touched. My hair no longer falls out with the frequency that it used to. I no longer need to structure my day around the proximity to a toilet and I am physically active and have sustained energy.

It's worth it. It really is. I just have to keep reminding myself of that. Being sick sucks and if eating a restricted diet and having less of a social life means I can be physically active and healthy, then so be it. I refuse to accept ill health. I refuse to accept the worn out excuses and recycled explanations that western doctors throw at patients. And I refuse to take pills to resolve a situation brought on by laziness and inattention to my body's needs. I intend on living a long a healthy life. Popping pills because I'm too lazy to look after myself is not an option. If I can do something to make my life better, I will.


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  2. You better have this printed out and posted somewhere where you can see it every day, or at least a shortened, more potent version of it. This is a solid resolution and although it sounds simple, took a lot of balls and means a lot of implications. Yes, you will have a hard time ordering at some restaurants, and yes, it seems that the 'bad' stuff is everywhere, and yes, it's unfair that the people at your work can eat what they want.
    But can they?
    Be strong about this for all the millions of people out there who have no idea what is going on with them, and who suffer because of it. You are not diseased or flawed or making things up. Your body is a result of what you put into it, so why should it be so hard to believe that food can affect you? Find the joy in going that extra step to stay gluten-free. You have a huge, flourishing garden and have discovered many types of grains that most people have never heard of. You can be creative. You can be colorful, and flavorful, and feel great because of it. Life is not unfair, it just IS. I think being gluten-free is a small 'price' to pay considering how wonderful you can feel.
    This is only going to seem like a big deal for a while. Then it will become habit. Your friends will already be aware of what you can't eat, and will stop offering 'bad' things and may even look forward to trying items from your diet. I am.
    Eat well. Live life. Stay strong!

  3. Very inspirational story my friend. You sound so much like me.I've had digestive issues all my life (I'm 38 now) and just starting to put the puzzle pieces together after literally dozens of doctors being baffled. The FODMAP diet makes so much sense now after years of wondering why I reacted to the foods I do. Thanks for taking the time to put your story up and best of luck.