Bah, bah and thrice bah

[simont]

I've just come back from Addenbrookes, where I was told I had coeliac disease and recommended to go on a permanent gluten-free diet.

Looks as if I won't be going to Monday evening geek pizza any more then. Bah. Or eating Chinese food with the Gallery crowd on Sundays (despite the main carbohydrate being egg fried rice, I'm told soy sauce and such things tend to be problematic). Bah. Or drinking beer ever again, which is at least three bahs all by itself.

It almost wouldn't be so bad if I'd had perceptible symptoms at any point; at least then I'd have some reason to hope that something would improve in return for all the aggro. But no; I only got checked out because my sister (who did have real symptoms) was diagnosed coeliac, and on the basis that it's partly genetic I was told I ought to get checked. So now a bunch of gastroenterologists have stormed into my apparently perfectly good life and told me to stop eating lots of nice things.

BAH.

Comments

[damerell.livejournal.com]

What bad stuff might happen if you do, JOOI?

[simont]

A variety of pleasant things including osteoporosis and bowel cancer, apparently. So it's probably worth paying some attention to. Particularly as the guy who I saw was initially very dubious about it being even worth doing the tests - he seems to think too many people are being diagnosed as coeliac when the situation isn't actually significant enough to warrant it. So if my test results convinced him even given that attitude, I fear they're probably bad enough to be worth not ignoring...

[antinomy.livejournal.com]

What were the tests, ooi? Did they just diagnose on bloods or have you had repeat biopsies?

Some of the reading I did suggested that blood tests alone are fine as a screening tool but not terribly useful for diagnosing individual cases.

[simont]

Indeed, that was what the guy I saw said too. They did an endoscopy and took biopsies.

(I'm not sure what you mean by "repeat" biopsies. I get to go back in six months' time after not eating gluten, and then they take further biopsies to see whether things are going back to normal in my duodenum.)

[antinomy.livejournal.com]

That's what I mean by repeat, yes - that you take them again after a period of gluten exclusion.

Good, that seems to be the gold-standard for diagnosis.

[crazyscot.livejournal.com]

Woah. Sucks mightily. BAH, indeed.

My dad was diagnosed a Coeliac two or so years ago. From what I remember of the research I did online at the time, I have grounds to be curious about your diagnosis; they said that the only sure-fire diagnosis was that symptoms were present, but vanished on a strict exclusion diet. (But then, IANA doctor, let alone a gastroenterologist.) Then again, the disease manifests itself for him - he gets all manner of pain, trouble and (TMI) from his guts when he inadvertently consumes gluten. When I visit, it takes a little while for me to get used to little things like not taking a knife from butter to toast and back to get more butter, because the slightest cross-contaminated crumb sets him off. To him, it's like a peanut allergy, but with different (not directly life-threatening) symptoms and with a 12-18 hour delay.

[atreic.livejournal.com]

I think the "symptom" in this case is the inflamed gut wall. I suppose that in six months we'll have to hope it hasn't vanished. Unless that would mean there was something even worse wrong.