- if you don't have one of the 2 HLA genes (HLA_DQ2 and HLA_DQ8) you will never get coeliac disease (30% of the population have the gene, and only 1% have the disease). Simon and I don't yet know which of us has the gene, but we have had the blood test and neither of us has CD now.
- Gluten intolerance is a different thing, which may or may not be related. It doesn't do any bowel damage.
- There's a tribe in the Sahara desert in which 1 person out of every 18 has coeliac disease (the highest known incidence)
- It is very rare in SE Asian populations and in Australian Aborigines. And reasonably wide spread in Ireland, Iran and India.
- Instances of coeliac disease in young and old people (under 20 and over 50) are equally spread between male and female, but in the 20-50 age group there are 4 times as many women as men diagnosed.
- The average time for a diagnosis is 5 and a half years in Australia, and 11 in the US (our doctors are more aware of it, but still not great).
- The cause of coeliac disease came to light during the Dutch famine in 1944 when there was very little flour. Many patients with coeliac symptoms had miraculous recoveries during the famine, and then relapsed when flour became available again. Before then they knew of the disease, and that it was carbohydrate related, but not that wheat specifically caused the mal-absorption.
- It's a breach of the Food Standards code to label a food "99% gluten free" or "No added gluten" - these are labels I've seen in coffee shops.
- There was a study by Catassi (in 2006 I think) which showed that for 50 healthy coeliacs, given between 10mg and 50 mg of gluten per day, no coeliacs who ingested 10mg in the study showed any symptoms. At 50mg a day there were adverse reactions, and 4 people had to withdraw because of the severity of the reaction. To eat 10mg of gluten you would have to have 500g of a food containing 20 parts per million of gluten (which is a very low level of gluten). That would be 80 slices of a "gluten free" bread that actually had 20ppm of gluten in it, or 8 slices of what some overseas countries class as "low gluten" bread with 200ppm in it. Basically it shows that tiny traces of gluten ingested inadvertently won't adversely effect coeliacs, so they don't have to be really paranoid about it to the extent of never going out.
- "Gluten" doesn't really exist - it's the collective name for the several different proteins in wheat, rye, barley and oats.
- And on a lighter note, while the rule is "if in doubt, leave it out", the lesser known rule for coeliacs is "if there's no doubt, pig out." This quote just before afternoon tea!
We were all given 2 big sample bags of GF food (most of which I'd tried for Harrison or knew about). One was a chocolate mud cake mix - I might make it for Simon's birthday.
The Alternative Bites people also put on a spread. I had heard about Alternative Bites but haven't been there yet. They are a totally GF cafe that also sells takeaway and frozen foods - pies, sausage rolls, cakes etc. I had heard many times that the food is indistinguishable from the gluten equivalent, but didn't really believe it. I was stunned at the variety and quality of the spread. It was about 5pm when the talks finished, so I took a few things home for H to try. He had a piece of pie for dinner and a couple of little treats (a bit of lamington and a wafer biscuit). He loved it all - particularly the pie. He used to love pastry and of course hasn't had any since he was diagnosed. The lamington was really really good quality and I was amazed that they could even make a wafer biscuit.
This is one place we'll definitely be visiting. Now that Terena lives south of the river we'll be going in that direction more often, so I'll make a point of dropping into Garden City.
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