Gluten Free Musings

Something I am struggling with... the temptation to have "just a little" of my favorite things. Without checking to see if they are gluten free, or knowing that they are not.

Nacho cheese Doritos... a favorite for what seems like forever... are verboten now. Sigh. They have been one of my staple foods on my trips across the country for years.

And while it will be fairly easy to skip most of the traditional New Orleans foods due to my complete lack of interest in anything too spicy, missing out on the oyster loaf will hurt. And I refuse to completely skip the Cafe du Monde. I just simply refuse.

Doing something

Is way better than doing nothing. I've modified my other weblog to reflect my new "interest" and am going to be starting to plan the trip to California to get my daughter and bring her home for the summer.

While I will attempt to arrange my evening stops for areas where I can get a hot, gluten-free meal, I know that most of the time on the road I'm going to be improvising. That's where the supermarket info and brand info come in handy.

I have two flexible coolers that I will be taking with me, and I am *not* going to live on chips and snickers bars for two or more weeks. (Both ways)

Food memories

Just immersed myself in something I haven't eaten since I was three years old. My grandmother had some strawberry plants, and when we visited my sister and I would go into the back yard first thing in the morning, when there was still dew on the plants, and pick a bunch of them.

Grandma would bring us the sugar bowl, and we would dip the fresh strawberries into the sugar and wolf them down like the candy they were. What an amazing memory.

Sometimes gluten free brings me closer to the innocent little kid I once was. Tonight is one of those times.

Did this happen to anyone else when first diagnosed?

Or am I just strange? I appear to have lost my appetite. Almost completely, for the past four days.

Is it my brain telling me that since I can't eat half the things I have in my cupboards, I should just avoid eating at all? Or am I dealing with something else entirely?

I am making myself eat at least a little each day, although on Tuesday that consisted of a Snickers bar for lunch. Not really the best thing in the world, but at least it was something.

Outback Restaurant

Had lunch there yesterday with my sister. What a treat! Got a great bacon cheeseburger (bunless, of course) garlic mashed potatoes and a truly yummy chocolate thunder from down under for dessert!

The only problem I saw was that the gluten-free menu must be made for kids... there are no prices listed.

But I will be on the lookout for Outback during my travels this spring!!

Yeah, not so much.

Having a rough time this evening. Really just want to curl up in a corner for a few weeks. Maybe months.

I hate always being wrong. And I hate that I can't afford to do anything about it at the moment. Wish I could, but right now it just isn't in the cards.

Well, it *was* a good day.

Had a nice trip back up to my house with my sister today. We chatted about a bunch of things, not the least of which was celiac disease and my hope to remain relatively gluten free even when traveling.

I had taken my van down to that area for my niece and nephew to borrow. But he isn't willing to use it, so who knows what is going to happen now. I'm not going to worry about it tonight... plenty of time to worry about it tomorrow.

I can only control my own actions

I have reached a conclusion. It isn't going to be a popular one, but it is one I can live with. (And that's pretty important to me, even if it isn't earth-shattering in the grand scheme of things.)

When I'm shopping, and at home, I can control everything that goes into my food, and thus into my gut.

When I'm not, the best I can be is careful.

That's not to say I won't bring my own snacks, and dishes to potlucks and that sort of thing. But honestly, while I will forgo the french fries at Wendy's because they may (or may not) be fried in the same oil as the fish, I won't kill myself over the fact that someone who just made a sandwich is going to put my baked potato into its tray. As I said, it isn't the popular view... but it will fit in with my lifestyle and make things easier for everyone around me.

(And yes, I'm also one who objects to nut-free schools and classrooms. My problem is not yours. And your problem is not mine.)

Good customer service from CareerBuilder.com

Yes, I know this is a slightly off topic post, but probably not really all that off topic. I checked my account balance this morning, and it was negative.

So I immediately checked the transactions to see where I had gone wrong. I make mistakes, just like everyone else. Well, not this time.

This time there were charges on there from Fedex and Careerbuilder. Not too much from Fedex, although I did call them and request that they be removed. They were happy to help, and will be watching out for whoever has been using my card so they can take action against them.

Careerbuilder, on the other hand, took my information, told me they needed to investigate with the sales rep who had the account, and got my phone number in order to call me back. I made it clear that I was in a bit of a bind as a result of the charge, (It was over $500.00) so she agreed to put a rush on the process.

Less than an hour and a half later, she called back and agreed to remove the charge.

Still have to wait to get the new card and to make sure the charges are reversed, but I'm very happy with both companies responses to my difficulty.

But I use that card for everything, so who's got my information and where will they try to use it next? I may never know. And so, when the time comes to go to these places again, will the same thing happen?

I really hope not.

Some good things I've found today...

Sugardale (http://www.sugardale.com/GlutenInformation.aspx) ham, bacon, smoked sausage and hot dogs are all gluten-free! As are most Kozy Shack (http://www.kozyshack.com/index.html) puddings. Loads of calcium in a tolerable form. Woot! And even the chocolate pudding is gluten-free.

Maybe this won't be as impossible as I had thought it would be. After all, I used to bake. I used to cook. And I have a huge freezer downstairs that is currently full of things my daughter can eat while she's home from college.

Today isn't looking as bleak.

Happy Mardi Gras!

While I can't partake in all the traditional festivities, I am planning to do a bit of celebrating tonight. Gonna make myself a good, gf dinner, followed by some sort of fatty egg and bread-like thing for dessert. Maybe some sweet french toast made with udi's bread. Sounds interesting, doesn't it? Not quite pancakes, but close enough for this year.

Next year I hope to be able to make a nice king cake. Gluten Free, of course!

(Yes, I'm feeling a bit better today. Amazing what a little B12 will do for you!)

Just a note...

To anyone who actually reads this thing (and I'm not counting, so I have no idea unless you comment.)

I am writing this because I have no one to talk to about these things. My best girlfriend thinks all my problems will go away if I stop taking all my medication and think positive.

My sister is full of helpful ideas, and hasn't a clue how I actually feel.

And the man I love has flat out told me he doesn't want to hear about it.

So I write.

Stick a fork in me, I'm done.

So, on Sunday I found out that my liver is enlarged. Not terribly much, but enough. And I had five more tubes of blood drawn.

This morning, I had my cat scan. Appointment at 9:30, test takes ten minutes, tops. Made it out of there at a quarter after 11. Ugh.

Then off to the doctor to start over with the p. anemia treatments. One shot per day for three days, then one per week for two weeks, then one per month. So damned stupid. I told them I needed the shots. But I guess I'm just a dumbass who doesn't have a clue about my own medical history. Asshats.

So, I'm bruised, tired, thirsty, craving pasta, and my cholesterol is evidently through the roof. At least Maria gets done with college in three years, and then I can just tell them all to go to hell and enjoy what little is left of my life. (And yes, I'm aware that I could have a much longer one if I did all I was told. But I'm done now. I really just am.)

Happy Valentine's Day

Got an ultrasound done this morning. My liver is enlarged. (of course) and my left kidney is hidden. Took the poor woman several minutes just to find the thing.

And... I went to the bigger grocery store on my way home. Found a bbq sauce that I can eat (the Jack Daniels original), but my favorite isn't gluten free. Nor is any of the reasonably priced soy sauce or its relatives. Oh, the gf brands are out there, but they cost twice as much as the originals. And I just can't afford that.

I did find one type of sushi at the counter that I can eat... the roasted salmon rolls. Of course, I can have the veggie rolls, too... but I do like the texture of the fish rolls. California roll is out of the question, as it uses the fake crab. And that's made with... wheat. Who'd have thought that fish was made with wheat?

My trip to Starbucks went better, though. The one near me has discontinued the gf cake, but they had a brand of cookies that they have just brought in - Lucy's - and it is gluten free. And not bad tasting, either. Very, very crisp, but I dunked them in the coffee, and they acted just like regular sugar cookies, and tasted just like them, too. I'll be getting them when I go back, and I'll be going back pretty often. (It is right next to the big grocery store.)

Oh, and I found corn tortillas at the big store. They were with the cheese. Strange, but I guess they have to be refrigerated. Who knew? So now I can have some lovely chicken wraps and things of that sort. It will make my life easier, and will keep me from just eating Fritos for dinner from now on. At least most of the time.

GIG meeting at the Raisin Rack

I like fish. In fact, fish is one of the things Maria and I eat most often, as it is so very good for her cholesterol level. That being said, I think I'll pass on the bluegill from now on.

I've never eaten much freshwater fish, and after today I understand why my sister thinks fish taste "fishy". And the aroma? Not really to my liking.

Still, I will give the product a good review when I call on Monday, because for what it is, it was very good. The gluten free coating was nice, and the portions weren't a bad size. Just way too flavorful for me. Maybe perch... I've had perch before, and I don't remember it being quite so tasty. (If you know what I mean.)

The meeting was cool, I got some samples of natural calcium supplements along with the fish, and I found some falafel chips that really taste great. I'll invest in some hummus and have myself a party!

And I'll go back.

Breakfast, gluten free style

My first gluten free breakfast (I've been avoiding it). I call it "Eggs Benedict is turning over in his grave".

But it turned out pretty well. Gluten-free english muffin, eggs, cheese (just to hide the difference in the muffin taste), canadian bacon and hollandaise sauce.

The texture wasn't the same, of course - the muffin felt more like an overgrown pancake in my mouth than a regular muffin, but it tasted pretty darned good. One less thing I have to avoid like the plague!

But at $6.00 for four muffins, either I'll be eating it only on special occasions, or I have to learn to make my own.

Raisin Rack, Canton, OH

I visited this store yesterday after the doctor made it *very* clear that yes, even a tiny bit of gluten would start the whole process all over again. Not a good thing, I don't think.

And I stood there for over an hour, just staring at things. They have it all, mixes, flours, baked goods, snacks, even pizza/pizza shells and frozen dinners for both kids and adults. Oh, and cheesecake.

But I wound up just getting a few things - some flour, a loaf of bread and some english muffins. I figure if the things I put with them are flavorful enough, I won't notice anything but the texture, right? And if I'm paying six dollars for four english muffins, they had damned well better have the texture right.

One piece of good news, though. He says that the stupid patch on my elbow should be gone within a few weeks. No more cracking and bleeding and being embarrassed at the fuzzy looking shards of dry skin that stick up from it and hurt whenever anything brushes against them. Yay for that, anyway.

Living Without Gluten-free Recipes

I think my first attempt will be the Boston Cream Pie... it won't be exactly the same, of course, but it might just satisfy my craving for custard filled donuts.

I love my friends

One of them sent me a message today about a store I'd never heard of, and it is right here in nowheresville! It is called the Raisin Rack, and it offers a whole bunch of gluten-free foods, flours, and even hosts a support group once a month!

I'll be going there on Wednesday, after my doctor's appointment. If the roads are passable, that is. We're expecting another 8 inches of snow by then.

Disappointed

in my neighborhood pharmacist. You see, I have a lot of respect for pharmacists... they are accessible, and they have an enormous amount of knowledge about disease processes and medications. At least, most of them do.

I just got back from a visit to my pharmacy of choice, and I have to say that I am no longer very impressed with the staff there.

You see, the information my doctor sent (and almost every website I've seen) says to talk to the pharmacist about the possibility of gluten in my medications. So I went over there, waited until all the other people waiting for prescriptions had been served (as is only right... they have just one pharmacist) and then got called back for my consultation.

I mentioned that I had just been diagnosed with celiac, and he said, "What? Never heard of it". When I mentioned gluten intolerance, he knew what that was, but only (according to him) because his former coworker had it. Said she would have known what to tell me, but he hadn't a clue about what was used in the manufacture of the medications. Told me to call the companies and ask them.

Which I will do, but I'm nowhere near as happy with him as I was before this afternoon.

On the other hand, some progress was made today - I did not stop at KFC on the way home. But I wanted to.

A great place to visit:

One of my (many) internet "homes"



Visit Gluten-Free Faces

My name must be Drama Llama.

But guess what? I need someone to talk to, yell at, cry with. And the cats just really don't fill that need very well these days.

I need someone to commiserate with me about never, ever being able to have Wendy's french fries* again, not to tell me how easy this will all be.

And I also need someone to shovel my driveway. We got right around a foot of snow in the past day and a half, and while the road has been plowed (I think someone who lives here has a plow...), my driveway is still covered.


* or hamburgers, or pasta, or gravy or sauces or anything from Denny's (not to mention all the other places I can't eat anymore)

Day 4

Early, early in the morning... couldn't sleep.

But I have found some additional resources on the internet that will help when we travel... a GF restaurant guide, for one. Did you know Outback Steakhouse offers a gluten free menu? I would never have guessed it!

But the chopped salad (my favorite thing there) isn't on it. Sigh.

Talked to my sister last night. She had already gotten a foot of snow when I called. And she has to be back at work this morning at 9. I'm really glad I don't have to leave the house until Wednesday! On the other hand, she isn't being anywhere near as sympathetic as I'd like. I still want someone to hold my hand and agree with me that this is just a horrible thing. And she's being all practical. (Which is normally my job...)

Carabba's Italian Grill also offers a GF menu. As does Cheeseburger in Paradise. Of course, theirs consists mainly of "order without the bun" notations, but still, they're trying.

Okay, I'm going to try to find something for breakfast that isn't going to kill me. (And I am still going to ask how much is *really* too much as far as gluten goes.

Nobody reads this, so I'm safe here...

To vent. Really spew raw sewage out of my fingertips. Rage at the powers that be, and the insanity that is (and will continue to be) my life.

Do you know what Celiac Sprue is? Do you know the only treatment? Well, allow me to enlighten you.

Celiac is an autoimmune reaction to the proteins in wheat, rye, barley and sometimes oats. In other words, all the things that we depend on for grains in this particular part of the country.

The one and only treatment? A gluten free diet. Free. Which means none of these things in anything I ingest. Not in foods, drinks, medications, lip balms, deodorants, skin creams, nothin'.

(No I don't ordinarily ingest deodorant or skin cream, but evidently the gluten found in them can somehow make its way inside and cause a reaction.)

I'm mad. Rabid dog mad. Foaming at the mouth mad. I am sick and tired of this stupid autoimmune business. I'm exhausted. I'm emotionally volatile at this point, and I am just not at all certain it is worth the sacrifice for this additional stupid thing. I'm mad at my parents, my grandparents, my ancestors. I'm mad at my body for failing me once again.

I'm mad as hell at my brain for not being strong enough or smart enough to deal with a stupid thing like gluten. I'm mad as hell at my intestines for being such wimps that they can't heal. I'm mad at my doctor (not the gi one, the other one) for not believing zebras even exist, much less that I might present with one.

I'm mad at Whole Foods Market and Trader Joe's for not having any stores within 50 miles of my home. And for having incredibly high prices. (I know... the stuff is hard to come by, so the prices are higher. I never said I was going to be rational today.)

And damn, I'm mad that there isn't something that can be done about this.