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

[senji.livejournal.com]

BAH!

[pjc50.livejournal.com]

If you don't have any symptoms, is it having a negative effect on your life?

But, BAH, I agree :(

[the-alchemist.livejournal.com]

Increased chance of bowel cancer later in life. Debate as to whether this is a slightly increased chance or a greatly increased one. I didn't have *much* in the way of symptoms, but I do feel generally better now I'm gluten free.

[valkyriekaren.livejournal.com]

That sucks. Do you have to absolutely cut everything out, or can you just majorly cut down?
Have a look at wheat-free products. I know you can get wheat-free soy sauce, and you could try making your own pizza bases using a specialist flour.

[simont]

I do need to cut everything out if I'm going to do it at all, he said. It isn't worth (say) avoiding meals whose main carbohydrate is wheat, but not worrying about the occasional sauce that might be flour-thickened; if I did that I might as well be pigging out on pizza and beer for all the difference it'd make to my digestive system.

I've actually seen ready-made gluten-free pizza bases in Sainsburys, so I don't have to stop eating pizza completely. I just don't get to go out for social pizza in pizza restaurants with gangs of my pizza-eating friends; I have to sit on my own at home and eat pizza instead.

[ex-lark-asc.livejournal.com]

What about the salads?

[atreic.livejournal.com]

All the salads come with dough balls or similar. I mean, you could just ask for no dough balls, but then they're remarkably food-free. And you'd have to worry about the ones with croutons, or what the sauces are based on, etc

[deborah_c]

Well, if it would help, while I'm not part of the geek pizza circle, I'd be more than happy to come around and be sociable over sitting-at-home pizza from time to time? Actually, I'm quite sure a lot of us would.

[the-alchemist.livejournal.com]

I've been told that in Italy, a lot of restaurants will cook you pizza on your own gluten free pizza base if you ask them. Might it be worth trying that in England? Or generally agitating pizza places to provide (Pizza Express used to do one with a potato base, but I don't think they do any more.) Are you sure they *don't*? As I said, Bella Italia had an entire gluten free menu, but there was nothing on the main menu or anywhere else to say that. (They didn't actually have any gluten free pasta when I was there, so it was a bit academic, but at least the thought was there.)

Asking pubs to stock gluten free beer might also work.

[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.

[lusercop.livejournal.com]

Sorry to hear that! I'm sure you can find good ways round it, however.

[emperor]

Were they useful about this? Have they talked about progression and so on - what might happen if you ignore them? If not, then they suck.

Someone on my fiends list has Coeliac disease - would you appreciate me pointing them at you?

*hug*

[simont]

Yes, the guy explained the risks when I talked to him a few months ago.

I already know of one person on your friends list who has coeliac disease. I wonder if we're thinking of the same one :-)

[atreic.livejournal.com]

Of course you're thinking of the same person, M just assumes he's the centre of the social universe. When in fact you've known the_alchemist for years longer than he has, as he'd know if he'd checked your friends page...

[deborah_c]

You mean M isn't?

[marnanel.livejournal.com]

I'm sorry to hear it.

[ewx.livejournal.com]

How annoying l-(

[rmc28]

No beer?!?

Bah!

(And hugs)

[beckyc.livejournal.com]

Bah! indeed.

[timeplease.livejournal.com]

Or drinking beer ever again, which is at least three bahs all by itself.

Ouch. Nasty.

Perhaps you should try to develop a taste for Nigerian Guinness, which is gluten-free (because it's made with local ingredients, and barley really doesn't grow well in Nigeria).

[atreic.livejournal.com]

*hugs*

I'll just have to think of lots of nice food I can cook you when they're all at pizza

[mtbc100.livejournal.com]

Gosh. ):

[ceb.livejournal.com]

Bah :-(

Bear in mind things are often easier to give up gradually (particularly if you need to experiment with alternatives); if you've been eating gluten for nearly 30 years then it's not going to make any difference whether you stop dead or give up slowly over the course of a year.

[atreic.livejournal.com]

Actually, if they're going to do more tests after n months, I'd assume he's better going cold turkey for those n months to see if it really does make a difference, and once he's fully informed about what is causing it then he can make a descision about what risks he wants to take with his life.

[filecoreinuse.livejournal.com]

My god that sucks. I really don't think I could never drink beer ever again!

[ex-lark-asc.livejournal.com]

Oh, poor you :-( *hug*

Happy to make you veggie curry anytime. Cooking decent food is good for my general health (and tubbiness) too..

[ms-saffie.livejournal.com]

Oh yuck. Poor love. I can do recipe hunts, if you like.

[megamole.livejournal.com]

*sympathy* - does strike me that you ought to have suffered by now from eating Wrong Things(tm) if it was bad ...

[mwk.livejournal.com]

Does that mean no Friday 2pm sugar quotient either? Bummer.

[drswirly.livejournal.com]

Coeliac? You're breaking my heart...

[simonb.livejournal.com]

Ick, that sucks. I've been avoiding wheat for a number of years now so I've got some experience in what is out there - whilst I can eat gluten (so long as its not from wheat sources), its often easier to say that you want gluten free as its generally wheat free as well. There are quite a few gluten free alternatives these days which are getting better all of the time.

Probably the best gluten free stuff can be brought at Tescos as a part of their "Free From" range. They do the best gluten free pasta I've come across (and I've come across some really dire stuff in my time). They also do a selection of cakes, biscuits, breads (including some very nice pitta breads) and other things. I'd give their syrup pancakes a miss as they aren't that great IME. The TruFree (http://www.trufree.co.uk/) brand (also known as TryFree) is pretty good; their snack pots are easy to make (add boiling water, wait 5 minutes) and actually taste nice. Their biscuits of various types are pretty good as well and even survive being dunked into coffee. TruFree also make gluten free lasagna sheets which can be used as you would use normal lasagna sheets.

Sainsbury's also have a Free From range, but its not as good as the one at Tescos. However Sainsburys also sell some of the Dietary Specialist (http://www.nutritionpoint.co.uk/) range of products, including the frozen meals... including gluten free pizzas and garlic & herb flat breads which are pretty good.

There are a number of web sites you can order gluten free stuff from including Gluten Free Foods direct (http://www.glutenfreefoodsdirect.co.uk/) and Goodness Direct (http://www.goodnessdirect.co.uk/). The Village Bakery (http://www.village-bakery.com/) do mail order breads, including products made in their dedicated gluten free bakery (http://www.village-bakery.com/newprods-fr.htm). Finally there is the UK Coeliac society (http://www.coeliac.co.uk/) who have a monthly newsletter (e.g. Feb 2005 issue (http://www.coeliac.co.uk/exg/february2005.htm)).

There are also a number of communities on LJ which may be useful as well, including coeliac_recipes, celiac and wheat_free.

Soy sauce is problematic as most places use the shoyu style of soy sauce which contains wheat; you can get the tamari style of soy sauce which doesn't contain wheat or gluten at most health food places or Daily Bread (http://www.dailybread.co.uk/camb/) (which is a useful place for picking up interesting gluten free breads in general). The other danger of Chinese food is that the thin wrappers used for samosas or spring rolls often contain wheat (although if you get Vietnamese-style wrappers they should only contain rice flour). Things like plum sauce also generally contain wheat - its often used as a cheap bulking or thickening agent.

I've got a number of recipes which are generally gluten free available via my LJ memories (http://www.livejournal.com/tools/memories.bml?user=simonb&keyword=Recipes). I should note that whilst the majority are wheat free not all of the wheat free recipes are gluten free; for example the flapjacks are wheat free, but not gluten free as they contain oats. Anything which contains quorn mince would also be out as it contains barley.

If you'd like any help, advice, etc with this then give me a shout; I'm more than happy to help out.

[teleute.livejournal.com]

That sucks, although I think it's easier to be gluten free these days than it used to be, and I know you already enjoy cooking, so you're in a position of power to begin with :-). From what I've heard from other people with sensitivity to gluten, they didn't expect to feel any different, because they didn't think they had any symptoms, but when they went gluten free they actually noticed a huge difference.

On the flip side, when I stopped eating chocolate because I was told I was allergic to it (although I had no symptoms) I put on 20 lbs and now I get migraines when I eat it, which I never used to. It increased my general sensitivity to caffiene too (which I now also avoid totally). So you might find that once you've been gluten free for a while you will experience unpleasant symptoms if you eat it again (accidentally or otherwise).

[lzz.livejournal.com]

Bugger. :-( Fortunately I think a lot more places are taking gluten intolerance into account these days, and I would imagine that that will continue to happen. Writing to particular restaurants or shops may perhaps help to speed this process up. It is most annoying when digestion starts to interfere with social life - although I have pinned my problems down to tea now, which is just odd.

[tombee.livejournal.com]

Bah. Double Bah. And of course triple Bah. :(

Are curry houses (sans beer) safe, and can geeks be persuaded to spend monday nights in them?