Getting Somewhere.... FINALLY!!

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

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

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

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

Lots and a New Recipe - Greek Salad!

Greek Salad

Salad Ingredients:

1 bitterfree cucumber,chopped

125 grams fetta (we used sheeps), cubed

10 - 15 tiny roma tomatoes - chopped

1 Spanish Onion, roughly chopped

10 black olives,halved

Mix together in a large bowl.

Dressing Ingredients:

Balsamic Vinegar with Roasted Garlic

Raw garlic

Generous spoon of Basil Pesto

Equal sized spoon of chopped Chives

Mix well then carefully toss through salad.

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

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

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

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

Kai's good. As always.

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

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

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

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

I

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.