Learning to live with Celiac Disease one day at a time

Monday, February 28, 2011

Commercial blast from the past

You're my hero, Pepto Bismol:
http://www.youtube.com/watch?v=s0J9I1Vgt5c

Actually, I've mostly phased out Pepto Bismol, but even at 15 and 13 my kids still sing this song and so for them, I posted this commercial.  I don't know if charcoal pills are common outside of Indonesia, but they do wonders on bad days here.  Very inexpensive, too!

(For the record, charcoal pills also work big miracles on curious little Corgies who sample slug bait for supper).

Thanks for reading.

Saturday, February 26, 2011

Today is not a good day...until now

Dear Lord, why did you make food smell so good?  Today is not a good day.  I hate being hungry.  Today is a day where I eat my "special food" and watch my family, no, SMELL my family eat their meals.  Leftover lasagna (wheat noodles, cheese and milk sauce), oatmeal with milk and brown sugar, fresh wheat bread, and tonight, order-in pizza.  In my 'past life,' I didn't even like the order-in pizza, but tonight, in my mind, I did. It's not something I'm proud of, feeling sorry for myself, but it's easy to fall into when I'm hungry and haven't left the house all day.

As I talk to you now Lord, I hear the Islamic call to prayer outside.  Not only does it remind me, as it often does, that as millions of Muslims head to prayer, You are waiting for me to take time to talk to You.  It also reminds me that so many of those millions who are praying to their god of Islam, do so with hungry stomachs.  As with me, theirs is not a choice.  I did not choose to have a special diet, but I have choices within that diet.  Many have no choice but to eat what is available to them, and that can go as far as having to eat what someone else has thrown away.  In that light, forgive me Lord for not taking care of myself, for not being one step ahead and having food prepared for when I do get hungry--and you know that when I get hungry making food decisions is a frustrating event--and mostly, for feeling sorry for myself that I have to plan my days a little more than the regular person, needing to organize my meals around nutritious grains, veggies, and meat.  Help me to not be so selfish in a land where the food stored in my home alone could feed a family of 4 for probably 3 weeks.

Thank you Lord that this disease was diagnosed while I live here in Indonesia.  I hope that as I struggle, as I know I will, I'll be able to slowly change my perspective from 'I hate baking with mixed flours!' to 'thank you for providing me with variety"...

Thank you for life, for what You have in store for me, and thank you for being patient with me.

Amen.

Thursday, February 24, 2011

Falling off the wagon hurts!

Almost two months now and I've been feeling pretty good.  Until Tuesday.  Having avoided gluten in all foods, mostly avoiding dairy, I think I was getting a little cocky with how good I've been feeling.  I've been able to exercise quite regularly, and last week I played sports for over an hour without feeling like a wet noodle when finished.  That's something I haven't been able to do for a long time!

I spent last Tuesday editing a large project, and sat in one spot for long periods of time.  Other than the obvious, what else does one do while working??  Eat, of course.  I worked through the typical list:  fruit, chips, gluten-free cookies, juice, more cookies, water, nuts and dried fruit.  Boring...I needed chocolate.  Not the permitted 70% almost dairy-free cacao bar, but something a little more...seductive.  After a long, computer-glazed stare into the fridge, a chocolate bar jumped out at me.  I've always told my 15 year old son that food DOESN'T do that when you stand with the fridge door open, but I take that back.  This Skor bar swacked me in the face on its way out.  There's a bruise above my eyebrow to prove it.

I ate the Skor bar.  I didn't enjoy it as much as I thought I would, but that's probably because I scarfed it down like, say, a teenage boy--in 3 bites.  Seriously.  Usually I let it melt a little on my tongue but it had been so long!

Dumb idea.

As used to happen, the pain started just before dinner, and like I used to hope, I ate food thinking maybe it would settle the chaos.  Didn't happen.  I made another big mistake: I left the comfort of my home and headed to the movies.

There's no need to describe the pain, but I do need to admit that I realize I was really, really dumb.

I have a good friend who is a nurse, and she warned me from the beginning that it was going to be hard to go cold-turkey.  In response to her advice, I began filling my cupboards with any and all sorts of gluten-free/dairy-free goodies.  Really, I've purchased everything in Jakarta that I could find labeled "gluten-free."  Some of it's good, some of it led me on the evil path to the Skor chocolate bar.

Lesson learned:  I might need chocolate, but I need to be healthy more.  Life is too short to compromise an evening with my husband and some friends because of a craving.  I've got to keep reminding myself that it's all about the big picture, not about the here and now.

Sunday, February 20, 2011

What happens now?

So what happens now?  Almost 2 years of misdiagnosis in Indonesia, final diagnosis 6 weeks ago in Germany, tons of celiac information on the internet, no actual medical intervention available here...yet.  I have one nutritionist friend I can call on and who has helped me incredibly already, and I have an Indonesian internal specialist who is looking at my results.  I'm not sure what he'll be able to do because I'm pretty sure that he's not really familiar with this disease.  That was confirmed to me when he told me "Madam, you have a very rare disease."  I live in the land of white rice, and so yes, it is very rare here.  When you mention Celiac disease to any ex-pat here, their typical response is "my brother/sister/aunt/mother-in-law has the same.  They've learned to live with it just fine."

I have questions for those who are living with it just fine.  How did they get there?  When did they start feeling like they were improving?  One friend told me that her brother took one month to heal.  I'm over that and then some.   So many questions and although some are being answered with time, I am still seeking some professional medical intervention.  I have to admit that I am being stretched incredibly in the kitchen.  I love to cook and especially to bake, and so have had some interesting experiences with both.  I've found a variety of flours and am still looking for some others.  Fortunately, I have access to some that I think few people do...when I google purple sweet potato flour and banana flour, very little comes up.  I'll have to discover some really excellent ways to use them and then post.

I keep having to remind myself that I am not on a simple cleansing diet that will end in two weeks.  This is for life, and it's for MY life.  It'll be interesting to see what turns life will hand me on this most excellent adventure.

Thanks for reading

Wednesday, February 16, 2011

Simply Blogging

My name is Kim and six weeks ago I was diagnosed with Celiac Disease.  Two and a half years ago my husband, 2 children and I moved from the West Coast of Canada to the tropical island of Java:  less exotically, we moved near Jakarta, a traffic-congested, smog-smothered city teeming with people and with sites and sounds and smells like we'd never experienced before.  My husband started a blog so that people back home could keep track of our journey (we didn't know we'd stay longer than our intended 2 years), and he got too busy to keep it up.  I took it over and realized, as I wrote, that I was forced to write accountably, meaning that I had to write as if both Indonesians and loved ones back home were reading.  I couldn't write those things that, after the frustration and anger subsided (ie if I wrote a post just after 4 hours in Jakarta traffic...) I'd feel ashamed at the words I chose.  Over the years I felt that this kind of writing has kept me focused on the positive and has enabled me to live here with joy rather than discontentment.

This is what this blog is about.  I have already 'mystery-written' a dozen postings over the last 6 weeks in my head, and I believe that by writing out the frustrations and successes of each day, it'll be that much easier to learn to live with Celiac.  Although there is the chance that no one else will read this, I do hope that as I learn to live this journey, I can encourage others to do the same.  I have taken time to look over many blogs, and so many of them contain recipes and advice that, in the beginning, completely overwhelmed me.  I'm going to start slow and as I find VERY easy recipes, ones that don't take much effort and that taste good, I'm going to share them here.  Simply yummy and simply easy.

Living in Indonesia, access to non-gluten flours and flour mixes is a little trickier, although they are available.  Mostly they are a bit stale and honestly, at this point nothing tastes as good as a gluten-filled, wheat-based chocolate chip cookie, loaded with butter and chocolate.  I've come to realize that it will take time and effort to create a cookie I love.  I've also learned that ANY cookie recipe calling solely for soybean flour will be sure to turn out bitter and disgusting; even the lizards in my kitchen wouldn't go near them!

To start, a friend found me some Hazelnut milk (made in Oregon, USA) and I wasn't crazy about the flavour.  Since black tea and coffee seem to be off my list, for now at least, I really needed something I could drink with a slice of rice bread and honey.  After a little searching, I found some ideas on the net (not a whole lot of hazelnut milk recipes out there!), altered them to my taste, and ended up with a yummy hot drink.

Hot Hazelnut Milk
1 mug of hazelnut milk
honey to taste
cinnamon & dash nutmeg to taste

Heat hazelnut milk in microwave with a little honey.  If you have a small, hand-held whipper, now's the time to try it out and get some foam going.  Sprinkle with cinnamon and the teeniest bit of nutmeg.

That's as simple as it gets.

Thanks for reading.