Celiac Disease and How To Live with It

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We have come to think of whole grains as an important part of healthy eating, but for people with celiac disease (CD), some grains have just the opposite effect. CD, also known as celiac sprue and gluten-sensitive enteropathy, is a genetically based autoimmune disorder. When people who are susceptible to CD eat gluten -- a protein found in wheat, rye, and barley -- their immune systems attack and destroy their villi, the finger-like projections that line the small intestine. Researchers think that other factors -- such as viral infections, surgery, hormone status, and severe emotional stress -- may prime the intestine to respond this way.

Without villi, the intestine cannot absorb nutrients properly. At its worst, CD can cause a sudden and severe diarrhea that can lead to massive dehydration and even death. More often, poor absorption of iron, folic acid, or both, can cause anemia; and failure to absorb calcium, vitamin D, and other nutrients can led to osteoporosis. Complications include shortened stature, impaired fertility, miscarriages, and neurological problems, including seizures and difficulty walking. CD is also implicated in or associated with a variety of conditions, including skin disorders, thyroid and liver diseases, and Type 1 diabetes. Untreated, CD increases the risk for small intestinal lymphoma and adenocarcinoma.

From a medical standpoint, the treatment for celiac disease is simple: a gluten-free diet. Improvement usually starts within days, and the small intestine is often completely healed (meaning the villi are restored) within three to six months. But avoiding gluten altogether requires enormous dedication. People with CD must give up most conveniently available breads, pastas, and cereals. They must also do relentless detective work to uncover hidden sources of gluten. This daunting task has been made somewhat easier through the advice and information of support groups and organizations founded by those with CD.

COMMON, BUT OFTEN UNRECOGNIZED
CD is well known in Europe, where 1 in 130 to 1 in 300 people are affected and children are routinely screened for the disorder. In the United States, it is less often recognized and is not always the first diagnosis considered. In fact, studies in this country have shown that it can take a dozen years or more to get a proper diagnosis.

One obstacle to recognizing CD is that its classic symptoms -- chronic diarrhea and abdominal distention -- mimic the effects of other conditions, such as irritable bowel syndrome and lactose intolerance. And new research indicates that these symptoms are less characteristic. Indeed, 50% of newly diagnosed patients report no gastrointestinal problems, and some may show only symptoms of anemia or fatigue.

Until fairly recently, testing for CD required endoscopy to obtain a biopsy of the small intestine to check for damaged villi. But we now have blood tests that measure levels of antibodies (antigliadin, anti-endomysium, and antireticulin) whose presence in the blood strongly suggests CD. A physician will still want to confirm the diagnosis with a biopsy because treatment requires such severe dietary restrictions. Family members should be screened with a blood test because first-degree relatives (children, parents, or siblings) of people with CD have a 10% chance of developing it as well.

Improved screening has given researchers a better sense of the scope of CD. Preliminary results from a University of Maryland study suggest that CD may affect as many as 1 in 150 adults. Estimates based on earlier data including only people presenting with gastrointestinal symptoms gave a prevalence of 1 in 10,000. Celiac disease organizations are hoping that the new awareness of how common the disease is will lead to earlier diagnosis, better treatment, and possibly, mass screening.

GOING GLUTEN-FREE: THE DIET
If you have CD, you should not eat or drink anything (including any medication) that contains gluten. A major problem for people with CD is that commercially processed foods are not required to list gluten content on their labels. That means that while you can follow general guidelines about eating (such as the chart on page 3), you will also need to do some homework to make sure that a food is gluten-free.

AVOIDING HIDDEN GLUTEN
Gluten is widely incorporated in the Western diet in ways that are not always obvious. Many of the thickening agents used in processed and prepared products contain gluten. Some seemingly benign foods, such as dates and commercial candies, are dusted with flour to keep them from sticking. Even a communion wafer can cause problems for some people (gluten-free wafers are available). Several studies indicate that oats are gluten-free; but if harvesting and milling processes are not kept gluten-free, the oats may become contaminated with gluten from other grains.

If a processed food is not specifically labeled gluten-free, you should check the ingredients label. This can flag foods that seem to be safe but are not. For instance, soybeans and tomatoes themselves are gluten-free, but many soy sauces and some ketchups have certain thickeners and vinegars that contain gluten. Also, ingredients in packaged and canned products may change from one batch to another.

Potentially gluten-containing ingredients include food colorings, binders, fillers, extenders, hydrolyzed vegetable protein (HVP), hydrolyzed plant protein (HPP), and modified starches. U.S. law requires that a substance listed simply as "starch" in American products be corn starch, which is safe -- but if you aren't sure, call the manufacturer. Check the labels of medications, including vitamins, because most pills have a starch base. Make sure it's made from corn or tapioca.

Even a carefully chosen food can harm you if it is contaminated with gluten -- for example, by breadcrumbs left in a toaster -- during preparation. Utensils and appliances must be kept free of gluten-containing products. If possible, have a separate, gluten-free food preparation area.

GENERAL GUIDELINES FOR GLUTEN-FREE EATING
Legend for Chart:

A - Type of Food
B - Do Not Eat
C - Okay To Eat

A

B

C

Grains, potatoes, flours and cereals

* Wheat, rye, barley in any form (breads and
bread crumbs, pasta, and noodles)
* Spelt, semolina, kamut, triticale,
couscous, bulgar, farina
* Rice mixes, some converted rice
* Unidentified starches or fillers
* Most commercial cereals

* Gluten-free pastas and breads (made from
soy, rice, corn, potato, and bean flours)
* Plain rices, corn, popcorn, potatoes,
sweet potatoes, soybeans, other beans, nuts,
millet, amaranth, quinoa
* Oats (consult doctor)
* Corn starch and arrowroot starch
* Gluten-free cereals made from cornmeal,
corn, or rice

Fruits and vegetables

* Canned soups, soup mixes, bouillon cubes
* Creamed vegetables
* Most salad dressings
* Hydrolyzed vegetable protein

* Fresh, frozen, or canned fruits or
vegetables, unprocessed and without sauces
* Homemade soups with allowed ingredients

Meat, fish, poultry, main dishes

* Commercially prepared fresh or frozen
meats, lunch meats and sausages, prepared
meals and main dishes

* Fresh meat, fish, poultry

Dairy products

* Processed cheese, cheese mixes, blue
(veined) cheese
* Yogurt or ice cream that is unlabeled or
that contains fillers or additives
* Low-fat or fat-free cottage cheese, sour
cream, or cheese spreads

* Plain natural cheese
* Plain yogurt and ice cream that are
gluten-free
* Whole, low-fat, and fat-free milk
* Full-fat cottage cheese and sour cream

Alcohol

* Beer, whiskey, bourbon, grain alcohol

* Wine, light rum, potato vodka

Miscellaneous

* Grain vinegar
* Malt from barley
* Soy sauce made from wheat

* Rice, wine, or apple cider vinegar
* Homemade puddings from tapioca, corn
starch, rice
* Sugar, honey, jam, jelly, plain syrup,
plain hard candy; marshmallows
* Gluten-free soy sauce
Getting the Support You Need
People with CD generally say that they learn most of what they know about it from their own research and discussion with others who have the condition. In fact, many doctors rely on their patients to keep them up-to-date on gluten-free eating, and most recommend that newly diagnosed celiac patients join a celiac support group and a celiac organization. Celiac organizations provide referrals to local support groups and to doctors and dieticians experienced in the disease. In addition, they offer tips on negotiating meals away from home, gluten-free recipes, sources for gluten-free products, detailed lists of allowed and forbidden foods, restaurant guides, and newsletters.

Celiac Diseases Foundation, 13251 Ventura Blvd., Suite 1, Studio City, CA 91604; (818) 990-2354, www.celiac.org
Celiac Sprue Association/United States of America, Inc., P.O. Box 31700, Omaha, NE 68131-0700; (402) 558-0600, www.csaceliacs.org
Gluten Intolerance Group of North America, 15110 10th Ave. SW, Suite A, Seattle, WA 98166; (206) 246-6652, www.gluten.net

OSTEOPOROSIS: A COMMON COMPLICATION
Celiac disease interferes with the body's absorption of nutrients, including calcium, and its most common complication is bone loss. Compared with the general population, people who have CD are up to 10 times more likely to develop osteoporosis. The risk is greater if you are not diagnosed until you are an adult. One study found osteoporosis in 47% of adult-diagnosed patients, even though all of them were on a gluten-free diet. People with CD who begin the gluten-free diet as children generally have normal bone density.

Some people -- especially menopausal and postmenopausal women --may need calcium supplements and medications in addition to a gluten-free diet. For postmenopausal women with CD, the most commonly recommended treatment is hormone-replacement therapy (HRT). Raloxifene (a selective estrogen receptor modulator, or SERM), bisphosophonates (alendronate and risedronate), and calcitonin are other options. To help prevent bone loss, people with celiac disease should exercise, stop smoking, and get 1,500 mg/day of calcium from a combination of food and supplements.

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