Celiac or Not Celiac, That is The Question?

I haven't really written much about my own dietary issues besides indicating that I'm gluten free. I guess that's because I have just accepted the way I need to eat to keep myself pain free and healthy. See it's been a bit of a long journey for me this food thing, and unfortunately I didn't find anyone to be very helpful near the beginning when testing for celiac disease would have been appropriate - because I was still eating gluten. I was told that I probably had IBS and that there was nothing much to be done. We are talking about 8 or 9 years ago now.

I think it started when I was doing a very stressful job running a department of the luxury department store, Liberty in London. A couple of years out of college and pretty disillusioned with the world I'd spent 3 years preparing to enter (costume design), I found myself working my way up the career ladder in retail - just because it seemed easier to follow than my disappointment at not enjoying working in film.

Surprising as it would seem to anyone who knows me now, I did not pay attention to my diet. I lived on a heady combination of cigarettes, coffee and biscotti. Now I don't mean I had these in addition to other sustenance, like maybe vegetables or home cooked food, this was my diet! Needless to say, I got pretty thin, had headaches, bad skin and suffered from anxiety. I was in pretty constant pain with my guts, but I didn't pay it that much attention - I just thought I was hungry or something, and that's good right? (wrong - duh)

Eventually life moved along, I got all burnt out and just had to take care of myself. I started to look at my diet and eat better. But my stomach seemed to react to so many foods I didn't understand. This is when I got the IBS diagnosis. So I tried to avoid things that aggravated my stomach and was always trying some new combination of avoided foods. Nothing worked really, I still got alot of pain, but I thought that I just had to put up with it.

Then I cut out wheat and that seemed to make a big difference. Ah, I thought! I have a wheat intolerance. So I ate rye bread and oats instead, pot barley and spelt occasionally too. I still had pain, but it was ok - much better than before. 

Eventually I realised (only a couple of years ago now) that I couldn't really tolerate dairy either (except cream and butter, ha ha!) and when I cut out all forms of gluten I was pretty much ok. I hadn't even realised that the Barleycup I had been washing down my breakfast with for years, could have been causing me problems.

Fin too seemed to be sensitive to wheat, although ok with oats. So he just ate the same food as me. It was tough when he went to friends houses, or his dad had a big crusty sandwich, but as he began to connect the symptoms with the gluten, he didn't want to eat it either.

Now I come to the crux of this rather long post. Neither of us have been diagnosed as celiacs - although I'm pretty sure we are. I recently had oats for a week as a test to see if I could cope and I had a foggy head, achy joints, no energy, eczema on my cheeks and gut pain which went after three days of cutting out the oats (celiacs - sound familiar?)

I have been reading up on celiac diagnosis and all the tests rely on consuming gluten in large amount for six weeks to induce damage in the intestines and cause changes in the blood (antibodies to gluten and raised white blood cell count). Given that I know how much gluten affects me, I don't want to give over six weeks to feeling awful just so I can get a badge telling me what I know already. But for Fin, I think I need a diagnosis so that when we enter teenage years I know whether I can let him make his own mind up or insist he sticks to the diet because he is a diagnosed celiac.

We're seeing the doctor this week and I guess he's going to prescribe weetabix for breakfast, sandwiches for lunch and pasta for supper. Any thoughts on this dilemma would be welcomed with open (and slightly tearful) arms.......