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Tag: coeliac (Page 1 of 3)

Coeliac.

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.”

“Right.”

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?!

O'Brien Premium Ale!

*Toaster not actually in bin, but sleeping at my office because it will probably be put back into action to gluten-up Small Z

Glutened

I have been trying to be so rigorous with my gluten-free stuff, feeling like an idiot cross-examining people. Mostly because in the past two weeks I have eaten out THREE times (i.e – an entire meal) and only once was it not difficult. But I really have made an effort. So I was pretty distraught the other night when I went to make some toast and realised I’d eaten about four bits of it over the preceding few days and it had wheat in it 🙁 🙁

I had been reading this article about how a lot of processed gluten free foods (i.e. pasta and bread) are nutritionally hopeless. I was checking the bread ingredients when I saw W-H-E-A-T!

Horrors!! I had got the bread from the fancy supermarket near my mum’s place – it was in amongst other gluten free loaves. I am so annoyed at my own self – I was convinced it was safe – but was obviously not careful. I am lucky I don’t have a freaky reaction to it – just feel as dehydrated as the Gobi desert and my eczema has flared – having potentially undone all my good, villi-healing work, I am starting afresh and hoping to be more vigilant. But GODDAMNIT!! I put that stuff in my gluten-free brand new toaster!!! [bangs head on wall]

Gluten Free Cat Fury

The Adventure of Silly Yak

One of the things that happens when you are diagnosed with coeliac disease is this: everyone that is closely related to you needs to be tested as well. Siblings, children, parents. There is a ten percent chance that they will have it too.

Small Z is in that ten percent. Her blood tests indicate a 90-95% likelihood and she will probably have to have a gastroscopy under a general anaesthetic. This will allow a biopsy to be taken from her small intestine and from that it will be established how much damage (or not) there is to her villi.

I told her all of this yesterday, waving my fingers at her in happy rippling motions.

“See these? These are happy villi!” I wiggled one finger. “Hooray! This villi is absorbing Vitamin D.” I wiggled another finger. “Hooray! This finger is absorbing calcium.” I waved two more. “Hooray! These happy villi are absorbing…um…B12…and lots of other nutrients! They are doing their job.”

“Now,” I instructed her, still with my wiggling fingers, “Pretend to throw a whole lot of gluten at them.”

She enthusiastically pelted the villi with imaginary Weet-Bix. My fingers slumped prone.

“That is what happens if you have coeliac disease. Your little villi – that are essential for absorbing good stuff – can’t do it, because they have been knocked over by gluten.”

Small Z looked bereft. “The poor villi!! Do they get better?”

“Absolutely. As long as you keep their enemy away from them.”

“Gluten?”

“Yep.”

I then told her about some bread I’d seen at a market years and years ago. I’d thought it had such a weird name, and it had taken me ages to figure out why (I am a little bit slow). The bread was called “Silly Yak’s Bread”. Small Z was enchanted by this and we decided to write a story of how a Yak became a Silly Yak. That is currently in progress and will no doubt be brought to you sometime soon.

In the meantime, while I am sad that Small Z will now have to be vigilant about her diet forever after, I am glad that this has happened now. Such an early diagnosis means she is heaps less likely to get another autoimmune disease. Because of her age, she will barely remember being able to eat bowls of Weet-Bix and rolls from the bakery. If she had gone undiagnosed she would probably have ended up with osteoporosis – now is a key time for bone formation and if she was to continue to be unable to adequately absorb calcium and Vitamin D because of damaged villi – she could have been on the fast-train to fracture-land at some point in the future.

Whether she will have a gastroscopy and the associated general anaesthetic is something I continue to ponder. This is considered the ‘gold standard’ of coeliac disease diagnosis. However, some coeliac specialists state that if the blood tests and gene tests appear positive then waiting to have a gastroscopy is unnecessary. One example used is that you don’t wait for a heart attack to happen to prove there is a problem – you act on the warning signs.

We don’t have a doctor’s appointment until next week, so we remain in the Land of Not Quite 100% Sure of Everything until then. I’m guessing that’s NOT one of the lands at the top of the Faraway Tree.

Crummy

Coeliac disease. In the past week I have had a few conversations with people who don’t understand what it is. The raised eyebrows at work when I line the sandwich maker with baking paper to stop cross contamination.

At least they just say it to me; “But just a few crumbs won’t hurt…” and, “My friend’s a coeliac and she can eat gluten now and again.”

No she can’t.

Eating gluten when you have coeliac disease is like smoking. It shortens your life.

Is that clear enough?

Coeliac disease is an autoimmune disorder. Autoimmunity is when the body’s cells attack the body. Because they’re confused and don’t work properly. So when someone with coeliac disease eats even a tiny bit of gluten – a bite of a sandwich, some soy sauce on their rice – their cells freak out.

The freaked-out cells damage the intestine.

The damaged intestine can’t absorb the good stuff – like Vitamin D and calcium, leading to osteoporosis. Like iron, leading to anaemia. Like B12, zinc – the works.

It takes a few years to heal a sad and damaged gut. And it’s not made any easier by gluten being every-fucking-where.

Two steps forward, one step back. It happened to me a few weeks ago. I don’t even know which thing the gluten was in. Crumbs…or something that was supposed to be gluten free and wasn’t.

Whatever it was in, it got me. And now the blood tests I was due for have been rescheduled for August – so my body has a chance to get back to where it was.

This is why I line the sandwich maker. This is what I try to explain to Small Brother and other people in my life, while being conscious that I probably sound like a neurotic tosser.

Did you know there is a ‘Simple Wikipedia‘? It says:

Coeliac disease is an illness which makes people ill if they eat gluten. If someone with coeliac disease eats something with gluten (for example, wheat), cells inside the body attack the lining of the intestine. This means that they cannot digest (eat) food properly, making them unable to have enough energy, vitamins, or minerals…People with coeliac disease often lose weight. They are also frequently tired.

In another post I will bore you further about how I thought going gluten free would be pretty much a total breeze… and then the more I learnt, the harder it has got. But I’ll save that for next time 😉

PS And with true irony, today I was semi-accused of stealing bread at the farm where we sometimes get our milk. I kept saying, “No. I don’t know what you’re talking about. I didn’t put any bread in my car.”

Until it finally dawned me…

“I’m C-O-E-L-I-A-C. I don’t even EAT BREAD.”

I might’ve even ended with, “Ha!” Ha.


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