If you are just joining the story, this is the second half to The Journey of a Celiac.
I left off at Christmas. I had finally started to feel like I was coming to terms with having Celiac Disease. I understood that this had been a life-changing diagnosis, and what had been horrific in the beginning was slowly starting to just be...normal. We had sunk into the routines, and they didn't seem so bad most of the time.
I remember the first time I found a gluten free cracker. Ben saw it on a stand at the commissary and bought three bags of them, just in case. (Good thing too, because the store carrying them was just a one-time-thing.)
I actually cried when I perfected a pizza recipe that didn't taste like cardboard.
I was learning to cook with quinoa, brown rice, and other grains that weren't so hard on my system.
And then, around Christmas, I started not feeling well again. We searched EVERYTHING for gluten. I replaced all my makeup, shampoo, and lotion with gluten free versions (which were NOT easy to find from Japan!) That helped a little, but there was still something.
We eventually narrowed it down to our dog groomer, who had given Seamus an oatmeal bath at his last grooming appointment. He licks everything. He would lick himself, and then lick my blanket, the couch, etc. Any time I touched any of those things, I was getting sick. So we had to (very apologetically) ask the groomer to not bathe him before cutting his hair.
That helped for a while, but there was still something. We realized that with Seamus having contaminated everything with his shampoo, it was possible he was the one who was still making me sick. We researched people with Celiac and the possibility of his dog food affecting me. I thought it was silly, but there were hundreds of blog posts about pet owners getting sick, and feeling better after switching over to gluten free dog food. Yep, you heard me, gluten free dog food. Seamus is now the trendiest dog in Misawa, having gone gluten free. But I noticed the change immediately.
And yet, there was still something. Occasionally I'd still get a panic attack, or an unexplained migraine. I'd have the constant stomach pain that was similar to my days before discovering I had Celiac Disease. What now?!?!?!
So we talked about it. Ben and I realized that there was a possibility I had another food allergy.
I've heard of this happening, but I thought I was somehow exempt. (How selfish and unaware we humans are, thinking these things don't apply to us...) A person is diagnosed with Celiac and they cut out all gluten. They feel better for a few months, and then all of a sudden, they don't anymore. While this certainly doesn't happen to every Celiac, it's a pretty common tale.
It felt like beginning all over again. Eliminating everything. Slowly working foods back in to see if they made me sick. Every time I ate anything, it felt like a game of Russian Roulette, waiting to see if this was what was going to make me ill.
Luckily, we started at the right place. A friend of mine had told me months ago that when she had finally started feeling better, she got sick again and realized she was allergic to corn. I sort of discounted this (not discounting her experience, but discounting that it would happen to me, too) because corn allergies are pretty rare.
So of course, that's what it is. After eliminating all grains, I started back with corn. Some Corn Chex with breakfast, some tortilla chips with lunch, homemade cornbread with dinner. And it all came crashing down on me Friday afternoon.
Corn.
Maize.
Corn is in everything. Corn is America's most-planted, most-used crop. And most gluten free foods contain it.
And this is where I begin feeling helpless.(And where I have a temper tantrum like one of my students...I do always say that you are what you teach...) With all the restrictions I've already made, all the things I've cut out of my life, now I have to add corn to the mix (or more accurately, take it out). It feels like I've taken one small, timid step forward and five giant steps back.
It feels like starting over again. AGAIN.
Saturday, March 23, 2013
journey of a Celiac
To preface this post, I know that by writing it now instead of waiting for it to sink in, I run the risk of sounding like a bitter old woman. In a few days, once I've recovered from the shock, I will look at all the things I'm grateful for and realize that I will get over this. But sometimes, getting it all out there helps in the healing.
As many of you know, the year past has been a difficult one for me. Feeling awful but not knowing why. Test after test after test with no result. The day my doctor told me it might be a food allergy and to try cutting out all wheat products was a day of reckoning for me. On the one hand, I thought that there was no way that wheat was causing all the problems I had been having for the past weeks, months, and (what I'd find out later) even years. No Way. But, that small voice inside me said to try it, because it made sense. All those little pieces adding up. The unexplained adult onset asthma. The cureless migraines. The weight gain despite every effort to maintain a healthy diet and exercise regime. The sleeplessness. The brain fog. The getting-more-constant-every-day stomachache that never seemed to disappear.
So I did it. I cut out wheat. I cut out rye. I cut out malt. I cut out barley. And it was the hardest thing I've ever done. Who would have thought that so many things would have gluten? Soy sauce? Soda? Canned food? JUICE? (Yes, folks, there is hidden gluten even in some juices.)
Grocery stores trips became a chore, taking hours upon hours since we had to check every SINGLE item we were purchasing for hidden gluten. The simple fact that gluten is not always listed on a product infuriated me. In this day and age, with such a rampant disease, labels deceive. And even for those items that didn't have gluten, there was always the risk of cross contamination. We had to stop buying any items that were even PROCESSED in a factory where there is gluten.
At the beginning, we said "two weeks." Two weeks to see if it made a difference, because this was just too hard to do if there wasn't one. Those people who go "gluten free" for a diet have NO IDEA what it's like to have Celiac Disease. (**Side note: if you have a friend or loved one who truly has Celiac Disease, please don't trivialize their experience by calling them picky eaters or asking them if they've lost weight with their new diet. Nobody in their right mind would choose to live like this if they had the choice. It's not a diet. It's merely the only option someone with Celiac has to be able to live life without constant pain**.) Yes, these fad dieters have stopped eating bread and pasta. But I have no doubt in mind that these people still shop pretty regularly for most of their other products. Shopping for them does not include spending hours on their phones in various aisles, checking product websites, food allergy blogs, and iPhone apps created to help Celiacs purchase food that is safe for them. They don't fret and worry every time they go out to eat, or throw a party that has gluten-y food on a table next to their safe food. They don't have to worry that one bite of gluten will have them writhing on the floor in pain for the next week.
ONE BITE.
Yes, another thing I learned on this journey of self-discovery is that one bite is all it takes. One crumb. One speck. Once the body of a Celiac begins to repair itself from all the damage gluten does, it begins to see gluten as the enemy it so rightly is. Some have likened it to an alcoholic who has been sober for a year and then drinks a bottle of vodka. The body, knowing it has ingested the enemy, rejects it. But here's where the difference lies. Celiac is an auto-immune disease, so instead of attacking the gluten, the body attacks itself to get rid of it. EVERY time I have even a speck of food that has touched gluten, my body beats itself up. The panic attacks, the migraines, the horrible "crunching" feeling of glass in my abdomen. The ten or so other symptoms I won't go into detail about here. Do I need to say more?
So, obviously, I avoid it.
Easy, right?
No.
It's more than just regularly checking to make sure food it safe. It now involves cooking everything from scratch. It involves, basically, not eating out. It involves going to work after an attack, feeling like I was hit by a truck, and then pretending to be okay so my students and co-workers don't see how miserable I am. It involves being the odd-man out at parties and gatherings. Nobody wants bring up the topic, but nobody knows how to deal with it, so it's just awkward. And sometimes it's even worse when people try to make the effort. They might make me something gluten free and I feel like I'd be an awful person if I don't eat it. But in most cases, that person didn't think to disinfect the utensils with gluten free dish soap. Or check their spices for hidden gluten. Why would they? They don't feel "sick" for a week or two if steps are skipped. I would have been one of those well-meaning friends six months ago, not realizing I wasn't being as helpful as I thought.
I feel like a total jerk just having typed that last paragraph. People are reaching out and it sounds like I'm not grateful. BELIEVE ME, I AM. It's just that every day is a new experiment. Every new food is an uncertainty. And most of the time, in my experience, it hasn't gone well
So that brings me to winter. Six months in, and things finally start to feel manageable I have found a few restaurants who are happy to accommodate my (what seems like) finicky eating. I have been able to share with my friends enough so they have a basic understanding of what I'm going through. I've got a handle on the situation and I don't feel so horrible about having Celiac.
Then Christmas comes and it all starts to go downhill.
(To Be Continued) To read the next part, click Part Two: Getting Through the Maize
As many of you know, the year past has been a difficult one for me. Feeling awful but not knowing why. Test after test after test with no result. The day my doctor told me it might be a food allergy and to try cutting out all wheat products was a day of reckoning for me. On the one hand, I thought that there was no way that wheat was causing all the problems I had been having for the past weeks, months, and (what I'd find out later) even years. No Way. But, that small voice inside me said to try it, because it made sense. All those little pieces adding up. The unexplained adult onset asthma. The cureless migraines. The weight gain despite every effort to maintain a healthy diet and exercise regime. The sleeplessness. The brain fog. The getting-more-constant-every-day stomachache that never seemed to disappear.
So I did it. I cut out wheat. I cut out rye. I cut out malt. I cut out barley. And it was the hardest thing I've ever done. Who would have thought that so many things would have gluten? Soy sauce? Soda? Canned food? JUICE? (Yes, folks, there is hidden gluten even in some juices.)
Grocery stores trips became a chore, taking hours upon hours since we had to check every SINGLE item we were purchasing for hidden gluten. The simple fact that gluten is not always listed on a product infuriated me. In this day and age, with such a rampant disease, labels deceive. And even for those items that didn't have gluten, there was always the risk of cross contamination. We had to stop buying any items that were even PROCESSED in a factory where there is gluten.
At the beginning, we said "two weeks." Two weeks to see if it made a difference, because this was just too hard to do if there wasn't one. Those people who go "gluten free" for a diet have NO IDEA what it's like to have Celiac Disease. (**Side note: if you have a friend or loved one who truly has Celiac Disease, please don't trivialize their experience by calling them picky eaters or asking them if they've lost weight with their new diet. Nobody in their right mind would choose to live like this if they had the choice. It's not a diet. It's merely the only option someone with Celiac has to be able to live life without constant pain**.) Yes, these fad dieters have stopped eating bread and pasta. But I have no doubt in mind that these people still shop pretty regularly for most of their other products. Shopping for them does not include spending hours on their phones in various aisles, checking product websites, food allergy blogs, and iPhone apps created to help Celiacs purchase food that is safe for them. They don't fret and worry every time they go out to eat, or throw a party that has gluten-y food on a table next to their safe food. They don't have to worry that one bite of gluten will have them writhing on the floor in pain for the next week.
ONE BITE.
Yes, another thing I learned on this journey of self-discovery is that one bite is all it takes. One crumb. One speck. Once the body of a Celiac begins to repair itself from all the damage gluten does, it begins to see gluten as the enemy it so rightly is. Some have likened it to an alcoholic who has been sober for a year and then drinks a bottle of vodka. The body, knowing it has ingested the enemy, rejects it. But here's where the difference lies. Celiac is an auto-immune disease, so instead of attacking the gluten, the body attacks itself to get rid of it. EVERY time I have even a speck of food that has touched gluten, my body beats itself up. The panic attacks, the migraines, the horrible "crunching" feeling of glass in my abdomen. The ten or so other symptoms I won't go into detail about here. Do I need to say more?
So, obviously, I avoid it.
Easy, right?
No.
It's more than just regularly checking to make sure food it safe. It now involves cooking everything from scratch. It involves, basically, not eating out. It involves going to work after an attack, feeling like I was hit by a truck, and then pretending to be okay so my students and co-workers don't see how miserable I am. It involves being the odd-man out at parties and gatherings. Nobody wants bring up the topic, but nobody knows how to deal with it, so it's just awkward. And sometimes it's even worse when people try to make the effort. They might make me something gluten free and I feel like I'd be an awful person if I don't eat it. But in most cases, that person didn't think to disinfect the utensils with gluten free dish soap. Or check their spices for hidden gluten. Why would they? They don't feel "sick" for a week or two if steps are skipped. I would have been one of those well-meaning friends six months ago, not realizing I wasn't being as helpful as I thought.
I feel like a total jerk just having typed that last paragraph. People are reaching out and it sounds like I'm not grateful. BELIEVE ME, I AM. It's just that every day is a new experiment. Every new food is an uncertainty. And most of the time, in my experience, it hasn't gone well
So that brings me to winter. Six months in, and things finally start to feel manageable I have found a few restaurants who are happy to accommodate my (what seems like) finicky eating. I have been able to share with my friends enough so they have a basic understanding of what I'm going through. I've got a handle on the situation and I don't feel so horrible about having Celiac.
Then Christmas comes and it all starts to go downhill.
(To Be Continued) To read the next part, click Part Two: Getting Through the Maize
Saturday, March 9, 2013
winter humdrum
Ah, the business (or shall I say, busy-ness) of life.
I had such good intentions of blogging at least once a week, and I actually did it for part of the year! Maybe with the snow, came the inability to multi-task. Or maybe, I haven't felt the need to post because we haven't done very many exciting things this winter.
We have played in the snow (we have gotten just as must as last year, though everyone assures me that this is a fluke and never happens), I finished my year-end-photobook (yeah, in March. But in all fairness, we did so much last year that the book was twice as big as previous years' books!), and we have done all our daily/monthly/weekly routines. Work, bowling league, book club, JAFC, etc. Nothing out of the ordinary or adventurous.
Not that our intentions weren't good. I think Japan has decided that we both need to rest.
For the past few weeks, we have wanted to go up to the gorge and photograph the (hopefully) frozen waterfalls. And each week has been the same: Thursday rolls around, and is snow-less. We get excited. Friday comes, with sunshine and warmer (42 degrees = warmer) weather. The anticipation becomes unbearable: finally, we can go explore! But then Saturday morning comes, with blizzards and wind and white-out conditions. Roads are closed (of course, the very roads we wanted to take) and traffic is awful.
And so, with this humdrum weather, we stay at home.
Spring will come soon, and we will start traveling and adventuring once again. For now, though, we rest.
I had such good intentions of blogging at least once a week, and I actually did it for part of the year! Maybe with the snow, came the inability to multi-task. Or maybe, I haven't felt the need to post because we haven't done very many exciting things this winter.
We have played in the snow (we have gotten just as must as last year, though everyone assures me that this is a fluke and never happens), I finished my year-end-photobook (yeah, in March. But in all fairness, we did so much last year that the book was twice as big as previous years' books!), and we have done all our daily/monthly/weekly routines. Work, bowling league, book club, JAFC, etc. Nothing out of the ordinary or adventurous.
Not that our intentions weren't good. I think Japan has decided that we both need to rest.
For the past few weeks, we have wanted to go up to the gorge and photograph the (hopefully) frozen waterfalls. And each week has been the same: Thursday rolls around, and is snow-less. We get excited. Friday comes, with sunshine and warmer (42 degrees = warmer) weather. The anticipation becomes unbearable: finally, we can go explore! But then Saturday morning comes, with blizzards and wind and white-out conditions. Roads are closed (of course, the very roads we wanted to take) and traffic is awful.
And so, with this humdrum weather, we stay at home.
Spring will come soon, and we will start traveling and adventuring once again. For now, though, we rest.
Thursday, March 7, 2013
thankful thursdays - when there isn't much to be thankful for
This month has brought what seems like blow after blow. I found out I am also allergic to corn, which means another HUGE shift in what I can (and can't) eat. I haven't felt well since Christmas and it's exhausting to continue to work and try to be normal despite that. We also found out that because of the sequestration, we will most likely be furloughed for several days. Because we're both teachers, it will affect us both and means that we will have to cancel our trip to Korea AGAIN. It might also affect our trip home this summer, which would be devastating.
These, mixed with what seems like a zillion little things, have made this a difficult time to be thankful.
It's times like these that I have to remind myself a hundred times a day that it could be worse. It's days like this that keeping this record of things I've been thankful for has given me a bit of perspective. It's times like this that I need to be grateful, if only for the sun shining down on me.
These, mixed with what seems like a zillion little things, have made this a difficult time to be thankful.
It's times like these that I have to remind myself a hundred times a day that it could be worse. It's days like this that keeping this record of things I've been thankful for has given me a bit of perspective. It's times like this that I need to be grateful, if only for the sun shining down on me.
83. On this day, where it's a lot easier to pout, I'm thankful for the little things, like the warmth of the sun on my face.
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