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.