communion, celiac disease, and you.

Recently, I came up against yet another hurdle in my life with Celiac Disease...what does the Celiac do when it's time to take Communion?

(Let me preface this blog post by saying I don't care what religion you are, or if you're no religion at all; that's not the point. If you have Celiac Disease, you're more than welcome here. These are just my thoughts and my feelings; feel free to skip this post if you want.)

I was told I have Celiac Disease on July 14, 2011. Shortly after, we had Communion at church. I belong to one of the largest mainstream Protestant denominations in the world, and it's basically up to each local church how often they celebrate Communion. Some do it every couple of weeks, once a month, a few times a year, it just depends on each local church and their pastor.We have communion about six to eight times a year. I was fortunate enough to find out beforehand the last time, and came prepared with my own rice cracker. This was early in my diagnosis, so I didn't even think about possible cross-contamination of the little cups of juice.

Since then, however, I have learned a lot more about cross-contamination, and when I showed up at church on Sunday morning (my daughter and I have to be there at 8:30 due to music practice being at that time) and learned we were having Communion, I kind of panicked. I wasn't prepared!

now, let's look at the good things about gluten intolerance.

In a previous post, I spent some time talking about the bad things about Celiac Disease; the rough things we have to do, the various hurdles we have to deal with on a daily basis, stuff like that. I was trying to put forth a worst-case scenario to make a point about how people who can eat whatever they want just taking that fact for granted.  Now, I'd like to take a moment and talk about all of the positives that Celiac Disease has brought to my life.

• It's taught me that I can't just put anything in my body and expect to be healthy.

For years, I abused my body. I just fed it anything and expected it to run and run and run, go at top speed and stay in mint condition. Oh sure, every once in a while I'd try to make a change. I followed a fad diet put out by a cult leader and lost fifty pounds. I was a vegetarian for about a day and a half. I tried to be low-carb until I saw that "low-carb" meant "no pbj". And, if you've followed this blog at all, you'll know that I followed an IBS diet plan for about two years, back when I thought this was IBS (lesson to you:  Don't self-diagnose; find a good physician).

But this has really forced me to stop and take a good, hard look at my life and my eating. Even back when I was eating for IBS, I rationalized that having a bite or two of "forbidden" food wasn't going to really hurt me that much. But now, I realize that eating gluten will have a very serious negative effect on my health.  Even one bite will have an almost automatic detrimental effect on my gut. Not only are there long-term, shapeless, faceless consequences, but there are immediate short-term consequences. Whenever I want to cheat, I just look at whatever is tempting me and think:  "Okay...do I eat this and have gut-bombs and get cancer, or do I just skip it?"  Let me tell you, the choice is easy when I think about it that way.

• It's taught me that good things can come in oddly-wrapped packages.

For years, I have prayed to God to please, please, please help me lose weight. And this has been my answer. I know...you're thinking, "Why would God send you a disease just to help you lose weight?" But you see, I wouldn't listen any other way. I wanted to lose weight, but I wanted to do on my terms, which in my case meant that I could have ice cream every night and candy bars every day. As long as I was relatively healthy I could rationalize my weight away, even though I was seriously unhappy about how I looked. But now that I'm getting older (forty-two years young), I realize that I'm not ten feet tall and bulletproof. If I want the rest of my life to be happy, healthy, and fun, I need to lose this extra weight. I've lost around ten pounds so far by going gluten-free; add that to the ten I'd already lost, and that's twenty unhealthy pounds gone.  Only...um, a lot more to go.

• It's taught me to make good food choices.

You know how it goes; you're out running errands, and you forget to eat. Suddenly, you find that you're starving. What to do? If you're like me, you often chose the easiest route...hit a drive-thru and order a double cheeseburger, only cheese and onions. Or, if you're standing in a checkout, you grab a bag of cookies or a candy bar. But now with a diagnosis of CD, those options are out. I've found that I won't starve to death before I get home, and I'm really truly hungry to the point of a problem (I have mild hypoglycemia), I'll grab a single serving of string cheese or a banana or a gluten-free snack bar (Larabars are a good option). Of course, I've also learned that I need to be prepared, so I normally have a gluten-free snack in my purse. That's another part of making a good food choice, because if you're prepared with a healthy snack you're much less likely to make a bad food choice on impulse.

• It's taught me that life could be much worse.

Yes, when I was first diagnosed with Celiac Disease, I was not thrilled. Sure, I was happy that what I was suffering with finally had a name, and that it wasn't all in my head like my previous physician tried to make me believe. But, at the same time, I couldn't help but have some days when I just sat around and felt sorry for myself. The more I learned about what to avoid, the more I realized just how many foods contained gluten, including some of my favorite foods. I still don't know how I'm going to handle Thanksgiving and Christmas (I always make homemade cinnamon rolls on Christmas morning...I'm going to have to do some experimenting).

But at the same time, I could have life much, much worse. After all, if all I have to give up is some gluten to have a fairly healthy life, that's not such a big price to pay, is it? Is eating a full-floured cinnamon roll really worth getting cancer for? Is what I'm being asked to do really that tough? After all, it's just food. It isn't the center of my universe. God is, followed by my family.

And that's probably the best lesson of all.

september 13: national celiac awareness day!

Now, I’d like to point out that I’m focusing on the worst case scenarios in this little example.  If you’ve dealing with Celiac Disease for longer than a couple of weeks, you already know the basics of how to deal with these situations.  But I wanted to lay out an exaggerated set of circumstances just to make a point. Okay? Okay.

In honor of National Celiac Awareness Day, I’d like you to take a moment and consider doing the following:

Let’s live a day in the life of someone with Celiac Disease.

so...have you ever received this reaction?

Lots of times when I tell people I have Celiac Disease, I get a blank stare in return.  Many people simply have never heard of it, or can conceive that someone might have something like a "wheat intolerance".  I get several questions and/or comments in return, and most of them go something like this:

• What in the world do you eat, if you can't eat wheat?
• Well, what about this? [shows me a random oat product, such as instant oatmeal or a granola bar]  This isn't wheat, why can't you eat this?
• So nobody can even touch you if they have eaten a sandwich?
• How do you go out to eat?
• I could never do that.  I would just eat some spaghetti and be done with it.
• But I made this special!  Can't you try at least one bite?
• What in the world kind of doctor would diagnose you with something so weird?  That just doesn't make sense.
• I think I'd put up with a little diarrhea if it meant I could have bread.
• I've never heard of anyone being allergic to wheat.

Once they get to that last one, I literally have to hold myself back from saying, "It's not an allergy, it's an intolerance. Weren't you listening?"

I know what I say (and I'll post that later on), but what do you respond to questions or comments like these?

my upper endoscopy, or egd.

So a few days ago, I told you that I was scheduled to have an EGD, or esophagogastroduodenoscopy, or upper endoscopy (which is much easier to pronounce).  Let me tell you about what happened, which I must stress is only indicative of my own experience.  YRMV.

I showed up at the medical center in jeans, t-shirt, and flip-flops.  When I had my colonoscopy, I wore black yoga pants, mainly for comfort but somewhat for camouflage against any, um, stains (which I fortunately didn't need to worry about).  I didn't figure it would matter too much for a scope scoping out the other end, and it turns out I was right.  I was taken back to a prep room, where I was asked to remove my shirt (bra stayed on) and to don a hospital gown.  I was then sat in a lovely overstuffed leather recliner while a nurse asked me a series of questions that I've already answered a thousand times.  Another nurse came in and attempted to place an IV in the crook of my elbow.

Let me stop at this point to say that I have very shy veins.  They don't like to come out and play with the nurses with the funny needles, and I can't say as I blame them.  I really, really, really don't like needles.  So anyway...I have one good vein, in my right inner elbow, about a knuckle's width from a certain freckle, and I always point it out to the nurses as a sure bet.  That way, they're not poking me unnecessarily.  I know that hitting the same vein over and over can't be good, but since I don't get stuck but once every so often I'm not overly concerned.  If I ever get to the point where I'm having to have blood taken or an IV inserted on a continuous basis, we might have to look around for more veins to mine.

So, continuing...the first nurse couldn't find a vein.  She poked my inner right elbow, the back of my left hand, and then the back of my right hand.  By this point, I was getting quite anxious (I was being good, though) and she was obviously getting flustered.  Fortunately for me, she went and got a nurse who was able to get an IV in the back of my right hand.