It’s the last day of the school holidays today, so I shamelessly parked the kids in front of the computers, and sat down to look at some of the books I’ve accumulated about food allergies and sensitivities, especially about grains and gluten. I thought if I was going to write a blog about this stuff, I needed to remind myself of some facts! As I looked through them I remembered why they are sitting on the shelf, and not lovingly placed on my bedside table. Although I was able to glean bits and pieces of information from many of them, nothing actually seemed to fit my case or my symptoms. There is a heavy emphasis on coeliac disease, which is understandable: this is a “true allergy”, a life-threatening condition which remains undiagnosed in many people. But I’ve been tested for it, and I don’t have it.
I then assumed that I must have a less well-established “food sensitivity”, an IgG antibody reaction (as opposed to an IgE reaction). I told my doctor I was going to have this test, and she basically said “It’s your money!”. I deliberately started eating grains again for several weeks, and then sent my blood off to YorkTest for a FoodScan food intolerance test. I couldn’t believe the results when they arrived: although I scored highly for a reaction to eggs and dairy (which I can eat with no problems whatsoever), I scored zero for barley, corn, gluten, millet, rice, rye and wheat. It was a bad moment. I actually wondered if I was going a bit crazy, imagining everything.
A consultation with a nutritionist was included with the test, and I immediately made my appointment. The poor woman wasn’t much help. She was clearly used to dealing with people who wanted to talk about the things they were actually shown to be reacting to, not things the test had excluded. She still wanted to me exclude eggs and dairy from my diet to see if it made a difference, but when I added these to all the other things I couldn’t eat, I was basically living on meat and fruit and vegetables (traumatic for an ex-vegetarian). Still, I persisted with the diet for several weeks (including during a holiday in France, which was a nightmare), and I didn’t feel any better than when I had been excluding grains alone.
It took some time, but in the end decided I had to concentrate on how I actually felt rather than looking at the numbers on a chart (sounds obvious now, but it wasn’t then). I didn’t get any symptoms when I ate eggs or dairy, and avoiding them was making life even more difficult than it was already.
The nutritionist did say that there were other tests I could have around reactions to grains, but in order for them to work, I would have to start eating grains again! Having just recovered from my last bout of enforced grain-eating, this was out of the question for me. So we parted ways.
I still don’t know what those “other tests” are, and I wonder if I should look into them further. It is possible that they would require several weeks of eating wheat and other grains, and I wonder how I would cope with work and motherhood being unable to move freely or concentrate properly, existing on painkillers. Would it be unnecessary suffering to tell me something I already know? Or could it could scientifically validate my symptoms, and maybe narrow the range of foods which are a problem for me?