so it's kinda like the colonoscopy, except from the other direction.

I had an appointment with the gastroenterologist today (hey, Google, why is there a squiggly red line underneath that word?) and, to make a long story short, she's ordered an EGD for me to undergo today.  For those of you unfamiliar with that particular acronym (as I was), it stands for esophogastroduodenoscopy (there's that squiggly red line again...even "squiggly" doesn't have a red line).  Basically, what they're gonna do is put me under just like they did for the colonoscopy, and then run a scope down my throat and take a look at my esophagus, stomach, and the first part of the small intestine, called the duodenum.  The first thing I asked the doctor was if I would be awake for this particular procedure...thankfully, the answer was no.  :)

She is a young doctor, but she does seem to know what she is doing.  That makes me feel good, because I don't want to trust my gut to anyone that I don't have a good gut feeling about.

I also have an appointment next week with a dietitian, so we can discuss various things related to Celiac Disease, foods, and food prep.  I'm actually looking forward to that, since it will give me a chance to ask some questions I have about cross-contamination and just how careful I truly have to be.  Right now, I feel like all I'm doing is washing my hands.  Seriously, I go through so many paper towels, I've probably killed a forest.  Celiac Disease and OCD go together like fire and gasoline.

Truth be told, I'm also looking forward to the procedure later today.  I'm curious as to what is in there, what it looks like, and just how much damage has been done.  The prep is a lot easier (only water to drink and nothing to eat after midnight, and no water after 5 AM) and I should get some answers to questions I've had for a long time.

I'll let you know how things go, what I find out, and how the whole thing felt.  :)  Stay tuned!

don't take anything for granted...gluten hides everywhere.

I've had a bad couple of days.  Please, allow me to indulge in a little pity party for a while.  Catharsis is good for the soul.

I had some leftover ham and a hambone.  Growing up in the Midwest (with parents from Kentucky), it's practically a law that when this happens, you make soup beans.  I was in the bean aisle, thinking about what I wanted to make, when I spotted 15 Bean Soup.  Yay!  I haven't had this in darn near forever.  I read the ingredients, saw that they had no wheat or gluten, and so I tossed them in the cart.  After all, it's beans.  Come on.  Beans!  Perfect, right?

The next day, I thought...oh no, I can't have ham and bean soup without cornbread!  Come on.  You gotta have cornbread with beans.  But, I've been doing this for a couple of months now, and I realize that just because it's cornmeal doesn't mean it's gluten free.  Lots of manufacturers process corn on the same machines that process wheat. So, off I trotted to the store to find me some gluten-free cornmeal.

a thought about cross-contamination.

It occurred to me early on in my journey with Celiac Disease that there might be a risk for cross-contamination in the foods I might be eating.  It hit me one day when I was getting ready to make a peanut butter sandwich...I was using gluten-free bread, yes, but when I got ready to dip my knife in the peanut butter I suddenly remembered my husband also making a peanut butter sandwich earlier that day.  I thought...well, if he spread the peanut butter on regular bread, and then if I spread the same peanut butter on my bread, aren't I contaminating my bread?  Great.  No PB&J for me that day.

I solved my problem by going out and buying my own jars or bottles or tubs of peanut butter, jelly, margarine, mayonnaise, and whatever else might become cross-contaminated through regular daily use.  These items are clearly marked as mine and everyone else in the house has strict instructions not to touch or eat out of them.  It isn't selfishness, it's survival.  (I later read in The Complete Idiot's Guide For Gluten-Free Eating that this is a good idea...hey, GMTA.)

So, I've become pretty sensitive to cross-contamination, such as touching a "contaminated" food and then touching a "safe" food.  Therefore, it upsets me when I go to a store and see something like this:

Various flours side by side at a store.

Now, if you look at the box of wheat gluten, you'll see that it says it is in a "sealed bag".  Okay, so if it is sealed, it might be safe...but then again, it might not, since the box itself could be harboring contaminants from the packaging process.  Have you ever used flour in your kitchen?  It gets everywhere, no matter how neat you try to be. But, look at the white flour bag and the soy flour bag.  They are not sealed inside, other than the sealing used on the bag itself, which is made of paper.  Pick up a paper bag of flour and plop it down on the counter.  See that cloud?

Once I got home, I looked at that photo and noticed something I hadn't noticed at the store (in my defense, I was in a hurry, and I didn't want to get in trouble for taking photos in this particular huge big-box world-wide retailer).  I went back today, and took a new photo.  Look at the bottom of the paper bag of soy flour:

See the white powder?

That is some sort of white powder on the paper bag of soy flour.  Is it soy flour that has leaked out of its bag?  Or is it some of the white flour from the bag next to it?  It doesn't look like the bag of white flour has leaked, but how do you know?  Maybe it leaked from the back or the bottom.  And, as someone with Celiac Disease, who knows that you absolutely cannot have any sort of wheat, rye, barley, or anything contaminated with those grains, do you really want to take that chance?

We must educate retailers as to the proper handling, storage, and display of gluten-free products and products for those of us with Celiac Disease.  If we are kind, concerned, knowledgeable, and persistent, maybe we can help bring this to the attention of employers who don't even know that this could be extremely dangerous to a certain segment of people.

i'm back...new year, new name, new diagnosis.

I bet you thought I fell off the earth, huh?  Nope...but I've had quite a journey.

I've been gone from the blog because I became totally disillusioned with the whole Eating For IBS thing, mainly because it just wasn't working for me.  That's not to say that it doesn't work (clearly it does, for many people who suffer), but if you don't have IBS in the first place it isn't going to do you any good.  It's kinda like taking a Benadryl for a broken arm...right medicine for what it is designed for but completely inadequate for what it isn't designed for.  Quite honestly, it was just flat depressing to come here and post again and again that I was not feeling any better despite following the program to a T.  I wasn't making any progress, and I just felt like I wasn't being any help to anyone...least of all, myself.  I was feeling worse and worse and popping Imodium like it was candy.  For a while, I just quit following it altogether and ate whatever it was I wanted...I couldn't feel any worse, I reasoned.  It was certainly no way to live.

I decided to take my life back.

It was time to jettison the dead weight, so to speak.  I got rid of my physician.  She was a nurse practitioner who took over my old doctor's practice, and we had been going to her for the past several years; but she gradually got worse and worse until finally I just couldn't justify going to her any longer.  She had moved what was left of her practice to a quick-stop clinic-type place in a strip shopping center, and I felt like the service I was getting was second-rate at best.  Besides, she is the one who told me that everything was just fine with my colonoscopy, and that these problems I was having were all in my head, when it turns out I have Celiac Disease...a problem she never even tested for.

I asked around and found a new doctor, an actual doctor-type doctor, one who is treating me with the respect I deserve and who is hearing me instead of turning a deaf ear.  She has listened to me, taken me seriously, realized my symptoms were real, and ordered the appropriate tests.  Not only has she diagnosed me with Celiac Disease (confirmed by bloodwork), but she also ordered a sleep study to be done and it turns out I need to be on a CPAP machine (more on that later).

After switching over to a gluten-free diet, I can say that while I don't feel 100% better, I do feel more like a human being.  My Imodium intake has slowed; I'm trying to wean myself off of them.  The gas and bloating has practically stopped and I no longer look like I am pregnant.  I'm still overweight, but at my last doctor's visit they told me I had lost five pounds, which makes about twenty pounds altogether.  All in all, I feel better and look better and I know this is the diagnosis I've been waiting for.  And, as it turns out, some of the things I was doing on the Eating For IBS plan were totally counter-productive to what I needed to be doing.  Again, they can work if you're suffering with IBS, but they aren't exactly compatible with Celiac Disease.

I have big ideas for this blog, and I hope to share with you those ideas soon.  In the meantime, just know this...

You are not alone, it is not in your head, and your problems are real.  You deserve to be treated with respect, and you deserve to treat yourself with respect.  It's time to take your life back.  Come with me!