Wheat Belly: Lose the Wheat, Lose the Weight and Find Your Path Back to Health (13 page)

BOOK: Wheat Belly: Lose the Wheat, Lose the Weight and Find Your Path Back to Health
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Is It Celiac Disease or Not? A True Story

Let me tell you about Wendy.

For more than ten years, Wendy struggled unsuccessfully with ulcerative colitis. A thirty-six-year-old grade school teacher and mother of three, she lived with constant cramping, diarrhea, and frequent bleeding, necessitating occasional blood transfusions. She endured several colo-noscopies and required the use of three prescription medications to manage her disease, including the highly toxic methotrexate, a drug also used in cancer treatment and medical abortions.

I met Wendy for an unrelated minor complaint of heart palpitations that proved to be benign, requiring no specific treatment. However, she told me that, because her ulcerative colitis was failing to respond to medications, her gastroenterologist advised colon removal with creation of an ileostomy. This is an artificial orifice for the small intestine (ileum) at the abdominal surface, the sort to which you affix a bag to catch the continually emptying stool.

After hearing Wendy’s medical history, I urged her to try wheat elimination. “I really don’t know if it’s going to work,” I told her, “but since you’re facing colon removal and ileostomy, I think you should give it a try.”

“But why?” she asked. “I’ve already been tested for celiac and my doctor said I don’t have it.”

“Yes, I know. But you’ve got nothing to lose. Try it for four weeks. You’ll know if you’re responding.”

Wendy was skeptical but agreed to try.

She returned to my office three months later, no ileostomy bag in sight. “What happened?” I asked.

“Well, first I lost thirty-eight pounds.” She ran her hand over her abdomen to show me. “And my ulcerative colitis is nearly gone. No more cramps or diarrhea. I’m off everything except my Asacol.” (Asacol is a derivative of aspirin often used to treat ulcerative colitis.) “I really feel great.”

In the year since, Wendy has meticulously avoided wheat and gluten and has also eliminated the Asacol, with no return of symptoms. Cured. Yes,
cured.
No diarrhea, no bleeding, no cramps, no anemia, no more drugs, no ileostomy.

So if Wendy’s colitis tested negative for celiac antibodies, but responded to—indeed, was
cured
by—wheat gluten elimination, what should we label it? Should we call it antibody-negative celiac disease? Antibody-negative wheat intolerance?

There is great hazard in trying to pigeonhole conditions such as Wendy’s into something like celiac disease. It nearly caused her to lose her colon and suffer the lifelong health difficulties associated with colon removal, not to mention the embarrassment and inconvenience of wearing an ileostomy bag.

There is not yet any neat name to fit conditions such as Wendy’s, despite its extraordinary response to the elimination of wheat gluten. Wendy’s experience highlights the many unknowns in this world of wheat sensitivities, many of which are as devastating as the cure is simple.

Beyond those listed above, there are literally hundreds of conditions that have been associated with celiac disease and/or immune-mediated gluten intolerance, though less commonly. Gluten-mediated reactions have been documented to affect every organ in the human body, sparing none. Eyes, brain, sinuses, lungs, bones … you name it, gluten antibodies have been there.

In short, the reach of gluten consumption consequences is mind-bogglingly wide. It can affect any organ at any age, showing itself in more ways than Tiger Woods had mistresses. Thinking of celiac disease as just diarrhea, as is often the case in many doctors’ offices, is an enormous, and potentially fatal, oversimplification.

WHEAT AND BUNGEE JUMPING

Eating wheat, like ice climbing, mountain boarding, and bungee jumping, is an extreme sport. It is the only common food that carries its own long-term mortality rate.

Some foods, such as shellfish and peanuts, have the potential to provoke acute allergic reactions (e.g., hives or anaphylaxis) that can be dangerous in the susceptible, even fatal in rare instances. But wheat is the only common food that has its own measurable mortality rate when observed over years of consumption. In one large analysis over 8.8 years, there was up to 29.1 percent increased likelihood of death in people with celiac disease or who were antibody-positive without celiac disease, compared to the broad population.
35
The greatest mortality from wheat gluten exposure was observed in the twenty-year-old and younger age group, followed by the twenty to thirty-nine group. Mortality also increased
across all age groups since 2000; mortality in people with positive antibodies to wheat gluten but
without
celiac has more than doubled compared to mortality prior to 2000.

Green peppers don’t result in long-term mortality, nor do pumpkin, blueberries, or cheese. Only wheat. And you don’t have to have symptoms of celiac disease for this to happen.

Yet wheat is the food our own USDA encourages us to eat. I personally don’t believe that it would be a stretch for the FDA (which now regulates tobacco) to require a warning on wheat-containing products, much as they require for cigarettes.

Imagine:

S
URGEON
G
ENERAL’S
W
ARNING:
Wheat consumption in all forms poses potentially serious threats to health.

In June 2010, the FDA passed a regulation requiring tobacco manufacturers to remove the deceptive “light,” “mild,” and “low” descriptors from cigarette packages, since they are all every bit as bad as any other cigarette. Wouldn’t it be interesting to see similar regulation highlighting that
wheat is wheat,
regardless of “whole grain,” “multigrain,” or “high-fiber”?

Our friends across the Atlantic published an extraordinary analysis of eight million residents of the United Kingdom, identifying more than 4,700 people with celiac disease, and comparing them to five control subjects for every celiac participant. All participants were then observed for three and a half years for the appearance of various cancers. Over the observation period, participants with celiac disease showed 30 percent greater likelihood of developing some form of cancer, with an incredible one of every thirty-three celiac participants developing cancer despite the relatively short period of observation. Most of the cancers were gastrointestinal malignancies.
36

Observation of more than 12,000 Swedish celiac sufferers showed a similar 30 percent increased risk for gastrointestinal cancers. The large number of participants revealed the broad variety of gastrointestinal cancers that can develop, including
malignant small intestinal lymphomas and cancers of the throat, esophagus, large intestine, hepatobiliary system (liver and bile ducts), and pancreas.
37
Over a period of up to thirty years, the investigators tabulated a doubling of mortality compared to Swedes without celiac disease.
38

You’ll recall that “latent” celiac disease means having one or more positive antibody tests for the disease but without evidence of intestinal inflammation observed via endoscopy and biopsy—what I call immune-mediated gluten intolerance. Observation of 29,000 people with celiac disease over approximately eight years showed that, of those with “latent” celiac disease, there was 30 to 49 percent increased risk for fatal cancers, cardiovascular disease, and respiratory diseases.
39
It may be latent, but it ain’t dead. It’s very much alive.

If celiac disease or immune-mediated gluten intolerance goes undiagnosed, non-Hodgkin’s lymphoma of the small intestine can result, a difficult-to-treat and often fatal condition. Celiac sufferers are exposed to as much as forty-fold increased risk for this cancer compared to nonceliacs. Risk reverts to normal after five years of gluten removal. Celiac sufferers who fail to avoid gluten can experience as much as seventy-seven-fold increased risk for lymphoma and twenty-two-fold greater risk for cancers of the mouth, throat, and esophagus.
40

Let’s think about this: Wheat causes celiac disease and/or immune-mediated gluten intolerance, which is underdiagnosed by an incredibly large margin, since only 10 percent of celiac sufferers know they have the disease. That leaves the remaining 90 percent ignorant. Cancer is a not-uncommon result. Yes, indeed, wheat causes cancer. And it often causes cancer in the unsuspecting.

At least when you bungee jump off a bridge and hang at the end of a 200-foot cord, you know that you’re doing something stupid. But eating “healthy whole grains” … who would guess that it makes bungee jumping look like hopscotch?

DON’T EAT COMMUNION WAFERS WITH LIPSTICK ON

Even knowing the painful and potentially severe consequences of eating gluten foods, celiac sufferers struggle to avoid wheat products, although it seems like an easy thing to do. Wheat has become ubiquitous, often added to processed foods, prescription drugs, even cosmetics. Wheat has become the rule, not the exception.

Try to eat breakfast and you discover that breakfast foods are a land mine of wheat exposure. Pancakes, waffles, French toast, cereal, English muffins, bagels, toast … what’s left? Look for a snack, you’ll be hard pressed to find anything without wheat—certainly not pretzels, crackers, or cookies. Take a new drug and you may experience diarrhea and cramping from the tiny quantity of wheat in one small pill. Unwrap a stick of chewing gum and the flour used to keep the gum from sticking may trigger a reaction. Brush your teeth and you may discover there is flour in the toothpaste. Apply lipstick and you can inadvertently ingest hydrolyzed wheat protein by licking your lips, followed by throat irritation or abdominal pain. At church, taking the sacrament means a wafer of … wheat!

For some people, the teensy-weensy quantity of wheat gluten contained in a few bread crumbs or the gluten-containing hand cream collected under your fingernails is enough to trigger diarrhea and cramps. Being sloppy about gluten avoidance can have dire long-term consequences, such as small intestinal lymphoma.

So the celiac sufferer ends up making a nuisance of herself at restaurants, grocery stores, and pharmacies, having to inquire constantly if products are gluten-free. Too often, the minimumwage salesclerk or overworked pharmacist has no idea. The nineteen-year-old waitress serving your breaded eggplant usually doesn’t know or care what gluten-free is. Friends, neighbors, and family will see you as a fanatic.

The celiac sufferer therefore has to navigate the world constantly
on the lookout for anything containing wheat or other gluten sources such as rye and barley. To the dismay of the celiac community, the number of foods and products containing wheat has
increased
over the past several years, reflective of the lack of appreciation of the severity and frequency of this condition and the growing popularity of “healthy whole grains.”

The celiac community offers several resources to help the celiac sufferer succeed. The Celiac Society (
www.celiacsociety.com
) provides a listing and search feature for gluten-free foods, restaurants, and manufacturers. The Celiac Disease Foundation (
www.celiac.org
) is a good resource for emerging science. One danger: Some celiac disease organizations obtain revenue from promotion of gluten-free products, a potential diet hazard that, while gluten-free, can act as “junk carbohydrates.” Nonetheless, much of the resources and information provided by these organizations can be helpful. The Celiac Sprue Association (www .csaceliacs.org), the most grassroots effort, is the least commercial. It maintains a listing and organizes regional groups for support.

CELIAC DISEASE “LITE”

While celiac disease affects only 1 percent of the population, two common intestinal conditions affect many more people: irritable bowel syndrome (IBS) and acid reflux (also called reflux esophagitis when esophageal inflammation is documented). Both may represent lesser forms of celiac disease, what I call celiac disease “lite.”

IBS is a poorly understood condition, despite its frequent occurrence. Consisting of cramping, abdominal pain, and diarrhea or loose stools alternating with constipation, it affects between 5 and 20 percent of the population, depending on definition.
41
Think
of IBS as a confused intestinal tract, following a disordered script that complicates your schedule. Repeated endoscopies and colonoscopies are typically performed. Because no visible pathology is identified in IBS sufferers, it is not uncommon for the condition to be dismissed or treated with antidepressants.

Acid reflux occurs when stomach acid is permitted to climb back up the esophagus due to a lax gastroesophageal sphincter, the circular valve meant to confine acid to the stomach. Because the esophagus is not equipped to tolerate acidic stomach contents, acid in the esophagus does the same thing that acid would do to your car’s paint job: It dissolves it. Acid reflux is often experienced as common heartburn, accompanied by a bitter taste in the back of the mouth.

There are two general categories of each of these conditions: IBS and acid reflux
with
positive markers for celiac disease, and IBS and acid reflux
without
positive markers for celiac disease. People with IBS have a 4 percent likelihood of testing positive for one or more celiac markers.
42
People with acid reflux have a 10 percent chance of having positive celiac markers.
43

Conversely, 55 percent of celiac sufferers have IBS-like symptoms and between 7 and 19 percent have acid reflux.
44,
45,
46
Interestingly, 75 percent of celiac sufferers obtain relief from acid reflux with wheat removal, while nonceliac people who do not eliminate wheat nearly always relapse after a course of acid-suppressing medication but continued gluten consumption.
47
Could it be the wheat?

Eliminate wheat, acid reflux improves, symptoms of IBS improve. Unfortunately, this effect has not been quantified, though investigators have speculated on how large a role gluten plays in nonceliac sufferers of IBS and acid reflux.
48
I have personally witnessed complete or partial relief from symptoms of IBS and acid reflux with gluten removal from the diet many hundreds of times, whether or not celiac markers are abnormal.

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