Two weeks ago or so I was diagnosed with coeliac disease. Belatedly I realised that this is why I have struggled with low iron, osteopaenia and low Vitamin D and low zinc etc etc for so long! Hadn’t got around to posting it here because I was busy living through the various stages…
a) Hooray!! I don’t have some weird stomachy oesophageal cancer thing!
b) The cure is no gluten! Easy. Hooray!!
c) Erm…goodbye sourdough/beer/porridge/HP Sauce/Rye/Malt [sob] d) Am not dying though, so… Hooray!
e) Cue: spasm. We make whole house a GF zone. Goodbye toaster*.
f) But WTF do we eat for breakfast?
g) More spasm. Join Coeliac Society. Never a better dollar spent. Am calmed.
h) Conflict as to whether it is OK to have GF children.
i) The above conflict is then complexified by the need to have Smalls tested for coeliac disease as they now have (or have always had, but I never knew) a 1/10 chance of having it too
j) Decide that having a GF house is a good option as we do eat healthily and the Smalls won’t expire from lack of Weet-Bix or wheat based pasta/bread…
However, we will try to give Small Z gluten every day until we have her tested. I honestly can’t see testing Small DB being a success, she would totally freak out if someone tried to extract her blood, so that will have to wait for a while.
I think that last time I posted about dietary stuff I had not yet had the formal diagnosis. I saw the gastroenterologist on Monday who agreed with my GP – coeliac. Is it possible to ever see a medical specialist and not be aware that you have about ten allotted minutes with them and then TIMES UP!? It makes me twitchy.
I had prepared my question, which was: “So, if the little villi in my small intestine are damaged – exactly HOW much are they damaged?”
“Ummmm,” he said. “Well there’s obviously damage, because that’s how we know you have it, but…”
“I’ll frame it a different way. How damaged are the villi out of ten?”
“About five out of ten.”
I wasn’t particularly horrified. It’s a reasonable midpoint. And I’d been reading data that stated people with zero symptoms could have severe damage, so I was OK with 50%. And as long as I do not ingest gluten – EVER – it should repair. It will be interesting to see what has happened over a 12-18 month timespan.
In the meantime, the Coeliac Society are just awesome. One of their volunteers spoke to me for a-g-e-s on the phone. She wasn’t diagnosed until she was 52! I found out lots of bits and pieces from her of which I’d been unaware. And she also recommended that the Smalls be tested. Sigh…
Ah well. Interesting times. Going to cafes feels slightly fraught – I didn’t know some soy milk has gluten – and that the chocolate they sprinkle on top of coffee often has it too! Meanwhile, M found me a new friend…beer from O’Brien. I thought I just didn’t like beer anymore as it has made me feel gross for about the last four years, but no! It was just the gluten! Who knew?!
*Toaster not actually in bin, but sleeping at my office because it will probably be put back into action to gluten-up Small Z