....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.
Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Friday, July 31, 2009
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.
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.
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!
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, 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.
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.
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.
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