Celiac disease is a digestive disorder characterized by a toxic reaction to gluten, the protein found in certain grains. Celiac disease is hereditary, meaning it’s in your gene pool; chronic, meaning it won’t ever go away; and autoimmune, meaning it causes the body to attack itself.
It’s important to remember that celiac disease is not a food allergy, and you can’t pop pills to “cure” it. The only known treatment is a gluten-free diet for life, a subject we will explore in much more detail later.
If you have celiac disease (which is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy), gluten damages the tiny, hairlike villi lining your small intestine and prevents your body from absorbing the nutrients it depends on to survive. The nutritional deficiencies that result from this chronic malabsorption can lead to a staggering range of serious health problems.
While scientists once considered celiac disease an extremely rare childhood disease, they now know that it’s one of the most common genetic conditions in the world. In fact, researchers believe celiac disease might affect as much as 1 percent of the population worldwide. In this country, roughly 3 million people, or 1 out of every 133 Americans, have the disease. A great many more people might have what’s known as gluten sensitivity, which is a less severe reaction to gluten.
What makes these numbers even more alarming is that less than 5 percent of those who have celiac disease know it! In the United States, it takes an average of nine to eleven years to diagnose a celiac patient after the first onset of symptoms. Compare that to Europe, where diagnosis often takes place within a year of the first appearance of symptoms.
The diverse and deceptive symptoms of celiac disease make it exceptionally difficult to diagnose, but if you even remotely suspect that you might have this condition, waste no time in talking to your doctor about your concerns. Untreated celiac disease can take a severe toll on your health, leading to a number of complications including intestinal cancers, Type 1 diabetes, osteoporosis, miscarriage, and infertility.
The longer a person who has celiac disease consumes gluten, the more likely these conditions are to develop and worsen. Even if you are symptom-free, you are still not off the hook. (See Chapter 3 for more on this.) Getting tested for celiac disease could be one of the most important decisions you will ever make.
All excellent questions—and ones that some of the most brilliant doctors and researchers in the world are still scrambling to answer! Our bodies work in mysterious ways, and the medical community still has a lot to learn about the causes and triggers of celiac disease. This is what we know, to date.
Who: While people of all ages, genders, and ethnicities can have celiac disease, it’s more prevalent in certain populations, particularly in people of Northern European descent. (In Finland, celiac disease is so widespread that every McDonald’s in the country offers gluten-free buns!)
Because celiac disease is genetic, the rates are much higher for people with celiac family members. If a first-degree relative—a parent, sibling, or child—has celiac disease, your chances of getting diagnosed are about 1 in 22. If a second-degree relative—an uncle, or cousin, or grandparent—is affected, your odds are roughly 1 in 39.
Why: To have celiac disease, you must carry the gene for it. We also know that people suffering from other autoimmune disorders—Type 1 diabetes, thyroid disease, Down syndrome, Sjögren’s syndrome, ulcerative colitis, and many others—have higher incidences of celiac disease. Doctors believe that celiac disease can make people more susceptible to these conditions (with the exception of Down syndrome), even though those disorders are usually flagged first, while all too often the primary cause—celiac disease—goes unnoticed, undiagnosed, and untreated. This neglect only worsens the related autoimmune conditions in the long run.
When: A person can “come down with” celiac disease at any age, but doctors have identified several peak diagnostic periods. Many celiac patients are diagnosed in infancy, between the ages of nine and twelve months. Most likely, these diagnoses occur because parents pay such close attention to food and allergen introduction in their infants’ menus. Other people with celiac disease do not show symptoms until decades later, generally in early adulthood.
Carrying the gene for celiac disease is not necessarily enough to activate the condition. Other factors play a role as well, some better understood than others. For full-blown celiac disease to develop, you must typically meet the following three criteria:
The first two are clear as day. How exactly do experts define Number 3? Well, they believe that many different events might qualify as “trauma”: surgery, pregnancy, childbirth, a viral infection, a serious physical injury, or any sort of severe emotional stress.
I have no doubt that, in my case, the trigger was the bacterial intestinal infection I came down with in Belize during my sophomore year of college. That infection clicked on my celiac disease, and my system has never been the same since. The main problem was not my eventual diagnosis but the amount of time I spent searching for it—ten long years. Five years of improper nourishment, and of symptoms that ruled my days. Ten years I can never get back. Ten years that will affect the rest of my life.
There are no “textbook” symptoms of celiac disease, which at least partially explains why it’s so pervasively underdiagnosed. Celiac symptoms vary widely, and they aren’t always gastrointestinal in nature. Some symptoms are constant; others are occasional. And as I mentioned earlier, some celiacs have no symptoms at all.
For these and other reasons, doctors frequently confuse celiac disease with other conditions like irritable bowel syndrome, acid reflux, Crohn’s disease, intestinal infections, and chronic fatigue syndrome. (Celiac disease is a multisystem disorder, with symptoms that are just too wide-ranging to meet any tidy diagnostic checklist.)
Any of the following problems might be an indicator of celiac disease:
Patients might have other sensitivities as well, including lactose intolerance, an allergy to casein, or a peanut allergy. Chemical sensitivities are also common. Dermatitis herpetiformis (page 24) is a form of celiac disease that manifests itself in the skin, in persistent rashes and bumps that itch, redden, and/or peel.
If you don’t absorb nutrients over a long period of time, it’s only logical that you will develop a number of lasting health problems. Without the proper fuel, you cannot expect your body to stay strong and healthy. Untreated celiac disease has been linked with all of these health issues:
Doctors have also seen evidence that gluten sensitivity and celiac disease can potentially influence mood and behavior disorders like ADHD, depression, and bipolar disorder. Experts are currently studying the link between gluten and autism spectrum disorders, as there is strong evidence that removing gluten from the diet can vastly improve the condition.
The medical community is a long shot away from where it needs to be when it comes to the diagnosis and treatment of celiac disease. Underdiagnosis and misdiagnosis continue to be huge problems, especially in this country.
My own story, I’m afraid, is all too typical of what other people experience: For years after diagnosing myself with celiac disease, I struggled to find a doctor who would listen to my theories. When I told doctors—and there were lots of them—that I thought I had celiac disease, they looked at me as if I were crazy, or speaking a foreign language. Why were all these well-recommended doctors just flat-out dismissive of a condition that I knew was common all across the globe?
The answer, according to Dr. Green, is that too many physicians in America just don’t know enough about celiac disease. “The textbooks are out of date,” he says. “There’s not a lot of education about the disease, and there’s very little research being published in medical journals on the subject—doctors just aren’t taught about it in this country.”
In Dr. Green’s home country of Australia, he said, “Roughly thirty to forty percent of people with celiac disease are diagnosed—about the same as in Italy and Ireland. In this country, less than five percent of those who have celiac disease get diagnosed.”
What’s behind these terribly low diagnostic rates? “One of the reasons celiac disease is so grossly underdiagnosed in this country,” says Dr. Green, “is that the pharmaceutical industry has such a major role in the direction of health care here. In many countries around the world, where there are national health plans, doctors are actively encouraged to diagnose celiac disease. In this country, the pharmaceutical industry provides eighty percent of the money for medical research. It also provides a lot of money for postgraduate education, and there just aren’t any drug companies that are interested in researching celiac disease. There’s basically no money in it—no drug company will provide funds for the research.”
Simply put: Since there are no drugs to treat celiac disease, pharmaceutical companies stand to gain no profits from encouraging its diagnosis.
“It’s a general problem in our culture,” Dr. Weil said of these lopsided priorities, “and I think it’s both that people don’t have the information and motivation to take responsibility for their well-being, and that the system is economically locked into paying for interventions with drugs, not for lifestyle counseling. The whole system is dysfunctional. It’s all one big knot, and I don’t know where you begin to push. In general, we’re so locked into using pharmaceuticals to treat everything that when we come across conditions that we can’t treat with drugs, we tend to pay less attention to them.”
It might require some perseverance on your part to get an accurate diagnosis. First off, you should seek out a physician who is willing to investigate a disease that no medication can cure. Because the standard battery of blood tests that doctors run does not check for gluten intolerance or celiac disease, you need to be very precise about requesting tests that will. According to Dr. Green, many people in the United States get proper diagnoses only after they specifically ask their doctors for these tests.
“Patients often tell me,” he says, “that when they ask their doctors to run tests for celiac disease, the doctor will say that they couldn’t possibly have it: ‘You’re too tall, you’re too fat, you’re black, you’re Jewish, you’re not Scandinavian.’ Then the doctor calls back to say the patient has actually tested positive—surprise, surprise. That’s the only reason a lot of patients are getting diagnosed, because they’re insisting on these tests.”
Step 1 to diagnosis: Celiac panel. A celiac panel is a blood test which is generally the first step in diagnosing celiac disease, although it cannot deliver a conclusive celiac diagnosis. What it can do is rule out celiac disease, or determine where you fall on the risk spectrum. It tests for the presence of these antibodies associated with celiac disease:
Step 2: Endoscopy and small tissue biopsy is the next step in diagnosing celiac disease. You should only go through this invasive procedure if the celiac panel has shown your risk level to be high. To perform this biopsy, doctors insert a tube down your throat, which they use to remove a tiny piece of tissue from your small intestine. They then examine this tissue sample to determine whether your villi are damaged.
You should also be aware that gluten must be present in your system for most of the endoscopy and biopsy to provide accurate results. If you’ve diagnosed yourself with celiac disease and have already given up gluten on your own, your doctor might not be able to assess the results properly—but this is not always a good reason for going back on gluten!
Some doctors may request that, for a conclusive diagnosis, you embark on what is known as a “gluten challenge,” which entails, according to Dr. Green, “eating the equivalent of about four slices of bread a day for a few months.” A gluten challenge might not be necessary if you have yet to give up gluten. In that case, just continue eating your regular diet before going through the tests.
Step 3: Genetic testing is recommended if both Steps 1 and 2 prove inconclusive, which sometimes does happen. Doctors can test for the presences of the specific HLA (human leukocyte antigen) genes associated with celiac disease (DQ2/DQ8). While scientists don’t yet know the exact genes involved in celiac disease, they do know that you must have DQ2 and/or DQ8 to develop it.
I encourage you to request these tests if you have any reason to suspect that you might have celiac disease. A proper diagnosis will put you on a path of well-being and steer you toward health… It could even save your life.
Fortunately, a gluten-free diet can seriously reduce your susceptibility to all of the long-term health issues associated with celiac disease. Once you get a proper diagnosis, you can finally begin to take charge of your health again. You will feel like a new person in no time at all, and to get there, all you have to do is go G-free!