Fun With Celiac Disease

one year today.

2012-07-14T17:54:00.001-04:00

One year ago today (July 14, 2011) I received my diagnosis of Celiac Disease, after years of suffering and embarrassment and wrong diagnoses. While it has been a big adjustment in many ways, it has also been a blessing in disguise. I will elaborate in future posts (I'm typing this on my phone and it isn't easy, lol!).

I know I've neglected this blog lately, and I am aiming to change that. I was having a hard time adjusting both physically and mentally to having Celiac Disease, and I guess I just needed some time to get my head on straight. But now...let's tackle this thing together!

gluten-free expo product reviews.

2011-10-22T00:18:00.005-04:00

You may remember, a few posts ago, when I talked about going to the Gluten Free Living Now EXPO in Carmel, Indiana. I was able to sample many delicious products and I came home with a boatload of delicious samples and tasty items. I'd like to take a few minutes and give you my reviews of what I consider to be the best products that were offered that day.

I do want to make plain that these companies did not ask me to review their products, and most of them had no idea I even wrote a blog (I did tell a couple). Therefore, they did not influence me in any way; I'm simply picking the items and products I personally liked. So, here you go, in no particular order:

Harvest Cafe Coffee Roasters, LLC

Yes, I know that coffee is normally gluten-free to start with. And, I also know that those of us with Celiac Disease probably shouldn't be drinking much coffee anyway, due to the tendency of the caffeine to speed up the digestive system. I've yet to really cut out coffee, but I have cut way back on my intake.

However, they sell more than just coffee; they have hot chocolate, flavored syrups, flavored teas, herbal tea, and decaf coffee, among other things. They roast the coffee on site in small batches to bring out the best flavor. You can go by the roastery and sample a cup for yourself; I tried the Black Magic blend at the Expo and it was to die for. They also have a full store on their website. Give them a call or stop in!

Deborah Kaye's Cookies

Okay...first of all, these are the biggest gluten-free cookies I have seen yet. Most gluten-free cookies are small, almost bite-sized, or just about the size of a vanilla wafer. These are huge; the cookie I have here is easily the size of a saucer, and the website says they are four to five inches in circumference.

The flavor I have is Oatmeal Chocolate Pecan, and let me tell you, it is absolutely delicious. It's not crunchy, it's not chewy; it's a nice mixture of the two, being a little crunchy around the edges and a little chewy in the middle. You could eat it all in one sitting, and it would be a great dessert; although it does say on the back that a serving is a half of a cookie, so you might want to take that into consideration.

At the Expo, I spoke with Deborah Kaye's husband at the booth, and he said that people sometimes crumbled the cookie onto some yogurt for a breakfast treat (which sounds like a good idea; the cookie is certainly more substantial than most gluten-free granolas I've tried).

The price is a little expensive; $24 for a box of twelve cookies, but you're getting twenty-four servings so it works out to a dollar a serving. If you eat a half a cookie a day, that's twenty-four days of delicious treats. You can buy online or purchase them at selected retailers. The cookies are made in a dedicated gluten-free kitchen using gluten-free ingredients, so you can be assured of a safe, quality treat.

Allergy Free Foods

One of the biggest problems I've found in eating gluten-free is finding delicious "convenience"-type foods, stuff like chicken nuggets and strips, things that make you feel like you're eating junky food that you can indulge in on a Friday night with a good movie. Most of the food I've tried in this vein haven't been that tasty. That all changed when I sampled the chicken tenderloins from Allergy Free Foods. It was all I could do to just take one sample! Juicy, tender, crispy on the outside and yummy chicken breast on the inside...it tasted just like I was eating deliciously decadent full-gluten chicken strips. All I needed was some ranch dipping sauce and I was set. I think my teenage daughter might even eat these of her own free will. Best of all, the foods offered eliminate the top nine allergens, so if you have allergen issues other than Celiac Disease, you're probably covered by these products.

From what I can tell on the website, you can only order from them in bulk, but they do have a store locator. I would email them and ask about the stores in your area, since I was given a handout at the expo with store locations that are not on the map. I would think that kids and teenagers would love these, since they could eat foods like their friends eat. You could probably serve these to a group of kids and they would never know the difference, they are that good.

Isabella's Best Baked Goods

The cookies I've been able to find at my local stores have been pretty meh, at best. However, at the expo, I was able to find several cookie companies with absolutely delicious cookies. Isabella's Best was, well, one of the best. I sampled the Chocolate Chip Cookies and they were to die for! Moist and tasty with just the right amount of chocolate chips. It's hard to believe that they are free of gluten, wheat, dairy, eggs, peanuts, and tree nuts. If you have kids with serious food allergies, these cookies are for you!

They are sold mainly in the Central Indiana area, but they are also sold at Dollywood, which I thought was pretty cool; it's hard to find gluten-free snacks when you're out and about.

Endangered Species Chocolate

Sure, that chocolate bar you picked up at the checkout counter doesn't say it has any glutenous ingredients in it, but do you really know if it is truly gluten-free? Well, these chocolates are certified gluten-free by the Gluten Free Certification Organization; they are also organic, kosher, and many of the dark chocolates are vegan (however, the chocolates are made on equipment shared by milk, peanuts, tree nuts, and soy) and their cocoa is ethically traded. Plus, ten percent of their net profits are given to organizations that support species, habitat, and humanity.

Along with chocolate bars and bites, they offer things like chocolate towers, seasonal goodies, event favors, and fancy fruits. There's something for everyone!

My current favorites? Organic Dark Chocolate Cherry (which helps koalas) and Organic Smooth Milk Chocolate (which helps lions). I really want to try the All-Natural Dark Chocolate With Espresso Beans (which helps tigers). You can order from the website or there is a store locator link.

Maplegrove Gluten Free Foods: pastariso Instant Rice Mac & Cheese Meal

This company had several items for sale, but they had samples of this product and once I tried it, I just had to have some. I love macaroni and cheese, and the little instant cups of that blue-and-yellow brand were so handy to keep around for "those" days. I truly have missed instamac, and with this product I can enjoy it again!

I know; you've probably tried other gluten-free box-o-mac varieties and they've all fallen short in some way. Take it from me, this will far exceed your expectations. It tastes just like mac-n-cheese in a cup should taste like; no funky colors, no weird taste, no strange smells, just delicious taste. Kids will love this stuff! Add water, zap it in the microwave for a few minutes, stir, and enjoy! They have both white and brown rice varieties available; I tried both and they were both scrumptious. You won't be sorry!

Mim's Kitchen

I went to two days of the Expo, and both days I just had to visit this booth. One taste of these warm, delicious, fresh-from-the-oven cookies, and my mouth was in heaven. Seriously, if someone didn't tell you that these cookies were gluten-free, you would never know.

For one thing, these are not pre-made cookies, but rather pre-formed frozen cookie dough that you bake up in your own oven. This makes the cookies fresh and delicious every time. Another thing is that many gluten-free cookies are small and crunchy, but these are big and chewy. Seriously, these are the size of a regular Toll House cookie, and that's a plus in my book.

You can buy these cookies online, or on the website is a link where you can find a store in your area that carries them. You will not be sorry if you splurge on these tasty treats. They are about ten dollars for twelve cookies, but that works out to less than a buck a cookie so you're good. Have any kid you know taste-test them and they will gobble them up!

riceworks

Sometimes, you want something crunchy and chippy and that tastes like it isn't good for you at all. Enter riceworks...the snack that tastes decadent but that really isn't. They are made with brown rice; they are a little thicker than, say, a Dorito, but I kinda like that. It gives these chips a hearty snap that will satisfy any crunch craving. They also pair well with your favorite dip or salsa, and with several flavors to choose from you can find whatever it is your need needs.

I personally tried the Parmesan & Sundried Tomato, the Salsa Fresca, and the Tangy BBQ; all of them are delicious. The guy at the sample table told me that the Parmesan tasted like a Cool Ranch Dorito. Not quite, but it was totally yummy all the same. Best of all, these are widely available and you can probably find them at your local grocery or big box store, which is great for those must-snack-now or emergency chip-n-dip tray moments.

Food Should Taste Good

I couldn't agree more. :)

Seriously, let's face it. There are many gluten-free foods which simply do not taste good. I have spit out some supposedly delicious gluten-free good, and trust me...I do not spit out food. But when you see a bag that literally spells out what everyone is thinking, you just gotta try it.

These foods do not disappoint. I received a few samples of the Sweet Potato Tortilla Chips and the Multigrain Tortilla Chips, and both of them held up well to the crunch test. Not only that, but they taste wonderful, and many varieties are available at your local grocery store. You could pair a variety of these on a tray with a variety of the riceworks Tortilla Chips, add a couple of Mexican-inspired dips and/or spreads, and you've got a great appetizer tray to sit out at your next gathering or to take to a party. Nobody will know these are gluten-free if you don't tell them! (So don't tell them!)

Okay, so in looking over this list, I realize that most of these selections are cookies or snack foods. There's a reason for that.

Think a minute; most foods, in their natural state, are gluten-free. Throwing together a gluten-free dinner really isn't that hard, if you think about it. A chicken breast, pork chop, steak, fresh fish filet...all gluten free. Throw some fresh veggies on the plate as a side; broccoli, green beans, a tasty salad, zucchini, asparagus, red or yellow or green or orange peppers...all gluten free. Even potatoes, sweet potatoes, rice, any sort of beans, are all gluten free. Fruit is gluten free, too, for a sweet dessert. Butter and margarine and salt and pepper don't have gluten. Wash it all down with some milk, iced tea, or even water, and of course they are all free of gluten as well. As long as you prepare your food in a gluten-free manner, using dedicated utensils and pots and pans and a clean work surface, you're going to be safe.

The problem comes in when you want to add other foods to your diet; foods like cookies, chips, crackers, pasta, canned food, processed food, or any food with a breading. Yes, eating fresh fruits and veggies and lean, free-range meats are the best thing for you, there's no argument there. However, sometimes you just gotta have something that reminds you of fast food, junk food, or just plain not-quite-good-for-you food. When everyone else is chowing down on fried chicken strips, the last thing you want to have is a plain piece of chicken. It's probably better for you, but come on. You know what I mean.

I personally think it's okay to splurge every now and then, as long as it's a gluten-free splurge, and as long as it isn't every day. If you don't give in to your cravings every so often, you're much more likely to binge on food that you shouldn't be eating at all, quite possibly including glutenous foods. You do have to watch preparation, and read labels very carefully even on foods you know are safe to start with, but sometimes you simply have to find gluten-free substitutes to your favorite glutenous foods.

And, honestly, they didn't have any sort of fresh fruits or veggies offered at the Expo. :)

So, there you have it. If you do visit any of these retailers in any form, please tell them you read their review on Fun With Celiac Disease. Just remember...we're all in this together!

a special shoutout to some special people.

2011-10-10T23:57:00.001-04:00

As mentioned in an earlier post, I attended two days of the Gluten Free Living Now Expo in Carmel, Indiana. I'll blog more about it later (and on some of the products which really stood out to me), but I'd like to take this opportunity to send a special thank you to the wonderful folks at Kinnikinnick foods, the people of Gluten Free Living Now, and the staff of The Fountains Banquet & Conference Center in Carmel, Indiana, where the Expo was held.

I had to drive over an hour just to get to the Expo, and by the time I got going and found the place, it was about 4:30 in the afternoon. Since I knew they were closing down in a half hour, I tried to look around as much as possible before I had to leave. I knew I would be coming back the next day, but I didn't want my trip Friday to be for nothing!

I had collected quite a few samples and a free reusable grocery bag by five o'clock, and I was ready to go. Now, when I know I am going to be walking around a lot, I don't like to carry a heavy purse; I will bring along a smaller bag and put just the essentials in it, such as my wallet and the key to my van. I pulled out the key to my van, and was holding it in my hand (along with my phone and my bag and the shopping bag full of samples) when I suddenly remembered a photo I wanted to take to jog my memory. I walked back, took the photo (of the Harvest Cafe Coffee Roasters booth; their coffee is great, buy some!) and walked just out the door to the outside. It was at this point that I made a discovery which no person likes to make...I didn't have my key.

I didn't panic at first. I knew where I had been, and I knew that the key had to be in the conference center. It isn't a gigantic room, although it is a good size, and I figured that I would stumble onto it. It was on a bright yellow Happy Bunny key chain, so it should have been fairly easy to spot. I asked the people in the lobby who were in charge of the Expo, I asked at the Lost and Found of the Fountains, I emptied my shopping bag, and no key.

I won't bore you with the details, but I will say that we searched for over an hour for that key. I could have called my husband to come and get me, but it wouldn't have solved the problem of my van being locked up and my purse being in there, since we only have the one key for the van. You see, we bought that van used, and it just came with the one key; since I am the only one who drives it, and since the automatic key locker thingie was lost to the previous owner, I just never bothered to get another key made. So while he could come get me, the van would still be locked. It would take him a long time to get there, I had my doubts that he would find it (after all, I got lost on my way), and let's face it...I just didn't want to call him.

Here's where the wonderful staff of the conference center, the people from Gluten Free Living Now, and the ladies at Kinnikinnick come in. They all took their personal time to help me look for my key, and they were right there along with me searching. Everybody, including me, was praying that I would find my key. I was about five minutes from giving in and calling my husband when all of a sudden I hear, "Hey, we found the key!" One of the catering staff had found it either by or in one of the large trash cans in the main room of the Expo. I am not going to lie...I was so happy I cried. I hugged his neck and just sobbed. I had kept it together fairly well up to that point, but I was just so relieved! I am ashamed to say, however, that I didn't get his name. All I know is that he was a tall, dark-haired, younger Hispanic fellow wearing a blue catering jacket.

Yes, I did go back the next day. I got lots more samples (I will be blogging about the best ones soon), and when I visited the Kinnikinnick table, we all had a nice laugh at my key which was now on a carabiner ring attached to my purse. And, since they were closing up, they gave me an entire tray of their JB Brownie Squares and their Ginger Snap Cookies! Let me tell you, they were delicious!

So I had an interesting weekend; but I also learned a lot and made a bunch of new friends. God bless their little hearts!

gluten free living now expo in carmel, indiana; october 7-9, 2011.

2011-10-07T00:39:00.000-04:00

I'd like to invite everyone to the Gluten Free Living Now Expo in Carmel, Indiana, on October 7-9, 2011. Yes, I know that's today; sorry about the late notification!

They will be having booths, samples, lots of information, test items, and a chance to interact with other people who live with Celiac Disease. There will be some free informational sessions as well as cooking demonstrations. They will also have some paid lectures and speakers, if that is something you are interested in.

General admission to the Expo is free, but they are requesting a $2 donation to help fund a camp for children with Celiac Disease, and also for the Food For Celiacs program. If you donate, you'll also be entered in the door prize drawings.

It will be held at The Fountains in Carmel, and the times are 10AM-5PM each day. If you're interested, there's a map here.

I am really looking forward to this event. Hope to see you there! :)

free celiac screening in the chicago area.

2011-10-05T23:41:00.000-04:00

For those of you in and around the Chicago area, they are having a Free Celiac Disease Screening put on by the University of Chicago Celiac Disease Center.

You must be eating gluten for at least twelve weeks, and the test is the tTg-IgA (anti-tissue transglutaminase test). This is the most sensitive Celiac screening available.

The test is Saturday, October 15, 2011. This is a great opportunity for those of you who's insurance is balking at paying for a Celiac screen, or for those of you who don't have insurance at all. Pre-registration is required because NO walk-ins will be accepted.

If you're in the area, take advantage of this wonderful, free opportunity!

a quick, easy, gluten-free dinner: teriyaki chicken and rice with broccoli.

2011-09-29T03:04:00.004-04:00

It isn't easy coming up with a variety of tasty, delicious dinners that are also gluten-free. However, there is one company who is making it a little easier...La Choy. Yes, I know that Asian-style sauces often contain soy sauce, which usually has wheat as one of its main ingredients, and therefore is persona non grata at the Celiac's table. However, La Choy makes some delicious sauces in their Stir-Fry Sauce and Marinade line that make eating gluten-free delicious and fun, because they don't contain wheat!

Here's a dinner that's sure to please your taste buds and your gluten-sensitive digestion:

First, get some boneless chicken breast tenderloins; I'd say at least three tenderloins for each family member. Put them in a large freezer baggie and pour in some of the La Choy Stir-Fry Sauce and Marinade in the flavor of your choice; it comes in Original, Orange Ginger, and Teriyaki (the photo is Teriyaki, and I've also tried the Orange Ginger; both are delicious!). If you want, add some chunk pineapple.

Shake well to cover everything, and then put them on an aluminum-foil lined cookie sheet that has been sprayed with a little gluten-free cooking spray (the foil keeps the cookie sheet clean and free of any gluten cross-contamination, as long as you use it for each meal prepared in it). Bake them in the oven at 375°F until they register 165°F with a meat thermometer (about 30 minutes or so).

In the meantime, whip up some white rice in a rice cooker or a non-contaminated saucepot. Keep warm.

About five minutes before the chicken and rice are done, grab a microwave steam packet of broccoli florets out of the freezer and zap them in the microwave. Birds Eye Steamfresh Broccoli Florets or Green Giant Valley Fresh Steamers are both a good choice for fast, easy, gluten-free veggies.

Arrange some of the rice on the plate. Pour the chicken, pineapple, and sauce on top of the rice. You can either add the broccoli as a side, or you can put it on top of the rice as well and cover with the chicken and sauce. Add a little more sauce to the broccoli if you want.

Boom baby! You've got a quick and easy meal that is light on calories and no gluten anywhere. The white rice is good for sensitive digestive systems, you've got some fruits and veggies from the broccoli and pineapple, the boneless and skinless chicken breast is a delicious lean meat choice, and the sauce only has 25 calories a tablespoon! Best of all, you don't have to special order the sauce or drive to a special organic or health food store to buy it; it's at your local grocery. If you're like me, and you live at least an hour or more from any sort of specialty store, that is a big plus.

Have fun!

communion, celiac disease, and you.

2011-09-27T03:36:00.005-04:00

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!

The last time we had communion, I found out the previous Sunday, but Pastor forgot to tell me this time. In his defense, I haven't been diagnosed for long, I don't live at his house, and I'm sure he had many other things on his mind besides my gluten intolerance! So I asked him; were the juice cups filled before or after he tore up the bread into little pieces? He told me that the bread was done at his house...then I could see him thinking...and he didn't know if the cups were contaminated or not. So, he said that if I wanted to fill my own cup, that was fine.

Fortunately, there is a Walmart right up the street from the church, and they happen to sell a few gluten-free products. I dashed over there when music practice was over (I don't attend a Sunday School class and church service doesn't start until 10:30, so I had time). I had been looking for an opportunity to try the Glutino Original Crackers, so this gave me a good excuse. They are kinda like a Ritz, only not quite as flaky and less salty and definitely less tasty. I do wish they were less than five bucks for a 4.4-ounce box, though; a one-pound box of Ritz Crackers is about two dollars. I grabbed the crackers and some grape juice and went back to the church, where I made sure I had my own communion cup already filled and sitting on the piano where I could reach it. I also talked to the ushers who serve the musicians and told them I was set. I had talked to them on the previous occasion about Celiac Disease, so they knew why I was being so particular.

I will give you this piece of advice; if you do decide to use the Glutino crackers, you might try using only a half or a quarter of a cracker. I used a whole one, and I was seriously chewing and chewing and chewing for the entire prayer! Luckily, Pastor can be eloquent, so I had a little time to suck on the cracker a bit and get it all good and soggy before it was time to drink the little cup of juice. I also keep a small bottle of water by my chair, and while everyone was praying I took a little sip to help wash it all down.

Now, this was just my experience; I have talked to my pastor and his wife and told them about my special dietary needs, so they are fully aware of what is going on. Fortunately for me, my pastor is understanding. Also, since I am part of the musicians, I'm often involved in some behind-the-scenes work in the regular Sunday services that allows me to do things like prepare my own juice cup.

For the Protestant layperson, I would suggest that you first go to your minister and talk to them about what is going on. Be prepared to explain what Celiac Disease is and any special safeguards you use at home to ensure that there is no gluten cross-contamination. Ask what they might suggest to ensure that you do not become contaminated by the bread or wafer and cups used in Communion. If possible, talk to the ushers who serve you, and maybe to whomever is in charge of preparing Communion. Tell them of your special dietary needs and maybe they can help; be prepared to make the suggestion that they might wear different gloves for the bread and the juice prep, or at least that they wash their hands between the steps to avoid cross-contamination. It will, however, take a certain amount of trust on your part that they will remember to do it.

You might be able to bring in your own bread or wafer or cracker and possibly even your own juice. Ask your pastor if you can take home some of the little communion cups so you can fill them out of your own juice. Most pews have little holes to put your empty cups in, so maybe you could sit your filled cup there during the service until it is time. You might also look into pre-filled communion cups; however, the only ones I have found have a wafer with them, and they are not gluten-free. There are a few companies that make gluten-free communion wafers for Protestant denominations, and maybe you can bring those with you as a substitute.

For Catholics...from what I have been able to find, host wafers that are "quibus glutinum ablatum est", or "that are gluten-free", are not allowed; however, "low-gluten" hosts are allowed as long as there is enough gluten present to qualify the host as bread:

I. Concerning permission to use low-gluten altar breads:

A. This may be granted by Ordinaries to priests and lay persons affected by celiac disease, after presentation of a medical certificate.

Conditions for the validity of the matter:
1) Special hosts quibus glutinum ablatum est are invalid matter for the celebration of the Eucharist;

2) Low-gluten hosts are valid matter, provided that they contain the amount of gluten sufficient to obtain the confection of bread, that there is no addition of foreign materials, and that the procedure for making such hosts is not such as to alter the nature of the substance of the bread.

You could try talking to your minister or priest or whoever it is in charge of administering you Communion; some Catholics are allowed to omit the wafer. Also, there is an order of nuns who make a very low-gluten wafer; it is tested as containing 0.01% gluten, which is extremely low. You might check into whether your priest will allow this.

I don't claim to be a learned theologian; I honestly don't care if you're Christian, pagan, atheist, or whatever. Celiac Disease hurts, no matter who you are. After all, we're all in this together.

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

2011-09-15T01:31:00.003-04:00

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!

2011-09-13T21:54:00.003-04:00

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.

First, you get up…late, as usual, because you’re dealing with fatigue from being gluten-bombed the day before. You took precautions, but that crumb of bread must have slipped into your food when you didn’t notice, so you make a mental note to clean the counter better when you get home. Going into the bathroom, you notice the pile of cosmetics, skin care items, and toiletries in the trash can; those were the ones contaminated with wheat in their ingredients. Luckily, you managed to salvage a couple of items to make yourself look presentable. Who knew you would have to check your shampoo and mousse and mascara for wheat products?

You manage to get ready and you run out the door, looking at what you can grab for breakfast along the way. But wait…can’t eat those Pop-Tarts, because they are made with flour. Can’t have a granola bar, because the oats it is made out of could be contaminated with wheat either in pre-processing, processing, or packaging. Same for the breakfast bar and quickie breakfast drink. Toast is totally out of the question; whole wheat bread. Finally, you grab the last banana, hoping that nobody touched it with gluteny hands and contaminated it.

Yay, it’s lunchtime! Your friends want to head to a restaurant, and you’re more than happy to go along with them, only to find out that they don’t have a gluten-free menu; what’s more, they don’t have any dedicated prep areas in the kitchen that they could use specifically for gluten-free items. You end up sipping a drink while watching your friends eat their food and you hope against hope that the glass was filled by someone wearing clean gloves; after all, once someone touches bread, and then touches your glass, you’re got a problem. Luckily, you remember that there’s a gluten-free snack bar in your glove compartment, and you eat it like it’s the last thing between you and starving to death.

By the time you get off work, you’re ravenous, so you head to the grocery store. Now, you know you’ll have to clear most of the evening for this chore, because when you go to the store you know you’ll have to read every label on everything you pick up, including the labels on any personal care items such as shampoo, mousse, lotion, sanitizer, or cosmetics. You’ll also have to check any cleaners used in the house or detergents for your clothing. Anything that you will be wearing on your skin or your body must be gluten-free. After all, think about it; how many times a day you touch your skin, then touch your face or mouth in some way?

You work your way slowly through the grocery department, reading every label for trigger words such as “wheat”, “-dextrin”, or any sign that the product was made in a factory or manufactured on machines that could have come into contact with wheat. Every label, no matter how small, must be read. Even items you might not think would contain it, like coffee creamer or chicken broth or spaghetti sauce or corn starch or baking soda, must be scrutinized. Gluten is sneaky and it hides everywhere. You found this out when you bought a bag of dry bean soup mix, only to get sick from it; once you got onto the manufacturer’s website, you found out it was packaged on machines that also handle pasta, a fact NOT mentioned on the packaging.

Finally, finally, you finish your shopping and check out. You hope that you have enough to pay for it, since a loaf of gluten-free bread is seven dollars and a small bag of gluten-free flour is five dollars. You mentally kick yourself for paying seven dollars for bread, since you know it will taste like a cardboard box with crust, but it’s the only kind of bread you can eat. You’ve thought about making your own bread, and mentally make a shopping list of items you’ll need that aren’t contaminated from previous flour breads; new bread machine or new bread tins, for starters, and you wonder if it would be weird to ask for those things for Christmas presents.

By this point, you’re too tired to go home and cook, so you decide to grab a bite to eat. However, you soon realize that fast food is not for you, as your requests that the grill people change their gloves and use freshly cleaned utensils creates the very opposite of “fast food”. It gums up the line and creates tension in the grill crew. Besides, most fast foods are sandwiches or breaded items, and while you could have a salad you’re just not certain that a fast food restaurant kitchen is the cleanest environment ever for protecting against gluten on your lettuce or grilled chicken strips.

Deciding on a sit-down restaurant, you nicely tell the server that you’ll need your meal prepared in a gluten-free manner, only to receive a blank stare and a confession that “I don’t even know what that means*.” By the time you explain, request that the people making your food change their gloves and use freshly washed utensils and clean that part of the grill and use a dedicated fryer for any fried foods and ask for a clean glass, your server is looking at you like you've lost your mind. You could get lucky and score a very helpful server who is attentive and considerate of your special dietary needs, but let’s face it…it’s a toss-up as to which you’ll get. You eat, hoping your food was prepared as you requested, and then leave a hefty tip for being such a demanding customer.

You go home and put away your special gluten-free food in the special gluten-free designated areas that have been specially cleaned and set aside for your special gluten-free food only. They go along with the special gluten-free cookware and special gluten-free cooking utensils, since gluten can leach into non-stick cookware and plastic spoons and turners. You even have a special gluten-free toaster. Anything that goes into the fridge gets your name written on it so that nobody will contaminate it with their fingers or forks. Even the peanut butter gets labeled so that nobody sticks their gluteny knife in it.

For a bedtime snack, you eat a gluten-free cookie from a bag that cost you five dollars for thirteen cookies and that tastes like a Styrofoam disk. Then you go to bed, praying that no gluten sneaked into your mouth this day, and you prepare for the next day. As you go to sleep, you mentally say a thankful prayer that you at least know what is wrong with you and that it is something you can control.

*akshully happened to me

so...have you ever received this reaction?

2011-09-10T03:41:00.000-04:00

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.

2011-09-02T01:24:00.001-04:00

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.

Yet another nurse came and took me to the exam room, where the gastroenterologist and anesthesiologist were waiting. We made some small talk, and then I was asked to lay on a wheeled cart and to turn on my left side with my knees drawn up, just like when I had my colonoscopy. I was waiting for the anesthesia to take effect; I remember during the colonoscopy that the anesthesiologist told me when he was giving me the sedation so I knew when I was going under. That didn't happen this time. I do remember a slight feeling of my head swimming, but other than that I didn't feel any different. The nurse told me to open my mouth, and they put a sort of hollow piece of plastic in there, held in place by my teeth and lips. They asked me to bite down on it, which I found weird.

Then, before I knew it, the procedure started. They asked me to relax and then they began to thread the scope down my throat. I started to fight it and they again told me to relax. Now, all this time I am thinking: "When do I go to sleep???"

Let me again stop and explain: The day before, when I talked to the doctor, I asked her a specific question. The problem is, I can't remember which specific question I asked; "Will I be sedated?" or "Will I be asleep?" Either way, she assured me the answer was yes. Also, when I filled out and signed some papers the previous day, the nurse asked me to sign a specific place "so we won't have to wake you up to get your consent," the implication being that I would be asleep. I was fully expecting to be asleep. I would not have consented to being awake. I was slightly sedated, but not much; not nearly enough, as it turns out.

So they are threading the scope and I am starting now to freak out. I realized that I was not going to be asleep for this procedure. I'm not going to sugarcoat it; it hurt. It hurt, I was uncomfortable, my anxiety level was extremely high, and I was not a happy person. The nurse and anesthesiologist had to tell me again and again to just relax, be still, it's okay, all that stuff that makes me want to freak. I was hurting and about two seconds away from gagging, vomiting, and jumping off that table and running into a dark closet. I was getting very close to a full-blown panic attack (which I've had). At that time, mercifully, it was over. They wheeled me out of the room and into a recovery room. I was slightly groggy, but still very coherent. I never went to sleep, although I did close my eyes a few times.

While I was resting, I got a look at my blood pressure. For an old fat girl, I have really good BP readings; often they are around 120/65. However, after this procedure, my readings hovered around the 158/92 mark. That is very abnormal for me. I know my BP readings go up when I am having a panic attack, and that is exactly what happened.

I sat on the cart for a bit, they brought my shirt to me, I got dressed, and my husband (you must have a driver) and I left.

I hadn't eaten since midnight the night before, and it was now after noon, so we went to Panera and got some food. I had a lovely salad with chicken and poppyseed dressing and strawberries and blueberries and pineapple, and I made sure everyone changed their gloves and made my salad in a gluten-free manner. At that point my husband decided he needed coffee, so we went to Starbucks (yes, I know Panera has coffee, but that's what he wanted). He had worked the night before and was starting to feel sleepy. I felt awake and not drowsy at all, unlike when I had the colonoscopy and I went home and slept the rest of the day. In fact, I drove the rest of the way home, about forty minutes. I know you're not supposed to, but my hubby was sleepier than I was. I was fully coherent and alert with no signs of the sedation at all.

I have yet to get my results; when I do, I'll let you know.

Let me stress again that these are my experiences; not everybody has an experience like this one. I would not let this deter you from getting an upper endoscopy. They are the one sure way to see what damage has been done by the Celiac Disease. And honestly, if I had to do it again, I would, mainly because I know that I really don't have any other choice; but I would make sure I was much more sedated if not totally asleep. My stress and anxiety levels were just way too high and I will definitely make that very clear to the doctor next time. If you have good communication with your gastroenterologist, you should be able to make your wishes very plainly known.

One other thing; I received a paper from the medical center asking me to review and critique my experience. Let me just say that I filled the back side of the paper.

Again...if you need an upper endoscopy, go get it done. But make your wishes and fears plain and clear to everyone involved.

In related news, I went and got my CPAP machine today. Let me tell you, the fun never stops at my house!

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

2011-08-31T02:46:00.000-04:00

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.

2011-08-24T00:40:00.003-04:00

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.

What I tend to forget is that I live somewhere that doesn't have a large selection when it comes to anything but the basics. If I want to buy anything that is off the grid, I have to either drive an hour to a decent store or I have to order it online...neither of which is an option when you want to make cornbread right that minute. I'm too used to just popping down to the local grocery store and picking up the cheapest store brand cornmeal they got and going home and just whipping up some cornbread. Nope...not any more.

I think you can guess by now that my search was, at the least, frustrating. There are three grocery stores in my town (well, the town next to my town, but since it's five miles away and I'm there every day I consider it "my town" too) and none of them really have a big selection of specialty foods. And let's face it...most foods that are certified "gluten-free" are EXPENSIVE. A bag of gluten-free bread mix is six bucks??? And it makes ONE loaf of bread??? Anyway...I didn't find a single bag of certified gluten-free cornmeal. I did find a couple of bags of cornbread mix that were marked gluten free, but come on. Six dollars. And they make ONE batch of cornbread each.

I happened to have my phone with me and I did a little research right in the middle of the aisle. I found a cornmeal, Hodgson Mill, that didn't say it was made in a gluten-free facility on the package, but from what I've read on teh interwebs they clean the machines thoroughly when they switch from grinding wheat to grinding corn. So I grabbed some, hoping against hope that it would be okay.

I made the cornbread, and it was pretty good. I had some with my ham and soup beans.

However, the next day...I got glutenbombed. Oh my goodness. I was so sick. It had to be the cornmeal, right? After all, beans do not have gluten in them, right? So, I marched back to the store and, after wandering around a bit with my phone, I found Maseca masa harina. People have said it is safe, the bag says the product is naturally gluten-free (yeah, I know that can be misleading), and apparently the facility where it is made only makes corn products, so there's no cross-contamination. I brought that home and attempted to modify my tried and true cornbread recipe using it and my gluten-free flour from Glutino. Needless to say...it sucked. This is not the fault of the masa harina or the Glutino flour; the recipe just didn't work. Wrong product for cornbread. I'll keep it, though, because I'm sure I can find a use for it.

So, in the process of having a pity party and doing some research for this article, I had to look up the Hurst Beans site for the 15 Bean Soup link. And guess what I found:

Q:
I have Celiac Disease and my doctor says I cannot eat anything containing wheat/gluten...
A:
Maltodextrin is a hydrolyzed starch sourced primarily from corn. Flavor companies use acid or enzymes to modify the starch into simple sugars called maltos and dextrins. Varying degrees of sweetness can be achieved this way. Corn is in fact a grain. If corn is not of concern, then all of our seasonings except our Cajun 15 Bean Soup seasoning should be safe. If any of our seasonings are of concern, you may simply omit the packet and use your favorite spices.
We have recently removed barley from our 15 Bean Soup products. Currently none of our products contain barley. However we do package Barley and a pasta product on the same machinery, so we cannot guarantee that the product is 100% gluten. [I think they meant "100% gluten-free".] Please send an e-mail to info@nkhurst.com if you have additional questions.

So...it is possible that it wasn't the cornmeal after all, but the bean soup, that glutenbombed me. The wording above is kinda weird; it doesn't explain a lot and it is rather confusing. Therefore, I plan on definitely staying far away from the Hurst Beans product line. Some people might be able to tolerate it, but you might not, and I'm not taking any chances. I also shot them a message via their website telling them that this information would have been great to have on the packages.

On top of it all, I read today where some recommend that you replace any cookware that might be porous, cracked, scratched, or which otherwise might be contaminated with gluten. This includes cast iron skillets (my cornbread!!!), scratched non-stick pots, old plastic or wooden spoons that might have a crack or scratch...you get the idea. It was enough to make me cry right in the middle of the store.

The soup went back in the fridge; my husband will eat it and enjoy it. I had a baked potato.

Just take this away from this hugely wordy article...never take for granted that a product is gluten free. Always, always, always do your homework and never assume. After all, we all know what happens when you ass|u|me... [skip to about the 4:40 mark]

a thought about cross-contamination.

2011-08-21T01:16:00.001-04:00

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.

2011-08-18T02:00:00.001-04:00

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.

2010-08-14T02:20:00.000-04:00

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!

colonoscopy results.

2010-05-01T00:01:00.000-04:00

It took forever, but I finally got the final results from the colonoscopy I had earlier in the month. That day, they were able to tell me that everything looked good, no ulcers or anything, which ruled out things like Crohn's Disease and colitis. Today, though, I got a phone call from my doctor and she said that the samples that were taken also came back normal. So that's a good thing, right?

Well...I'm still having diarrhea, bloating, and gas. I'm still taking Imodium, along with Cipro and Dicyclomine for fluffy stools and attacks (as needed). I'm still afraid of an attack when I go out in public. I have a very fast transit time, which I'm sure doesn't help. I'm still trying to follow the Eating For IBS plan, and I do feel somewhat better when I follow it, but not as good as I'd like to feel.

The doctor who did the scope told my husband that the next step would be swallowing a little camera and having it take pictures of my insides. But if it doesn't find anything either, I'm afraid they'll just think it's all in my head. It's not, trust me.

Maybe food allergy testing is next. Maybe I have some sort of intolerance for certain foods.

I don't know, but if I'm going to continue with the diarrhea and gas and bloating, I may as well do it on a steak and loaded baked potato or a cheeseburger and fries instead of a plain chicken breast and white rice, right? (No worries, I'm not going to, but it sure sounds good.)

I'll talk more about the prep and actual procedure later. It was both good AND bad.

colonoscopy.

2010-04-13T17:57:00.000-04:00

Well now, that sounds like a whole lot of fun, doesn't it?

Yep, I've finally taken drastic steps in my search for a way to cope with my colon. After a day when all I did was run to the bathroom, even though I'd been following my IBS eating plan religiously, I'd reached the limit of my patience with this. I went to my nurse practitioner and she set up an appointment with me for a colonoscopy...which I've had to change about four times due to scheduling conflicts. There's no way I'm going to a high school track meet the day before the procedure!

Oh wait, you ask why? Well, before you get the scope roaming around your intestines, you get to have a day of spring cleaning. Yep, in my case that was 2 Dulcolax at 10 AM, 2 Dulcolax at 2 PM, and a 10-ounce bottle of magnesium citrate at 5 PM. And let me tell you...that magnesium citrate is one nasty beverage. I've drank the glucose stuff for tests while I was pregnant and it wasn't as nasty as this stuff. The only way I'm managing to get it down is to sip it and then follow with a big swig of water. I've only got a few more sips to go and I'll be done with the bottle. It tastes like lemon-flavored baking soda. Just read the ingredients...it contains sodium saccharin, which is guaranteed to irritate my digestion. Oh hooray.

I tried to tell the nurses that I could get a bucket of Lee's Famous Recipe (the crispy spicy kind) or KFC (extra crispy) and it would have the same colon-cleansing effect, but no go. That would have been MUCH more fun.

Then, from everything I've read on the interwebs, the fun REALLY begins. Apparently this stuff is Drano for your colon. Stuff will come out that you ate at your tenth birthday party. Oh hooray.

But...I'm going to suffer through it. I want to know what is going on. Depending on what they tell me, I may have to change the name of this blog to "Fun With IBD" or "Fun With Crohn's" or maybe just "Fun With Diarrhea". That should bring in some Google hits, huh? :)

Well, just finished my bottle of magnesium citrate. Let the party begin!