Authors: Rita Baron-Faust,Jill Buyon
The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life (35 page)
Celiac disease affects each person differently. You may have more diarrhea and abdominal pain, while another woman may have anemia or bone loss as signs of malabsorption. Some women may have no symptoms at all; the undamaged parts of their small intestine are able to absorb enough nutrients to prevent GI problems or malabsorption. This hidden (
occult
) disease may contribute to the notion that celiac disease is rare in this country, says Dr. Green. It’s estimated that 17 percent of Americans with celiac aren’t even aware they have it.
But even people with no symptoms are at risk for complications, including certain cancers (see
page 282
).
The classic symptoms of celiac include diarrhea, flatulence, weight loss, and fatigue. If celiac is severe and involves most of the small intestine, fat absorption will also be impaired, and fat goblets may appear in stool (
steatorrhea
)
and there may be oil floating in the toilet. Some people may experience constipation with celiac.
Manifestations of celiac can also depend on specific areas of the intestine that are affected. When the duodenum and nearby parts of the small intestine are involved, iron is poorly absorbed, leading to iron-deficiency anemia. This is also the area where fat-soluble vitamins—A, D, E, and K—are taken in, and celiac disease may cause them to be poorly absorbed as well. Vitamin B
12
is absorbed in the furthest part of the small intestine (the ileum), which is less frequently involved in celiac disease. But if the disease causes a deficiency of vitamin B
12
, it can lead to macrocytic anemia. Poor absorption of calcium and vitamin D leads to bone loss. In serious, untreated celiac disease, women can develop severe malnutrition, osteoporosis, and even malignant tumors of the small intestine (see
page 282
).
“The classical presentation is uncommon in this country, and many people might be misdiagnosed with irritable bowel syndrome. One study from London found that one in 20 people diagnosed with IBS might actually have celiac disease. Iron-deficiency anemia may be blamed on menstrual blood loss when some women might have celiac disease,” remarks Dr. Green. “With women there may be a delay in diagnosis because they are seen as a complaining patient, they’re told, ‘It’s all in your head’ or ‘It’s irritable bowel syndrome.’ Gastroenterologists are taught that IBS is the most common diagnosis, and if they see a woman with altered bowel habits and all the other manifestations, they may not think of celiac disease.”
Celiac disease can manifest at any time in life. “Kids can get diagnosed and they go on a gluten-free diet, and many years ago people were told they ‘grew out of it.’ But that was because during adolescence they tolerated going back to gluten. Then later on in life they get rediagnosed and may present with osteoporosis or a malignancy. So making this diagnosis is important,” says Dr. Green.
You may develop a rash as a consequence of gluten intolerance. The itchy, blistering rash—dermatitis herpetiformis—affects the arms, legs, trunk, and scalp. Less commonly, there may be leg ulcerations.
Some people are
allergic
to wheat and have classic allergy symptoms within minutes or hours of eating wheat products, including a runny nose (
allergic rhinitis
), an itchy rash (
contact urticaria
), asthma-like wheezing (
baker’s asthma
), and in severe cases,
anaphylaxis
, a potentially deadly reaction where the throat swells and blocks breathing.
Other people are not allergic to wheat but are
intolerant
to gluten, and have the same symptoms as celiac but without the intestinal damage or the antibodies. This is called
non-celiac gluten sensitivity (NCGS)
, which, like wheat allergy, is among a spectrum of gluten-related disorders.
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“However, it’s not clear that gluten that is causing the problem,” remarks Dr. Green. Some studies suggest that NCGS stems from an
innate
immune response, one that’s built into some people’s immune systems, rather than an
adaptive
immune response to foreign antigens, as in autoimmune disease.
Diagnosing celiac disease can be difficult because some symptoms are similar to irritable bowel syndrome, NCGS, Crohn’s disease, ulcerative colitis, diverticular disease, intestinal infections, chronic fatigue syndrome, and depression. Some of those diseases, such as IBS, may also coexist in women with celiac.
The longer you remain undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. In Italy, where celiac disease is common, screening is routine, says Dr. Green. In the United States, where celiac has been considered rare, the time between the first symptoms and a diagnosis averages about 10 years.
“It’s actually an easy diagnosis to make. Most people with celiac test positive for antibodies to gliadin, which is the part of wheat that people mount the immunological reaction to. Then you test for tissue autoantigens. Those tests are widely available. If they are positive, the next step is a small intestinal biopsy done with endoscopy,” explains Dr. Green. Because celiac disease is hereditary, first-degree family members—your parents, siblings, and children—should also be tested, he adds.
Additional tests are done to detect complications of celiac, such as anemia and osteoporosis.
Antigliadin antibodies
are present in up to 40 percent of people with celiac disease, but they are not specific to celiac; they can also be found in people
with small-bowel Crohn’s disease and, in low amounts, in the general population. However, antigliadin antibody tests are no longer available and have been replaced by the following more specific tests.
According to the 2013 guidelines from the American College of Gastroenterology (ACG),
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a confirmed diagnosis of CD should be based on a combination of a medical history, physical exam, blood tests, and examination and biopsies of the upper part of the digestive tract.
Anti-tissue transglutaminase antibody immunoglobulin A (tTG IgA)
is the most sensitive and specific blood test for celiac test, especially in people at high risk. Tests for tTG IgA can also be used to monitor the disease. TTG levels should fall if you stick to a gluten-free diet.
Deamidated gliadin peptide antibodies (anti-DGP)
may be positive in some people with celiac who test negative for anti-tTG (especially children younger than two).
Antiendomysium (EMA)
antibodies recognize parts of smooth muscle tissue in the esophagus and the upper part of the small intestine and are considered specific for celiac disease.
Upper endoscopy with small bowel biopsy
is considered the gold standard for diagnosing celiac disease. Under sedation (to make you more comfortable and quiet your gag reflex) a long, thin hollow tube called an endoscope is passed through the mouth, esophagus, and stomach into the small intestine. Small samples of tissue from the upper area of the small intestine (duodenum) are taken with instruments passed through the endoscope. In celiac disease the biopsy will reveal atrophy of the villi. The test takes about 10 minutes, and no special preparation is needed. Small-intestine biopsy is also done to test the effectiveness of a gluten-free diet; damage to the small intestine is often healed if the diet is followed carefully.
New guidelines in Europe propose making a diagnosis in children without a biopsy. Under these guidelines, children must have symptoms, plus a tTG IgA antibody level over 10 times normal and, on a second blood draw, show positive tests for EMA and celiac-related genes. This approach has yet to be validated in children or adults.
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A complete blood count (CBC)
includes a count of the iron-carrying red blood cells (RBCs) and
hemoglobin
, the component in red blood cells that transports iron. A low red blood cell count and low hemoglobin diagnose iron-deficiency anemia, caused by malabsorption of iron from the small
intestine. Women normally have lower levels of hemoglobin than men, between 12 and 16 grams of hemoglobin per deciliter of blood (g/dL). In
macrocytic anemia
, caused by malabsorption of vitamin B
12
, red blood cells will become enlarged and crowd out normal RBCs. Borderline deficiency of vitamin B
12
is considered to be 258 picomoles per liter of blood (pmol/L); clinical deficiency is a B
12
level of 148 pmol/L or below.
Dual-energy x-ray absorptiometry (DEXA)
measures bone density and can detect osteoporosis, a frequent complication of celiac disease. DEXA is a painless test that uses very low doses of radiation. You lie on a table with your legs elevated while a special x-ray device slowly moves up and down above you, taking pictures of your hips and spine to measure bone density at key areas, including the vertebrae in the lower spine and the upper part of the thigh (femur) inside the hip joint. The test takes around 20 minutes.
You get DEXA results in two numbers: the T-score and the Z-score. The Z-score compares your
bone mineral density (BMD)
to that of women in your age and ethnic group (or men, as the case may be), and a T-score compares your BMD to the average for Caucasians between the age of 25 and 35, when bone density is at its peak. These scores are reported as standard deviations (SD) from the norm in each group, which is set at zero. You can be above or below, plus or minus, the mean. The more important reading is the T-score. You’re considered to have osteoporosis if your BMD is 2.5 standard deviations below the mean for young adult women; a T-score between −1 and −2.5 standard deviations below the peak bone mass is considered to be mild bone loss.
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The only real treatment for celiac disease is a gluten-free diet. Technically, “gluten” is a mixture of proteins that occur naturally in wheat, rye, barley, and crossbreeds of these grains.
So a “gluten-free” diet means avoiding foods that contain wheat (including
Kamut
, also called khorasan;
spelt
, an older form of wheat; and
triticale
, a blend of rye and wheat), rye, and barley—that includes most grains, pastas, cereals, and breads, as well as foods containing fillers made from grain.
Instead, choose whole grain foods that list whole grains, such as brown rice, whole corn, millet, sorghum, wild rice, teff, amaranth, quinoa, or gluten-free oats and buckwheat, as the first ingredient.
You need to follow this diet even if you don’t have GI symptoms, since damage may be occurring silently.
Within days of starting a gluten-free diet, your symptoms start to ease and the condition of the small intestine begins to improve. Within three to six months, the small intestine is usually completely healed—meaning the villi are intact and working (in older adults, this may take up to two years). An endoscopic small-intestine biopsy can determine whether you’re responding to the diet.
These days, gluten-free products are easily found in most grocery stores, and restaurants increasingly offer gluten-free menu choices, even pizza.
Many gluten-free products (including breads, pastas, crackers, and the like) are made with corn, rice, soy, sorghum, or chestnut flower.
By law,
packaged foods
must contain less than 20 ppm (parts per million) of gluten to be labeled “gluten-free.”
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That’s the lowest level that can be detected by current technology.
A “gluten-free” product cannot contain
any
type of wheat, rye, barley, or crossbreeds of these grains (like
triticale
), or an ingredient derived from these grains that has not been processed to remove gluten. Even if an ingredient
has
been processed to eliminate gluten, it must still meet the 20 ppm cutoff. That goes for any product that claims to be “free of gluten,” “without gluten,” or “contains no gluten.” Foods such as bottled spring water, fruits and vegetables, and eggs can also be labeled “gluten-free” if they inherently don’t have any gluten in them, the FDA explains.
But you still need to read ingredient lists carefully.
Ingredients derived from grain may not always be obvious. For example,
malt
is a common ingredient used to give foods flavor; you may not know it’s made from barley. Another common ingredient,
hydrolyzed vegetable protein
, is actually made from grain. On the other hand,
buckwheat
may have wheat in its name, but it’s a grain that doesn’t contain gluten.
Gluten can even be found in medications. The bulk of a pill or capsule is filler, or binder, usually cornstarch or wheat starch. So people with celiac are advised to check labels on over-the-counter and prescription drugs, as well as supplements (which are regulated as foods not drugs). Gluten can lurk
anywhere, notes Dr. Green. “A surprising source of gluten is communion wafers.” Many over-the-counter medication labels now specify if the preparation is gluten free.
What about “take-out” food or restaurant meals?
This gets a bit tricky. While the FDA rule only applies to packaged foods, which may also be sold for take-out, restaurants that make gluten-free claims on their menus should be consistent with the FDA’s definition of “gluten-free.”
Before ordering anything, you’ll need to ask servers at each restaurant what they
mean
when they say “gluten-free.” (For example, is a food just “wheat-free”?) You also need to ask what’s in a particular dish and how it’s prepared.
Eating even the smallest amount of gluten could trigger damage to the small intestine. So if you have celiac disease, you’ll need to educate yourself about safe food ingredients.
It is essential to see a dietitian after diagnosis of celiac disease and establish an ongoing relationship.
For one thing, it’s not only important to know what
not
to eat—but also
what to eat
. A gluten-free diet can be low in fiber, vitamins, and minerals. So read the Nutrition Facts label to choose gluten-free foods that have the most grams of fiber per serving. Choose gluten-free refined grain-based products that are enriched or fortified with iron and B vitamins, and make sure you eat foods that are good sources of calcium, such as low-fat milk (or calcium fortified gluten-free soy milk), nonfat yogurt, and calcium processed tofu. A nutritionist can also keep you up to date about issues such as potential toxins in rice and corn.
In addition to a gluten-free diet, you may also need added pancreatic enzymes to aid digestion. “When you eat, the gut secretes hormones that stimulate the pancreas to produce enzymes needed for digestion. If you have celiac disease you don’t secrete these hormones, and therefore the pancreas doesn’t respond well when you eat. So if people are feeling unwell at diagnosis, we give them pancreatic enzymes,” explains Dr. Green.
A small percentage of people with celiac don’t respond to a gluten-free diet; their small intestines may be so damaged that they can’t heal. Some people with celiac develop an associated autoimmune disease,
lymphocytic colitis
. “The intestine looks normal endoscopically, but on biopsy is found to have lymphocytic infiltration. And that’s a cause of failure to respond to a
gluten-free diet,” says Dr. Green. Other people may have such severe intestinal damage that they can’t absorb enough nutrients to maintain health and may need intravenous supplementation. “Some patients have refractory, nonresponsive celiac disease, and they may require steroids or immunosuppressants. These include prednisone or azathioprine,” he adds.
Many Americans believe gluten-free foods are healthier and claim they feel better and lose weight on such a diet. If you don’t have celiac disease, gluten allergies, or sensitivity, there’s no evidence that a gluten-free diet can benefit people in the general population, according to the American Academy of Nutrition and Dietetics.
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The academy does note that there are some data to suggest that a gluten-free diet can help ease gastrointestinal symptoms of other autoimmune diseases, such as lupus, type 1 diabetes, and thyroiditis.
Related disorders include
collagenous sprue
, which resembles celiac disease, but a thick layer of collagen is deposited beneath the inner lining of the intestines. This condition may not respond to a gluten-free diet and may require immunosuppressants.
A small number of people with celiac disease develop
mucosal ulcerations
. If this occurs in the duodenum, it can be mistaken for peptic ulcers; if it occurs farther down in the small intestine, it may be mistaken for Crohn’s disease. The condition, called
ulcerative jejunitis
, is more common in the elderly.
Celiac disease is associated with an increased risk of certain kinds of cancers, including
non-Hodgkin’s lymphoma
,
intestinal T-cell lymphoma
, small bowel and esophageal cancer, and melanoma. “However, it’s been shown in Europe that once you put people on a gluten-free diet, the risk of developing these cancers eventually goes back to that of the general population. So this makes it especially urgent for people to be diagnosed as early as possible,” says Dr. Green.
