Gluten Free Sushi

Sushi. Well I can't take credit for these, Andrew (my partner) made them. They are good! They have Teriaki chicken and omelette in these ones, and Greek Salad at the side.

So, my understanding is: You cook rice well ahead of time. Cool. Slice a kilo of chicken thighs, cook until white, add sauce (I think it was Passage to ... GF Sauce range), set aside. Make an omelette.

Using a bamboo matt, lay down the nori (this is just sea weed and is GF inherently), put a layer of rice on, and a strip of omelette and layer on the sauce - only a little), wrap it together using the matt.

Enjoy!! I may have to get him to 'guest blog' the how to make omelette part.

Cheese Buscuits/Scones

This recipe makes many scones, feel free to freeze them before or after they are cooked, they work well either way. If I had a preference I'd say to cook them after freezing them and they have that nice freshly baked aroma/taste that is so appealing.

Whisk into a bowl 2 1/2 c rice flour, and 1 2/3 potato starch, 3 tsp baking powder, 2 1/2 tsp salt, 1 tb sugar and whisk all together - either by hand or use a food processor. I like my Kenwood Chef but I want a thermomix. a thermomix might be too small for this recipe size though.

Cut one cup of butter into cubes, mix through, when it resembles breadcrumbs add in 3 eggs and 1/2 c of butter milk. If you want all cheese scones, add 2 c shredded chedder cheese into the mix, add a little water if required. OR you could like we did halve the mixtures into two equal halves, one with 1 1/2 c of chedder cheese, and the other with herbs and pepper, or add 1/2 cup of sugar and some fruit or whatever you like to your scone mix, add water as needed to make into a pliable dough.

Roll out as doughs and using a floured cookie cutter or a glass, cut scones out. Bake in a 190 degree celcius oven for 10 to 12 mins. You can brush milk and add herbs and dry garlic powder on top.

Gluten Free layered White Choc and Choc Mud Cake

Monika's birthday cake this year! What a decadent mess... I am almost loathe to post it with the exception of one thing. The white chocolate mud cake was a complete sucess. The chocolate one was too heavy (yeah I know, thats what a mud cake is suppose to be, right?) It was just too rich for my palate, and everybody elses in my family. It is rare we bother with sweets at all. However, birthdays and such are exceptions. The white choc cake was a keeper though, and here is its recipe:

Preheat oven to 160 C.

I used a silicon giant cup cake mould (I would use this for the top, as it is a lighter cake, if I cook it again.) Grease a pan if you are using metal and line with baking paper.

In a saucepan, put 600 grams good quality white chocolate, 400 grams of butter, 2 cups of milk (I used soy it was still good), and 1 1/2 cups of caster sugar, put it over a very low heat, and mix together until all the chocolate and butter have melted, and its become a shiny, silky smooth texture. It shouldn't take long. Set aside.

In a bowl beat 4 extra large eggs and 20 mls of Gluten Free vanilla. Making sure the chocolate mixture is cool, stir gently into the egg mix.

I find sifting gluten free flours pointless, as they as a rule are never lumpy. If you feel you must go ahead, use 200 grams of Self-Raising GF flour and 300 grams of plain flour. I always stir these together to make sure they are evenly distributed. Then add the white choc mix by half into the flour, mix through, then add the second half more slowly, folding it in. Pour into prepared cake pan. It will need at least 1 hour 20 minutes, but up to 1 hour 40 minutes. Using a metal skewer test if it runs clean you're set.

While cooling, melt another 400 grams of the white chocolate on a very low heat until completely melted, stir during whole phase. Stir in 200 grams of sour cream. When the cake is ready, run the ganache over the cake.

I adapted this recipe from www.exclusivelyfood.com.au into a larger recipe, and also made it gluten free, it worked a treat.

Updates

And so I should catch up on the health of my family, lots of it was on my other blog here.

Labyrinth is officially considered intellectually disabled by our lovely government. This means we are going to be getting a tiny bit extra money by fortnight now. This hardly covers our cost of living but it's better than nothing. Well, we could be worse off, but our rent is going up and so is our food bill with all the allergies in the family.

I have sjogren's syndrome. Raven has some wierd eye problem where he has extreme helio-sensitivity and even water makes him hurt. I can't imagine he has the same problem considering 95% of SS sufferers are female. He gets mistaken as a girl often enough, but he still has the unmistakable male parts. He also has some behavioural problems, and tells me constantly that he loves me and I am special. It's lovely but it ends up frying my brain. I've also had what started out seeming like classic glutening symptoms that didn't go away for nearly two weeks, now I've got a cough, sweats and a temp. It seems to have gone through the children too, like wildfire.

Dante has his depression. He's seeing the top guy in the state, he saw him once, was so concerned he went and booked him appointments for over a month. He also told me today he thinks about being female a lot. I don't know how to take this, as he is often told he is a very beautiful girl. He was once singled out by my brother at a gathering who asked me who is sitting by his daughter, he told me he thought Dante was the prettiest girl in the room. More often than not people who don't know him think he's female. He's just a vewy pweety boy, really!

Kai has his incontince. It is severe.

Raven, Dante and Monika have all got wierd allergies, such as Monika's carotene issues. Gluten of course for Raven. Dante is reed thin like Raven, but has height, he's on the 60th percentile. But he will, if he hugs it through puberty as he has since birth, be shorter than Monika who is 75-80%ile. She is wearing clothes that Raven is handing down immediately! She wears a size 5, she only turned 3 in late September. And her hair has lightened to Dante's shade of honey.

Andrew suffers from his headaches. We've finally accepted his depression is a seasonal thing, but he's depressed now because of his constant headache. I hope its impacted wisdoms so he will get the relief he needs sooner than later.

Oh yeah, I've got impacted wisdoms too, I'm on a three year waiting list for surgery as one of the roots has intwined with the nerve, and I'm looking at a good chance of a broken jaw during surgery or the following three months as it will leave just half a centimetre of jaw bone left when the damn thing is removed.

I also am on a waiting list to see a public hospital Rheumatologist. I had a blood work up to see if I was positive for Sjogren's and at the same time the GP ran some more tests. Result: I need to see a specialist, a lot of red flags were raised. She will not elaborate.

My broken arm last year was not a coincidence. I have calcium absorbsion issues, as well as iron ones.

I have depression. Anyone?

I've severely pissed off Lady Luck, haven't I?

Mixed News.

On Friday, we had our second appointment with the amazing Dr Donahue. While it looks like at this stage that it is only Raven and I are the only with Coeliac's Disease, Monika definately has a carotene allergy, and she has either a cow's milk intolerance or allergy. Dante has probably got Lactose Intolerance. Labyrinth is going to have extensive psychological and physiological testing for her various problems. Kai is all good. Any one of the others do have the potential of developing coeliac's disease (or it didn't show up in the bloods, apparently it doesn't often with children), but considering Dante can predict when he will get diahrea, it's due to milk usually, Monika's diahrea has really lost it's severity since severely removing dairy and carotene from her diet. The doctor believes this will disappear eventually. I do hope that none of the other's has got it, because they'll continue to cop damage until it's spottable/spotted. This can be tested for annually. We have some tests to run on Dante, some strategies to use with Kai (its not a medical issue), lots of testing for Labyrinth and to keep doing the same as we are dietry speaking and homeschooling.

I've really been fantastic, with the sleep apnoea machine filling in a significant part of my health recovery puzzle. I have been feeling amazing, actually able to keep up with a pretty great aerobic routine and have lost a dress size. But on my birthday (I'm cursed I swear) I pulled a muscle in my back and haven't been able to excercise (or do much fun stuff) since. I've got bruising all over my back, and slowly getting rid of the knots. It was caused by from a crouch jumping straight up into the air to a straight position, then back. The problems arose when the Wii remote and Nunchuck were not far enough apart (and geez I'm only average height) and it tugged on my right side (been doing the high impact version on the Active (game?). It is also naughty of me as I've a curve in my spine and I shouldn't jump or do high impact. Huh, I have been handling it OK until then, I'd completed 6 days at that stage. I was doing other stuff too, this is just so frustrating! The one good thing this week it seems is Dr Donahue accepts that Raven and I are both Coeliac, while he can't 'officially' give the diagnosis he will give a letter to us to the effect that Raven must stay on a Gluten Free Diet. When Raven gets older he can make a decision to do a gluten challenge and see what happens. It's pretty obvious though, and it would suck for him, but it is his decision when he is old enough to do so. I was totally divided in wanting the full diagnosis and not wanting him to go through the biopsy.

That's all really, besides lots of recipes I'll be sharing in the next few days! Here's to a better health for all of us!
Cheers, Q.

Getting Somewhere.... FINALLY!!

My health is getting lots better since using the Sleep Apnoea machine, excercise and obviously off the gluten/mostly off dairy diet. I feel flexible, alive and energetic, YAY!
All of the children except Raven has been on a mini-gluten challenge followed up by a blood test for all of them, Raven as a bit of a control.
The bloods were taken on Monday, hopefully in time for the results to be ready for their next appointment with the pediatrician in three weeks. He is a great doc so far, it took some pushing to get this far, but finally we're there, and he's hearing us, nice feeling. But really it is expected just never seems to happen that way...

Labyrinth has a Sleep Apnoea test when Andrew has one middle of next month, if she has that it might explain her move swings and lack of attention span at times.

Monika is still sore and sick, the poor lass. Little improvements are big here, and she has been a little improved, strange since she's had more gluten than usual...

Other than that I'm going to make Cornbread for tea, which I'd better get on with right now!
Weight has been coming off, it is visible now... but still got quite a bit to go... too much really but I'm capable and determined now! Until next time Q.

Lots and a New Recipe - Greek Salad!

Greek Salad

Salad Ingredients:

1 bitterfree cucumber,chopped

125 grams fetta (we used sheeps), cubed

10 - 15 tiny roma tomatoes - chopped

1 Spanish Onion, roughly chopped

10 black olives,halved

Mix together in a large bowl.

Dressing Ingredients:

Balsamic Vinegar with Roasted Garlic

Raw garlic

Generous spoon of Basil Pesto

Equal sized spoon of chopped Chives

Mix well then carefully toss through salad.

Obviously this recipe is GF free, Cow product free, extremely easy, quick and worth it in yumminess. The above was served with Woollies brand (NOT Select) steak chips and steak. I emphasize the plain brand as it is oddly the case, the cheaper brands are often gluten-free while the more expensive brand includes wheat based mulitdextrin, excluding it from the GF diet.

Monika is definately still suffering from chronic and sometimes health threatening diahhrea. Keeping the food diary helps - it's shown up a probable Carotine sensitivity - not great - no carrot/pumpkin etc. To keep her borderline we have removed this from our diet - but still she's on gluten. Not until we get a biopsy done - who knows when... and all this time she's losing weight, sick all the time. It is a hair tearing moment.

Raven is still GF and he's changed into a healthy,growing little man. He just holds onto his leavings - but can do them on demand. This is usually us putting up guide posts - he must do chores, do his lessons, go toilet before he can play the game - Little Big Planet. It's working but how long will it be before he's happy to just go without prompting?

Dante's been sick on and off this week. All from party food I'd wager. A particular example that flies to mind is he ordered a milkshake at George's party on Wednesday night, he had diahhrea all day Thursday...

Kai's good. As always.

Labyrinth is emotionally a timebomb, always going off. She's over tired and grumpy, poor concentration, a real problem. So, she is off to have a sleep study in May, same night as Andrew - to test for sleep apnoea for both of them.

As for me, it's up and up! I've been using the Sleep Apnoea machine, sticking to the GF diet (15 months so far!) I've got motivation, energy, less headaches, pain minimum. I do excercise everyday. I think I've isolated another piece of my puzzle - Sjogren's Syndrome. I can't blame my wisdom teeth problems on it though, thats due to a small jaw size. Scary! Proven again by having my jaw measured for the sleep apnoea machine, I needed small. Lots happening - much to be happy for. 15 months ago I just didn't want to go on, and now the hope has grown tangibly. Tough they've put off me seeing a dental surgeon again for another month. ARGH!

So most of my frustration lies on the doorstep of a broken medical system. If we could but be looked after decently Monika wouldn't have to suffer so, and all the waiting for my teeth is an issue too. FIX it up Ruddites. NOW!

That's my small rant over, if you try the salad you will enjoy, Q.

I

A new community, plus the scary side of Silly Yaks.

This afternoon I just joined a wonderful ceoliac society online called CeoliacFaces, already I've had two lovely people welcome me! It came while I was trying to find a correlation between ceoliacs who have siblings with CD too. I was wondering just how many of my children will end up having it.
Then I came across the new community and started checking out the blogs, and I found this image:

It made me quite upset. These are not malnurished children from a third world country, these are undiagnoses ceoliac children from London! OK it was taken in 1923, you can find all the details from Sonia's Gluten Free blog here. It is so frustrating to get a real diagnosis, the below images are of my son, Raven. He's four, and he can wear his little 2 yo sister's clothes! This is taken while he was bloating - at this stage he was still on gluten. In this condition the hospital pedatricians told my husband and I that they couldn't do anything for him. Yes he'd tested positive to an anti-immune disease but he didn't seem bad enough to pursue it. Judge for yourselves:

Currently he's doing OK, he still bloats a little but not like this! He's gluten free! He has a little dairy now. He doesn't have accidents at least once a day, he isn't in pain every day. We took him to a new doctor who agrees that I'm as diagnosed as much as I need to be (it's up to me if I want to go on a gluten challenge and have the biopsy - I just can't imagine going through the agony I was going through a year ago...). But why should a little boy have to go through this daily because the doctors say he's not bad enough to warrent further investigations? So this new doctor got us a DNA test - Raven's got both markers to say he has the potential for CD. They are letting him back to the hospital but no way was I waiting to put him on a gluten free diet. This cycle of trying to get a diagnosis for Raven has been a year and a half so far. I remember (and not knowing at the time why) Raven would scream if I tried putting his knees up to his tummy as a baby to change a nappy, so to be kind I would change him on his side. I feel so guilty now and I get upset that they still have not given us any real diagnosis at the hospital.

We are now pursuing Monika's issues. That's the two year old. Before eating food she was way above average height and weight, now she's below. She doesn't seem to bloat like Raven but she's developed severe diahrea in the last month. The doctor was so close to saying GF diet, but she now after discovering she has lost nearly 2 kilos in a month that to be on the safe side she'd better give her antibiotics just in case it was missed in her stool sample (that was negative for giardia). We can put her off gluten in two weeks. I think I just want her off it altogether! We have now got access to a pharmacy test @ $30 which is a blood prick test which shows gluten intolerance, we are going to get that for each of our children! Thanks, Q.

The news seems to get better and better.

and worse and worse!

Raven has improved amazingly under the Gluten Free Diet. This of course is NOT enough to prove he has Coeliac's. He has to go and have a biopsy. As an adult I am content, I know what I'm "missing" out on and realise the benefits way outbalance eating something that's making me double over in pain and be unable to make it to the toilet most days (yup that's the reality of the thing). Unfortunately, being a child and later on a rebellious teen, Raven asks me even now "when is my tummy going to stop being gluten free?" Poor little man. So he needs the diagnostic "proof" that it is indeed what it is.
He cetainly doesn't miss out on his share of treats, but he does notice what he's eating is sometimes quite different from the other children.
Hey, I've noticed this since he was a baby, he was in pain while I changed his nappy (the bloated belly) and its re emerged memory is quite strong now he's had to go back into nappies for a short while (his accident's were daily and on furniture at times). But now he seems much better and he's making it every time now. There has been days when his belly is flat (that is amazing considering at times he looks like a pregnant toddler, and never without some form of bloat). He still seems blase about his occasional accidents.

And now for the worst news I've had to contemplate for myself yet. I have wisdom teeth problems. Both bottomies, actually. One's roots is scissoring and one is wrapt around the main nerve of the lower jaw bone. Not only that, if they were to simply cut them free, there would be approximately half a centimetre of jaw bone left in either side. This is a real problem, and I'm forced to see what the Dental Surgeons decide because I'm in the public system. If they class me as priority one I will have emergency status and be dealt with within three weeks, if they don't I'll be priority 2 and may have to wait a year. Headaches, swollen glands, fevers, sore throats (I put them down to my glasses and Coeliac's) is actually my wisdom's pinching my nerve, I have pain every day in my face. Hey, when this gets sorted (and the sleep apnea), may be I'll be almost human! It seems when I'm actually trying my hardest to get well my own body is screwing me up - again. The carefree nature I had as a younger woman/girl is come back to haunt me!

Anyway, that's all for now. At least Raven's getting better! Q,

Home Made Fish Cakes and Updates

Home Made Fish Cakes

Made from mincing (we've got a Kenwood Chef with mincing attachment, also makes sausages, when your GF it makes a difference financially if you do it yourself as much as you are able). So, we minced Cockie Salmon (Australian Salmon), mixed with fluffy mashed potato, crumbed with egg, cumin, salt and pepper and GF rice crumbs/all purpose flour, and deep fried in our new cute little deep fryer. Now alot of people think that deep frying is bad, and it is if you do it all the time - but it actually keeps alot of the fat out shallow frying will let in, so in that sense it's better. What made this meal quite healthy was the huge salad we had with it.

Update: Raven was rejected from the public hospital, so we asked our GP about doing a DNA test on him (and me). Well the results came back... I had one gene that was positive, but Raven had both of the gene markers! (This doesn't actually prove he has CD - it just says he has potential to develop it, but with his symptoms its highly suspicious.) With this in mind, our new GP gave us another referal to the hospital and asked us to take him off gluten and keep a food diary. We've done this religiously all month. There hasn't been a huge improvement so we have gone one step further and have taken him off dairy too. We're trying our best to keep the food as nutricious as possible. During this time we've been keeping a diary on all of the children.

Its become apparent that Monika is suffering diahrea a lot, so we've taken her off dairy only at this stage, but no improvement yet (just over a week). Actually, there has been some improvements with Raven that I should point out: he's ravenous (parden the pun) - which is indicative of CD patients fresh on the gluten free diet; loads more energy, but we're still struggling with bloating and constipation. To help things along a bit more we're including more raw fruit/vegies into his diet. His only source of calcium is Rice Milk/sheeps and goats cheese, so we have to decide if that's OK ie enough and not compacting his constipation issues. We were naughty and didn't have our special juice for about a week, when it was at it's worst. Now we have him on a shot of straight prune juice daily, so we'll see.

As for me? Been more sensitive and got cross contaminated three times in the last fortnight so its been painful and slowed down my really good progress. But before that I had energy! Real energy and motivation. I've also been to see the specialist about my sleep apnea - he says I've got 80% chance of having it and it might just be that last piece of the puzzle that makes me well again. I have to go to the sleep lab on Christmas Eve Eve, mind you... and then I have to wait until the end of January for the results. But there you have it. Q.

No News but new Recipes to try

Stuffed Capsicum And Spanish Tortilla

Prepare about 6-8 capsicums by cutting off top, removing seeds and membranes things. Set aside. Cook in a fry pan a large chopped onion, when golden brown add in half a cup of water and 10 tablespoons of rice, cook for about 5 minutes, then add in half a kilo of good mince. Cook this and stir well, then add in a tomato pasta sauce. Add salt and pepper to taste. Oil the capsicums on the outside with a good olive oil, and spoon in the mince mixture. Grate cheese (in my case it was good hard sheeps cheese - Glenvewe cheese... and cheddar cow's milk for the others). Bake in the oven for an hour.

While the capsicums are baking cook the tortilla. This recipe was taken from a book called "the gluten, wheat & dairy free cookbook" by Nicola Graimes.

I doubled her recipe, but to simplify for here... here's what I did.

I cubed 700 grams of potato (now weighing as I went and adding it together was fun). I cooked them in boiling salted water but it didn't take nearly as long as she said. While this was happening I chopped the onion and prepared the eggs. Take 12 eggs (Yes, that is right TWELVE) beat well and add in seasoning to taste. I heated 2 tbs of olive oil in my swiss diamond deep fry pan (important: handle needs to be oven/heat proof), and cooked 2 medium sized onions until golden brown. This took longer than stated in book. Then I added the cubed potato and cooked those until medium brown, would have loved to have cooked longer but didn't have the time. Flatten out the potato/onion mix across the entire bottom of pan. I then poured in the egg mixture. It was suppose to set on top while the bottom caramelised. The bottom nearly burnt while waiting for the top to set. (Next time I'll grab it out when the bottom is perfectly caramelised). Have the grill set to medium and put the pan under to cook the egg on top. Says it should take 3-5 mins, it took nearly 12 to cook and was still a little runny in places. But hey, it was a double recipe! Even so, it turned out beautifully and Andrew wants me to do it again and modify, which I'm happy to do. Adding Bacon sounds yummy.

Serve both after resting the capsicums about 5 minutes (mainly so the littlies don't get a burnt tongue). Enjoy. We did.

Contemplating Our Raven's Reality...

....well, it isn't a nice one. Constant wind pain, bloats that rival most pregnancy bellies (relatively speaking), and now he's started pooing his pants again. At this stage, Andrew and I decided we are totally unhappy with the medication he's been given (parafin wax) from our paeditrician, and stop it and decided to research it.

This is what we find. From the Royal Children's Hospital (Melbourne) Only give such medications as a final resort. To begin with ensure they have plenty to drink, and give prune juice (mixed with other juice to make it taste better), eat at least two pieces of fruit (he's offered but we don't push it) and add into it good breakfast cereals with lots of fibre. We do have these on offer to him everyday, unfortunately, he just refuses most meals and drinks. So we are going to attempt to try and get him to eat these things every day somehow and have lots more to drink. If this does not work we are going to take him off dairy and gluten. Waiting for this deadline in September is ridiculous, he's in pain and he needs something real now.

Dante already drinks loads of water and eats OK. He is suffering too, though, so he obviously needs to address what's happening in his body. He's mostly lethargy, pallor, dark circles, bouts of the big D, occasional constipation, bloating, wind pain, brain fogs....

Andrew was actually the one to come to the party on this one, he researched the RCH stuff. This was after he said, "let's just put him on a gluten free diet and see if he improves." We will do this if the above tactics don't bring the desired results within several weeks. We are also considering going on a fully asian diet, which will be both healthy and cheap! I will miss the variety we've come to enjoy though... and our pizza nights and our Gluten Free Goodness ... and Quinoa grains etc.... Umm mostly Asian? We'll we will look into the results over the next few weeks with great interest. Q.

So not a "morning person"...

Woke up between 5:30/6 am this morning to a sure knowledge I am so dairy intolerant I won't be touching it again unti maybe next time I've forgotten all this... Hell, I like the subs I use now, but a good hard cheese is something I miss. Even found a nice choc sub.. Sweet Williams, both gluten/dairy free.
Worried about the boys, they have been on this treatment for constipation and still in pain. Raven was not good yesterday, he had a huge swollen belly even though he refused nearly all food yesteray (and the night before). You might think malnurishment, but it isn't that apparently according to all those tests... just bloating and wind pain/digestional issues. You know, you don't really want to put a child on a strict diet, but honestly, isn't it better not to have a childhood of pain? Dante tells me he still has the Big D, which says to me he might not even have constipation at all (the doctor never even examined him at all).

As for Labyrinth's issues: the psychiatrist is very helpful, NOT. He has come to the conclusion we are doing the best for her at the moment by homeschooling her (umm... of course), and he doesn't need to do anything for her right now but will keep an eye on her (and agrees with a IQ test taken a few years ago and considered redoing it this time)... It doesn't explain her bad moments... self harm, problems with eating (to the extreme - we have considered locking kitchen cupboards/the kitchen itself as she can't seem to control her urges), her lethargy, depression, anger, violence, extreme mood swings, agitation, screaming and yelling that goes on for sometimes half an hour. Problem is she only exhibits such behaviour at home or with people who know her well, she is on a mission to impress her psych. Sometimes she acts like a teenager, other times a toddler, mainly dependant on if things are going her way. She's also mostly OK at the moment, but things could change again and probably will down the track. It isn't enough to keep us here though...

So unresolved at this stage. Raven self treats in a way (he refuses to eat most of the time), Dante complains and has pallor that rivals most, gives him an angelic hue (actually both have it), however the tests for Raven suggests in borderline normal and not necessary to do anything about. Raven is most likely botching his results. Basically, the paed will reassess in early September to see if his 'constipation' issues are resolved and no more pain. ARGH!

In the mean time he remains in pain and nothing really changed for him. Q.

Some Yummy Gluten Free Goodness!

Above and Below: Whole Roasted Ocean Trout with Lemongrass/mushroom/bacon/scallop stuffing, and below served with avacado, scalloped potatoes with a rice milk bechamel sauce with goats fetta and steamed vegetables. While it could have looked prettier I doubt it could have tasted finer, it was a knife edge perfect cooked fish. And of course, GF goodness. The roasted trout is obvious, cooked in foil with buttery dill for around half an hour per kilo. The Bechamel Sauce, a staple in our household is now prepared just like a normal bechamel sauce ensuring the corn flour is in fact 100% maize, with Nuttlex (totally dairy free), and the milk is rice (as I can't tolerate cow's milk at all anymore. (I miss cream/ice cream/yogurt... will eventually find good subs I hope... any suggestions?) All prepared, cooked and served by my wonderful man, Andrew. Many moons ago he had a small repotoire of cooking abilities and recipes. I taught him to make a bechamel sauce and since then he's taught himself everything else and now outdoes me in the kitchen.

Below we have the lovely Gluten Free Patties that I put together for lasts nights tea. This was enough to feed 7....

Take 3 kilos premium mince, add in 1/4 cup rice bread crumbs, tomato paste, roughly chopped spanish onion, fresh neatly chopped basil, can of diced tomatoes, 1/4 cup all purpose Gluten Free flour, lemon zest, arabian spice mix, dried thyme and 2 tablespoons of tahini and good olive oil, mix very well. Set in fridge 24 hours and roll into balls dip in whisked egg, dip into rice breadcrumbs and serve. Not a single piece was left, even my normally fussy children woofed it down and they all ate seconds.

Could pull my hair all out...

It's terribly true. Life is frustrating and challenging but doctors make life so so much worse, superior and often wrong... and loathe to admit that it ISNT an exact science...

This flares up in days, we have to be constantly vigilant about his eczema or this happens... and it is a constant war.

We went to see the ped at the hospital on Friday. He simply wants to treat his "constipation", and apparently it is so common that "we have a clinic just for it... and guess what its always overbooked." So we have to treat the symptoms first and if they clear up and don't come back, great, and if they clear up and they've still got something then they might look into it further. ARGH..!!!

As for results... He got a score of 40 for his auto-immune test, which means he tested positive but apparently not positive enough unless he gets a high enough score on his IgA (which the ped said he didn't which means he doesn't have coeliacs disease.)... I've been to enough Coeliac sites to be aware enough to question this... I asked him several direct questions after he exclaimed "Congratulations! Your son is NOT coeliac!" I asked him did he do the DNA test, he told me he doesn't need to now (what? This one test can determine whether or not he has the potential to develop CD or not.). I also pointed out that if he hadn't consumed enough gluten that can botch the results, he conceeded. I then said why don't you run the same bloods/stool tests on Dante since he is suffering the exact same intestinal symptoms... he said we'll stick with the plan and just treat the diahrrea URGH! This could be helpful I pointed out, and he told me that constipation is so common that he's certain that is all it is.

Raven unfortately eats very little, he is underweight and his height is erratic, but he is damned short. He has bad skin problems as seen above. Hello! There is the possibility that he didn't have enough gluten at the time of the test, hell I can't force him to consume anything! On the other hand, Dante eats lots of everything, yet he is so thin its crazy, he can't put weight on and you can definately determine his bone structure under his skin (wirey as Andrew puts in), he's constantly in pain and constantly got bowel issues, he's got pallor and dark circles, little energy - yet he won't do the blood test until a month (or more) of laxatives. Does this seem normal? By the way posting on my other blog will show his pallor/dark circles.

Andrew would like to accept that its all over and no CD, just constipation. I certainly don't want them to be waiting 28-30 years for a diagnosis if that is their problem, I just want the doctors to do their jobs and find out! But what do I know, right? Andrew just thinks that I am never going to be happy to have a diagnosis of CD. Maybe he's right but I'd like it done thourougly with all avenues taken.

Looks like I'll be going back to Dr Hughes and saying "put me on the list I'll do the gluten challenge and get a biopsy." Because the doctor refuses to accept that I have it and so doesn't take that into account. 10 years of diahrrea gone in 3 days is not a significant result!

Oh, and I nearly forgot to mention when I asked the doctor does constipation explain their acid reflux he was actually stumped, asked how we knew they were having it, I told him Dante complains of a hot, burning chest and Raven has an overactive sensitive gag reflex. It made him sit back and think a bit then said, "we'll still do the constipation treatment first and see if it fixes it, OK?"

Well, we will be awaiting the results of the laxative keenly. Q.

The Quest for Dante's Diagnosis....

Is an ongoing saga, as is Ravens.

Our GP hadn't rang about the results of his latest stool sample (if he still carried the intestinal parasites) even today, even though its nearly been 10 days. We even got the pathology bill on Tuesday, but still didn't know. Now my memory is still shocking and I'm coming off anti-depressants cold turkey (headache and nausea city), so these things didn't help. I remembered on the way home today after searching after the question of what to buy Kai for his birthday next week (which still remains a mystery.)

So I rang but of course he couldn't take my call and the admin staff said he'd call when he got a moment. He called back around 7:30 this evening. So the verdict after 10 days? A broken promise. The stool sample came back negative to infestations of aliens in his intestines. The promise was he'd was simply going to refer him directly to the hospital. Now he says to wait and see what happens with Raven on the 16th. Maybe, as Andrew pointed out, there may be some reason for this, if in fact the results on Thursday for Raven say X then it can fast-track a diagnosis for Dante. Where is House when you need him? Either way, we still don't know what's going on and to date its been over 18 months of this pussy footing around. What a hassle if it were life threatening conditions.

As for personally, I haven't gotten any better since going GF. Yes, it was a rather dramatic life changing couple of months, then its no changes. I don't think it is the whole story, I need to be off dairy, but is there more? Is it a true diagnosis since I never had that biopsy? Maybe I should have it, but I know I can't tolerate Gluten, and it does horrible things to me if I as much as smell it...

Oh, it is hopefully going to have some confirmation one way or another come Thursday - we do have the confirmation of a autoimmune disease of some variety, but have you seen how many/how very scary some are? I mean he does have eye symptoms, they are huge and heliosensitive, that might lean him towards something else, but checking over again and knowing my own positive response to a GF diet I am fairly certain it will be Coeliac's Disease.

Wish us luck, will us the best case scenario or pray for us or whatever it is you do if you feel for our cause,
Good Night, Q.

The Horrid Happenings of the 6th of July

Today we had to take Raven to the hospital first thing in the morning for more blood tests/stool samples...
Well, naturally they kept us waiting for nearly two hours while "something unexpected was happening in the treatment room." Eventurally after some pestering they agreed to take him into the quieter 'children's waiting room' to do the test. All this time he was anxious and upset because he remembered how they bled him last time (pushing the blood out his veins because "he just wasn't a good bleeder."
I asked him if he wanted mum or dad to take him in to hold his hand? He asked for me... well, long, tiring, stress filled 10 minuted was never to be had by anyone (OK but it wasn't very nice)... while I and two nurses restrained him they gave him a 'finger prick blood test' and took out about thirty drops (plus all the ones the nurses wore) as he thrashed around shouting 'stop, just stop" whilst the nurses pushed blood out of his finger over and over again. Even my diabetic mother who does the finger prick blood test 3 times a day said that was cruel, one prick hurts enough but to continue to push blood out?
Needless to say he wouldn't co-operate with other sampling and tests, and we still have to get that stool sample into them ASAP (I'm writing this on the tail end of his birthday).
I asked them why the finger prick test, they said it normally was done for tests to do with muscles mostly, then later volunteered it also is used to study certain enzymes. I am in the dark as to what they are searching for here.... I'm really concerned now.
Dante is still waiting to hear back about his stool sample, but they haven't failed to send us a bill for it.
And so the anxious wait goes on...

Pizza again... and Raven

Finally happy with pizza! I brought ready made pizza bases from the Gluten Free Shop in Moonah. It was Life Style Bakery: Basil and Garlic. Definately use these from now on! YUMMO! There was two of these size, so not the feed the hordes, but one pizza is definately enough for an adult.
Poor Raven has stopped eating most things, he says he feels sick from eating nearly everything, and going by his bloat and lethargy/paleness I'm not surprised!
He has another appointment to bleed him take more tests before his next appointment at the hospital to see the paed. We're narrowing in but he's suffering for it, sadly, and if he eats the guts out of his sandwhiches and leaves his bread, will this botch his results? We'll see I guess. I feel for the little man, poor guy!

Raven and Dante, a bit of Labyrinth

Just a small post here.
I'm so annoyed at our GP, it took about 18 months from when he decided Raven needed observation and yesterday's phone call from the Paed at the hospital. He's tested a strong positive to an autoimmune disease. He's needing to do more tests to get an exact diagnosis. This is all under the month we finally got in to see him and all the screwing around GP did before referring him. Obviously suspecting Coeliac's Disease, I certainly don't want him to have something worse and yes, came as a shock.

I was expecting it, but it still comes as a complete shock. It totally meant I couldn't concentrate on the lessons I was currently doing with the children, I was really upset.

I'm annoyed at my GP for wasting time with Raven... I'm more annoyed about how he's handling Dante. He said to us if he's still got the big D after settling down after Flagyl, he'd get the blood screening tests done for Coeliacs. Dante is bleeding from the bottom and he tells us he wants to put him onto another form of antibiotics, he's just not sure which ones and he might have an answer next week and he doesn't want to the do the blood tests til after that.

I know and see how Dante is suffering. He's lost a whole lot of weight it's frightening. He's started to avoid eating. He has black circles under his eyes and he appears pale often. This is not right, and the advice I've recieved from other people is go to another GP and fast! I'm swayed. I wonder if I can sway Andrew too, he's already annoyed about the way he's handled my anti-depressant/forced weaning. Neither Monika and I are ready, but he is trying to push me to stop. I've decided not to on the grounds neither of us want to, and I'd rather go off anti-depressants than give up breastfeeding just because my GP finds it unnatural and unnecessary.

Then there is Labyrinth. She's begun to see a psychiatrist for her behavioural issues. He's only taken her background so far, but through the extensive research I've found on the net, it seems she could have coeliac disease too, just manifesting it completely differently and without the gastrointestinal symptoms. The ones that fit are: pyschosocial underdevelopment, her insatiable appetite, fatigue, depression, frustration, low self esteem, anger, academic problems. Obviously it could be pointing to another problem entirely, but its hard to know at this stage, the psychiatrist seems pretty good and he is aware that I believe it may be organic in origin.

As for myself, no change. I've got the flu but that's about it. Brain fogs and memory problems plague my life.

Gluten Free Choc Chip Cookies & update

This is the Gluten Free version of the Choc Chip Cookie recipe on my Quasior's HomeSchool Blog! It ends up being nicer than the gluten version, maybe a bit drier but they still melt in the mouth, or maybe it's just been so long ago I can't remember the difference. Anyway its a step by step recipe:

Gluten Free Choc Chip Cookies

Step 1: Cut up 125 grams of butter (nuttlex or butter substitute should be OK for the dairy intolerant) into squares so they'll melt fast in the microwave. (Easy to double/quadrupile/multiply recipe accordingly). They will probably be done in 30 secs.
Step 2: Add into the melted butter 1/2 cup of soft brown sugar and whisk lots. Then add a whisked up 1 egg into the mixture (should be cool enough by now). When it looks like syrupy caramel like above its good.
Step 2: Into another bowl have 3/4 cup each of Orgran All purpose flour/Self Raising Flour, nicely mixed.
Step 3: Gradually add wet mix to dry until it resembles next photo.

Step 4: Fold into mixture your Gluten Free Choc Chips or choc chip substitutes. It will look like below photo.
Step 5: Gently roll the mix into balls that are then gently pushed onto the tray so they look like these below. (Yes, its a pizza tray... I like it because of the widdle holes the warm air can move up through).
Step 6: Put in a non-fan forced oven at 180 C and bake for 10-12 minutes. This is important. The softer and more melty in your mouth you want is you take it out earlier. For example, these two cookies look the same on the upside. If you want a softer buscuit take out a full 2 minutes earlier.

On the underside of the cookies reveals the difference. The darker golden brown means its crunchier and drier, the lighter colour is still cooked its just softer and more moist. Its personal preference really. I prefer the lighter colour or next to no colour.

Again, if your preferences are like my mothers, then you'll want to leave them in for another 4 or so minutes. They should have a good go at breaking teeth at that stage. Her buscuits are frightfully heavy and dense. Some are the equivilent to small rocks. And she eats them. In saying that, she makes very nice slices, biscotti and truffles, only the biscotti is safe from gluten however.

The update is not so good actually. I've been stunted in my quest to lose weight, and my depression is a problem. I've got sleep issues. I've got joint pain. I've got bloating and pain. Lots of these I can pin on two reasons: Gluten sneaking in and/or an unidentified dietry sensitivity, and my anti-depressant/breastfeeding issues. Oh, that and it's winter. I have bad times during winter = want to stay away from people and stay rugged up and in bed all the time. I must be related to bears. (I know that is double meaning and I mean it)!

In other family concerns: Raven has finally been consulted by the paed at the RHH. He seems to feel he has both constipation and diahrea at the same time. He put him through the tests, stool and blood, and will be looking at possible markers for Coeliac Disease amongst a myriad of other possibilites. He won't find any nasty parasites though, not after being put through the rigours of Flagyl quite recently. He finds it concerning that there are such marked levels of intense growth in short periods and large periods of no or slow growth. We won't find out the results until mid way through July.

Dante still has the big D after the Flagyl incident. Monika has had constant D since the Flagyl too. Kai is silent, and Labyrinth always says she's fine (although her behaviour/attention span needs attention so she's going to a psychiatrist soon... but what if it's a digestive concern only manifesting in behavioural type symptoms?)

I'll update as I need to or add in recipes soon. I've been doing some baking/cooking so I'll at least add recipes.