Thursday, December 10, 2009

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.

Monday, November 2, 2009

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,

Sunday, October 18, 2009

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.

Saturday, August 8, 2009

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.

Friday, July 31, 2009

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.

Wednesday, July 29, 2009

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.

Sunday, July 26, 2009

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.

Friday, July 17, 2009

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.

Thursday, July 9, 2009

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.

Wednesday, July 8, 2009

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...

Monday, June 29, 2009

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!

Thursday, June 25, 2009

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.

Thursday, June 11, 2009

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.

Monday, May 25, 2009

Horrid Flagyl and GF Pizza

Pretty happy with the Pizza recipe and tonights was a great result. Just using the Orgran pre-mix Pizza/Pastry box.
Flagyl is causing problems already. We started Friday, gotta last until Friday next. I have the big D, as does Dante, Andrew and Raven, not to mention bloats and cramps and other unpleasantness. NOT looking forward to the continuation of this nasty drug. I am so over the Big D, let me tell you!

Sunday, May 24, 2009

We've Begun...

It's the horrible anti-biotic week - we are all taking Flagyl because Dante had Entomeba Protozoan in his stool sample. The doctor will still screen for Coeliac's Disease though.

I've not been very well over the last few days. Just a flu and a bit of depression. Other than that I've been OK. Bit of Reflux which I thought was history so maybe a tiny bit of gluten snuck into the diet somewhere but didn't have me in fits of pain. Who knows? It's hard to tell at times.

I've certainly had energy today, putting in a garden bed. It was hot work but it certainly was achievable, and instead of being stuffed for the rest of the day I've been quite busy, not fatigued at all. I can feel it in my muscles which is a good thing! I have bursitus in my left shoulder so it copped it a bit. I'm still doing physio to get it back to some semblance of normalcy.

I'm not sure what I weigh at the moment either. I weighed the children the other day though, and Dante is still on the thinner side, but Raven seems to have put some weight on (or the incredibly bloating his tummy had - it was tight and painful for him. - Honestly it is so normal for him to be feeling that way that he doesn't seem to know much different. Poor bugger. He's got that appointment at the paeds coming up early June. It couldn't come fast enough for me.

Some good things though... I've been trying out different recipes for pancakes as I'm concerned about the cost of cereals (particularly when we got GF as a family). So I've tried the pre mixed versions of Organ and Freedom Foods. Andrew didn't like Orgran (Apple and Cinnamon mix, which I quite liked) and I didn't like Freedom Foods so I decided to check it out online. Well, some fantastic guy says he has a whole lot of pancake mix made up of a brand I don't much go on but I like the idea of it being made up and ready to go so it is just a matter of measuring X amount out and mixing in the wet ingredients. So, Andrew agreed and so now I am trying out different recipes.

1/2 Cup Buckwheat
!/2 Cup All Purpose Gluten Free Flour (mostly maize)
1 tb GF Baking powder
1 egg
1/2 Cup Rice Milk
2 tb olive oil
ended up adding in another 1/2 Cup Buckwheat

blended it up and cooked on a medium heat. Incredibly light and fluffy and tasty, or so I thought. The children also loved it. Unfortunately Andrew decided he didn't so I'm going to give a different recipe a go. (I hope its just not his over refined personal tastes getting in the way, as I and my subjecting the children to various GF foods have developed ours.) I'm going a recipe including Quinoa flour next time. Yummy Quinoa... It's the main ingredient to my favourite breads. They stay fresh for up to 3 weeks, and don't have some of the problems that are inherent in many GF breads.
I'm also looking at baking breakfast cakes and rice or quinoa porridge too. I'm still considering alternative options to the sugar covered gluten containing ones.

Yeah, I'm guilty of being unable to eat in my allotted 100 Miles, Quinoa only grows in the Andes, and without rice where would my diet be??? I guess I'm doing the right thing and growing as much as I possible can though (or am attempting to).

Tuesday, May 19, 2009

Good with the not so good

So far it's been a huge benefit going Gluten Free. There are few problems associated with it, namely keeping regular (for heaven's sake though that's a huge change not having the big D for over a decade is an achievement). So, I've adopted rice bran into my diet. This has been a great help and although not perfect I feel that it is better than the alternatives.
I'm on anti-depressants that make me tired. I find it hard to struggle out of bed before 11 am in the mornings, NOT good when you consider my 5 children... and the B vitamins I have which is bringing my energy levels to near normal (if I remember them) is not nearly enough to combat a medication based issue. On top of this I don't sleep well, If I'm going to sleep like a log Monika will want to feed on and off all night. So, naturally this is a concern (and quite possibly not attributable to my CD condition/after affects.

The weather has been a deterrent to getting out of the house and going walking. (Slackness I know - but in the past if I got saturated I'd end up sick for a week). On the upside of this though, I no longer feel the cold like I used to. Putting this into perspective... during several months leading to and from winter I would be bone cold no matter what I wore, how many blankets were on or what heating was on. This was even the case during pregnancy where I would be so cold I would cuddle up to Andrew in the night and he'd tell me I'd woken him up because I felt like a block of ice. Here we are in the beginning of winter I am typing at my computer with a summer dress and feeling quite normal.

I'm reminded about how cold I probably would be because poor Dante suffers the cold like I used to before going GF. He's opposite in weight to me - underweight, but he's got the stomach pains and the big D constantly. I feel for him and we are all keen to get him diagnosed as quickly as possible, but things like finances and certain things are getting in the way... next week!

I'm also wishing I could be pregnant. My periods are back to what they should be but I'm not falling pregnant. Probably shouldn't even consider it but I love filling up my life with little uns. But maybe I am infertile permantly now, after all the months of nastiness. Not to mention Andrew has had half the snip. That's right- he had the snip but it was only half sucessful. All in all we used to be so fertile I'd look at him and fall pregnant... now we can't. I am certainly happy with my five prodigies, but can't help underneath to wish for more.

I guess here would be a good time to go another subject. We've been getting better and better with understanding how different flours work and how to mix it so it works. I've been cooking muffins and where I didn't like fruit mixed in before (prefering fresh or bottled) I don't mind it anymore. I still can't go dried fruits though, it just tastes/texture is so wrong to me. So that is a bit of an achievement. Andrew cooked me pancakes for my birthday brekkie yesterday, that was really yummy, light and fluffy - just perfect, even with the apple and cinnamon. I've also been experimenting with main meals. I do a satay sauce from scratch. Next time I make it I'll put the recipe/pic up. I make pizza/bread from scratch sometimes. I just love Quinoa bread that I buy pre-made and doesn't go stale any where near as quickly as most GF breads, actually, it rivals normal bread. I can't stand the taste or texture of cow's milk anymore. I'm a rice milk girl now (can't tolerate soy). I can have cheese/yogurt/chocolate in moderation, but really, I love goat and sheep cheeses and yogurts just as much. My palate has most definately changed and I think become enhanced due to my new diet. I'm happy. I'm also keen to learn new ways of doing things in the cooking/eating... it's far cheaper than buying it pre-done!

YAY for me. I now weigh 113 kg even with the lovely treats like birthday cake and extravagent brekkies for mother's day etc!

Tuesday, April 28, 2009

Winter approaches and appetites increase

But life goes on! I'm still having energy, braving the cold to go on bushwalks. We went for a 6 km walk last Thursday. The children are having energy issues, particularly Dante, who is looking somewhat emancipated according to my mother. Hey, he is looking thinner, he's lost his six pack and his butt is flatter and his hips, what hips? So that is a real worry!

I'm feeling really, really positive. I've been cooking and learning about new ways with food. Going out is frustrating for poor Andrew. Yesterday we went to Praties and realised that nothing on their menu is really OK. So I went next door to Chish and Fips and had a grilled blue grenadier and salad and some of Monika's chips. It was OK but a bit dried out because I had to get them to grill it on top of foil as they cook gluten containing products on the actual grill and at risk of cross-contamination. All was well with the staff, they still made their money even though they didn't need to do much differently.

My mother also told me that she can tell I've lost even more weight. This makes me feel good but I need to not so. In some ways I should love me for me, not my size. But feeling healthy and energetic makes me feel a lot better in myself and sure losing weight and feeling better is a great thing all around. But I do still struggle with societies imposing attitudes to the Fat Chick!

Last week I made some lovely new things. I made a chicken Lasagne, my own bread and some chocolate muffins and blueberry muffins. They all ended up being really yummy. Andrew made polenta mash and GF sausages with veges. It was OK with the sausage but it was quite bland. I'll experiment with that.

Brought some Quinoa to use in place of rice/potato in a dish sometime soon. Also finally got to Ziggy's Small Goods and was awfully impressed by their selection of GF foods, and brought Chorizo's for pizza and other yummy sausage for a casserole. Will definately be going back there.

Best news is in the last week and a half I've lost another 4.5 kg, without really trying.

Current Weight is: 118.5 kg.

Sunday, April 19, 2009

Getting better everyday...

But the road is definately one of trial and error. Somethings seem so difficult, other things are really really good and worth all the fuss.
For instance, last fortnight's shop I brought myself some 'treats' like chick pea bites and rice and corn chicken flavoured cakes. These ended up containing gluten (stupid me for not checking, hey they sounded fine). Alas, not the case. The kids ate up the rice and corn cakes but haven't touched the chick pea bites as yet. I thought to myself that it doesn't matter anyways, I've enjoyed munching on sunflower seeds and nuts.
According to the BetaLife program, that's exactly the kind of thing I should be eating to liven up my metabolism. It certainly has changed my energy levels (topping out for late nights but still tired and unable to wake in the morning.) Hey I even got out into the garden for the first time in 4 months to do the weeding yesterday! I think it's not so much my diet that is the issue with my over tiredness but my anti-depressants. Yeah, I know they are suppose to be lifting my mood and giving me energy. They may be lifting my mood (or it may be my health improving expotentially), but they are most probably responsible for my slow morning starts. I was unable to wake until nearly lunch time today. Poor kids!
It may be my anemia, too. It is a real problem for those who have CD and still eat gluten! But I've been really good and avoiding it like it's poison (which in fact it is to me - it causes malnurishment and no end of health issues.) I can't believe all the wonderful changes in my body and my mind since ridding myself of it. So, ultimately instead of eating fish so often I'll be looking at upping my reds next week.
Another side to my situation is I am being inspired to create new dishes, and looking at other Gluten Free blogs for inspiration. I'm going to give making a fish potato bake a go, and a garlic chicken polenta dish a whirl. They seem like they should go rather nicely together. I also probably should buy a GF cook book but I need to buy some boots so I can do gardening/fishing. I also want to get hiking boots. I guess I'll be using the wonderful expertise on the web for some time.
What a wonderful, masterful and expensive machine the Kenwood Chef is. I've already got the mincer attachment, I'm looking at getting a liquidiser/icecream maker/food processer/grain mill in the next few months. They'll end up costing MORE than the machine. Oh, but the culinary places I can go! The money I'll be able to save to be able to grind my own grains, make my own so many things, like icecream.
Andrew (partner) has agreed that he'd like to move bush with me. You know what that will mean? A sheep or two and some goats. I'll make my own fetta/cheese/icecream and milk! I'll put in a food forest and grow my own vegies. I'll have laying chickens. I just have to save some money and get some bank to agree to a loan. He wants to build a subterranian house, kind of inspired by the hobbit holes in LOTR. Its a wonderful dream and we should be able to save around $5000 by christmas without hurting too much. I'll be honing my gardening skills with a green house and raised garden bed and raspberry canes in the next few months that may save us some dosh. Oh, and fishing always helps on the meat quotient. (Even though I be needing a bit more of the reds of late).
My depression is lifting and my head is full of dreams. I just have to get me a writing so I can make maybe a bit more money and get our dream a bit sooner than later...
And on a good note, I've been losing a bit more of the heavy stuff. YA!!!
I'll be brave and post a pic soon so there will be a before shot up... and showing my progress and helping me to keep it up!

Current Weight: 123.4 kg

Thursday, April 16, 2009

A Wonderful Feeling!!!

Yes, it's a wonderful feeling waking up in the morning and actually BEING awake!

It's a wonderful thing being able to go for a bush walk during my period and have the energy to KEEP going even though the rest of the family can't (a couple of months ago I was unable to leave my bed).

It's a wonderful feeling to be able to have NO pain during my period.

It's a wonderful thing to have no D.

It's a wonderful feeling when I've lost a kilo or two.

It's a wonderful thing to have this thing most people take for granted - a healthful bod. One day I know it's going to be a beautiful bod again. People have told me I look like I'm losing weight (although it's been very little). My appearance has changed somewhat though.

It's also great that my sister and her son is now gluten free and getting healthier, and my mum is also trying her best to go GF.

Today I took Dante to see my GP. He's got to give him a stool sample to rule out the possibility of a parasite/infection. If that comes up negative he'll give him a blood work up to see if that shows he has coeliac's disease. I know that the outcome of the stool sample will be negative but we have to go through that anyway. It is a good idea to know what it isn't as well so I agreed.
Other than that we await the pediatricians at the hospital to give Raven a work over to see what it is that is wrong with him.

Weight: 129 kg

Saturday, April 11, 2009

Pizza Night. Not quite Zen Pizza.

Something we didn't want to lose as a family tradition is family pizza making nights. Yes, we always scratch cook it. Last time we cooked pizza it was a disaster (using the bread mix that's more like paste) and it became one with the baking paper. This time I didn't take any chances, we used Orgran's Pizza/Pastry mix. Using my beautiful new Kenwood Chef, we mixed the pizza dough, it needed the olive oil and yeast. It rose quite well and made a yummy pizza base. Won't call it perfection, but certainly edible and pleasant. We also made a chewy smaller base out 1/3 of it for a garlic/parmesan cheese pizza instead of garlic bread which obviously I can't eat anymore. It was OK. Definately lovely flavour just a bit on the chewy side. Here's some pics:

1. The Garlic/Parmesan number.

2. The Gluten Free/Lactose Free Pizza. Toppings include: Diced Tomato, chicken, bacon, green and black olives, red capsicum, mushrooms and crumbly sheeps fetta.

3. The non-allergy pizza for everyone else (this may change if/when one of the children is diagnosed with CD.) Your traditional pizza base, tomato, bacon, Tasty cheese, chorizo, chicken, green/red capsicum, mushrooms, green and black olives.

Poor Dante was complaining that his stomach hurt after. So we decided to measure/weigh them all. They all seem to fall fairly OK over the charts. Even little Raven has gained weight. However, playing at a park today we ran into a friend. She was surprised about my diagnosis a little, but stated that young Dante looked very thin and very pale. We'll see what my Dr says on Thurday when we've got an appointment for young Dante. She also said I'd lost weight. If I have it hasn't been noticable on the scales, I'll be checking tomorrow and post then. I do know I look different and my tummy looks flatter, my double chin as I've said seems smaller.

Dante has grown a centimetre in a month! Raven the same. They are the two I am most concerned with - but Labryinth I think is also a bit of a worry. She's quite heavy. I wish I could just get the tests done quickly, this waiting drives me batty!

Lots of positive's though, and hopefully things can start improving sooner than later for them as it has so much for me. I've been discussing my history with my partner, Andrew. He wanted to know if Gall Stones are related (second pregnancy I got gall bladder disease and had the microscopic surgery when I was week 22.). Every pregnancy excepting Kai's I've had more and more auto immune/other related problems emerge... First thing was the "IBS" with the first, then the Gall Bladder Disease (very nasty that was!), Kai's pregnancy uneventful for me even though they were harrassing me constantly searching for what was causing the pregnancy to have 1/3 extra waters and his subsequent largeness - they thought it was gestational diabetes but it wasn't, then blamed it on my obesity - not looking for the underlying cause of it all. Raven's pregnancy was asthma, and hayfever with Monika. Not just ordinary hay fever either... constant throughout the whole pregnance to the state I looked like I had black eyes some days. All of these auto-immune responses plus tonight after further research looks like I might be able to lay my scoliosis at the feet of CD too. My shoulder burstitus and joint pains are also related. Can't blame my astigmatism though. About the ONLY thing.

BRAIN works. Memory beginning to function better. Not nearly as tired. Energetic sometimes. Kids happy with me for being less irritable. But NOT happy that Andrew brought a Roast Turkey with gluten for Friday! No, it was really OK, I got to enjoy corn-fed chicken legs instead which is better!

Thursday, April 9, 2009

So, whose to blame?

Just joking!
On the serious side, lets look at genetics.
My mother has diabetes, IBS and a multitude of other symptoms such a mind fog/fatigue/the weight game. Both her parents suffered from diabetes. Her mother was massively obsese and had an insatiable appetite (even though she was constantly on the go). Her dad, bone thin and rarely ate. How likely is it two coeliac sufferers hook up? Mum's sisters both have diabetes. One now, after decades of the D is finally diagnosed about 3 years ago with Chrons Disease and had a total colosoctemy and will now enjoy using a colostomy bag for the rest of her days.

My dad doesn't suffer the classical symptoms but suffers chronic depression, nasty joint pains and osteoarthritis. His sisters suffer from Thyroid disease (let's be fair, maybe it is the lack of IODINE in the soil here in Southern Tasmania). One was the kind of obese you cringe for when seeing them struggling to move their bulks across the room. It wasn't until 6 years before she died she was diagnosed for Thyroid disease and poof! Weight gone in 6 months. My father's mother, is a nasty little story. She had a Goiter the size of a golf ball in her throat when she was 28 induced from a Thyroid disease. A miscalculation of general anesthetic caused her to wake up early, while they were still stiching her throat back together. She screamed, split open her stitches and bled to death on the table.

Both sides bring medical conditions to the table which can coincide with a coeliac condition. My misdiagnosis is not uncommon, as I'm pretty certain it's happned on at least one side of my family already.

At least my mother is now going GF, I hope she can save herself the problems that her sister has. I really hope she can stick to it because she certainly doesn't keep to her diabetes diet. I asked her yesterday what is she going to do now? Will she substitute or buy things pre done?
She told me she's too old and can't be bothered with all that learning and cooking, so now she will just eat even less. I really hope she gets some energy and inspiration back! I can certainly give her some GF meals, but hopefully she'll be more motivated when she feels better (if she has CD - which is pretty certain.) My sister whom I said was pretty positive CD will be moving with her family thier soon, so when she goes GF that will certainly help mum.

Positive Updates:
My energy levels are definately on the improve. I was running around and walking and still felt good at the end of the day! My mind is waking up from its hibernation and I'm remembering stuff I'd thought long forgotten. My voice is improving. I feel like a new woman! I feel like I'm going to be able to lose weight and do all the things I need to do like experience that new learning curve in cooking so I can do lots of GF from scratch so that I will be able to afford to put my children onto the new diet and they will really enjoy the food!

I've been scrapping, and no longer feel its too hard. I feel positive, less depressed, less fatigued. No signs of hay fever/asthma (I didn't even know they would ever improve).

I can sing! Yeah! I can LIVE again *)

Monday, April 6, 2009

Glutened again... and something else.

Very stupidly I've me, actually. I got glutened by accidently eating soy sauce. I just find it a bit dangerous having to feed other's gluten meals and not accidently get stung by it.
So far, tummy pain, gas, acid reflux (which I can't treat because the only meds we have against it IS glutened! But besides my problems, I've got my children to worry about.

Dante looks to be very much suffering the symptoms of coeliac's. He has tummy pain/bloats/the big D quite regularly. Silly thing is, of course, he is the tallest out of the children and he sports a six pack. He begged me tonight, after having nausea/bloat/tummy pain to put him on a GF diet too. I would in an instant except he needs his diagnosis. I explained this to him, telling him he'd need to be glutened (and it would be worse) if he didn't wait first to get the tests. I said they'd probably test Raven first (as he has the classic problems for children - the distended stomach/short stature/poor weight gain/anemia/joint pains/lethargy.) Then I would insist they test all the children. He said he didn't want to wait, he wanted to find out immmediately. SO, talking it over with Andrew, we've decided to take him back to our GP and explain that we want him to get the CD bloods done straight away and get him fast tracked. His insensitivities also include intolerance to dairy. Poor little guy! I think it takes a year on the waiting list. I certainly hope not!!!

I really wish they could be a bit faster for children - its their development at risk after all.

Sunday, April 5, 2009

Midweek Update

Well, there has been some positive changes only in the last half week, so I'm here to document them....

1. I'm definately not suffering the big D anymore...
2. I'm beginning to tolerate small amounts of dairy
3. I forgot my happy pills last night and I felt on top of the world all day, so maybe my depression is evaporating. I feel very positive.
4. I'm starting to feel the stirrings of getting nutrition, and my body is getting hungry! I haven't had real hunger in a very long time.
5. Energy levels appear to be on the slight improve.

I don't know what it means BUT I've been craving Tomatoes. I eat them everyday, in salad, on toast with hummus and sundried tomatoes. Last time I had a tomato fetish I was pregnant with my first child. I'm not pregnant. Strange. Mayhaps that's the last time I had any real nutrition (the symptoms were wacked out after that pregnancy.) I didn't have cravings in ANY of my subsequent 4 pregnancies.
I've started worrying that I'll absorb gluten and make myself sick again, so I've taken to gloves and washing up stuff as soon as the kids have eaten so it doesn't cross-contaminate.

Thursday, April 2, 2009

What this Blog is to Me

I am recently diagnosed (finally) with Coeliac's Disease. I was recently glutined and am still suffering its affects.

I do not look like your typical CD sufferer. I am not stick thin and short, I am morbidly obese (I so hate that label). I do suffer from some of the classical symptoms: joint-pain, lactose intolerant, bloating, diahhrea, gripping stomach pain, fatigue, depression (who wouldn't be?), thin hair, anemia, acid reflux. I, after much research, now find that much more of my symptoms are Coeliac related. I am asthmatic, I have suffered from the parallel illness Dermatitis herpetifomis, horrible dibilitating periods, memory fog, I have had underactive thyroids, swellings around my body, itchy scalp, miscarriage, itches without rashes, tingling hands and feet.

After the birth of my first child, I have 5, I had chronic D. Given the colonoscopy only gave the diagnosis of IBS. An endoscopy which I didn't recieve would have diagnosed my Coeliac status and saved me a decade of pain and suffering.

So this blog is about my recovery - my life without gluten. Unfortunately on the eve of my diagnosis I went out for a meal. I was accidently glutined - even though I informed the chef of my gluten free needs. I suffered several of the symptoms I haven't for a long time.

You see, I've been gluten free for 6 weeks now. I am still on anti-depressants, but right now my IBS symptoms are gone, my periods are basically those of a normal girl, I have only lost 2 kilos, but my muscle tone has improved, my double chin has halved in size. Howver, my stomach hasn't started to flatten out yet, it still bulges like I'm pregnant. I'm told this may take a year or two to settle. Reading up on fellow sufferers who have my symptoms and are morbidly obese, they are all finding they are shrinking, slowly or fast at varying rates, some are actively trying and others are just going gluten free, drinking coke and eating high fats.

So far this is my positive results: I am slowly losing weight. My face looks half the size, my legs are getting a more muscled tone. I no longer have IBS symptoms - except for the recent glutening which was bad, 6 days to recover. This is normal, apparently. People have said I'm looking like I've lost weight. My periods are settled (I no longer bleed mostly to death each time and take 3 weeks to recover just to go through it all again a few weeks later. I no longer have aches and pains. I no longer get acid reflux. I am still fatigued, depressed, have memory fogs, have the look of a pregnant woman but no longer suffer the bloats, still lactose intolerant but improving.

Weight: 131 KG.