More Misconceptions

Upon being offered (and refusing) a sausage roll at a neighbour's house:

"Oh, you're not vegetarian are you?"

"Well, yes, sort of, but I'm also coeliac, so it's the pastry that's more an issue."

"Oh poor you. Ever so sorry we don't have anything suitable"

"No really don't worry"

"Funny thing is we used to have loads of things that would be suitable. Husband used to have that, but since he got better we don't any more".

Erm, got better? That ain't coeliac. Sigh.

F*****g hundreds and thousands

So I spent ages this weekend making things: gluten free birthday cake for NGFH because his mum was down early for his birthday. Then, as we had to cook dinner too, and GF desserts are impossible to buy, I made a GF apple crumble. (This is possibly the 4th time in my life I have made a dessert from scratch. You just don't get GF desserts ready-made.)

All was good, but felt bloated in the eve, and then woke up early this morning very uncomfortable. Put it down to the fact that I'd undulged in custard, and milk in my coffee the night before. Got on with things in a fatigued kind of way.

In the afternoon NGFH told me I looked very tired, which made me cross, but also made me think. I checked the custard pot from the night before, but it was ok. So we sat down and had tea and the rest of the GF birthday cake. Halfway in it hit me: what about the cake decs? I was sure I'd checked them all.

Quick into the kitchen. Hundreds and Thousands. Gluten.

DOH.

I cried.

I'm still liable to burst into tears about it. I checked EVERY ingredient in everything yesterday. Apart from the effing hundreds and thousands, which NGF Son had spread liberally across the cake.

Officially fed up now.

Fed up of Free-From

So the GF thing I was ok with, but 5 or 6 weeks after being on the diet I started to feel progressively worse and couldn't work out why. I checked everything I was eating: preparation methods, chopping boards - you name it, but couldn't spot a surreptitious source of gluten.

Then a few days a go a had a few really bad days of bloating and stomach pain and spotted a trend: dairy. Started after breakfast (GF cereal with milk), got worse as I had cups of tea with milk, and then mozzarella on my GF salad for lunch. So as an experiment I picked up some soya milk and dairy-free spread (for my unpalatable bread) and tried a day or two without.

Result? Feel loads better. Physically. Bloating and pains gone. Have dropped a size on my waist in the space of 24 hours.

Mentally? Not good. Gluten free, dairy free, non-red meat eating - not a good combo. Lunch options reduced to one salad bar* if I don't take my own. Dinner options dwindling. Cake for nonGF husband's birthday this weekend seeming impossible. Cheese. I love cheese. It makes veggie food tasty. It makes GF pasta bearable. And chocolate... sob.

There's a reasonable chance this intolerance is temporary, and once my small intestine heals I will be able to reintroduce dairy. (I need to focus on that when I'm looking for a quick dinner because I'm knackered after work and NGFH is out for the eve and I just want an easy meal and realise there's no such thing for gluten and dairy-free people and I feel tears welling up in my eyes and try very hard not to cry in the middle of the M&S food hall.)

Ho hum.


*Alpha Bar in Oxford's covered market is pretty much saving my sanity with tasty veg/vegan options galore. But even their lovely lentils get a bit dull if they are the only option in town.

Getting Funky in Germany

I had to spend a week in Frankfurt with work a couple of weeks ago. I speak no German at all, which bothers me on a good day as I like to be able to at least attempt communication when abroad, but was especially challenging given my new food requirements. It was a mixed bag of eating experiences.

Day one I was at an all-day conference with buffet lunch provided. I'd booked it ages ago and hadn't specified my dietary needs as I wasn't diagnosed, but I figured there was bound to be something I could eat, even if it was just Rice On Plate. Turns out I was wrong: the veggie options were pizza and filo tart things (time was there wouldn't have been a veggie option, so some progress) and despite eating some chicken of late I just couldn't bring myself to go for the meatballs. So I wandered out into the streets and eventually found a pharmacy with some GF foods. So my lunch that day consisted of a bag of the fabulously named:


After this things picked up a bit though. At a Thai dinner that night a colleague spoke German and was able to ask what was OK and what wasn't. Then the next night we went to an Ethiopian restaurant. This was completely new to me: I've never come across an Ethiopian restaurant in the UK, but there were several in Frankfurt alone. It was fab! For both veggies and coeliacs. The one we went to did big platters to share, and as there was another veggie there the two of us shared this while the others had meat:


Lentils, fabulous potatoes, salad, okra. All very tasty. But the best bit was that Ethiopian food is traditionally served with a bread called "injera", made from a gluten-free cereal called teff. You use the injera to scoop up the food much as you would a chapati with Indian food. Lovely, and totally GF! Couldn't believe my luck.



Rest of the week was something of a battle as the Germans mostly do very good bread and lots of meat. At the conference venue the only option, day after day, was the same tomato, mozzarella and rocket salad. Could be worse, but got a bit tedious. But the hotel I stayed in volunteered some lovely warm and tasty GF rolls when they saw me bringing my own stale bread, and on one evening I made great friends with a chef at a posh buffet, who talked me through every dish available and made sure I got a lovely meal. Didn't get far on the desserts, but that's the case most places.

So, all in all not bad, and far better than a week subsisting solely on Funkies.

I am SO stupid

Since my endoscopy two weeks ago Friday (which I was going to post about, but it was a bit unpleasant to be honest. I have a photo of the inside of my small intestine, but posting that seemed a bit like Too Much Information.) I've been back on the full GF diet. The Gastroenterologist said he couldn't say without biopsy results, but all the pointers were to Coeliacs, so I should go for it. He also asked if I was anaemic, which I'm not (although close) cos I "looked a bit pale". This was at 3pm when I hadn't eaten since 6.30am that morning. Of course I looked a bit pale!


Anyway, had been sticking to the GF quite religiously, but not feeling all that much better. Had put this down to recovery time, and the fact that my symptoms were enough that it might take a while. But on hols this week I still had the telltale jabbing pain in my left side, and couldn 't work it out. When I woke up on Wednesday it occurred to me to double-check my vitamin pills. I've been taking a few supplements of various sorts to try and build myself back up. One was a vit B complex. With, as it says on the front in quite big letters, added "Brewers yeast".


Doh doh doh. Brewers yeast. From hops. Cereal with gluten. So following a strict diet for 10 days I'd been supplementing with a gluten tablet every morning. IDIOT. It even said on the bottle "from cereal containing gluten".


So now I'm properly GF. And slightly cross about two weeks wasted. The lesson, as I'm really starting to learn, is ALWAYS READ THE SMALL PRINT.

T minus one

So I finally get an endoscopy tomorrow to confirm my Coeliacness. I've spent weeks being cross that it's taken so long and looking forward to getting on with a GF diet, but now that it's upon me I'm starting to really think about all the things I won't be able to eat.

So I just had a "for old time's sake"" lunch of an M&S prawn sarnie (which trumped wraps or paninis after some deliberation) followed by a cinnamon pastry. For dinner I think it'll have to be fresh pasta as there's some spinach and ricotta tortellini in the fridge. No brekkie tomorrow unless I get up extremely early, so I had mini wheats this morning.

I'm already bloating up courtesy of the sarnie and danish, so I know it's a Good Thing to be getting on with it and cutting out the evil gluten. But I may spend the afternoon wistfully pondering Pret sandwiches, Morton's mozzarella and sun dried tomato baguettes, Ben's cookies and other such lunchtime treats.

I am lucky enough to have a couple of extremely tasty options on my doorstep at work though: the Alpha Bar does amazing salad boxes, and for a once-in-a-while blow-out there's The Mission who will serve their delicious veggie burritos without the tortilla in a bowl instead.

So all is not completely lost. Bring on the endoscope!
(Erm, sort of..)

Getting a Glutening

Well after an enthusiastic start it's all gone a bit quiet on GGF. Reason? For the next few weeks I'm not going gluten free, in fact I'm under doc's orders to gluten myself up :o(
Due to the appointment debacle described earlier I thought I wasn't getting a biopsy till end of Oct, and agreed with my doc to go GF for a while then reintroduce it for a month before. So I had several weeks of starting to feel amazingly better than I have in a long time. Then my whinging pro-active appointment chasing paid off and I got an appt for the end of Sept - yay! Time to get on with it at last! And time to get back on the gluten.
I started rather gingerly with a little couscous in an otherwise GF salad, but the twinge in my side was back pretty quickly. Three days later I got to the "sod it" stage and had a panini. Bad move. Afternoon spent lying on the sofa with a bloated tummy the size of a football and waves of what felt like nausea. Nice.
So, three weeks more to go of daily poisoning, and although I knew I'd have to do this and was looking forward to a "last chance" to munch on lovely bread and croissants and fresh pasta and scampi and pastry and cakes and sushi and all sorts, I'm actually just a bit fed up to be bloated, tired and in ongoing pain. I can't believe I put up with this for so long.

Pasta Disaster

I got all excited when mournfully passing the fresh pasta section of the supermarket this week to see a gluten-free fresh spaghetti: Del'Ugo's "Natrapasta". The name should have rung alarm bells, even if the look of the pasta didn't. But with the memory of lovely fresh pasta still fresh in my mind I thought I'd give it a go.
As it was a pack for two I convinced NGFH to try it too, and in a stand of solidarity he agreed. We've just cooked it. And tried it. And drained it to put in the bin.
It's made from chickpea flour, and, well, it tasted a bit like ground chickpeas, with the same crumbly consistency. After one taste I was ready to bin it, but NGFH got all chirpy and insisted it couldn't be that bad. He tried it. It was.
So now we're cooking two pans (with two spoons and two colanders): normal dried spaghetti for NGFH and a dried Tesco's (I think) GF one for me. Dinner's late. But at least it's edible.

Tastier than they look

But that wouldn't be all that hard, would it? From my box of Glutafin freebies, two rolls that looked even scarier in the packaging. I know they could easily be mistaken for plastic rolls from a kids' play bakery, but filled with egg mayo they were ok. I did hollow out some of the dough to make the egg/roll ratio a bit more palatable, mind. Still, all is not lost.

GF in the news

There's a piece about coeliacs with reviews of several GF foods in today's Guardian.

Dear NHS, You're making it hard for me to heart you.

This is supposed to be a light-hearted blog about my new gluten-free adventures. This story is related to being Coeliac though, and I think it might be cathartic for me to write up the almost-comedy (if it wasn't reducing me to tears) experience I've had trying to get an NHS referral.

So the first test for Coeliacs disease is a blood test to look for the antibody that reacts to gluten. I had this test done on July 17th. I got positive results the following week and on July 15th spoke to my GP on the phone, wherein she explained that I needed an endoscopy. As going GF for life is a fairly serious move it's obviously best to be 100% sure, and a biopsy of the small intestine will usually confirm damage caused by the antibodies. The GP explained that as with the blood test, I shouldn't cut out gluten until I had this additional test, in order to reduce the risk of a false negative. She said three weeks or so to get an endoscopy. No problem.

A week or so later I get my referral letter, and NGFH, knowing I'm keen to get on with it, phones me at work with the details. I have a choice of four hospitals (insert "Your Freedom To Choose Means A Lot To Us, Important Patient Type" or other similarly not-the-point slightly patronising sentiment) but the only one I can realistically get to is the John Radcliffe in Oxford, so I phone them. First surprise: earliest appointment is October 21st. This is in late July, so a three month wait. Three months of not being able to cut out gluten and free myself from the symptoms that are dragging me down. Of course they're not life-threatening, but if I can stop being bloated, exhausted, borderline anaemic, etc etc then I'd quite like to get on with it.

A few days later in a flash of inspiration I phone round the other three hospitals, and discover that Swindon's wait time is only six weeks, and West Berks even less. Hurrah. So I cancel my appt at the JR. Second surprise: canceling doesn't put me back into the Choose & Book system, it cancels my referral outright. I need to talk to the GP again and get another referral. Luckily a phone appt will suffice, so on 4th August I speak to the GP and explain, mentioning that West Berks has a short waiting list. She says she will re-refer me.

Back to Choose and Book. Phone them on Friday 7th to book new appt directly at West Berks and get told that the earliest appt is... end of October. Explain that I spoke to the gastroenterology dept directly and they said they were clear throughout September. Nope, only October is showing on the system, and in fact only 7th or 14th, neither of which I can make. (Me:"I can't do those dates, I'm away." They: "Well they are the only two on the system." Me: "What, EVER??"). In the course of this extremely frustrating conversation the woman I'm talking to says something that makes me backtrack:

"Hold on, did you just say ROYAL Berks hospital?"
"Yes, that's right. Royal Berks. In Reading"
"Not West Berks?"
"No, that's in Newbury"
"Yes, I know..."

So I've been referred to the wrong hospital. OK, calm down, it's a simple mistake. Back to the GP surgery, explain to grumpy receptionist who implies it's all my fault and I'm rather a nuisance. She writes a note for the doc and tells me to ring back Monday. Call on Monday, am assured by reception that correction was faxed to the "Choices Bureau" the previous Friday.

(Little side note here: the Choose and Book system hasn't been rolled out to all hospitals or surgeries yet. So while many GPs will print your referral complete with ref number before you leave the doctors office, thus ensuring you are in the system, mine has a secretary send a fax to somewhere in Banbury where it's put into the system and they phone them the next day to confirm that all the faxes have been received. Woohoo for technology).

Friday August 14th and after a few calm-inducing days of not being on the phone to some department of the NHS, I work up the courage to try again. I phone Choose and Book. They tell me I have an appt booked at the JR (which also isn't on the C&B computer system yet, so the fact that they canceled me won't tie back up with the central C&B appointments. Ever.), and also an un-booked referral for the Royal Berks. Nothing for West Berks. Back to GP, and this time I speak to the secretary, who tells me she faxed off the letter on the 7th, but she'll do it again now to be sure.

Monday 10th August, phone Choose and Book. No sign of West Berks appt. Back to GP. This time the secretary takes my mobile number ("This has been going on quite a while now hasn't it?") and promises to sort it out. And she does: 10 mins later she phones back with a reference number for my referral to West Berks. Hurrah. Finally.

So I've just been on to the Choose and Book website with my lovely new shiny correct reference number. Earliest appointment at West Berks: 23rd October.

Sob.

Buenos Burritos*

Went to see the fantabulously funny Bill Bailey last night at the New Theatre in Oxford, and we stopped for a bite to eat beforehand at The Mission, which opened sometime last year I think, to much excitement from all of us who have been bemoaning the lack of Mexican food to be found anywhere nearby.
Looking for somewhere for a quick meal and not being remotely interested in burger bars even before I was GF, I checked the Mission's menu and found that they do "Burrito bowls": all the ingredients of a burrito - rice, beans, meat, salsa, guacamole, etc - but served up in a box without the forbidden tortilla. I had the veggie one, and it was delicious. Hurrah for tasty GF fast food.

*Note to self: less alliteration in post titles please

Going Everything-free?

Am starting to worry that a lot of GF food is a bit like veggie food on some airlines, where they combine vegetarian with vegan, kosher, low-salt, low-fat, lactose-intolerant and more. (On a Cathay Pacific flight once where I specified "vegetarian" I was served steamed spinach on a plate for breakfast while NGFH got a nice cheese omlette and a roll and butter. I'd been in the air for over 12 hours. I cried.)
This is just based on this morning's cereal, which while gluten free was also sugar free and salt free and low fat and frankly totally flavourless. Fine, I want healthy, but not if it's like eating cardboard. Choices, please??

Pizza Palaver

When I was first pondering my diagnosis of coeliacs I had a moment of mourning my trusty breadmaker. It's a Panasonic that I've had for 5 years or so, during which time it has produced many a tasty gluten-filled loaf and vast quantities of pizza dough. But as I've started to discover how expensive and generally yucky shop-bought GF bread is, I've started looking and found a good many recipes for bread machines. Mine even has a GF setting.

My first attempt at a loaf this weekend was too disastrous to write about (let's just say very very soggy) but this evening I decided to have a go at a pizza base. Not having stocked up on all the different types of GF flour yet, I used a Doves Farm white bread mix. Putting it all together with milk and eggs and things was a bit more complicated than the usual mix, but not that hard. And once I'd scraped the flour off the sides at the start of the programme it all started to look a bit, well, dough-ish.

First surprise: the instructions say "spread the dough on to an oiled tray". I didn't realise they really meant "spread". It's like a very thick cake mixture, and needs spreading on to the tray with a spatula. OK. We can do that, although non-GF husband is starting to raise his eyebrows and mutter in the background. Into the oven though and after ten minutes it's smelling like a pizza base - even NGFH admits so. Bring it out browned and looking ok, top with tomato, cheese, veg etc (and ham and pineapple on NGFH's side) and back in for 15.

The verdict? "Edible". With a flavoursome topping the first few mouthfuls were "hmm, yes, not bad" but then the general blandness and spongy-ness of it started to kick in. It certainly would have been better as a very thin base (note for next time) and it needed more salt. Mind you I used to make pizza dough with pesto in it, so we're used to more flavour.

Have heard good things about this mix that I'm going to try soon. Hints and tips gratefully received. For now, missing wheat.

Passable Pita

Had a remarkably edible sandwich for lunch using Tesco's Free From pita bread, filled with grilled halloumi cheese and some chopped red pepper. I think I would just about say that it could have passed for normal pita, in both texture and taste. Yay.

First GF meal out

It was with some trepidation that I approached my first gluten-free meal out. I had trawled around the web and found a few places in Oxford that had GF labelled on their menus, but we'd been to Las Iguanas last time, and when I met up with C it was tipping down and we couldn't face the walk across town to Carluccio's to try out their GF pasta. So we opted for Quod.

I worked out the obvious stuff from the menu, but there were a few sauces and things that I wasn't sure about, so when the waitress came over I started with "I have some awkward questions first: I can't eat gluten."

I don't know what I was worrying about. She didn't bat an eyelid, and knew which of the main courses were gluten free straight off, all except for one, which she checked with the kitchen and came back a minute later to confirm it was ok. I picked caprese salad for a starter and she said it was normally served on bread but they would leave that out, and she'd double-check on the pesto that it was served with.

Prawns and salad for a main (I tried to get C to have chips so I could steal some but the waitress pointed out they weren't GF, so it's just as well she didn't), and again she knew exactly which desserts were ok. As she brought the bill I thanked her and said how pleasantly surprised I was, and she explained that she was in fact studying nutrition. So I don't know if I just had an exceptional server, but I hope my meal was a good indication that Quod is happy to adapt dishes for coeliacs. I'll certainly go back to test out my theory.