Easy Gluten Free Christmas Lunch

We had an early Christmas yesterday to give the kids a chance to open their presents and so that we don't have to carry presents on the plane next week. We had a very, very simple Christmas lunch. The main meal was a platter of salad vegies with a home made dill dip, and plates of cold ham and cold roast turkey (with cranberry sauce). There was also a cheese plate, and some freshly baked corn bread from the Rebar cookbook. Afterwards we had Eton Mess for dessert along with a fruit platter. The only baking to be done was the meringue for Eton Mess (a day before), and the corn bread, which only takes 25 minutes in the oven. I got the blender out to puree strawberries and a hand mixer for the cream, but other than that a couple of knives and chopping boards was all the kitchen equipment needed. Everything was gluten free (I substituted the wheat flour in the cornbread for gluten free), and I don't think anyone missed the wheat/rye/barley/oats.

Before and After

I put those two "chocolate" pictures of Harrison together - on the left is him just pre-diagnosis in October last year, weighing about 11.3kg. On the right is him in August this year, after 9 months on a gluten free diet, and weighing about 15.3 kg. He is still quite underweight for his age, but he is catching up on the height he lost.

Birthday

It was Simon's birthday yesterday, and there were lots of celebrations. Harrison proudly got Simon's presents out of their hiding spot first thing in the morning and helped him unwrap them. Then we had a nice fruit platter for breakfast (better than Simon's usual Up'n'Go in the car on the way to work). We had a "special" dinner of pan fried snapper with a caramelised potato and tomato salsa side dish. I had made a gluten free mud cake for his birthday cake, but the ganache hadn't had enough time to cool and solidify, so it was more of a sauce. Leah took some photos of a chocolate covered Harrison looking decidedly drunk, and one where he looked like a vampire with dark chocolate sauce dripping off his mouth. I'll add one to this post when I get a chance. After H had come down from his sugar high and gone to bed, Simon and I went out for coffee while Leah stayed home with Harrison. All in all a nice day.

Coeliac Awareness Week

I went to my first Coeliac Society event this afternoon - a forum for Coeliac Awareness Week. It was fascinating. I learnt -

• if you don't have one of the 2 HLA genes (HLA_DQ2 and HLA_DQ8) you will never get coeliac disease (30% of the population have the gene, and only 1% have the disease). Simon and I don't yet know which of us has the gene, but we have had the blood test and neither of us has CD now.
• Gluten intolerance is a different thing, which may or may not be related. It doesn't do any bowel damage.
• There's a tribe in the Sahara desert in which 1 person out of every 18 has coeliac disease (the highest known incidence)
• It is very rare in SE Asian populations and in Australian Aborigines. And reasonably wide spread in Ireland, Iran and India.
• Instances of coeliac disease in young and old people (under 20 and over 50) are equally spread between male and female, but in the 20-50 age group there are 4 times as many women as men diagnosed.
• The average time for a diagnosis is 5 and a half years in Australia, and 11 in the US (our doctors are more aware of it, but still not great).
• The cause of coeliac disease came to light during the Dutch famine in 1944 when there was very little flour. Many patients with coeliac symptoms had miraculous recoveries during the famine, and then relapsed when flour became available again. Before then they knew of the disease, and that it was carbohydrate related, but not that wheat specifically caused the mal-absorption.
• It's a breach of the Food Standards code to label a food "99% gluten free" or "No added gluten" - these are labels I've seen in coffee shops.
• There was a study by Catassi (in 2006 I think) which showed that for 50 healthy coeliacs, given between 10mg and 50 mg of gluten per day, no coeliacs who ingested 10mg in the study showed any symptoms. At 50mg a day there were adverse reactions, and 4 people had to withdraw because of the severity of the reaction. To eat 10mg of gluten you would have to have 500g of a food containing 20 parts per million of gluten (which is a very low level of gluten). That would be 80 slices of a "gluten free" bread that actually had 20ppm of gluten in it, or 8 slices of what some overseas countries class as "low gluten" bread with 200ppm in it. Basically it shows that tiny traces of gluten ingested inadvertently won't adversely effect coeliacs, so they don't have to be really paranoid about it to the extent of never going out.
• "Gluten" doesn't really exist - it's the collective name for the several different proteins in wheat, rye, barley and oats.
• And on a lighter note, while the rule is "if in doubt, leave it out", the lesser known rule for coeliacs is "if there's no doubt, pig out." This quote just before afternoon tea!

We were all given 2 big sample bags of GF food (most of which I'd tried for Harrison or knew about). One was a chocolate mud cake mix - I might make it for Simon's birthday.

The Alternative Bites people also put on a spread. I had heard about Alternative Bites but haven't been there yet. They are a totally GF cafe that also sells takeaway and frozen foods - pies, sausage rolls, cakes etc. I had heard many times that the food is indistinguishable from the gluten equivalent, but didn't really believe it. I was stunned at the variety and quality of the spread. It was about 5pm when the talks finished, so I took a few things home for H to try. He had a piece of pie for dinner and a couple of little treats (a bit of lamington and a wafer biscuit). He loved it all - particularly the pie. He used to love pastry and of course hasn't had any since he was diagnosed. The lamington was really really good quality and I was amazed that they could even make a wafer biscuit.

This is one place we'll definitely be visiting. Now that Terena lives south of the river we'll be going in that direction more often, so I'll make a point of dropping into Garden City.

Bread incident

We're back in the swing of things. Work is pretty busy, and I can't decide whether to sit in the library or in the law school (my instincts tell me the law school). Harrison is happy at daycare, but we did have an incident last week where he was given a piece of bread, which triggered some diarohea and vomiting. Not too bad, and it was a genuine accident - the staff have altered some procedures so that it doesn't happen again. It was our first experience of Harrison eating something with gluten in it. We are trying to teach him to ask "is this gluten free" instead of "is this alright for me", but with a toddler it's risky relying on him to be alert enough to avoid the wrong foods just yet.

We recommenced our Pilates/swimming routine on Sat morning. It was actually cool and windy (as opposed to 40 degrees), so Harrison didn't get his paddle. He and Simon played bear caves instead while I exercised. Harrison was the bear - he had a kitchen in his cave and made Simon muffins and cake. Simon's having a bit of a snooze in front of the cricket as I type. He did the vacuuming and cleaning while I pushed H around Lake Monger this morning. Speaking of H, he's just woken up from his nap, and we're off to the zoo shortly.

New library

Back at work this week... The new library and IT building is open, and looking great. Very bright, lots of groovy and comfy seating, the bookshop and an Aroma cafe half in and half out of the library, a big e-lab and heaps of other computers. Still a bit of unpacking and settling in to be done, and my office doesn't yet have a phone, but it's all so much better than the old library. I'm staying in my office in the school in the long term, but I'll sit in the library office for the next couple of months so that students finding their way around the new library can find me easily. It's actually really quiet, so I'll probably get a lot of work done.

H settled in well at daycare. He's a "big" boy in the toddlers room now, and seems to be loving it. The girls can't believe how much his tummy has shrunk since last year. It's so funny watching him go through his little routines there - putting his hat back on the peg, and stopping to take his sandals off before bouncing on the mini tramp without being asked. UWA is great with hygiene and tidiness and getting the kids to take responsibility, but they're also incredibly warm and loving. They were genuinely glad to see Harrison again and take real pleasure in seeing him happy and healthy. There was a birthday at daycare yesterday and he couldn't share the cake, so I made and iced a gluten free one last night and sent wrapped slices to daycare today for them to keep in the freezer and take out when there's a birthday. Hopefully it will taste OK!

We also swapped the breadmaker the family gave me for Christmas for the Panasonic one that has a gluten free setting. Made bread for H on Sunday and it was amazing! I liked the GF bread that came out the breadmaker we'd borrowed from Mel, but the stuff I made on Sunday was a much better texture, even though it's the same mix. Who knows, I may even start making ordinary bread for Simon and me.

Day from hell

Yesterday was quite a day... Up early to get to the airport and drop the hire car off. Got confused getting petrol for the hire car, and somehow ended up in the taxi queue at the international airport. So that made me later than I planned. When I arrived at the automatic check-in, the screen said to see a staff member - who duly informed me that I was one minute late checking in. She could see I was travelling alone with a toddler, and I told her I was going to Perth. But she refused to allow us on the flight. In fact, she triumphantly told me at the end of our conversation that I was now 3 minutes late. It was 5 hours until the next flight to Perth, I had no stroller for Harrison to sleep in, no car, and no baby seat, so no one could pick us up. The food outlets didn't cater for coeliacs at all, and the snooty manager of the big one refused to even let me read a label to determine if Harrison could eat anything. With a 5 hour flight on top of the 5 hour wait at the airport, it was shaping up as a very trying day. If I had been travelling alone and going to Sydney or somewhere the waiting time and flight time would both have been much less significant, and I wouldn't have cared. But travelling alone to Perth with a toddler - it just seemed cruel to put us through that for a one minute delay. Luckily I found a fruit salad for Harrison and had some milk with me. He slept on a bench for an hour and a half while we waited. He was full of beans on the flight, but very well behaved. He walked up and down the aisle in his flashing sandshoes about 20 times and flirted terribly with the stunning woman sitting beside us and all the flight attendants. The only concession Qantas was prepared to make was to get a coeliac meal for Harrison on the later flight, so at least he was fed. The flight was very long - 5 and a half hours, and then we waited for another hire car. Simon wasn't home until late the next day and he had both keys to the Forester, and I would otherwise have been stranded without groceries at home. By the time I got home it was 7pm, and I still had to get milk etc, and feed and bath Harrison. It was after 10 by the time he was asleep. All in all physically and emotionally exhausting, and not a day I want to repeat.

Esperance

We had a week in Esperance early in December. It was a long drive (about 7 hours each way), but we broke it up at Wave Rock on the way down and Hopetoun on the way back. Esperance is a really lovely place - the beaches and bays are magnificent. Even at the start of school holidays we had beautiful turquoise bays all to ourselves. Harrison loved the sea. We found a gorgeous restaurant - Taylor Street Tearooms which catered for coeliacs, had fabulous water views and great service and food as well. We camped at Cape Le Grand NP and at Hopetoun, and Harrison loved it. It's hard work camping with a 2 year old, he needs to be supervised every minute, and is into everything, wanting to climb trees, wander into the bush, play in the dirt... He made friends with a couple of kids (Darcey,8 and Hannah, 6) who were about 15 months into a trip around Australia with their parents. They arrived at Cape Le Grand the same day as us, and the 3 kids spent hours playing chasey and splashing in the sea and building sand castles. Darcey was particularly good with Harrison. He made up stories for him and held his hand walking around camp. They will be coming through Perth in a few months time, so hopefully we'll catch up again.

Endoscopy

Tomorrow is Harrison's endoscopy. He's doing very well on his gluten free diet - loves his new cereal, and his special home made bread. I'm providing muffins and bread to Renee at daycare, and she is doing a great job catering for his needs and making sure he has something similar to the other kids for meals and snacks as much as possible. He seems to have accepted that babycinos no longer come with marshmallows (but I have to check if I need to request no chocolate sprinkles as well), and we carry GF mini muffins and rice crackers with us everywhere now. After a bit of reluctance he now eats "super" rice crackers (rice cakes). And he is making progress with his vegie intake too.

We went to the park at Jackadder Lake yesterday afternoon for the first time in a few weeks. Last time I took him to that park he clung to me, wouldn't go on the swings or slides, didn't want to go for a walk to look at the ducks, or even just sit on the grass with me. He just wanted to go home. It was heartbreaking, and at that stage we didn't have any idea what was wrong with him. Yesterday he was into everything, dribbling the soccer ball, wanting to climb on rocks, trip trapping across bridges, having fun on the slides, he fed us an imaginary picnic, and had to be dragged away from the playground at dinner time. It's such a relief to see him behaving like a healthy little toddler.

Update

We saw the paediatric gastroenterologist on Thursday and she is totally convinced he has coeliac disease. She was quite shocked at the extent of his weight loss and distended tummy, and has slotted him in at the top of her next list for the biopsy. In the meantime we've started on the totally gluten free diet. Dr Mews thinks he looks so severely effected that his villi won't recover in the week before the biopsy, and she thought it was more important that he starts getting well, so the normal advice to continue eating gluten didn't apply to Harrison. We're quite relieved to be getting some action, and are waiting hopefully for Harrison to start putting in weight again.

Virtual Bribery

We're really keen to get Harrison eating a decent amount now that he's a bit more interested in food (even though it seems to go straight through him). So when he loses interest in dinner I now resort to virtual bribery - I get out a food magazine and he picks something he'd like to eat. Then I pretend to feed him one mouthful of the food in the magazine for each mouthful of his real dinner. It's quite hilarious having him muse over which of the pictured dips to have with his virtual breadstick, or whether to have the photo of the raspberry from the top of a cheesecake or a bit of the "cheesecake" itself.

We also have to keep track of which character we're all playing at any time of the day. If he calls me Murray I know he's Jeff - and he says "oh, sorry, I was Jeff" if I get it wrong. We play the whole gamut of Wiggles characters, plus B1 (Harrison) B2 (me) and Morgan (Dad), mummy daddy and baby cats and dogs, and so it goes on. I don't know how he remembers who we're all supposed to be.

Camping

We spent the weekend camping near Dwellingup with Mel and Tim. It was very hot - even humid - on Saturday, and a bit overcast on Sunday. Harrison loved his camping experience. When we asked him afterwards what was the best bit about camping, he said "melandtim". Mel made chocolate scones (Harrison-speak for rocky road) for which Harrison has a huge crush on her.

Back home, we're closer to the official coeliac diagnosis (the blood tests were positive), but battling the medical system to get an appointment this year with the sole paediactric gastroenterologist in Perth. You can see his huge swollen belly in the photo of him with Mel on the weekend.

Answers?

We might be closer to finding out why Harrison has been so unwell. The paediatrician is almost certain he has coeliac disease. We go back on Friday for the results of the blood tests they took yesterday, and the next step is a bowel biopsy. Once the diagnosis is made, we'll have to start learning about a gluten free diet and join the coeliac society.

Needles, doctors etc

We've had a torrid time the last week or so. Harrison is still losing weight (he's only 11.5 kgs), he has a huge distended tummy and is just skin and bones. He's still vomiting every day or two. Getting a blood sample was a drama - I took him 4 times to get the sample taken, twice we were turned away because the nurses weren't confident to get a vein, on one visit they spent 2 hours pricking and prodding him tried 8 times in both hands and arms, and still couldn't get any blood to flow. Finally I took him to the lab at the children's hospital and they got the sample first try. Nothing showed up from those tests, and nothing abnormal in his ultrasound, so at least a few things have been eliminated. The search goes on for a reason for this weight loss.

He had a wonderful time with his friend Colin at the zoo on Saturday and seemed keen to eat, so we thought he might be getting better. But he was sick again on Sunday night, so obviously that was wishful thinking on our part. Simon takes him to the paediatrician tomorrow.

Ekka

Well, it's not really the Ekka, because Perth people are way too sophisticated to call it that... It's the Royal Show. We took Harrison along this morning. He thought he was going to the Wiggles concert, so I spent the morning trying to explain why this show wasn't going to be the same as a Wiggles show. I did promise that there might be a ride that was like the Wiggles' big red car, so he rejected tame rides like the merry-go-round in favour of kiddy car rides. He trotted off to get in the cars all by himself, and didn't need his mum or dad.

Unfortunately he's still not particularly well. He is very subdued and seems to have a very long lived tummy bug. So he was probably the least excited 2 year old at the showgrounds, and in fact fell asleep after an hour or so.

A sunny day

Harrison is quite a bit brighter now, and it was a stunning warm winters day yesterday in Perth, so we decided to take advantage of the weather. Simon was on duty at the UWA Open Day, so H and I went to visit. Highlight of the trip was H getting a helium balloon from the guy at the student union stand. It's amazing to see the unadulterated pleasure a 2 year old gets out of having a balloon tied to his wrist and watching it bounce up and down and float in the breeze. We also had lunch with Mel and Tim - old friends of Simon's who've just moved to Perth. They live only a couple of minutes from us, and Tim works at UWA. We ran into them, as you do, in the car park at Karrinyup shopping centre a couple of weeks ago.

Pneumonia

News today is that Harrison has a bit of asthma as well as pneumonia... He had a chest x-ray yesterday, and is not a well boy. One of his lungs is a little collapsed. Poor little thing is mostly sleeping and coughing. Hardly eating at all. We had him in our room in his port-a-cot last night, behaving like new parents and listening intently to his breathing. He's a little trojan though - he is happy to hold the mask of the ventolin thing to his face and breathe in and out for me. I think he's intrigued by the contraption. Isn't so thrilled by taking medicine though. Simon is looking after him this afternoon, and will stay home with him on Friday as well. H goes back to the doctor tomorrow.