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.

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.

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.

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!

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.