Galaxy Glue

I've been singing that song to myself all week.

I am exhausted, and I feel like the Incredible Shrinking Woman. The end part, where they tell her what's making her smaller.

I have a lot to say, but unless I can type whilst sleeping, I'll have to say it this weekend.

No Good

My cornbread was awful.

If there is one thing in the world that I can make perfectly, without fail, it's cornbread. I made it tonight, and it just didn't turn out. Was it the GF flour that I added (1 Tbsp.), or the new cast iron skillet that replaced the old contaminated one? Either way, I'm frustrated and a little pissed off.

I'm a little resentful that my tastebuds seem to be a little lame. Things that seemed to taste awful just 10 days ago now seem delightful. What's that all about?

A very sweet lady gave me a huge bag of cookies tonight. There were flavors and combinations that no one should ever really have to dream up, but several potential culinary horrors were actually represented beautifully in the form of such creations as coconut quinoa and chocolate orange cookies. Three weeks ago, I don't know what I would have done with these cookies, but they are really good!

There is a lot of underlying frustration in these words, but I am in the midst of an abyss of exhaustion at the moment. Meal planning is a bit taxing, but most of all, I feel like I am at the produce market every single day. My son eats a bunch (5 or so) bananas a day, plus at least one canataloupe. I urge anyone who may be reading this -- BUY STOCK IN CHIQUITA!! And possibly even a cantaloupe farm!

More later, y'all.

Bad. Ass.

I have many things to say about celiac disease and our healthy new gluten free diet, but many of them are negative. Because I am just so tired of all things negative, I would like to reveal something else entirely.

Something serious is going on with me. I don't know if it's the new diet or maybe all the stress that I've been under, but I am a changed woman.

If any of you know me at all, you know how terrified I am of lizards. Small ones, large ones, green ones, brown ones, black ones, see-through ones, spotted ones, striped ones, neon ones, indiginous ones, imported ones, baby ones, aggressive ones, fast ones, dead ones... you get it. Those closest to me may recall that I almost didn't marry JS because of an incident that we now politely refer to as the Lizard In the Christmas Tree Incident, but this isn't the time to discuss it... still too painful.

Well, you see, my house has been invaded by lizards twice in the last week, and I took care of them. By "taking care of them," I am not referring to sucking them up with the vacuum cleaner (ahem.. JS!), and I did not squirt them with Windex until they drowned.* Instead, I identified the problem (offending lizard), formulated a plan (remove them, STAT), acquired the required equipment (plastic bowl and some sort of lid or paper... you get it), and went to work (without screams or requiring oxygen). I don't remember much about what happened, but somehow the trespassing reptiles found themselves propelled safely into the grass. All because of me.

I don't know what exactly has changed within me, but it simply MUST BE the new and improved Gluten Free Whipper that has emerged, sans lizard phobia. There is no other explanation. And I think that if I remain in SoFla, I might have to start wearing some sort of cape. I have truly turned a corner.

*I don't even own Windex, and I would never squirt anything larger than a housefly with a cleaning product. I mean, I would squirt a roach to death if I was forced to, but I have never had the opportunity.

Worst. Nightmare. Ever.

I couldn't sleep last night.

I tossed and turned and was borderline freaking out over all this celiac brouhaha. It hit me right in that quiet little moment right before I was able to fall asleep that I had not baked any GF cupcakes. Someone told me on facebook that their friend, the mother of a celiac child, baked a whole bunch of magical GF cupcakes and kept them in the freezer so that whenever there was a party or celebratory function at her child's school...viola! Perfect mom saves the day with a perfect cupcake, child isn't left out of sad, and the whole class has a rockin' cupcake party. Well, I have no such jewels in our freezer. I even snapped up a cute little $10 countertop cupcake maker with this exact purpose in mind.

I tried to calm myself down and just rationalize with myself. Really, out of the entire class of 18 kids in NCS' kindergarten class, what were the chances that I wouldn't have time to find out when the next party is scheduled and somehow find the perfect freezer-friendly, non-bricklike, GF cupcake? Like almost zero? I mean really, why was I getting all worked up for nothing?

Fast forward a few hours -- and I mean just a few, because I got like no sleep -- dropping the boy off at school. When is the next cupcake party? Oh, today. Seriously, today. I somehow saved the day with an emergency procurement of naturally GF vanilla ice cream, but I still felt unprepared.

I have so many factoids, claims, and even rumors swirling around in my head, I can barely think straight. And as the purpose of this blog is to get my thoughts filed away properly, here are the rumors on the street and on the internets, as well as a few thoughts and fears of my own:

• 100% pure Maple Syrup is GF
• Maltodextrin, though on the "Do Not Eat" list, is alleged to be GF in the US, but not GF in Europe. Whatever.
• Both coke and pepsi (just regular and diet are all I've looked up), although they contain "caramel color," are alleged to be GF by their respective makers. They are rumored to make these claims legally because the possible amounts of gluten present are trace-to-scant-to-maybe even zero. Seriously? Can't we just be honest about the source of our caramel color?
• Publix has clear and concise GF info on their website. http://www.publix.com/managed_pdfs/2011/Gluten_Free_2011.04.pdf
• You can google "Is (xxxxx) gluten free?" and receive excellent information on almost anything under the sun from the websites of celiac.org and celiac.com's forums.
• Purely distilled vinegars are allegedly GF, but then some sources say to stay away from all vinegars because they are started with a barley mash.
• Hormel canned chicken is GF. I can't think of a single reason why I would ever buy this, but it's in my head.
• The wax on fruit -- non-organic apples, specifically -- allegedly contains gluten. I plan to buy organic apples, and scrub them anyway.
• Pringles DO contain gluten; Lays Stax potato chips are GF.
• Most of Frito Lay's chips (corn and potato) are GF.
• Tostito's Scoops are GF, but some of their fancy "Artisan" chips are not.
• The glue in envelopes contains gluten. Don't lick it.
• Boar's Head meats and cheeses are GF.
• Publix mayonaisse is GF, as are Heinz Ketchup and French's mustard
• Hand sanitizer is no substitute for hand washing when it comes to reducing or preventing cross contamination.
• I bought a very expensive GF flour blend that can be substituted for regular flour (equal parts), and it's working out okay so far. I'm not ready to post any testimonials yet.
• I don't trust any restaurant to prepare GF food for us right now.. I haven't tested the waters yet. I'm too afraid.
• GF homemade bread is really, really good straight out of the oven, but begins to take on a plaster-like texture after 36 hours. Maybe I'll take up skeet shooting.

I'm sure I'll add to all of this later, and I will probably become more organized as time goes on. Well, hopefully.

And oh yeah, bonus: I have celiac disease, too. Today was my first full gluten-free day.

Contaminated? Me?

Okay, all of this is kind of hard.

It's one thing to have to buy or bake gluten free bread, which kind of sucks, but that's really just the tip of the iceberg.

Shopping (and the research that has to go into it) is more difficult than I imagined. So I did a little homework, and I printed a list of stuff that's not allowed. This list is not short. By any means. And I found out on Whole Foods' website that they have a handy dandy little book when you walk in, detailing all of the GF products on the shelves. I loaded NCS up in the car, and we set out in search of everything GF, and I really mean everything.

You see, NCS has a sensory processing disorder, which affects his feeding. Long story short, some textures just really freak him out. Not freak out as in "I really don't like this," but FREAK OUT as in "my brain does not know what to do with this stuff in my mouth, and not only can I not take it, but I am going to go all Exorcist on you!" I can't even begin to really explain it, but let's just say that carbs (breads, crackers, pizza crusts, etc.) are very, very important to him. The sensory stuff kind of makes the GF choices much more narrow.

Whole Foods was out of the handy dandy GF shopping guide, so the nice lady printed it out for me on computer paper. Although I really do appreciate the thought behind the guide, it's pretty difficult to use, especially when you have a boy in the large part of the grocery cart who really would like to be anywhere else. I think I'm a pretty tough person, and I can take many of the crazy curve balls that motherhood sends me, but this shopping list + the long list of stuff that he can't eat almost reduced me to tears. I mean really, is maltodextrin GF or not? The list says he can't have it, but the internet says he can.

Soap box alert: Would someone just stop putting this sort of crap in our food? Maltodextrin? Sodium diphosphate? Artificial flavorings? Caramel color? All of this, by the way, is exactly why I think people have this ridiculous disease. Wheat should be found IN BREAD, NOT SHREDDED CHEESE OR SHAMPOO!

Two such trips to Whole Foods and one such trip to Publix (whose website has a LOT of great GF information), and I think I kind of have an idea of what I'm doing. And then I find out about the whole concept of cross contamination, which was a bit mind-blowing. I just think of gluten like it's a virus or a terrible bacteria. I mean, it's just a microscopic little protein particle that can be passed from person to object/person/pet. If it's on your hands because maybe you ate a turkey wrap, and then you touch a GF cookie to give to your son, you've contaminated him. Perhaps you aren't even so stupid as to just go ahead and handle his cookie... maybe you just touch the handle of the refrigerator, and then your celiac child (yes, that's what they call them, celiacs..) opens the fridge and then eats the cookie on his own accord, BAM! Cross contamination. You've just infected your kid, or glutened him.

Now as you begin to embrace the concept of cross contamination, think about this... Say that you made some regular pasta in your kitchen back in those happy days when you didn't know the term "celiac disease." Perhaps you even stirred the boiling pasta with a $12 wooden spoon from Crate & Barrel... You guessed it, BAM! Cross contamination. Throw it out. Same with your toaster, waffle iron, cast iron skillet, kitchen sponges, plastic kitchenware, all cutting boards, etc. I'm sure there still more that I haven't even thought of yet.. I'm learning more every day. And I really, really miss my wooden spoons.

Scope Prep, and Scope

The boy had to stay gluten-full until the endoscopy to ensure that we (well, not really all of us, just the nice doctor) could visualize the full extent of the damage within.

You see, if you're not familiar with the mechanism of celiac disease, I'll break it down for you really quick, and I like bullet points:

• It's an autoimmune disease, not just an allergy.
• When the wheat (also rye, barley, spelt) protein gluten is introduced into the gut, the villi, which are tiny little the finger-like projections on the walls of the small intestine are damaged. These are the little guys that ACTUALLY ABSORB THE NUTRIENTS FROM OUR FOOD! Not good.
• I'm going to say this one again: When the villi come into ANY contact with ANY gluten, they get angry and pissed off, and they are damaged. They will now not absorb the good stuff from food.
• To further clarify, not only is there a lack of absorption of nutrients, but you can gather very quickly by looking at my son's distended belly, there is an accompanying inflammatory reaction, which can cause more damage than you can ever dream up. Maybe we'll touch on some of that later.
• So now, since there is compromised absorption, just like if he were malnourished by any other means, the kid can get sick. Like real sick. Like actually worse than not even eating, since now the small intestine is all damaged and irritated. Seriously, like cancer sick. Sick, sick sick.
• The important thing to take away from this bullet point festival is that this can be really, really dangerous.

I decided to go ahead and clean out the house, since the kid is going to have to have something to eat when he wakes up (post-endoscopy). I really had no idea how "contaminated" our kitchen was. I took a picture, but I'm not posting it at this time for two reasons: #1 - I am TOTALLY ashamed of the state of my cabinet (that's right, ONE cabinet.. hopefully upgrading soon) #2 - I don't know how to do it yet.

Do you have any idea how many of our foods have wheat proteins in them? It's quite astonishing.

I gave away food to friends, open boxes of pasta to my son's kindergarten class for art projects, other stuff to food banks, and I even returned a whole bunch of recently purchased dry goods to Publix (thank you!).

And since I mentioned Publix, I have to say that the people that work in our local grocery store are the sweetest, kindest, most helpful people! They all know NCS, and they have gone out of their way to answer my questions and help me out whenever I have questions or concerns. I want to give a special shout-out to Sandy, the deli lady who slices the cheese just right, and the nice curly headed guy who rules over the produce department!

So the morning of the procedure, with a sleepy and very hungry little guy, we set off in search of visual images of his innards. And we got them. Throughout the process, NCS was a sweet, polite, patient little patient. He was brave, and we were so very, very proud of him.

Well, the biopsies (eight) confirmed the diagnosis, celiac disease, once and for all. Here we go.

The Episode Where the Lady Gets the News That Her Son Has Celiac Disease...

So there we were, in the exam room of the pediatric gastroenterologist. I just knew that he was going to examine NCS (our five year old son), review his unremarkable labs, and tell us that he has a slight case of reflux -- or better yet, that maybe he just eats too much junk food -- and is just having the occasional tummy ache. In my fantasy, the doctor would then suggest probiotics, maybe refer us to a speech therapist for some feeding therapy at the most. He would spend about five minutes with us and send us on our merry way, and I would feel a bit ridiculous for even bringing my son to a specialist.

But that's not what happened. At. All. Instead, he says: "Your son has celiac disease."

Um, what??? There is no way he just said that to me. I've had the results of all of his lab tests for the last week, except one. The celiac panel. The results had been faxed to the doctor's office, get this -- WHILE WE WERE IN THE WAITING ROOM. Still, even though I knew it wasn't really that bad of a disease, the pronouncement still came as a bit of a shock.

Surprisingly, I remember everything we then talked about:

• Physical exam includes some classic signs, but he's really healthy. Check.
• Autoimmune disease. Check.
• Neuropathy. Check.
• Hereditary. Damn!
• Scheduling endoscopy to survey the damage. Check.
• Must live gluten-free life. Starting to check... (Where in the world do I start?)
• Have to meet with a nutritionist... Haven't checked yet.
• May possibly have to revisit speech therapy for feeding therapy. Ding ding ding!! I got this one right!

How did we end up here, you ask? My son isn't a sick child. Yes, he missed a few weeks of school last year with bronchitis, but mostly because he went to school in the basement of a building that was built in 1924... hello, mold! He does, however, have this huge belly. Like that cute, round toddler belly that you see on a two year old, except that he's in kindergarten. And every now and then, he vomits. Maybe just out the blue, but sometimes after a pretty painful tummy ache that also just kind of came out of nowhere.

He was never nauseated before or afterwards, and he actually seemed to feel great after he puked. But when he did have to throw up, it was pretty urgent. And the last time it happened, we were getting off a plane. Thank the heavenly gods that he made it into the bathroom, if not completely into the toilet -- Sorry to everyone that had to deplane after us!! But seriously, I didn't even have time to grab a barf bag, it happened that fast. All of this has been going on since the beginning of the summer... three or four months or so.

But let's get back to the belly. My husband thought that he just eats too much food, particularly food that expands (carbs, etc.), but I didn't share his opinion. I thought that it was one of the following: either an obstruction (unlikely), or an inflammatory reaction to something (winner!). Even though my son is not skinny, when he lies supine (on his back), his belly is large and distended, rotund even, but you can see his ribs. Not good. I just really felt that the abdominal distention was telling us something, and I would absolutely not be able to live with myself if we didn't check it out.

We walked out of that appointment with the endoscopy scheduled for the following Monday morning at 7 a.m., and the freedom to indulge in all things gluten until midnight on Sunday.

Live it up, NCS!! Eat those pancakes while you can! Mommy's got some googling to do...