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.

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!