Invisible on the NHS

Oh dear! The sub-title of this blog refers to the British National Health Service. Let's be fair - after a long delay in getting my first appointment with a consultant I was treated pretty well. Being prescribed a drug - Montelukast - by letter is a little unusual but it works.

Yet it seems salicylate hypersensitivity is invisible on the NHS.

The NHS Choice has just launched an on-line food allergy testing tool. The idea is to distinguish between allergy and intolerance.

I've checked it out and it tells me I possibly have a food allergy. The problem is it's not quite true. Salicylate hypersensitivity is something a little different. I'm telling people now I have a metabolic disorder - there's something wrong with the metabolism - and that seems a better description. I double-checked by typing salicylate into the NHS Choice search engine and absolutely nothing relevant came up.

It's not as though it's uncommon. My dietician has other cases. My research has shown there's some scientific understanding of the condition if you look in the right places. There's even a drug.

Now after mentioning possible food allergy, the NHS Choice site suggests that nuts, fish, milk, eggs and wheat are the most likely foods to cause a problem. Tell that to the experts, who do not like the idea of wheat allergy.

Now I thought I had wheat allergy and my GP didn't contradict me when I told him my suspicions. I reacted to pasta and pizza and I ate a lot of pasta - still do. I was tested for it and the results were negative. That did not surprise the consultant as wheat allergy is actually pretty rare. And let me tell you - wheat allergy is miserable. Avoiding wheat and gluten for six months was far tougher than the way I live now. The gluten free food is expensive and insubstantial, cooking with it is impossible. It's true that catering departments know about it - but their menus tend to be unpalatable. I lost half a stone in six months and lived in permanent hunger.

And in fact, it seems, I was reacting to everything else - herbs, concentrated tomatoes, spices, peppers etc. So which is more common salicylate hypersensitivity or wheat allergy? I have a feeling nobody knows and I also think that suggesting wheat is a common allergen is misleading, as it's also a common food.