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.

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.

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.

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.

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!

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.