Learning to Live With Celiac Disease

You may not know you have it, but celiac disease can rob the body of nutrients it needs to thrive.

Medically Reviewed by Louise Chang, MD on October 01, 2008
Written by Denise Mann
8 min read

Do you experience bouts of diarrhea from time to time?

What about abdominal cramping? Intestinal gas? Distention? How about occasional bloating?

Are you constipated ocasionally?

Has your doctor recently told you that you are anemic yet he or she can't seem to find a reason why your blood is lacking iron?

Have you had a voracious appetite yet still managed to lose weight?

If you answered "yes" to any of these questions (or even if you didn't), you may have celiac disease, an autoimmune intestinal disorder characterized by the inability to digest gluten. Gluten refers to the protein found in specific cereal grains such as all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), rye, barley, and triticale.

When individuals with celiac disease eat food with gluten, the villi (tiny hair-like projections in the small intestine that absorb nutrients from food) are damaged and do not effectively absorb basic nutrients including proteins, carbohydrates, fats, vitamins, minerals, and, in some cases, water and bile salts. Symptoms can include abdominal cramping, gas, distention and bloating, chronic diarrhea or constipation (or both), fatty stools, unexplained anemia or nutritional deficiency, and weight loss despite a large appetite.

But it doesn't stop there. Experts say these are just the classic symptoms. Other associated conditions and symptoms can include brittle bones or osteoporosis (due to the body's inability to absorb calcium and vitamin D), depression, weakness, lack of energy, infertility, and perhaps underachievement.

The good news is that going on a gluten-free diet can clear up these symptoms ASAP as well as stave off other long-term consequences of the disease.

You can't treat celiac disease if you don't know you have it, and experts tell WebMD that the disease is a hidden epidemic in the U.S.

According to the Celiac Disease Foundation, the disease affects one of 133 people, yet some statistics show as many as 97% of people are undiagnosed and it takes an about nine years for the average patient to receive a diagnosis of celiac disease.

"It's unclear if it's becoming more common or we can just diagnose it more," says Peter Green, MD, director of the Celiac Disease Center at Columbia University in New York City and author of Celiac Disease: A Hidden Epidemic.

"It occurs in 1% of the population in this country, and less than 5% of this 1% are diagnosed," explains Green, who is also a professor of clinical medicine at the College of Physicians and Surgeons at Columbia University and an attending physician at the Columbia University Medical Center.

"This underdiagnosis leads to it being more difficult for patients when they finally do get diagnosed because there isn't all the availability of gluten-free products," he says.

"In other countries like Finland, 50% of people are diagnosed," he says. And gluten-free choices are more readily available. For example, an ice cream parlor in Buenos Aires will list gluten-free ice creams, and you can order a gluten-free Big Mac at McDonald's in Helsinki, Finland.

"In other parts of the world, people have been more hip and alert to celiac disease," adds Jonathan D. LaPook, MD, an associate clinical professor of medicine at Columbia University Medical Center. "They are just picking it up more and there are wheat signs on menus, so it's not a big deal to walk into a restaurant and say I have to be 'gluten-free.'"

Another roadblock in diagnosing celiac disease is that its symptoms can be vague -- even nonexistent, LaPook explains.

"When I was in medical school, we were told you couldn't miss [diagnosing celiac disease] if you tried, but now we know that a majority of cases are asymptomatic [have no symptoms] or have minor symptoms," he says. "It can be ipsy-pipsy, very subtle, [marked by] a little diarrhea and a little cramping; who doesn't have that?"

That's true, Green says. "The problem is that physicians have not recognized the disease and that is probably because patients don't have the classical presentation. The disease is considered to be very common but the physicians are taught that they have to have diarrhea to consider diagnosis, and that's not true; celiac disease is more a multisystem disorder."

For example, "our experience is that many kids that get diagnosed have got an alphabet soup diagnosis including attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), and other cognitive issues," he says.

People with undiagnosed celiac disease tend to have fewer university degrees and fewer managerial jobs, which may possibly be related to childhood behavioral problems, according to a Finnish study.

This may be related to the increased prevalence of depressive and disruptive behavioral disorders described in teenagers with untreated celiac disease, Green says.

"In adults and kids iron deficiency -- even without anemia -- is a risk factor for poor performance on standardized math tests, so anemia can play a role as well," LaPook adds.

Diagnosing celiac disease may be part of the problem.

"It can be very tricky," LaPook says. The first step is typically blood tests looking for the presence and levels of certain antibodies. These tests may include anti-gliadin, anti-endomysial, anti-tissue transglutaminase antibodies, and total immunoglobulin A. If blood test results are positive, a person will then go for a biopsy of the small intestine to confirm the diagnosis and assess the degree of damage.

Sometimes blood tests are inconclusive, LaPook explains, and that's when we test for specific HLA (human leukocyte antigen) genes associated with celiac disease. If these genes are not present, it is unlikely that a person will develop celiac disease. A positive HLA test, however, does not mean that the individual has the condition, as these genes are common in the general population.

"About 30% of the general population has the genetic propensity for celiac disease and yet only about 1% get it, so most people with the genetic propensity don't have celiac disease, and the thinking is that there may be something that unmasks it, like a virus or other factors that we don't understand yet," LaPook says.

A diagnostic clue, however, is the presence of a skin problem called dermatitis herpetiformis, which is marked by itching and blisters. This typically goes hand-in-hand with celiac disease.

As far as who should get tested, anyone with symptoms should talk to their doctor about getting a blood test -- and perhaps anyone with any of the secondary conditions such as the brittle bone disease osteoporosis or infertility, experts tell WebMD.

In fact, a recent study in the Archives of Internal Medicine suggests that screening people with osteoporosis for celiac disease may help improve treatment and reduce the risks associated with fragile bones.

In the new study of 266 postmenopausal women with osteoporosis and 574 women without osteoporosis, nearly 4.5% of the women with osteoporosis tested positive for celiac disease; only 1% of the women without osteoporosis tested positive with blood tests. What's more, follow-up intestinal biopsies confirmed celiac disease in 3.4% of women with osteoporosis and only 0.2% of women without osteoporosis. And the more severe the celiac disease, the more severe the osteoporosis, the study showed.

If your doctor doesn't bring celiac disease up, it's up to you. LaPook suggests patients tell their doctors, "I was reading that it turns out thinking about celiac disease has changed in the last 30 years and the symptoms can be more subtle; I am wondering if I may have it. I hear it's a simple blood test to do a screen for it."

"If they have one of a host of autoimmune conditions such as type 1 diabetes, Sjogren's syndrome ... they should raise the question of this diagnosis with their doctor. And the only way to really demonstrate that you don't have it is to test for it," Green says.

Celiac disease often occurs in people with other autoimmune diseases. In fact, 8% to 10% of people with type 1 diabetes also have celiac disease, he says.

"It's a good diagnosis to get because you can get better just by hanging your hat on it. And there are no side effects to changing your diet," Green says - unless you are a kid.

"It's such an easy treatment, but if you are a kid and suddenly you can't have pizza or hot dog buns or hamburger buns, it's a big deal because there is nothing a kid wants more than to be like his peers," LaPook says.

That's where creative nutritionists like Dana Greene, MS, RD, a nutritionist in private practice in Boston, come in. Greene says living a gluten-free life just takes some adjustment. "It requires some lifestyle changes," she tells WebMD. The first step is learning to read labels and identify culprits that that may contain hidden gluten. "Hidden gluten can be found in unlikely foods such as cold cuts, soups, hard candies, soy sauce, many low or nonfat products, even licorice and jelly beans," she says.

"I like to tell people what they can eat -- not what they can't," she says.

Eating and baking gluten-free is getting easier and easier. For starters, commercial gluten-free breads and mixes with easy-to-digest base ingredients -- such as rice flours (white or brown) arrowroot, potato, and tapioca -- are available in most food stores today, she says. "Other fun 'yes foods' for kids with celiac disease include: pure cornmeal chips and tortillas, popcorn; vegetable and gluten-free nut-based chips, gelatin desserts; selected pudding mixes; and ice cream, sherbet or yogurt (without suspicious additives on the label)," she says. Harmful ingredients to be on the lookout for include:

  • unidentified starch
  • modified food starch
  • hydrolyzed vegetable protein (HVP)
  • hydrolyzed plant protein (HPP)
  • texturized vegetable protein (TVP)
  • binders
  • fillers
  • excipients
  • extenders
  • malt

Some over-the-counter and prescription medications as well as dietary supplements may contain gluten, states the Celiac Disease Foundation web site. Talk to your pharmacist.

"In place of wheat pasta, choose potatoes, buckwheat, brown rice, wild rice, or beans," she says. "Parents are always asking about healthy gluten-free snacks to put in their children's lunch box and I usually suggest peanuts and raisins, dried or fresh fruit, a small yogurt or a bag of potato chips for a treat."

Greene also advises parents of children with celiac disease to talk to the school's lunch staff. "Today school dietitians are very familiar with lactose intolerance, diabetes, and other health issues, so they know what it takes and are willing to accommodate special dietary needs without making a big fuss about it," she says. The Celiac Sprue Association web site offers printable letters with specific advice on school issues.

"I also tell parents to tell their child's teacher to let them know if there will be a birthday party or other special snack time in the classroom, so they can send something for their child to eat so he or she won't feel too left out," she says.

But diet may not be the only way to deal with celiac disease in the future, Peter Green says.

In the future, there may be drugs available to help people with celiac disease better digest gluten. "There is a considerable amount of research on drugs that may serve to help people, and while they may not replace a gluten-free diet, they may allow people to tolerate small amounts of gluten."

There is also some work going on involving genetic engineering of food to get rid of toxic components of wheat, he says.