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!

so, more about the colonoscopy.

I promised to tell more about the colonoscopy. It really wasn't as bad as I thought it would be, truth be told. But the prep...woosh, that was a different story!

The day before I was to have the procedure, I wasn't supposed to have any sort of solid food; the only things I could have was liquids or food like Jell-O, chicken broth, water, juice, stuff like that. Nothing red or purple, which was okay because I love both lemon and lime Jell-O. I also had to take laxatives because they needed my colon cleaned out. They didn't like my idea very much, which was to get a big bucket of KFC Extra Crispy and scarf it down. I don't know why they wouldn't go for that; it's always worked for me before!

At 10 AM and 2 PM, I had to take some Dulcolax (I honestly have never had to take a laxative in the whole of my life), and at 5 PM I had to down a bottle of sodium citrate.

Now, for those of you who have never had sodium citrate, let me describe it for you. It's a lot like drinking baking soda which has been dissolved in paint thinner and thickened up with some corn syrup with a splash of lemon-lime soda for flavor. Tasty concoction, and you have to ingest it all.

All.

The only way I could get it down was to take a swig, followed by a HUGE swallow of water. Then more water. Then another swig, followed closely by more water. Took me almost an hour, with my husband laughing at me the whole time. Oh, revenge is a dish best served cold, my love.

Now, the effect of the laxatives and sodium citrate and water was that my bowels decided to evacuate everything that was in them and some things that they scavenged from elsewhere just to not waste the cramps. Dave Barry described it best, by saying that, "...[Y]our bowels travel into the future and start eliminating food that you have not even eaten yet." Yep, pretty much.

Here's the deal: My house has two bathrooms, one upstairs and one downstairs. However, for all intents and purposes, we might as well just say that we have one and a half bathrooms, because while the upstairs toilet works the upstairs shower and bath are non-functional. See, they leak through the floor, and getting to the pipes to fix this problem (according to aforementioned husband) will involve removing three-quarters of the upstairs and up to half of the downstairs. So, with husband and two teenagers in the house (both of whom were involved in track at the time), obviously at some point they were going to need in the bathroom to shower and clean up. But what would happen to me if I desperately needed in there? This was not the kind of thing where you could just clench your cheeks together and grit your teeth and cross your legs and everything would hold inside until you managed to stumble to a potty. Nope...once you felt the rumblings, you ran straight for the bathroom. Fortunately, they took really fast showers. It was a lot like time trials...I ran out and said, "Okay...NOW!" and they knew they had about seven minutes until the next cramp hit and I was throwing them out of there naked if I had to.

I felt like I had set up camp in there. I had a book, and my cellphone (for FreeCell, understand...it kinda kills the conversation to call a friend and they ask, "So, whatcha doing?" and you answer, "Oh, just sitting here on the toilet. Don't mind those noises in the background, it's nothing.") and various other things to do.

I finally got to the point where my skin was so raw that I was in tears every time I felt the urge to go. I had to resort to diaper rash cream, even though I had taken the precaution of using moist wipes from the beginning. I would like to say that it did clear up after a couple of days.

This continued pretty much all day and into the night. I did manage to get some sleep in spite of it all.

By morning, I was fairly empty, but I still rumblings and mucousy stuff coming out. Not fun, but I had to get ready and go the hospital. Here's a clue...wear your comfy clothes. I wore a pair of black yoga pants (black was chosen on purpose...no pastels today), a loose-fitting t-shirt, and my crocs. Makeup was kept to a bare minimum, but I just couldn't face a colonoscopy without some paint. Listen, lip gloss is a very important part of the process, and don't let anybody tell you different.

The hospital part was pretty uneventful, in and of itself, although I did meet a former schoolmate beforehand who was now a nurse and I saw a lady that I go to church with when I was on my way in. Didn't know they worked there. Oh joy. Always fun to run into people in situations like that.

I had changed into a gown and sat on a bed for quite a while waiting, but it finally came to be my turn. While I was sitting there, I managed to think of all the things I was afraid of...the main thing was pooping on the doctor. I was terrified that they would stick that tube up my behind and I'd poop everywhere. Or that I would fart continuously. That has been a big fear of mine since high school and a rather unfortunate incident. Yep, pooping and farting, those were my fears. I'm pretty shallow that way.

The nice doctor and nurses were waiting for me. The doctor asked me why I was there, and I said, "I have no idea." That got a laugh. I had to lay on my left side, draw up my knees, and get comfy. At that point, I told the doctor that since he knew my dad, he needed to be nice to me. (Which was true...he did my dad's colonoscopy. We like to keep it all in the family. Makes for good Thanksgiving table conversation.) The anesthesiologist put a needle in my arm, asked me a question which I have since forgotten, and next thing I knew I was waking up in recovery. I did have a weird dream while I was under, but I've forgotten that too.

I lay there a while watching them bring in other people from their surgeries, feeling much better about life in general, and then they let me get dressed and leave. I then went home and slept the rest of the afternoon. If I pooped and farted during the exam, I had no clue about it, and nobody mentioned it.

At some point they did tell my husband that they found no problems with my colon, and later we found out that samples taken showed no problems. That's both good and bad...I don't have major problems, but I also don't have a specific thing I can point to and say, "Okay, THAT'S what is wrong with me."

All that to say this: The prep was bad, I'm not gonna lie. But it wasn't as bad as I thought it would be...I honestly thought it would be worse. The most stressful part was the trip to the hospital and the waiting around before the procedure. I slept through the whole thing and I don't remember any of it. So, if you're putting it off because you're scared or something...don't. Truly, it wasn't earth-shatteringly bad, and I would tell you if it was.

So, there you have it...a colonoscopy from beginning to end, so to speak. Next time, I'll tell you about when I pooped my pants at Walmart! You'll definitely want to stay tuned!