Go Gluten-Free or Go Bust
Like a lot of NTPs, I have a subset of friends who only email when they have a health issue. This was a recent email from my friend Heidi:
"I ate one square of a Green and Black chocolate. Within 30 minutes I became nauseous. Then I was in bed, totally comatose, passed out. I was unable to get up until about four hours later. At that point I had a bad headache and I was really disoriented and confused. I was shaking violently all over. Visibly shaking hard. There was digestive upset as well, with diarrhea. Last time this happened I was sick for six days with vomiting and extreme fatigue."
Luckily we both knew why Heidi got so sick. Green and Black isn’t using Chinese melamine, but instead wheat syrup in their filled bars. When this mother of five eats gluten she goes down hard which is amazing considering what a tough sell she was. She had long been an avid and accomplished baker and she bristled whenever I suggested her children’s autism symptoms, or her own poor health and slippery brain function, might be gluten related. Finally, after her teen daughter’s umpteenth violent outburst, she got the family tested, they all tested positive. They’ve been gluten-free ever since. Now just the tiniest bit sends her reeling.
You may have noticed a robust section of gluten-free foods at your local health food store. In fact, it’s the fastest growing segment of the natural foods market. Why is going gluten-free suddenly so popular, and what does it mean? A gluten intolerance means your immune system is reacting to gluten as if it were something harmful, like a virus or bacteria. Also, technically we’re talking about a gliadin intolerance as antibodies are produced against this sub-protein of gluten. Since the term gluten intolerance has fallen into popular use that’s what we’ll call it.
Gluten is a protein found in wheat and wheat-like grains including spelt, kamut, barley and rye. Oats are guilty, primarily by association, as they are processed with wheat. Gluten-free oats are now available. There’s a reason the word gluten has the "glue" sound in it--gluten is what gives dough it’s elastic consistency and holds bread together. In fact, one of the hardest things to get used to on a gluten-free diet is more crumbly bread.
Gluten is difficult for humans to digest (as well as pets. Do your dogs and cats a favor by buying them gluten-free food). Ancient humans intuitively knew this as they transitioned from hunter-gatherer to agriculture societies and fermented or soured grains to make them more digestible. Even still, as the book Dangerous Grains by James Braly, MD, and Ron Hoggan, MA points out, archeology shows humans decreased in stature and brain size after gluten was introduced to the diet, while dental caries, infant mortality and skeletal diseases mushroomed. What’s worse, this already difficult-to-digest grain has been hybridized over the years for higher gluten levels, and methods of storing wheat in this country fosters the growth of toxins that denature the protein, making it even more antagonistic to the body.
Partly because it is subsidized by the government, giving it a high profit margin (Google Michael Pollen’s articles on the Farm Bill for an eye-opening look at how politics play into what’s on your plate), wheat dominates the American diet. We simply eat way too much of it, improperly prepared. This became apparent to me when I was trying to figure out what was causing reoccurring bumps on my toddler’s skin. I kept a food diary of what she ate, while at the time a few friends were hounding me to give up gluten. But like a lot of people new to the concept, I couldn’t fathom cutting gluten out of our diet completely. I came across that diary after more than a year on a gluten-free diet and was shocked to see wheat or spelt was in virtually every snack and meal my daughter ate. I was one of those people who always said, "Oh, we don’t eat that much wheat." By the way, those bumps turned out to be a dermatitis herpetiformis, a skin condition caused by gluten antibodies.
Once you’ve gone gluten-free and done some research, you develop gluten antennae--the ability to see the telltale symptoms in a great many people especially those closest to you. The growth of these antennae is followed by the proselytizing stage when you are compelled to end war, fascism and rampant tummy aches by telling the whole world to go gluten-free. The books Dangerous Grains or Going Against the Grain are good manuals to arm you with some alarming evidence in this phase. After a few too many people have told you to go to hell, you live with a sore tongue from biting it so much unless you have been asked for, or better yet, paid for your advice. The only time I break this last rule is when I see children suffering, but even then, I usually lose. Apparently the thought of getting through parenthood without the aid of mac-and-cheese and goldfish crackers is too overwhelming for most parents, even if it means giving their children prescription drugs instead.
At first I thought I was being overzealous with the gluten thing, but newer research shows no, there really are that many people having problems with gluten. One cutting-edge scientist, Kenneth Fine, MD of EnteroLab (www.enterolab.com), estimates from his research that one in three Americans is gluten intolerant, one in three and that more than 80 percent of us are genetically predisposed to a gluten intolerance. That’s like, uh, most of us. Once those genes turn on, it means that your immune system is armed and poised to attack every time gluten, which it now recognizes as an infectious agent, enters the body. The spooky thing, according to Fine’s research and other studies, is that most cases of gluten intolerance don’t manifest as gut symptoms, so people have no idea they’re gluten-intolerant. "But I don’t have stomach problems," they’ll retort indignantly even though they can’t bend their knees or remember their three-year-old’s name (and as we NTPs know, they do, in fact, have stomach problems).
True, Fine is basing these estimates on his own extensive research and not epidemiological studies. "Oh, he just wants people to use his lab," the naysayers will contend (EnteroLab is a direct to consumer lab, testing for antibodies to gluten and other foods using stool samples). But consider this, antibodies to gluten are made in the digestive tract. That is where EnteroLab looks for them and so far it has a 100 percent success rate in confirming celiac disease, a form of gluten intolerance that creates an autoimmune reaction in the small intestine. Conventional medicine still relies on blood tests and intestinal biopsies for a diagnosis. Unfortunately, you’re likely to get a negative result with a blood test until your condition is very advanced and antibodies are spilling into the bloodstream. You don’t want to wait that long. Biopsies aren’t much better. The tissue sample can be taken from an area that’s not affected. Or the intestinal villi can remain relatively unscathed while gluten does its damage elsewhere, like in the brain, and who wants to biopsy that?
Also, there’s this inconsequential but charming tidbit about Fine himself, a bespectacled but long-haired and brawny scientist whose remedy for gluten intolerance doesn’t involve the pharmaceutical industry or expensive therapies, just a gluten-free diet. If you’re so inclined, you might also purchase one of his music CDs through his non-profit organization, The Intestinal Health Institute (http://www.intestinalhealth.org/). When he’s not wearing his research hat, Fine dons a wide-brimmed leather hat and becomes Kenny Fine, a singer songwriter who created the child-oriented "Get On a Mission of Nutrition" CDs and DVDs. The Intestinal Health Institute also hosts an annual family summer camp in New Mexico, catering to children and their parents who are not only gluten intolerant, but dealing with other food intolerances as well. As a mother of two celiac children, one of whom is also dairy-intolerant, the idea of an entire week free of scouring ingredient labels, packing "special" food for my kids, and the gnawing anxiety that I’m raising them to feel like freaks almost brings me to tears. And, of course, campers sit around the fire evenings while Kenny Fine himself strums the guitar and sings about good gut health.
Which is all a rather long-winded way of saying, when you want the low-down on gluten who are you going to believe--conventional medicine with its prescription pads, poorly performing blood tests, biopsies, outcries that a gluten-free diet is too extreme (many have been told this by their family doctor), or a researcher and health advocate who spends his spare time composing songs about your intestines?
So how does a gluten-intolerance affect your health? Although it manifests differently for different people--joint pain and inflammation, dermatitis, asthma and other respiratory tract issues, poor brain performance, autoimmune diseases, behavioral issues, digestive issues galore--the damage often begins in the gut. There the intestinal villi, the little "fingers" that absorb nutrients, are gradually flattened by a gluten intolerance as gluten’s glue-like properties go to work gumming up your intestinal lining. This creates a permeable intestine (leaky gut) so that undigested gluten and other proteins escape into the bloodstream, creating a chronic immune response. One’s overall health slowly erodes, various allergies and food intolerances develop, cancer risk increases, degenerative diseases set in, and the risk for developing autoimmune diseases runs high.
Datis Kharrazian, DC, DHSc advises his patients with autoimmune Hashimoto’s thyroid disease to immediately remove gluten from their diets. Numerous studies from several different countries, not to mention overwhelming clinical evidence, show a strong link between gluten intolerance and Hashimoto’s. Because the structure of gluten so closely resembles that of the thyroid gland, the connection is largely believed to be that of mistaken identity. When the immune system tags gluten for removal, this stimulates the production of antibodies against the thyroid gland as well. In other words, every time gluten is ingested by person with Hashimoto’s, the immune system attacks not only gluten but also the thyroid. Therefore everyone with Hashimoto’s should be screened for gluten intolerance!
Perhaps gluten’s most devastating area of impact can be the brain. At his recent brain chemistry seminar, Kharrazian showed brain MRIs of a man who had symptoms of Lou Gehrig’s Disease (he was increasingly losing function of his right arm and leg). As the disease progressed, his MRIs showed lesions in his brain growing worse. Along the way he was screened for celiac disease and tested positive. After several months on a gluten-free diet, with no other form of therapy, the MRIs showed a significant reduction in his brain lesions and he regained use of his arm and leg. But that’s not even the kicker. Guess who was the athlete featured on the first ever box of Wheaties? That’s right, Lou Gehrig. Of course we can’t say for sure gluten caused his demise, but it does make you wonder.
As parents of autistic children know, gluten also acts as an opiate by attaching to opiate receptors in the brain and producing a narcotic effect, which explains why so many comfort foods are wheat-based. This effect creates powerful behavioral responses in autistic children, while making gluten highly addictive to them. It’s no wonder these parents complain their children will only eat gluten and dairy foods, (casein in dairy acts in the same way) the very foods people like me are telling them to remove. Unlike most children who heed old-fashioned truisms, autistic children will starve themselves to death. Fortunately most parents find when they remove these drug-like ingredients, other foods suddenly become more agreeable to the autistic child. I have one friend, however, whose autistic son is so addicted to gluten that he will eat the binding out of books (since gluten is so glue-like, it is an ingredient in many sticky things--think twice before licking that envelope). For a home schooling family, they have very few books on the shelves.
Kharrazian believes autism starts with the mother, and so many of us are in such toxic, weak and depleted states when we have children that it takes very little--a gluten intolerance, a vaccine, exposure to toxic molds or chemicals--to tip a child who was born with a fragile immune system into full blown autism. Many children are also born with their mothers’ undiagnosed food intolerances. I was one of these mothers, and I can only thank good luck or genetic stew that my children didn’t become autistic. However, I endured my share of what I now know was abnormal childhood behavior. They say temper tantrums are standard for children, but my own experience says otherwise. Three days after both my children were gluten-free, and my youngest was also dairy-free, the daily tantrums, the night terrors, and the uncontrollable behavior dried up (although being too tired or too hungry still pushes them over the edge). One by one, as my mom friends have taken gluten, and often casein, out of their children’s diets, the stories I hear about changes in their children’s health and behavior are truly miraculous.
Sometimes, however, the afterglow of that miracle gets lost in trying to maneuver a gluten-free child through a world obsessed with wheat. Suddenly simple trips to run errands or go for a play date turn into tactical missions. The gluten-free mother must be well armed with a portable kitchen of tasty meals and snacks, special cupcakes for each and every birthday party, rules for caregivers, and a lot of trust, patience and forgiveness. Those rules will be broken, or people won’t take you seriously. They’ll roll their eyes, study you for a tic or some psychological flaw, or say, "It was just a little bit of wheat, it wont’ hurt." Or Grandma, while a walking wikipedia of gluten intolerance herself, will turn to Daughter-In-Law and say, "What’s wrong with your children?" as if they are growing an additional nose. I can’t tell you how many moms I know that home school their children simply because they are not willing or able to deal with it.
And then at home you get the guilt tripping that any clever child learns to pull: "I wish I could eat gluten. I sure wish I could have a hot dog bun. I wish I could eat the birthday cake. I wish I could eat chicken nuggets. I wish I could eat pizza with them. I wish I could eat whatever I wanted. I wish you weren’t such a lame mom. I wish you could see how a gluten-free diet is child abuse and how I’m clearly growing into a dysfunctional misfit who will write a scathing memoir about my neurotic mother when I grow up." It is hard to stay the course when what’s poison for us is breakfast, lunch and dinner for the rest of the world. Then I just take myself back to when she was three years old, standing at the top of the stairs screaming obscenities at me for hours (well, if you count "poopie-headed mama" as an obscenity), violently hacking up her lungs all winter, scaring me with advanced digestive issues, and waking up every single night, screaming in terror. Thanks, but we’ll pass on the Ritz crackers. Not worth it.
Luckily there are so many gluten-free products on the market now, and new ones always coming out, that being gluten-free feels like having the pass to a secret party where only the cool people are invited. If you find out a stranger is gluten-free, you are instant friends. With some advance notice, cruise ships, Disneyland and some resorts will spoil you rotten with a gluten-free diet. I even found a gluten-free dude ranch online. Although we can each feel awfully alone in this Wheat-Based Wonderland, our dollars have added up to a recognizable force in the market. All of this makes transitioning to a gluten-free diet easier than it’s ever been before.
Truthfully, a lot of gluten-free products are not the kind of crap you want to eat regularly, but it’s nice to know which condiments, baking ingredients, meats (like sausages), and other foods are gluten-free. When I transitioned my children to a gluten-free diet, I indulged them for a short while on all the gluten-free cookies and cakes on the shelves, did quite a lot of baking at home, and hit all the restaurants and bakeries in town that offer gluten-free foods. When my friend learned her 13-year-old was both gluten and casein intolerant through an EnteroLab test, she met with a lot more resistance than a parent of younger children would. So she instituted a points system, just like you get with a credit card, to earn toward a gift. Her daughter desperately wants a video ipod, so my friend took her to the Apple Store to pick one out, hold it, smell it, and caress it. Then back at home she earns points for each week she can stick to her diet. If she cheats she has to go back to the beginning of the week. Between the promise of a new pink ipod and the fact that the kids at school will no longer be calling her Godzilla since her eczema is clearing up, she is doing great on the diet (also, having personally witnessed me succumb to a migraine and nausea after eating a contaminated meal was very motivating). I have another friend, however, whose 15-year-old daughter flies into psychotic rages and symptoms of bipolar disorder when she eats gluten. She refuses to stop eating it for more than a few weeks and there is nothing my friend can do about it. That’s why, ideally, you sort this out before your children are of the age when they think that everything coming out of your mouth is coming out of your, well, you know.
Currently the EnteroLab test, which you can order yourself online, is considered the best thing going for diagnosing an intolerance to not only gluten, but also dairy, eggs, soy and yeast. Last I heard they were also working on corn. EnteroLab also tests other markers that look at genetic susceptibility for gluten intolerance, as well as digestive function.
The gold standard, however, is a simple elimination/provocation diet. In this diet, you remove all the common allergens for a minimum of two weeks (longer is better), then reintroduce each food, one at a time, every three days. After the two-week rest, your immune system will raise all kinds of hell if you assault it with an offending food. The reason this test is preferred is because sometimes a person’s immune system is so depressed that EnteroLab’s test will produce false negative results. In other words, your exhausted immune system is producing so few antibodies that it can’t even make enough for a positive score on a lab test, even if gluten is a big problem; or it can give you a low positive score. On the test anything over 10 shows a gluten intolerance, and let’s say you’re a 14. This could mean your beleaguered immune system is barely able to crank out the antibodies. It does not mean you’re only a little bit gluten intolerant. This is what the family doctor told my friend’s mom after he puzzled over her EnteroLab results, saying that since her score was low it was ok for her to eat just a little bit of gluten. That’s like being only a little bit pregnant, so it’s ok if you smoke just little bit of crack. Note the bald patches where I pulled my hair out.
Although the elimination diet is the cheapest and best test, the EnteroLab test is still great for stubborn children, suspicious spouses, and for those who could sooner fly to the moon than muster the discipline for an elimination diet. Those cold, hard lab results are also handy when you need a little backbone standing your ground with your children’s caregivers and family members.
Once you’ve got the bad news, or good news, depending on whether you mind spontaneously soiling your pants, I think it’s important to mourn what amounts to a huge loss. Food is such a constant in our lives, especially sweet, doughy food. It’s no small thing to give gluten up, knowing you’ll spend more than one potluck pacing back and forth in front of the dessert table like a turkey trapped on the wrong side of the fence. Every time I’m confronted with saying no thank you to a warm chocolate-chip cookie, pizza with friends, or with the tedium of trying to find something "legal" to eat out, I mourn all over again. Every time my children are left out of a surprise treat because they are gluten-intolerant, you may as well drop my heart into the middle of a dirt road and back your truck up over it. Then I remind myself that I now can bend over to pick something up off the floor (my joints used to be too stiff and achy), my face isn’t always painfully red and splotchy, and I no longer have to pry my clenched jaws apart in the morning. My children are healthy, energetic and smart. It’s worth it. It’s the only body we get in this lifetime and the convenience of gluten just isn’t worth wrecking it.
Elaine Fawcett, NTP
About the author:
Elaine Fawcett is a Nutritional Therapy Practitioner, health writer and creator of www.pdxglutenfree.com. She lives in Aurora, Oregon on a very small farm with her husband and two children. She can be reached at firstname.lastname@example.org.
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