Chapter 1

Gluten-Free from A to Z: The Basics of Being Gluten-Free

IN THIS CHAPTER

Getting a grip on gluten

Discovering the advantages of the gluten-free lifestyle

Making the most of meals

Going from gluten-gorger to gluten-free forager - and loving it

I figured the doctor had made a mistake. "You mean glucose," I corrected him with a tinge of exasperation at his clumsy blunder. "You must mean glucose." Geesh. This was going to be tough. No more chocolate.

"No, I mean gluten," he insisted. "And to be honest, I really don't know much about the gluten-free diet. You can see our hospital dietitian, but she won't have much on the diet, either. You're going to have to do some homework on your own."

All I could muster was a blank stare. What the heck was gluten? Keep in mind the year was 1991, when I knew as much about gluten as I know about piezoelectric polymers. Approximately nothing.

Stranded on some figurative island located somewhere between Terror Bay and the Dread Sea, I figured I had two options: Tyler could starve to death, or I could get busy trying to figure out what the heck gluten was all about. People probably frown on mommies who let kids starve to death.

The Internet was non-existent, and I couldn't find any books or support groups; it was time to get resourceful and creative. I buried myself in the University of California, San Diego med-school library and was determined to find out everything I could - and then share it with the world (at least, the other six people on the planet who were gluten-free at the time).

Little did I know that gluten-free-ness would explode into what it is today - one of the fastest-growing nutritional movements in the world - and this mission of mine would become all-consuming. This chapter gives you a basic rundown of what living gluten-free is all about.

How the Gluten-Free Lifestyle Saved My Son

I didn't aspire to any of this. I was deeply involved in a busy, successful career and juggling parenthood at the same time. But today I'm an accidental author, researcher, and support-group founder who was shoved into the deep end of the gluten-free pool and realized I needed to learn to swim. Fast.

Until 1991, my family and I ate a fairly typical American diet. I tried to keep it nutritious (extra cheese on the spaghetti to add protein), and I was aware of the need to limit fat and calories (scratch the extra cheese), but I didn't spend a lot of time worrying about what the family ate or the long-term effects food may have on our bodies. Clearly I didn't really know a lot about nutrition then, and I pretty much took eating for granted.

All that changed when my first child, Tyler, was about 9 months old and developed what seemed to be chronic diarrhea. The pediatrician chalked it up to the antibiotics Ty was taking for ear infections and told me to call if it hadn't cleared up in a few weeks. Three weeks later, I was back in the pediatrician's office. "Yep, he still has diarrhea," the doctor declared with confidence. "Yeah, I know. That's why I'm here," I mumbled with self-restraint worthy of the Nobel Peace Prize. "Give him foods that will plug him up, like crackers and bread, and call me if it hasn't cleared up in a few weeks."

I'd like to digress for a moment to point out that I'm surrounded in my family by doctors and healthcare professionals, going back to my grandpa and following through to my dad, siblings, and my siblings' spouses. Furthermore, I was pre-med throughout college - I have an intense respect for doctors, which in retrospect may have stalled my progress a bit as I sought answers because I didn't question their conclusions.

So I waited - not patiently (patience isn't my greatest strength). Three weeks later, after another perfunctory examination of Tyler's ears, nose, and throat, the doctor made that "hmm" noise that doctors make when they figure out the problem. Yay! We were finally going to get some answers!

"Yep, he still has diarrhea. Don't worry about it. He's not dehydrated, and he's in the 75th percentile for height and weight. It's nothing to be concerned about." Gee, could the fact that I practically infuse him with liquids have anything to do with the fact that he's not dehydrated? And does the fact that he started off in the 99th percentile and has dropped to the 75th mean anything? Apparently not. I was instructed not to bring him back for diarrhea because there was nothing to be concerned about. They suggested that I not return for the diarrhea. I guess they meant it because when I called three weeks later, I was refused a visit.

Doctor number two agreed with doctor number one. After a quick look in the ears, nose, and throat, he declared that Tyler was a healthy baby boy. "But what about the diarrhea?" I asked. "Really, it's nothing to worry about. He's a healthy height and weight, he's not dehydrated, and he looks fine to me," he said as he raced to his next four-minute appointment. I considered offering to give Doctor Do-Nothing a close look at the 22 diarrhea diapers a day that I was changing but somehow managed to control myself.

In desperation, we changed doctors again, and - long story short - a quick look in the ears, nose, and throat turned up - you guessed it - nothing. By this time, Tyler's belly had grown hugely distended (see Figure 1-1), his arms and legs had wasted to skinny little limbs, his heinie had disappeared completely, and his personality had changed. He had transformed from a lively, energetic toddler to a listless, irritable, clingy, and quiet little boy. The diarrhea had started nearly a year before, and I figured I was just a neurotic first-time parent with a mellow kid who pooped a lot.

Eventually, we ended up in the hands of doctor number four. By this time, realizing there was nothing wrong with Tyler, I thought nothing of dragging this baby with a distended, malnourished belly into the pediatrician's office for a routine visit. After looking in Tyler's ears, nose, and throat, he laid Tyler down on his back and thumped on his belly like you might thump a honeydew melon to see whether it's ripe. "My goodness," he said with that I'm-alarmed-but-I'm-a-doctor-and-don't-want-to-freak-you-out tone. "What's going on with his belly? It's very distended." I couldn't answer through the tears of relief.

After testing for cystic fibrosis, blood diseases, and cancer, we finally got the bittersweet diagnosis. "Your son has celiac disease." Huh? Is that anything like the flu? Surely a few weeks of antibiotics will wipe it out. "He'll need to be on a gluten-free diet for the rest of his life. Oh - and take this seriously - for him, even one molecule of gluten is like ingesting rat poison."

Photo submitted by Danna Van Noy

FIGURE 1-1: My son's distended stomach.

Huh? Rest of his life? Rat poison? I was terrified to feed my own child, but I pulled myself together and headed to the store with a hungry toddler, asking him what he wanted to eat. "Cwackews." Crackers. Sure. I began to read labels, and my head began to spin. Everything had flour in it. If you're wondering why I didn't just head to the gluten-free section, let me remind you this was 1991. There was no such thing. I asked the store manager if they had any gluten-free products and was ushered to the sugar-free section. Hours later I found Fritos and combed the label 28 times. It appeared to be safe, so I loaded five bags into the cart and left, both of us in tears.

I don't have room here to give the details of the rest of the story, but Tyler quickly improved, and has grown up to be a happy, healthy gluten-free man with kids of his own. You can also read the full story in my other books or on my websites. Suffice it to say that the words "for the rest of his life" had a huge impact, and I realized it was time to step up to the plate and do some research on lifestyle and attitude adjustments to help our family - and others.

When I heard that Tyler would have to lead a gluten-free lifestyle, I realized our family had come to a fork in the road. At first, we were devastated, confused, frustrated, and grief-stricken. But I knew there was another path - a path that would have a more positive effect on Tyler's life. As we found out how to live with the diet and its ramifications, we worked hard to find a way to turn the adversity into a positive force in our lives. It didn't take long to realize that what we once interpreted as misfortune has actually been a huge positive force in our lives - and, most importantly, Tyler agrees.

Understanding What Gluten Is and Where It Is

Gluten has a couple definitions; one is technically correct but not commonly used, and the other is commonly used but not technically correct. I give you more details on both definitions in Chapter 6, but to get you started, and for the purposes of this book, here's the common definition: Gluten is a mixture of proteins in wheat, rye, and barley. Oats don't have gluten but may...