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..)
Thursday, September 24, 2009
Monday, September 7, 2009
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 mywhinging 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.
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
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.
Wednesday, August 26, 2009
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.
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.
Monday, August 24, 2009
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.
Wednesday, August 19, 2009
Monday, August 17, 2009
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.
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.
Friday, August 14, 2009
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
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
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