How and when did my wheat free journey start? I was diagnosed with a wheat allergy in 1997 after having food poisoning in France; caused by eating seafood that had obviously gone bad.
Motorcycling around France with food poisoning is, I can confirm, not a fun experience. With a lack of public conveniences, and restaurant washrooms that are seemingly cleaned once a year, it wasn't ideal.
I can pinpoint the exact meal that was the problem. We stopped one evening at a pizza parlour not far from the campsite, it didn't look the most hygienic of eating places, however, our travelling companions wanted pizza so pizza it had to be.
The pizzas served were half cooked and disgusting, but we were all hungry. My pizza came out with prawns, mussels, and whole squid on it... yuk! Being English obviously didn't help and the service was lousy too.
Leaving half eaten pizzas we paid and left. Just 24 hours later I had raging food poisoning and an already miserable holiday—due to the bickering travelling companions from hell—was even more miserable. A few days later one of our travelling companions got food poisoning from mussels, however, she didn't end up with a food allergy.
The problems with wheat started slowly after that. Once I was recovered from the food poisoning I noticed that after eating pasta and pizza I needed to visit the bathroom immediately. Bread, biscuits, cakes etc. didn't initially have an effect.
Then I became more sensitive to anything containing wheat, but pasta and pizza were always the most devastating to my body, leaving me with such severe diarrhoea I would feel dizzy and weak afterwards. Other side effects were bloating, stomach pains, body/joint pain, stiff hands every morning on waking, headaches, mood swings, and general poor health.
Finally I went to my doctor, who surprisingly listened to my theory that wheat was the cause of all these problems and he sent me to the hospital to check it out. The appointment was so far in the future I had to stop eating wheat for my health beforehand, but I'd kept a food diary which I took with me to the hospital. The hospital had no doubt that wheat was the culprit so they didn't offer any testing even for celiac disease. Trying to reintroduce even a tiny amount of wheat back into my diet after being wheat free for several weeks, caused such devastating side effects it was obvious I could never eat wheat again. A full blown reaction would occur within seconds of even a crumb of wheat passing my lips.
Having been sent off by the hospital with a scrappy photocopied sheet telling me to avoid bread, pasta, cakes, biscuits etc., and to eat rice cakes instead, I was left to try to live a healthy wheat free life without any help or support. It was tough, there was so little wheat free information or products about that initially it was extremely distressing, and being a food lover I thought that the world had ended. In the 1990s the loaves of rice bread available were so solid you could build a house with them, but I persevered in finding the information I needed to eat healthily—without missing out—and to help others in the same position, and so, wheat-free.org was born.
Until 2006 I was living in the UK, but then we moved to Canada and my new doctor wanted to investigate the problem. So in 2007 skin prick tests confirmed it wasn't an actual wheat allergy, but an auto-immune problem (read more), and celiac disease testing also produced a negative (read more). Unfortunately you need to do the gluten challenge test, eating gluten for 6-8 weeks prior to celiac disease testing for it to show reliable results, and of course as I couldn't tolerate even a breadcrumb it was never going to work. Every time after eating wheat the reaction would be so severe I wasn't in a fit state for sedation, so it was medically impossible to eat it every day for 6-8 weeks. I was sent away with a 'probable false negative' according to the specialist.
Being diagnosed with a wheat allergy or wheat intolerance is distressing. I know how difficult it is, so I hope that this site makes a difference to people in the same position.