For Jax Lowell and some three million others like her, bread is not a necessity of life but very nearly poison. Lowell has celiac disease, a lifelong condition associated with an immune reaction to specific gluten proteins found in wheat, rye, barley and derivatives like oats.
A writer and fast-talking native New Yorker who now lives locally, Lowell spent years seeking medical advice, eventually dropping to 90 pounds and suffering two bone fractures from a lack of calcium. “The smart money was on lymphoma,” says Lowell of one faulty diagnosis.
CD is an autoimmune disorder that causes the immune system to go haywire and attack the body’s own tissues. Most patients have a family history of the disease. They also might have a family member with a similarly classified illness such as Type 1 diabetes, thyroid disease, inflammatory bowel disease, rheumatoid arthritis or multiple sclerosis.
Celiac disease is one of the most commonly underdiagnosed conditions in the United States, largely because its outward signs—severe weight loss, persistent indigestion and chronic diarrhea—appear only after the small intestine is damaged and the body can no longer absorb nutrients. CD affects the gastrointestinal tract, skin and joints, along with the reproductive and endocrine systems.
For now, treatment doesn’t come in the form of any pill or prescribed therapy. And those who seek out a diagnosis often get to that point with the help of a fleet of specialists.
As a research topic, celiac disease has become the next best thing since, well, sliced bread. Central to the hype is the way “dormant” genes are triggered into action—and how the body’s natural defenses are vulnerable to external environmental attacks.
University of Maryland researcher Alessio Fasano was the first to identify a mysterious human protein called zonulin, which CD sufferers have in abundance. Fasano published his findings last fall, prompting some experts to tout zonulin as the “molecule of the century” for its profound effect on the protective lining of the intestines in CD patients and its potential involvement in the gateway systems of other parts of the body.
Larazotide, a new drug used to block zonulin, is in the initial stages of human trials. And more research could lead to better treatments for everything from allergies and diabetes to heart attacks, strokes and cancer.
That’s the long-range view. A more pressing issue is the emergence of late-onset celiac disease, in which those who once tolerated gluten products suddenly develop an intolerance—and may not be aware of it. “More and more people are showing no symptoms at all,” says Keith Laskin, a gastroenterologist and the director of Paoli Hospital’s new Celiac Center. “Or the symptoms they do show are often confused with other illnesses like irritable bowel syndrome, acid reflux, even lupus.”
Paoli’s new center had its grand opening ceremony in March, with Fasano as the keynote speaker. Prior to that, Laskin had long been advising patients in a way that echoes the Celiac Disease Foundation’s slogan: “Are You the One?” The group’s awareness campaign points to the recent finding that CD affects 1 percent of the U.S. population.
Story continued on page 2 …
See page 3 for Myths and Facts about Celiac Disease …
“We recommend screenings for those with a family history,” says Laskin. “Those with a family history have about a 10 percent chance of developing the disorder, which often manifests after some form of trauma, such as an infection, a physical injury, pregnancy, severe stress
or surgery.”
Jax Lowell’s situation compelled her to write Against the Grain, one of the first books of its kind, published in 1995 and re-issued in 2005. “I was diagnosed in 1981, when many adult celiacs were lucky to be diagnosed at all,” she says. “I was very weak and had pernicious anemia.”
Lowell is also a novelist, poet, short-story writer and frequent contributor to Living Without magazine, a publication for people with a range of food and chemical intolerances. She’s also the author of The Gluten-Free Bible.
Lowell recently moved into a new Center City loft in what was once a bread factory. And her mother’s family name is Petitpain, French for “little bread.” She mentions both—with just a hint of irony—on her website, JaxLowell.com.
Even so, Lowell contends that her second-natured focus on maintaining a gluten-free diet is the extent of her daily thinking about celiac disease.
“I tell people not to be martyrs,” she says. “They don’t have to live without going out for dinner or going to parties. Just tell people what you need.”
Celiac disease is actually one of the world’s oldest illnesses, with references dating back to the first century A.D. Yet, any historical mentions of CD have been scattered about like so many bread crumbs left behind for the next person to find.
In the late 19th century, British physician Samuel Gee settled on a dietary prescription for the illness. As such, he’s considered the father of CD for his insights. Still, he made one crucial error, suggesting that ill celiac children be fed thinly sliced bread “toasted on both sides.”
Little, if any, other progress was made until shortly after World War II, when bread shortages in Europe led to a measurable drop in the death rate in children with CD. A Dutch pediatrician surmised that gluten was the trigger, and confirmed his theory after bread became available again and mortality rates rose.
In recent years, researchers have gone beyond diet. They now view CD as a disorder caused by a tricky combination of factors—environment, genetics and abnormalities in the small intestine.
These days, it’s hard to find a major supermarket that doesn’t sell at least some gluten-free products. There’s even a free iPhone application for CD sufferers. “There’s never been a better time to be gluten free,” says Lowell.
It’s hard to believe that, just a decade ago, doctors still categorized CD as a food allergy—one they believed was virtually nonexistent in the United States. In Europe, CD is the most common genetic disease, vigilantly monitored and guarded against in people of all ages. Italian studies show that the time span between first symptoms and diagnosis is no more than three weeks in that country. Here, the average is 10 years—and CD’s status as a food-trigger disease seems to have made it less real than many other medical conditions.
Continued on page 3, with Myths and Facts about Celiac Disease …
But we now know that celiac disease’s influence extends beyond the paradigm of coping in a new world of food allergen labeling and consumer protection. Indeed, its impact on the nation’s population has cemented its status as something far more than merely a medical inconvenience.
In his studies at the University of Maryland, Fasano discovered how zonulin opens up the protective lining of the small intestine, allowing indigestible gluten particles to seep into underlying tissue and incite immune system cells. With these new developments, he writes in a recent online edition of Scientific American, “We can begin to hope that this disease, which has followed humanity from the dawn of civilization, is facing its last century on Earth.”
To learn more about celiac disease, visit celiac.org and livingwithout.com.
Celiac Disease: Myth vs. Fact
Myth: Celiac disease is an allergy to wheat.
Fact: It’s an autoimmune disorder triggered by the ingestion of gluten, a major protein in wheat, rye and barley.
Myth: Eating too much bread and pasta can lead to CD.
Fact: Although gluten is the trigger, scientists now believe that CD is also caused by a triad of conditions, including genetic and environmental factors, and abnormalities in the small intestine.
Myth: You’ll grow out of it.
Fact: Until scientists discover a cure, CD is a lifelong condition requiring a gluten-free diet.
Myth: CD is a rare disorder.
Fact: It affects 1 in 100 people, or an estimated 3 million Americans.
Myth: CD causes permanent damage to the intestines.
Fact: Damage can be reversed with early diagnosis and a gluten-free diet.
Myth: The easiest way to know if you have CD is to remove gluten from your diet.
Fact: The only accurate way to know is through a blood test with a small bowel biopsy. Removing gluten from the diet before testing can actually lead to false results.
The Perils of Unchecked CD
Undiagnosed, celiac disease can cause the following side effects and health problems:
• Infertility or recurrent miscarriages.
• Dental enamel defects or, in children, permanent discoloration.
• Chronic diarrhea and weight loss.
• Failure to thrive in infants.
• Bone thinning in children, resulting in short stature and delayed puberty.
• The early onset of osteoporosis.
• Abdominal bloating and pain.
• Iron deficiency and severe anemia.
• Hair loss.
• Increased risk for intestinal lymphomas and other cancers.
• Decreased energy and irritability.
• Gall bladder malfunction.
• A blistering, itchy rash (dermatitis herpetiformis).
• Permanent darkened skin and scarring due to DH.
• Increased risk of hypothyroidism.
