Simply Celiac In Indonesia

One of the things that I have always tried to stick to when writing this blog is to keep it simple, light and sometimes funny. To complain about the culture I live in and the life I have is disrespectful to those around me, and to those back home, it would make them try to convince me to come home:) I think that, for the most part, I've stuck to that. That's why it's been difficult to write a lot since we came home from Germany, because life for me hasn't been simple, or light...although it always finds a way to be funny.

Six weeks ago today I was standing in a doctor's office, a little cloudy from having been

temporarily drugged (voluntarily!) and a little hungry from not eating for the last 24 hours. I'd just had the last of many medical tests completed, and I was heading home to Indonesia the next day. The doctor, while handing Tris a business card with some handwriting on it, said in stilted English, "I cannot speak English, and you cannot speak German. This is what your wife has. You can go onto the internet and research how to care for this disease. Thank you for coming in." And that was that. We went back to our relative's home, packed up, celebrated a birthday and said our goodbyes, and drove off to the airport the next day.

For almost 2 years I've had some symptoms of "something," but I just didn't know what. It seems to have started when, as a fool, I ate some 'agar agar,' or green jello, in some slums in South Jakarta (I didn't want to be rude...I've since learned that it's ok to say no!). Immediately I became ill and was diagnosed with bowel infection...not uncommon here in Indonesia. That lasted for some time, and then life returned mostly to normal. Except, it never really did. From that point on I began to lose weight, lose hair, experience regular stomach issues, need to nap during the day, and to forget really simple things. Even though I'd exercise regularly in the gym and do outdoor sports, I never really improved in stamina and ability. I have to admit, I lost motivation to do a lot of things, probably because of the lack of energy I was experiencing. When I went to doctors here, they told me I had a variety of things: depression, overactive e.coli, chronic fatigue and one doctor, at least, told me he had NO idea what it was that was affecting me.

When I went to Canada this past summer, it seemed that I was ok. My energy seemed to return somewhat and my stomach didn't bother me nearly as much as it had before. Because of this, when I returned to Indonesia, I figured it was the heat that was getting to me. I tried to keep cool and although I'd managed in the past to "indo-fy" myself somewhat, keeping cool felt good. Still, it wasn't good enough. At one point my friend and I sat down at our laptops and decided that we'd figure out what was wrong with me. May I recommend to anyone reading this that you do NOT self-diagnose from the internet? When we were done, it seemed perfectly clear that I had parasites throughout my body that over time would crawl into my brain, live off my body, and eventually suck my will to live. Seriously.

It wasn't until I went to Germany that I realized that heat really had nothing to do with my condition. It was -10C and I was still feeling unwell. That's what lead me to my German family's local doctor, who within 2 hours took a variety of fluids from me, did an EKG and an ultrasound, and had me booked for 3 more tests within the next week. I must say, I was completely and utterly impressed with the German medical system.

Now, six weeks later, after having being diagnosed with Celiac Disease, I try to live a life different from the one I have known. Although it's easiest to tell people that I'm allergic to gluten, it's much more complicated than that. Here's what I know about Celiac Disease, and yes, I learned most of it off the internet:)

Celiac Disease is a genetic, autoimmune disease that if undiagnosed can lead to a variety of complications within ones' organs, especially the small intestine. When I eat anything, ANYTHING, containing gluten, my body begins to create antibodies that somehow (haven't gotten that knowledgeable yet) cause the villi in my small intestine to flatten. It's through the villi that my body absorbs the majority of my nutrition, and so when they are flattened, my body has nothing to run on. Hence the loss of hair, weight and even of my mind sometimes!

When I tell people of my diagnosis, their first response is always "it's a good thing that you now know what's going on." I agree. However, there's more to knowing than just being aware of what I can and cannot eat. It seems my villi aren't really willing to stand up yet, and so now I'm at the point of trying to find competent medical intervention that would allow me to figure out how to gain some nutrition and gain some weight. God is good, and He's brought a friend into my life here in Indonesia who is a nutritionist. Not only that, but she has siblings with Celiac and was involved in the "re-nourishing" of a friend who was also in the tropics when she discovered she had the disease. As well, I've been in contact with an internal specialist in a nearby city, and although he is Indonesian, he speaks German and can therefore read my results from all the German doctors.

Without sounding whiny, which really, I do a lot inside my head (NO COKE?? NO more White Spot burgers, EVER???? No more bread/cinnamon buns/Chili's restaurant buffalo wings???), I have to admit, I am tired of chewing. It seems that I eat all day. Food seems to be a main priority as I figure out weekly what I can cook (ok, I admit it, what our helper can cook...with my irritating input over her shoulder nowadays), and even with careful planning, I still get grouchy with the lack of food in the house. Also, it seems that being lactose intolerant often comes hand-in-hand with CD, and I seem to have taken that on as well. Good bye ice cream, at least temporarily...and o boy, I am praying it is temporary!

The answer to my dilemma, which is food, seems to be careful planning, setting aside intentional cooking and eating times, and to remind myself that the majority of the world around me eats the same food...white rice..day in and day out, 365 days a year. In my home I at least have access to fresh fruit and vegetables, meat, whole grains that do not contain gluten, even sugar and sweets. I can make popcorn, eat cookies made from special flours (some much more nutritious than wheat flour), cut an apple and dip it in peanut butter, and eat dark chocolate any time that I want. Even our helper and our driver cannot do that, so who am I to complain?

Ultimately, I am thankful for this disease. It is not cancer. It is not life-threatening if I manage my diet. I have choices. I am alive and I am mostly healthy. I am getting healthier and, with some proper intervention, will have the energy I once had. My brain, limbs, eyes and organs are all functioning and doing as they are supposed to. I feel sorry for myself now and then, especially when eating out with friends and I am only able to order the white rice when they're eating delicious, saucy, crunchy bits of everything under the sun, but I'm a big girl and although those panties are a little on the large side right now, I can still put them on and get on with life.

Thanks for reading.

ps. I'm still trying to figure out if there's a way that CD is 'triggered' but it seems to me that the bowel infection merely weakened my body enough for the CD to manifest. That's my personal, uneducated diagnosis and I'll stick with it until I learn something from someone who knows what's going on.