Coeliac_Journey

visiting GF needs planning... the TRAVEL KIT is born

2004-12-27T19:29:00.000+08:00

so i missed out on the visit to Perth, i simply was not prepared food wise :(
with Christmas and the resulting public holidays there was no opportunity to shop anywhere on the way. and frankly, i felt a bit uncomfortable turning up at someones place, people that i hardly know, having to make a fuss out of the food stuff.
i SO hate having to explain it all and ask for special favours. so i'd rather come prepared, which in this case was not really possible.

been thinking to organise a "travel kit" of some sort, something with yummy GF stuff that is easily transported and doesn't equire constant refrigeration.
bars, nuts, packet of rice milk, GF cereal, corn chips, GF sauces etc.
that should work, that way i can grab it at short notice or even in a situation like this and still go without having to create a big fuss.

of course they would have most of these items anyway but in my experience very few are GF by chance. and i guess i can't always be as fortunate as i was at the wedding :)

Christmas

2004-12-24T09:24:00.000+08:00

.... well... no worries for me food wise, i don't celebrate it :)
in various groups it has dominated the message boards and i am pleased to say that it ain't going to be my worry.
i believe there are some great GF Christmas Puds around.
the rest of the menu can be altered quite easily anyway.
i am fortunate enough that TM ( who was meant to go over east but sadly got struck down with RRV and was way too sick to go anywhere) is roasting a duck ( YUMMO) and loves the GF gravy. i will make some panforte for desert ( for myself and the folks at work if they so desire) as TM will have some Apple Danish for himself.
after Christmas we are going to Perth on my days off and i will try out one of the many restaurants that have been listed as being very accommodating for people with GF needs :)

Iron Deficiency Aneamia

2004-12-16T13:55:00.000+08:00

since i was always a picture of health throughout the many years of feeling crap it never occured to me that i could suffer from iron deficiency.
ok, so i wasn't a read meat eater, in fact it made me feel really weird at some stage, but there was no indication that i was anemic ( well until the end)

i would eat some beef and within hours get really creepy feelings, like someone placed an iron bar at my neck, trying to strangle me, or i would dream of violent stuff, always with lots of iron or surgical steel components in it, very unpleasant stuff. coming to think of it now though it may have been a hint! dreaming of IRON !!!
get it?
i believe in that sort of thing!

another thing that is a classic symptom apparently was "pica", a craving that can only be described as painful. in my case it was for liquorice! always pre menstrual as well, another hint by the body that it was due for even more iron!
i would have to rush out to the shop, buy a bag of liquorice ( preferably the dutch)
and in all honesty wolf it down within 15 minutes.
towards the end i had to have 2 bags to satisfy my cravings.
again.... i thought it was "just me".

iron deficiency is one of the main symtoms of coeliac disease. i never bothered to have my bloods checked, much easier to self diagnose! OMG what an idiot i was !!!
i could kick myself for the years of suffering! but hey.... i learnt!

my iron deficiency was rather severe, DrP wondered how i managed to still walk and talk ( so did i at times, but all i managed was work, give it all, drive home and collapse). i had times where i was short of breath, felt dizzy, headaches, feeling INCREDIBLY COLD, cyanosis etc. again... it as "just me".
wouldn't believe i am a health professional, would you LOL

i reckon if you worked with really sick people all the time your own suffering seems rather insignificant.

read the LABEL !!!

2004-12-09T14:55:00.000+08:00

Soy Sauce...now that was the killer for a while.
because i was quite ignorant of what actually contains gluten i just eliminated the obvious sources, like wheat, barley, rye etc.

started off with lots of fresh vegies and rice for dinner, soy sauce over the top and STILL used to get horrible reactions.

it was quite depressing, couldn't figure it out until i took a closer look at the soy sauce bottle ( i mean, who would have thought...) and YES... it is made from wheat.
so why the hell do they call it SOY sauce???

or another thing was caramel colouring! who would have thought THAT is derived from wheat? nasty!

the australian coeliac society has published an ingredient list, now that comes in real handy! take it shopping and check there and then!how easy is that!

2004-12-06T21:38:00.000+08:00

how is this for a bread?

2004-12-06T21:25:00.000+08:00

well, as i said in a previous post, bread seems to be the biggest challenge for any coeliac. personally i just go with the flow, have a rough idea about mixing ingredients and hope for the best, seems to work too, i will post a pic of the last result.
unlike what the australians refer to as "bread" ( something i never quite got used to anyway) this is substantial, something to sink my teeth in ( dense) and simply delicious.this is the stuff i grew up with!!!! YUMMO!!!

mail orders and how they affect the waistline...

2004-12-06T11:25:00.000+08:00

all very well, i found this mail order mob that has a huge range of GF products, other than the usual flour and stuff i can get at the supermarket.
especially bars, they are so handy to take to work, or that yummy Chocolate Brownie Mix, whoa.... its the bomb!

all well and good but admittedly it had a shocking effect on my waistline.... or could it be my uncontrollable urge to catch up on the things i feel i missed out over the last 9 month???

it will settle, no doubt!

on the positive!

2004-12-05T08:12:00.000+08:00

not all is bad about being a coeliac of course.
by nature i am inclined to focus on the positive aspects!
in this case there is the fact that i get to try a whole lot of new recipes, experiment, have a wonderful sense of wellbeing all of a sudden, get a sense of accomplishment when i convert different gluten containing recipes successfully to GF recipes. i enjoy being able to educate others regarding this condition and alert them to the potential for themselves.
it is not always blatantly obvious, as it was in my case, and raising peoples awareness is one of my aims.

Socialising...

2004-12-04T06:52:00.000+08:00

as a coeliac scared me, never knew what to do about the food, for a while i felt it was going to be really difficult.
but i found that people are incredibly helpful and obliging to find SOMETHING that is safe to eat for me.
living in the country is an added challenge, particularly and ironically in the WHEATBELT !!!
the local supermarket (40k's away) is getting pretty good with their range of gluten free stuff, i will write a letter to them, to thank them and encourage them to expand the range. they got some new CHOCOLATE BISCUITS, tried them yesterday... its been 9 month since i had some! they were simply delicious!

back to the socialising. sushi is always a great option, easy to make, transport and eat, most people will give you envious looks HAHA as they feast on the ordinary stuff.
it has been suggested to me to turn it into a money spinner, something to think about!
corn chips and some home made dip are great too, and of course the slap standard steak and chips ( NO chicken salt... contains gluten!)and a salad ( take own dressing, just in case theirs is based on malted vinegar ...more gluten)

had some great surprises too, TM's birthday party for instance.
he didn't think to ask the caterer about the menu in detail and suggested i bring my own ( sushi.. i suspect he wanted it for himself as he loves it ). not a problem, even though, given that it was THE COLDEST night in the year and everyone huddled around the fire clutching plates with casserole, i was a little envious and didn't fancy the cold sushi at all. a quick word with the caterer and it transpired that indeed a couple of the casseroles were guaranteed GF !
wonderful, i felt a lot better ( and warmer).

another one was the recent wedding, TM by now has taken some ownership of the condition and knows the ins and outs, gave the caterer a call but couldn't quite get a straight answer, said finger food, bring your own, no one will notice, someone there also has coeliac.

again i felt a little strange, thinking it wasn't a good look with that plastic container amongst the festivities, had my sushi ( seasonally appropriate this time)at the hotel and left a little room for some more, in case there was something suitable.
guess what? the entire menu was GF, as the mother of the bride was coeliac, it was delicious, mainly seafood and .... you guessed it...SUSHI.
i couldn't believe my eyes LOL

suddenly it all does't seem to be such a big deal anymore. and neither should it be, considering how many more people there are like me and how many more there are going to be, it is on the rise !

Gluten and Dairy free

2004-12-03T07:46:00.000+08:00

its not just the gluten i need to eliminate but ALSO the dairy...
if i have some i get major bowel reactions (spare the details), runny nose, headache etc.
so that is an even bigger challenge.
TM gave me the name of an author of the great cookbook, which has recipes that excludes ALL major allgergens, it is fantastic. the recipes are delicious and off the beaten path ( something other than just rice and vegies).
the title is "the tolerant cook" and the authors name is Tish Richardson.

making bread seems to be the universal challenge amongst coeliacs. lots of recipes available as well but they all make it sound like one big deal. personally i prefer the heavier style of bread that i grew up with, never quite got used to the fluffy, light stuff they have in Australia.

i made one the other day, no recipe, just 4 different types of flour, LSA mix, some eggs and enough Rice Milk to make it into a soft batter and it went into the oven. came out a treat!

tried some cheese the other day, still refuse to believe that the severe gut reactions were due to it :) surely it can't be.
will try again today, after all i am on my own for a few days so it won't matter :D

a little bit won't hurt...

2004-12-02T06:26:00.000+08:00

well it bloody well does!
i can't believe DrP seriously suggested that if the NSAID's he prescribed contained "a little bit of gluten" i could perhaps put up with it for a few days?
i just wanted to throttle him!!! had the pharmacist check it out before i even took them, THEN i got really sick regardless :S ( apparently not uncommon for coeliacs to be affected by NSAID's)

i think DrP needs to retire! ever so grateful he set me off on the right path, but he is definitely past his use by date! working with him ain't as much fun as it used to be either ( after all he used to worship me ;) ).

few weeks ago i had a MAJOR relapse. it started with a headache for which i took some DymadonCo ( i like going for the heavier duty stuff, a habit i got into when i was REALLY unwell) . the headache didn't go, instead it got a little worse, i got swelling of my hands, gutache, swollen feet etc. i didn't click, and thought it was the warmer weather, some drink i had, whatever. so i took some more DymadonCo.
and some more... and the day after... all the while i got worse!

finally i had a dream, where SueF was trying to poison me with a cheese croissant.
that made me think that i was missing something, just couldn't put my finger on it.
then i picked up the packet of DymadonCo and it said "contains gluten"
AAAAAARGH.... what an idiot i am!
5 days of agony, mentally as well as physically, and it was "just a little bit" that made me so miserable.

Fast Forward

2004-12-02T01:08:00.000+08:00

9 month down the track i am well and truly on the road to recovery. occasionally i have a hiccup with the diet but that is getting less and less.

joined the coeliac society after i spoke to the dietician ( being a health professional i thought i should know about all this anyway:S and never really bothered much with looking for support)
well, what an eyeopener that was, and a blessing too, so many resources and hints from likewise afflicted people, fantastic stuff.
www.coeliac.org.au/

funny thing is i was taught and therefore believed that coeliacs are all scrawny people, failure to thrive kind of stuff. i was NEVER scrawny HAHA, but now i know there are many different presentations.
take me for instance, towards the end ( just prior to the diagnosis) i gained a lot of weight, it was my body's attempt to get at least SOME nutrients absorbed, so i was constantly hungry, eating all the wrong stuff and making it worse.
fortunately our bodies are very forgiving!

i didn't have the massive diarrhoea, just IBS, aching all over, headaches most days, lethargy etc. in fact i became grossly anti social, was all just too much, only managed to go to work and home, sleep, eat and everything else was just on a "depends how i feel" basis.
for 15 years i had to have a NANA NAP, amazing... thought i was a family thing since both my parents did the same.
looking back in fact i often wonder if mum had coeliacs, her symptoms were like mine.
too late now to find out...

how it all started

2004-11-30T19:36:00.000+08:00

... well no one really knows, but way back in april i became aware by accident that my mysterious illness and overall misery wasn't in my mind at all, it was in the gut, so to speak ;)
when i collapsed on the ward, i decided it was time to visit the GP again, after the last one fobbed me off in Jan, with excuses like "its the hot weather" or "must be the diuretics" as an explanation why i am feeling so low and T I R E D.

i was not impressed but what can one do, i have to work with these fellas too:S
so then in april it was that some bloodtests revealed that i had literally no iron stores left and that was likely to be the reason why i was knackered.

i chatted to Carol about it and she said she read somewhere that gluten intolerance leaches the iron out of the body. well that confirmed my suspicions earlier that the wheat had something to do with it. i had already eliminated it to a certain degree from my diet but didn't have a clue that gluten was in many other things.

so that is when and how the journey began ....

several iron injections later i was feeling amazing, like on drugs LOL i never realised HOW BAD i was ( mind you falling asleep while bushwalking, several falls, dizziness etc SHOULD have given me a clue)

DrP said the tests for coeliac disease were unreliable, he didn't support it, said if the diet alone made me feel better it was enough proof.
i agreed ... HAHA, i mean who wants to swallow a great big snake and have an anaesthetic anyway... certainly not me!!!

it was such a hard slog in the beginning,i felt very alone, little did i know that wheat appeared to be in just about EVERYTHING.
i had many slip ups, waking in the morning with swollen hands, eyes and legs, stomach cramps etc.
i thought back and it dawned on me that all these many years that i kept waking at 5am with a gutache, having to run to the loo, the constant bloatedness and discomfort, the regular diuretics i needed weren't "just me" they had a substancial cause, which was the WHEAT ( and dairy, as i found out later as well)