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Celiac Disease info from American Celiac Disease Alliance

Celiac Disease

 

Celiac disease has been known by many different names in the medical literature over the years, including gluten-sensitive enteropathy and celiac sprue (to differentiate it from tropical sprue).  CELIAC DISEASE can be defined as a permanent intolerance to the gliadin fraction of wheat protein and related alcohol-soluble proteins (called prolamines) found in rye and barley.  CELIAC DISEASE occurs in genetically susceptible individuals who eat these proteins, leading to an autoimmune disease, where the body’s immune system starts attacking normal tissue.  This condition continues as long as these food products are in the diet.

 

The resulting inflammation and atrophy of the intestinal villi (small, finger-like projections in the small intestine) results in the malabsorption of critical vitamins, minerals, and calories.  Signs and symptoms of the disease classically include diarrhea, short stature, iron-deficiency anemia and lactose intolerance.  However, many patients will also present with “non-classical” symptoms, such as abdominal pain, “irritable bowel”, and osteoporosis.  Patients may also be screened for celiac disease because of the presence of another autoimmune disease, such as type I diabetes or thyroid disease, or a family history of celiac disease, without having any obvious symptoms.  Serum antibodies can be utilized to screen for celiac disease.  However, the key to confirming the diagnosis remains a small intestinal biopsy, and the patient’s subsequent clinical response to a gluten-free diet.  Clinicians in the United States must maintain a high index of suspicion for this disease, as it is significantly under-diagnosed in this country. 

 

What is a wheat allergy?

 

    People can also have other medical problems, besides celiac disease, when they eat wheat and related proteins.  Wheat allergy is one of the top 8 food allergies in the United States.  Allergic reactions after eating wheat may include reactions in the skin, mouth, lungs, and even the GI tract.  Symptoms of wheat allergy can include rash, wheezing, lip swelling, abdominal pain and diarrhea.  The branch of the immune system activated in allergic reactions is different from the branch thought to be responsible for the autoimmune reactions of celiac disease.

 

 What is gluten intolerance?

 

    People can also experience’ intolerance’ to gluten.  Food intolerances are not thought to be immune mediated.  GI symptoms with wheat or gluten intolerance may include gassiness, abdominal pain, abdominal distension, and diarrhea.  These symptoms are usually transient, and are thought NOT cause permanent damage.

    Patients with lactose intolerance, where the lactose sugar in diary products is not digested well, may also experience gassiness, abdominal pain, abdominal distension, and diarrhea.  Like gluten or wheat intolerance, these symptoms will pass once the lactose is out of the person's system, and will not cause permanent damage.

  

Why is it important to know if you have celiac disease, versus wheat allergy or gluten intolerance?

 

   Celiac disease, wheat allergy and gluten-intolerance are treated similarly, in that patients with these conditions must remove wheat from their diet.  It is important to note, however, that there is a difference between these three medical problems. 

 

Celiac disease is an autoimmune condition, where the body's immune system starts attacking normal tissue, such as intestinal tissue, in response to eating gluten. 

 

Because of this, people with celiac disease are at risk for malabsorption of food in the GI tract, causing nutritional deficiencies. 

 

This can lead to conditions such as iron deficiency anemia and osteoporosis. 

 

Since a person with wheat allergy or gluten-intolerance usually does not have severe intestinal damage, he or she is not at risk for these nutritional deficiencies. 

 

Celiac disease is an autoimmune condition, putting the patient at risk for other autoimmune conditions, such as thyroid disease, type I diabetes, joint diseases and liver diseases. 

 

Since wheat allergy and gluten intolerance are not autoimmune conditions, people who have food allergies and intolerances are not at increased risk to develop an autoimmune condition over the general population's risk.  And finally, celiac disease involves the activation of a particular type of white blood cell, the T lymphocyte, as well as other parts of the immune system. 

 

Because of this, patients with celiac disease are at increased risk to develop GI cancers, in particular lymphomas.  Because food allergies and intolerances do not involve this particular immune system pathway, and do not cause severe GI tract damage, these patients are not at increased risk for these cancers.

 

    Thus, while celiac disease, wheat allergy, and gluten-intolerance may be treated with similar diets, they are not the same conditions.  It is very important for a person to know which condition they have, as the person with celiac disease needs to monitor himself or herself for nutritional deficiencies, other autoimmune diseases, and GI cancers.  In general, the symptoms from food allergies and intolerances resolve when the offending foods are removed from the diet and do not cause permanent organ damage.

 

 

 

Diagnosing Celiac Disease

 

What are the appropriate screening tests for celiac disease?

 

The tests of choice are antibody measurements in the blood, ideally performed before the patient has removed gluten from the diet.  However, patients and physicians must remember that no screening test is perfect, and that the keys to confirming the diagnosis of CELIAC DISEASE remain a small intestinal biopsy combined with the patient’s subsequent clinical response to a gluten-free diet.  Thus, a patient (especially a young child) with symptoms of CELIAC DISEASE should have a small bowel biopsy, even if the antibodies are not highly suggestive.

 

What are the different antibody tests available?  Can there be errors in testing?

 

The blood tests can be divided into 2 different types of antibodies: those which are “anti-gluten”, and those that “anti-self”.  The “anti-gluten” antibodies are the anti-gliadin IgG and IgA.  Ig stands for “immunoglobulin” or “antibody”.  The “anti-self” antibodies are anti-endomysial IgA and anti-tissue transglutaminase IgA.  The tissue transglutaminase IgA antibody is often abbreviated as “tTG”.  Each antibody test varies widely in its sensitivity and specificity for predicting whether the disease is present in any individual.  It must be remembered that NO test in medicine is correct 100% of the time in each person!

 

   There are also several conditions which may yield false negative antibody results.  A false negative means that the patient actually has the disease, but the test result is negative.  One of the conditions that may give a false negative result is Immunoglobulin A or IgA deficiency.  If a patient has a low total IgA level, the antibodies may be falsely low.  This is why I always recommend that a patient have a total IgA level drawn at the same time the antibody testing is done.  Young children may not make the some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them.  So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results.  An inexperienced lab can misread the anti-endomysial IgA test, which requires someone to read a slide through a special microscope.  It is possible that a celiac patient could have a positive antibody test at one lab, and a negative test at another.  This is because different labs may use different commercial test kits, which vary in their sensitivity and specificity.  And lastly, a person has to be ingesting gluten at the time the antibodies are drawn.  A gluten-free diet will make the antibody tests negative.

   Let’s discuss the different antibodies and what the strengths and weaknesses are for each.   

 

Antigliadin antibodies

 

   The antigliadin antibodies IgG and IgA recognize a small piece of the gluten protein called gliadin.  These antibodies became available during the late 1970’s and were the first step towards recognizing CELIAC DISEASE as an autoimmune disorder.  Antigliadin IgG has good sensitivity, while antigliadin IgA has good specificity, and therefore their combined use provided the first reliable screening test for CELIAC DISEASE.  Unfortunately, many normal individuals without CELIAC DISEASE will have an elevated antigliadin IgG, causing much confusion among physicians.  The antigliadin IgG is useful in screening individuals who are IgA deficient, as the other antibodies used for routine screening are usually of the IgA class.  It is thought that 0.2-0.4% of the general population has selective IgA deficiency, while 2 to 3% or more of celiacs are IgA deficient.

 

   If a patient’s celiac panel is only positive for antigliadin IgG, this is not highly suggestive for CELIAC DISEASE if the patient has a normal total IgA level, corrected for age.  Younger children make less IgA than older children and adults.  A markedly elevated antigliadin IgG, such as greater than three to four times the upper limit of normal for that lab, is highly suggestive of a condition where the gut is leakier to gluten.  This can happen in food allergies, cystic fibrosis, parasitic infections, Crohn’s disease, and other types of autoimmune GI diseases.  These antibodies may also be slightly elevated in individuals with no obvious disease.

 

   A strength of the antigliadin antibodies is that they are ELISA tests.  ELISA is an abbreviation for “enzyme-linked immunosorbent assay”.  This is a rapid immunochemical test that involves an enzyme, which a protein that causes a biochemical reaction.  An ELISA test also involves an antibody or antigen.  ELISA tests are utilized to detect substances that have antigenic properties, primarily proteins, such as gliadin.  The importance of an ELISA test is that is it rapid, inexpensive, and run by a machine.  Thus the results are independent of observer variability.  The TTG test is also an ELISA test.  This is in contrast to the antiendomysial IgA, where a slide has to be made, and a person has to look at it through a microscope.  These are more prone to human error.

 

Antiendomysium antibodies

 

   The antiendomysial IgA antibody is an excellent screening test for CELIAC DISEASE, with both a high sensitivity and specificity.  It is considered the gold standard of antibodies.  However, the subjective nature of this test (someone still needs to look at the slide under a microscope) may lead to false negative values and unacceptable variability between laboratories.  This antibody was discovered in the early 1980’s, and rapidly gained use as part of a screening “celiac panel” by commercial labs in combination with antigliadin IgG and IgA.  Its major drawbacks are that it may be falsely negative in young children, in patients with IgA deficiency and a lesser degree of villous atrophy, and in the hands of an inexperienced laboratory.

 

Tissue transglutaminase antibodies or TTG

 

Since tTG had been first described as the autoantigen of celiac disease in 1997, it has been utilized to develop innovative diagnostic tools.  The tTG IgA ELISA test is highly sensitive and specific. The tTG assay correlates well with EMA-IgA and biopsy.  However, it represents an improvement over the antiendomysial antibody assay because it inexpensive, rapid, is not a subjective test, and can be performed on a single drop of blood using a dot-blot technique.  One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition.  TTG false positivity has been described in patients with both type I diabetes and autoimmune hepatitis.  Theoretically, it can also be falsely positive in other autoimmune disease. 

 

 

 Treatment

 

 

Celiac Disease (CD) is a life-long digestive disorder found in individuals who are genetically susceptible. Damage to the small intestine is caused by an immunologically toxic reaction to the ingestion of gluten. This does not allow food to be properly absorbed. Even small amounts of gluten in foods may affect those with celiac disease and cause health problems. Damage can occur to the small bowel even in the absence of symptoms.

 

This is a a simple overview of the Gluten-Free (GF) diet. Not all areas of the diet are as clear-cut as portrayed by this Guide.  This is intended to be used as a  safe and temporary survival tool until the newly diagnosed celiac obtains additional information. Understanding these dietary requirements will enable the newly diagnosed to read labels of food products and determine if a product is GF.

 

Gluten is the generic name for certain types of proteins contained in the common cereal grains wheat, barley, rye and their derivatives.

 

ALLOWED Grains/Flours

Rice, corn (maize), soy, potato, tapioca, beans, garfava, sorghum, quinoa, millet, buckwheat, arrowroot, amaranth, teff, Montina®,  flax, and nut flours.

 

NOT ALLOWED in any form

Wheat (enkorn, durum, faro, graham, kamut, semolina, spelt), rye, barley and triticale. 

 

Frequently overlooked foods that may contain gluten and need to be verified:

 

Breading, Coating mixes, Panko   Brown rice syrup

Croutons                                     Energy Bars

Flour or cereal products                Imitation bacon

Imitation seafood                         Marinades

Pastas                                        Processed luncheon meats

Sauces, gravies                           Self-basting poultry

Soy Sauce or soy sauce solids     Soup bases

Stuffings, Dressing                       Thickeners (Roux)

Communion wafers                       Herbal supplements

Nutritional supplements                 Vitamins & mineral supplements

Prescription Drugs                        Over-the-counter medications

 

Play-doh: a potential problem if hands are put on or in the mouth while playing with play-doh. Hands should be washed immediately after use.

 

Distilled alcoholic beverages and vinegars are gluten-free. Distilled products do not contain any harmful gluten peptides. Research indicates that the gluten peptide is too large to carry over in the distillation process. This leaves the resultant liquid gluten-free.  Wines are gluten-free. Beers, ales, lagers,  and malt vinegar are made from gluten-containing grains and are not distilled, therefore they are not gluten-free.

 

IF IN DOUBT -- GO WITHOUT!

When unable to verify ingredients or the ingredient list is unavailable DO NOT EAT IT. Regardless of the amount eaten, it is not worth triggering  your immune system and the damage to the small intestine that occurs every time gluten is consumed, whether symptoms are present or not. A person with celiac disease  may have additional food sensitivity not related to gluten.

 

WHEAT FREE IS NOT GLUTEN-FREE

Products labeled Wheat-Free are not necessarily gluten-free. They may still contain rye or barley-based ingredients that are not GF. Spelt is a form of wheat and is not acceptable on a gluten-free diet.

 

Contamination in Food Preparation

 When preparing gluten-free foods they must not come in contact with food containing gluten. Contamination can occur if foods are prepared on common surfaces, or with utensils that are not thoroughly cleaned after preparing gluten-containing foods. Using a common toaster for GF bread and regular bread is a major source of contamination. Flour sifters should not be shared with gluten-containing flours. Deep fried foods cooked in oil shared with breaded products should not be consumed. Spreadable condiments in shared containers may also be a source of contamination. When a person dips into a condiment a second time, with the knife (used for spreading), the condiment becomes contaminated with crumbs (e.g. mustard, mayonnaise, jam, peanut butter, and margarine). 

 

 Wheat flour can stay airborne for many hours in a bakery (or at home) and contaminate exposed preparation surfaces and utensils or uncovered gluten-free products.  Likewise, foods not produced in a gluten-free environment have the potential to be contaminated with gluten. This may occur when machinery or equipment is inadequately cleaned after producing gluten-containing foods. Food manufacturers are required to abide by Good Manufacturing Practices outlined in the FDA’s Code of Federal Regulations, to reduce the risk of contamination in manufacturing. Let common sense be your guide.

 

Not All Adverse Reactions Are Due to Celiac Disease

Lactose intolerance, food sensitivities or allergies to soy, corn, other foods or even the stomach flu, are common causes of symptoms similar to celiac disease. Newly diagnosed celiacs may have trouble digesting certain foods, especially fatty ones, until the small intestine has had a chance to heal and start absorbing normally. If necessary, keep a diary of foods eaten. Read labels, remember what you ate, and listen to your body.

 

Attitude is Everything

Like anything new, it takes time to adjust to the GF diet. It is natural to mourn old food habits for a short time. Stay focused on all the foods you CAN eat. Fresh fruits and vegetables are delicious and healthy. Fresh poultry, fish, meat and legumes provide protein and are naturally GF. Most dairy foods can also be enjoyed providing you are not lactose intolerant. GF substitutes for foods commonly made with wheat are available at health food stores and from GF food manufacturers. Try GF waffles for breakfast; a sandwich on GF bread for lunch; and rice, corn or quinoa pasta for dinner. Your new way of eating is very satisfying!

 

The GF diet is a life-long commitment and should not be started before being properly diagnosed with CD/DH. Starting the diet without complete testing is not recommended and makes diagnosis difficult. Tests to confirm CD could be inaccurate if a person were on a GF diet for a long period of time. For a valid diagnosis gluten needs to be reintroduced.  Celiac Disease is an inherited autoimmune disease. Screening of family members is recommended. Consult your doctor for testing.

 

 

From the MAYO CLINIC

Celiac Disease info from the Mayo Clinic

Introduction

Celiac disease is a digestive condition triggered by consumption of the protein gluten, which is found in bread, pasta, cookies, pizza crust and many other foods containing wheat, rye, barley malt & most Oats.  When a person with celiac disease eats foods containing gluten, an immune reaction occurs in the small intestine, resulting in damage to the surface of the small intestine and an inability to absorb certain nutrients from food.

Eventually, decreased absorption of nutrients (malabsorption) can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment, which can lead to other illnesses. The decreased nutrient absorption that occurs in celiac disease is especially serious in children, who need proper nutrition to develop and grow.

No treatment can cure celiac disease. However, you can effectively manage celiac disease through changing your diet.

 

Signs and symptoms

There are no typical signs and symptoms of celiac disease. Most people with the disease have general complaints, such as intermittent diarrhea, abdominal pain and bloating. Sometimes people with celiac disease may have no gastrointestinal symptoms at all. Celiac disease symptoms can also mimic those of other conditions, such as irritable bowel syndrome, gastric ulcers, Crohn's disease, parasite infections, anemia, skin disorders or a nervous condition.

Celiac disease may also present itself in less obvious ways, including irritability or depression, anemia, stomach upset, joint pain, muscle cramps, skin rash, mouth sores, dental and bone disorders (such as osteoporosis), and tingling in the legs and feet (neuropathy).

Some indications of malabsorption that may result from celiac disease include:

  • Weight loss
  • Diarrhea
  • Abdominal cramps, gas and bloating
  • General weakness
  • Foul-smelling or grayish stools that may be fatty or oily
  • Stunted growth (in children)
  • Osteoporosis

Dermatitis herpetiformis is an itchy, blistering skin disease that also stems from gluten intolerance. The rash usually occurs on the elbows, knees and buttocks. Dermatitis herpetiformis can cause significant intestinal damage identical to that of celiac disease. However, it may not produce noticeable digestive symptoms. This disease is treated with a gluten-free diet, in addition to medication to control the rash.

 

Causes

Also known as celiac sprue, nontropical sprue and gluten-sensitive enteropathy, celiac disease occurs in people who have a susceptibility to gluten intolerance. Some experts speculate that celiac disease has been around since humankind switched from a foraging diet of meat and nuts to a cultivated diet including grains, such as wheat. Nonetheless, it has only been in the last 50 years that researchers have gained a better understanding of the condition.

Normally, your small intestine is lined with tiny, hair-like projections called villi. Resembling the deep pile of a plush carpet on a microscopic scale, villi work to absorb vitamins, minerals and other nutrients from the food you eat. Celiac disease results in damage to the villi. Without villi, the inner surface of the small intestine becomes less like a plush carpet and more like a tile floor, and your body is unable to absorb nutrients necessary for health and growth. Instead, nutrients such as fat, protein, vitamins and minerals are eliminated with your stool.

The exact cause of celiac disease is unknown, but it's often inherited. If someone in your immediate family has it, chances are 5 percent to 15 percent that you may as well. It can occur at any age, although problems don't appear until gluten is introduced into the diet.

Many times, for unclear reasons, the disease emerges after some form of trauma: an infection, a physical injury, the stress of pregnancy, severe stress or surgery.

Celiac disease may be much more common in the United States than previously believed. Recent estimates suggest that one in 133 people have the disease. Among those closely related to someone with celiac disease, such as a parent or sibling, prevalence is even higher: one in 22.

Part of the reason for the previous underdiagnosis of celiac disease may be because the disorder resembles several other conditions that can cause malabsorption. Another reason may be that if doctors believe a condition to be rare, they may look to more common disorders to explain a person's signs and symptoms. In addition, specific blood tests now allow for diagnosis of people with celiac disease who have very mild signs and symptoms or none at all.

 

Risk factors

Although celiac disease can affect anyone, it tends to be more common in people of European descent and people with disorders caused by a reaction of the immune system (autoimmune disorders), such as:

  • Lupus erythematosus
  • Type 1 diabetes
  • Rheumatoid arthritis
  • Autoimmune thyroid disease
  • Microscopic colitis 

 

When to seek medical advice

If you notice or experience any of the signs or symptoms common to celiac disease, see your doctor. If someone in your family is known to have celiac disease, you may need to be tested. Starting the process will help you avoid complications associated with the disease, such as osteoporosis, anemia and certain types of cancer.

Seek medical attention for a child who is pale, irritable, fails to grow and who has a potbelly, flat buttocks and malodorous, bulky stools. Many other conditions can cause these same signs and symptoms, so it's important to talk to your doctor before trying a gluten-free diet.

 

Screening and diagnosis

People with celiac disease carry higher than normal levels of certain antibodies (anti-gliadin, anti-endomysium and anti-tissue transglutaminase). Antibodies are specialized proteins that are part of your immune system and work to eliminate foreign substances in your body. In people with celiac disease, their immune systems may be recognizing gluten as a foreign substance and producing elevated levels of antibodies to get rid of it.

A blood test can detect high levels of these antibodies and is used to initially detect people who are most likely to have the disease and who may need further testing. To confirm the diagnosis, your doctor may need to microscopically examine a small portion of intestinal tissue to check for damage to the villi. To do this, your doctor inserts a thin, flexible tube (endoscope) through your mouth, esophagus and stomach into your small intestine and takes a sample of intestinal tissue.

A trial of a gluten-free diet also can confirm a diagnosis, but it's important that you not start such a diet before seeking a medical evaluation. Doing so may change the results of blood tests and biopsies so that they appear to be normal.

 

Complications

Left untreated, celiac disease can lead to several complications:

  • Malnutrition. Untreated celiac disease can lead to malabsorption, which in turn can lead to malnutrition. This occurs in spite of what appears to be an adequate diet. Because vital nutrients are lost in the stool rather than absorbed in the bloodstream, malabsorption can cause a deficiency in vitamins A, B-12, D, E and K, folate and iron, resulting in anemia and weight loss. Malnutrition can cause stunted growth in children and delay their development.

  • Loss of calcium and bone density. With continued loss of fat in the stool, calcium and vitamin D may be lost in excessive amounts. This may result in a bone disorder called osteomalacia, a softening of the bone also known as rickets in children, and loss of bone density (osteoporosis), a condition that leaves your bones fragile and prone to fracture. In addition, lack of calcium absorption can lead to a certain type of kidney stone (oxalate stone).

  • Lactose intolerance. Because of damage to your small intestine from gluten, foods that don't contain gluten may also cause abdominal pain and diarrhea. Some people with celiac disease aren't able to tolerate milk sugar (lactose) found in dairy products, a condition called lactose intolerance. If this is the case, you need to limit food and beverages containing lactose as well as those containing gluten. Once your intestine has healed, you may be able to tolerate dairy products again. However, some people may continue to experience lactose intolerance despite successful management of celiac disease. If you're among this group, you'll need to limit products that contain lactose indefinitely.

  • Cancer. People with celiac disease who don't maintain a gluten-free diet also have a greater chance of getting one of several forms of cancer, especially intestinal lymphoma and bowel cancer.

  • Neurological complications. Celiac disease has also been associated with disorders of the nervous system, including seizures (epilepsy) and nerve damage (peripheral neuropathy).

 

Treatment

Celiac disease has no cure, but you can effectively manage the disease through changing your diet.

Once gluten is removed from your diet, inflammation in your small intestine will begin to subside, usually within several weeks. If your nutritional deficiencies are severe, you may need to take vitamin and mineral supplements recommended by your doctor or dietitian to help correct these deficiencies. Complete healing and regrowth of the villi may take several months in younger people and as long as two to three years in older people.

Improvements after starting a gluten-free diet may be especially dramatic in children. Not only do their physical symptoms improve, but also their behavior improves. In addition, their growth starts to pick up.

Avoiding gluten is essential
To manage the disease and prevent complications, it's crucial that you avoid all foods that contain gluten. That means all foods or food ingredients made from many grains, including wheat, barley and rye. This includes any type of wheat (including farina, graham flour, semolina and durum), barley, rye, bulgur, Kamut, kasha, matzo meal, spelt and triticale.

Amaranth, buckwheat and quinoa are gluten-free as grown, but may be contaminated by other grains during harvesting and processing. Cross-contamination may also occur if gluten-free products are prepared in unwashed bowls previously containing gluten products. Oats may not be harmful for most people with celiac disease, but oat products are frequently contaminated with wheat, so it's best to avoid oats as well.

The question of whether people eating a gluten-free diet can consume pure oat products remains a subject of scientific debate. Difficulties in identifying the precise components responsible for the immune response and the chemical differences between wheat and oats have contributed to the controversy.

Your doctor may recommend that you meet with a dietitian who can instruct you on a gluten-free diet. There are still many basic foods allowed in a gluten-free diet. These include:

  • Fresh meats, fish and poultry (not breaded or marinated)
  • Most dairy products
  • Fruits
  • Vegetables
  • Rice
  • Potatoes
  • Gluten-free flours (rice, soy, corn, potato)

Most foods made from grains contain gluten. Avoid these foods unless they're labeled as gluten-free or made with corn, rice, soy or other gluten-free grain:

  • Breads
  • Cereals
  • Crackers
  • Pasta
  • Cookies
  • Cakes and pies
  • Gravies
  • Sauces

Many other foods have ingredients that contain gluten. Grains containing gluten are often used in food additives, such as malt flavoring, modified food starch and others. Other sources of gluten that might come as a surprise include medications and vitamins that use gluten as a binding agent, lipstick, postage stamps and contamination of gluten-free foods with foods containing gluten. Cross-contamination may occur anywhere ingredients come together, such as on a cutting board. You may also be exposed to gluten by using the same utensils as others, such as a bread knife, or by sharing the same condiment containers.

Gluten-free products abound
Fortunately for bread and pasta lovers with celiac disease, there are an increasing number of gluten-free products on the market. If you can't find any at your local bakery or grocery store, check with a celiac support group or the Internet for availability. In fact, there are gluten-free substitutes for many gluten-containing foods, from brownies to beer. Many cities have specialty grocery stores that sell gluten-free foods.

Identifying gluten-free foods can be difficult. Because a gluten-free diet needs to be strictly followed, you may wish to consult a registered dietitian who is experienced in teaching the gluten-free diet. A dietitian can advise you on how to best maintain the nutritional quality of your diet and help you come up with gluten-free alternatives. She or he will also help you identify your need for vitamin, calcium and mineral supplements. Revisiting the dietitian over the years will help keep you up-to-date on newer food products as well as answer your questions.

What if you eat gluten?
If you accidentally eat a product that contains gluten, you may experience abdominal pain and diarrhea. Some people experience no signs or symptoms after eating gluten, but this doesn't mean it's not hurting them. Even trace amounts of gluten in your diet can be damaging, whether or not they cause signs or symptoms. Going on and off a gluten-free diet can lead to serious complications.

Most people with celiac disease who follow a gluten-free diet have a complete recovery. Only a small percentage of people who have severely damaged small intestines don't improve with a gluten-free diet. When diet isn't effective, treatment often includes medications to help control intestinal inflammation and other conditions resulting from malabsorption.

Because celiac disease can lead to many complications, people who don't respond to dietary changes need frequent monitoring for other health conditions.

 

Self-care

Following a gluten-free diet may leave you angry and frustrated, understandably so. But with time, patience and a little creativity, you'll find there are many foods that you can still eat and enjoy. Following are some tips to help you on your way to a safe and healthy diet.

Read food labels
Food labels are your lifeline to better health. Always read the food label before you purchase any product. Some foods that may appear acceptable, such as rice or corn cereals, may contain gluten. What's more, a manufacturer may change a product's ingredients at any time. A food that was once gluten-free no longer may be. Unless you read the label every time you shop, you won't know this.

As of 2006, the Food and Drug Administration (FDA) requires products containing wheat, milk, soy, peanuts, tree nuts, fish, shellfish or eggs to say so in plain English on the product's label. By August 2008, the FDA will also issue a standard definition of "gluten-free" to make it easier for shoppers with celiac disease to identify products.

Call the manufacturer
If you can't tell by the label if a food contains gluten, don't eat it until you check with the product's manufacturer. Some support groups produce a gluten-free shopper's guide that can save you time at the market, although it may not be as current as that obtained from the manufacturer.

Adapt your favorite recipes
If your favorite foods contain gluten, don't fret yet. You may be able to make a few changes in the recipes that will allow you to still enjoy them. Here are some helpful tips for the kitchen.

For 1 tablespoon of wheat flour, substitute one of these:

  • 1 1/2 teaspoons cornstarch
  • 1 1/2 teaspoons potato starch
  • 1 1/2 teaspoons arrowroot starch
  • 1 1/2 teaspoons rice flour
  • 2 teaspoons quick-cooking tapioca

For 1 cup of wheat flour, substitute one of these:

  • 3/4 cup plain cornmeal, coarse
  • 1 cup plain cornmeal, fine
  • 5/8 cup potato flour
  • 3/4 cup rice flour

When using substitute starches and flours, you may find that the recipe turns out best if you bake the food longer and at a lower temperature. For more satisfactory baked products, experiment a bit with baking times, temperature settings and different combinations of substitutes — potato flour and rice flour, for example. In addition, gluten-free cookbooks are available that can give you a good start at recipe adjustments.

Don't be afraid to eat out
Though preparing your own meals is the easiest way to monitor your diet, this doesn't mean you can't eat out. For an enjoyable dining experience, remember the following advice:

  • Select places that specialize in the kinds of foods you can eat. You may want to call the restaurant in advance and discuss the menu options and your dietary needs.
  • Be a repeat customer. Visit the same restaurants so that you become familiar with their menus and the personnel get to know your needs.
  • Seek and share ideas. Ask members of your support group for suggestions on restaurants that serve gluten-free food. If there are enough gluten-sensitive people in your community, it's likely that restaurant owners will try to satisfy your needs. Continue to share with the support group the names of any restaurants that add gluten-free foods to their menus.
  • Follow the same practices you do at home. Select simply prepared or fresh foods and avoid all breaded or batter-coated foods, gravies and other foods with obvious or questionable ingredients.

 

Coping skills

Living with celiac disease isn't always easy. Every day can be a challenge. Over time, however, managing your disease will become second nature. In the meantime, these suggestions may help you manage more easily:

  • Gather information about celiac disease. Talk to your doctor, look for information on the Internet, and read books and pamphlets. Find cookbooks directed specifically toward a gluten-free diet. Being informed about your condition can help you take better charge of it.
  • Seek out others with celiac disease. Talking to people who know what you're going through can be reassuring. Your doctor may be able to refer you to a celiac disease support group in your community, or you may find one listed on the Internet or in your local paper.
  • Don't hesitate to seek guidance. If you're having difficulty coming up with suitable menus, talk to a registered dietitian. A dietitian has extensive knowledge of the nutritional aspects of food and what you can and can't eat. He or she can help you think in more creative ways about your favorite foods.
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Ingredients in food & other products that may or may not be Gluten Free.  Some may surprise you!

 

Amaranth
Amaranth comes from an herb. Gluten free and high in nutritional value, it is puffed for cereal or ground into flour.


Arrowroot
A gluten-free starch made from the root of an herb. It is a thickener that works like corn starch.

Barley
A grain that contains gluten. It is found in some soups and is processed to make malt flavoring.

Brewers yeast
See yeast.

Buckwheat
Despite the name, buckwheat is a fruit. Nutritious and gluten free, buckwheat can be ground into flour. Buckwheat groats are the hulled seed of the buckwheat plant. When groats are roasted, they are called kasha. Buckwheat is sometimes combined with wheat flour in pancake and baking mixes, so you can't assume all buckwheat products are gluten free. Always read the label.

Caramel color
Corn is used to make caramel color in the U.S.  The FDA does permit use of barley malt but all major caramel color producers say corn makes a better product.

Citric Acid
This ingredient is gluten free. It is usually made from corn, beet sugar or molasses. Even when made from wheat, citric acid is so highly processed and purified that no gluten protein would remain.

Corn
A gluten-free grain. It is used to make corn flour, corn starch, grits, hominy, and polenta, all of which are gluten free. Also called maize. Corn gluten does not contain the protein harmful to those who have celiac disease.

Dextrin
Dextrin made from corn, potato, arrowroot, rice, or tapioca is gluten free. It can be made from wheat, though this is rare and would not be gluten free. If dextrin is made from wheat, "wheat" will appear on the label.

Dextrose
An ingredient made from starch, including rice, corn or wheat. It is a highly processed ingredient that is gluten free no matter which starch is used.

Flavors
Flavors are rarely made from gluten-containing grains, according to the Flavor Extract Manufacturers Association. If wheat is used to make a flavor, "wheat" must appear on the label. Some flavoring is made with ethanol that comes from wheat. In that case the flavor would still be gluten free because ethanol is distilled. Distillation removes the gluten protein.

Glucose syrup
A gluten-free sweetener made most frequently from corn, but also from tapioca, potato, sorghum or wheat starch. It is such a highly processed and purified ingredient that the source of the starch does not matter. Even if you see glucose syrup derived from wheat on a label, it is still gluten free.

Gluten
The protein component of wheat, rye, barley, spelt, kamut, einkorn, emmer and dinkle that is toxic to those who follow a gluten-free diet. The single word gluten is rarely used on a food label. It is listed more commonly as "wheat gluten" or just "wheat." Other grains such as corn also have a gluten component. If the grain is safe, the gluten portion is safe.

Guar Gum
A gluten-free thickening ingredient made from the guar bean. It is used in gluten-free baking to help provide the stretch that normally comes from gluten. It can work like a laxative if consumed in large quantities.

Herbs
All plain herbs are gluten free

Hydrolyzed vegetable protein (HVP) or Hydrolyzed Plant Protein (HPP)
The source of the protein should always be listed on the label of a food that contains HVP or HPP. If it is "hydrolyzed soy protein," it would be gluten free; if it is "hydrolyzed wheat protein" it would not be gluten free.

Lecithin
Used to thicken food, lecithin is usually made from soy and is gluten free.

Malt
Malt flavoring is usually made from barley and is not gluten free. Labels do not have to specify the source of malt flavoring but some companies voluntarily note which grain is used. In rare instances, malt is made from corn and wouldbe gluten free. Malt extract, malt syrup and malt flour are made from barley and are not gluten free. See Vinegar for info on malt vinegar.

Maltodextrin
Maltodextrin is gluten free. It can be made from a variety of starches, including corn, potato, rice or wheat. However the source does not matter because maltodextrin is such a highly processed ingredient that the protein is removed, rendering it gluten free. If wheat is used to make maltodextrin, "wheat" will be appear on the label. Even in this case, the maltodextrin would be gluten free.

Millet
A gluten-free grain that is used as a whole seed or ground into flour.

Modified food starch
An ingredient made from a variety of starches. Modified food starch is gluten free unless it is made from wheat. If modified food starch is made from wheat, "wheat" will appear on the label. Also, more and more companies are listing all sources of modified food starch voluntarily.

Mono and diglycerides
Mono and diglycerides are fats and are gluten free.

Montina
Brand name of a gluten-free flour made from Indian rice grass.

MSG
Monosodium glutamate is a flavoring made through the fermentation of corn, sugar beets, or sugar cane. It is gluten-free.

Oats
Pure oats are gluten free. However, oats require very strict growing conditions to eliminate contamination from wheat. Oats grown under normal conditions and used inmainstream oat products are rarely "pure," and are not considered gluten free.There are a few brands of gluten-free oats grown and processed in a manner that eliminates cross-contamination. These are labeled gluten free.

Oat gum
Oat gum is rarely used as an ingredient. It is made from the carbohydrate portion of oats. Since gluten is a protein, oat gum would be gluten free.

Potato
A vegetable used to make potato flour, potato starch and potato starch flour. It is gluten free.

Quinoa
This ancient grain-like plant from South America is gluten-free and very nutritious. It can be eaten as a whole grain or ground into flour. It is also used to make nutrient-packed gluten-free pasta.

Rice
A gluten-free grain. Brown, white, enriched rice and other kinds of plain rice are gluten free. Rice mixes are often seasoned and the seasoning can contain wheat which would be labeled. This is often true of wild rice mixes, though there are some brands that do not contain wheat and are gluten free. Rice flour is a common ingredient in gluten-free foods.

Rye
A gluten-containing grain. Rye flour is primarily used in rye bread. Aside from rye flavoring, it is rarely used to make ingredients.

Seasonings
Seasonings can contain a wide variety of ingredients. Some are not gluten free because they contain wheat flour or wheat starch, which will be noted on the label. Others contain only spices, herbs and gluten-free ingredients and are gluten free.

Seitan
An ingredient found in vegetarian food that is made from wheat gluten.

Soba
Thin Japanese noodles, which are gluten free when made from pure buckwheat. When wheat flour is added, as is often the case, they are not gluten free.

Sorghum
A nutritious gluten-free grain that can be eaten like popcorn, cooked into porridge, or ground into flour. Used to make gluten-free beer. Also called milo.

Soy
A legume, soy is gluten free. It can be eaten as bean, ground into flour and processed to make other ingredients like lecithin.

Soy Sauce
Most brands of soy sauce contain wheat, which will be listed on the label. Some brands only contain soybeans and are gluten free.

Spelt
Spelt is a form of wheat and is required by law to be listed as wheat on the label. Although those who are allergic to wheat may be able to tolerate spelt, it is not gluten free.

Spices
Pure spices are gluten free. Some contain silicon dioxide, but it is gluten-free and used to keep the spice free flowing.

Starch
On food labels, starch always means cornstarch and is gluten free.

Tapioca
An ingredient made from the root of the cassava plant, tapioca is gluten free. Tapioca flour, also know as tapioca starch, is often used in combination with other gluten-free flours to make baked goods. Also called manioc.

Teriyaki sauce
Most contain soy sauce and are not gluten free. There are several specialty gluten-free brands available.

Tofu
Often used in vegetarian recipes, tofu is made from soybeans, water and a curdling agent. When plain, it is gluten free. If soy sauce made from wheat is used to flavor tofu it is not gluten free.

Teff
A nutritious gluten-free grain native to Ethiopia. As whole grain it can be eaten as cereal. It is also ground into flour.

Triticale
A cross bred hybrid of wheat and rye that contains gluten.

Vanilla
A gluten-free flavoring made from distilled alcohol and flavor extracted from the vanilla seed (pure extract) or from artificial vanilla flavoring (artificial extract). Distillation removes the gluten protein from the alcohol.

Vinegar
Distilled vinegar is gluten free and has always been gluten free. There is no evidence that suggests vinegar might be dangerous for those who follow the gluten-free diet. The only vinegar to avoid is malt vinegar, which is made from barley and is not distilled.

Wheat
A gluten-containing grain. Bulgur, durum, einkorn, farina, graham, kamut, semolina,and spelt are all forms of wheat.

Wheat Starch
A starch made from wheat. If wheat starch is used, "wheat" has to appear on the food label. Although processing often removes the gluten protein, someresidual gluten can remain so wheat starch is not considered gluten free in theUS. ** A special grade of wheat starch is permitted on the gluten-free diet in some European countries.

Whey
The liquid part of milk that is separated from solids when cheese is made. It is used as an additive in many processed foods and is gluten free.

Yeast
All brand-name packaged yeasts sold in the US are gluten free. Autolyzed yeast in a food product is generally considered gluten free. Brewers'  yeast, when it's a by-product of beer, is not considered gluten free. Brewers yeast nutritional supplements, however, can be made from either brewer's yeast or sugar. If made from sugar, they are gluten free.

Xanthan gum
An ingredient used to give stretch to gluten-free baked goods in place of gluten. It is made by fermentation of glucose by xanthomonas campestris bacterium, from which it gets its name.

Waiter, please hold the wheat!

HOLD THE WHEAT!

Waiter, Please Hold the Wheat!

Symptoms can be baffling at first. But once doctors diagnose celiac disease, patients can take advantage of a growing array of healthy foods.

Dining Well: Collins (far left) and Courson eat at Bistango, a restaurant in New York
Mark Peterson / Redux for Newsweek
Dining Well: Collins (far left) and Courson eat at Bistango, a restaurant in New York
 

 

 

By Anne Underwood
Newsweek

Sept. 17, 2007 issue - In 1988, Alice Bast came home from a vacation in Cancún with what seemed like a classic case of Montezuma's revenge, but with one crucial difference. It didn't go away. As days of illness turned into months and years, her weight dropped from 130 pounds to 110. Her hair fell out in clumps when she brushed it. Her teeth began chipping, and she suffered severe fatigue, migraines, depression and tingling in her fingers and toes. "I thought I was dying of cancer," she says. But the worst moment came in 1990, two weeks before her second child was due. Bast suddenly became aware that the baby wasn't moving. Her husband put his ear to her belly and looked up with panic in his eyes. "I hear nothing," he said. Their unborn daughter was dead.

Twenty-two physicians tried and failed to make sense of Bast's symptoms. It was a veterinarian friend who finally suggested a possible cause in 1994. "Dogs sometimes have trouble digesting grains," the friend said. Within days, Bast had obtained a formal diagnosis of celiac disease—an intolerance for gluten, the protein in wheat, rye and barley. The resulting damage to the small intestine makes it hard for the body to absorb nutrients. Far from being dismayed, Bast was thrilled. "I wasn't dying. I wasn't crazy. I was elated!" she says. Better yet, just two weeks after eliminating these grains from her diet, she started feeling well again. In 2003, she established the National Foundation for Celiac Awareness to help alert others to the existence of the disease. "All those years I lost, I don't want other people to lose them, too," she says.

There are plenty of people who stand to benefit from her work. Until recently, celiac disease was thought to be rare in this country. But in 2003, Dr. Alessio Fasano at the University of Maryland's Center for Celiac Research published a study in the Archives of Internal Medicine showing that the ailment actually affects 1 in 133 Americans, or roughly 3 million people. And they're not just Caucasians, as previously believed, but African-Americans, Asians and Latinos as well. In 2004, the National Institutes of Health formally recognized Fasano's conclusions. Overnight, the disease went from "rare" to "common," although it remains vastly underdiagnosed. "Most GPs don't look for it," says Elaine Monarch, executive director of the Celiac Disease Foundation. But increasing awareness and more sensitive blood tests for the disease are leading to more diagnoses—which in turn are causing more companies to start marketing gluten-free foods. "When we got gluten-free beer, that was huge," says Vanessa Maltin, author of "Beyond Rice Cakes: A Young Person's Guide to Cooking, Eating and Living Gluten-Free."

Maltin once dated a man who panicked when she told him about the ailment, thinking he could catch it from her. But only people with a genetic predisposition can develop celiac disease, and only if they're eating gluten. (Sometimes it also takes a stressor—like an accident, surgery or an infection—to exacerbate the condition enough to make symptoms noticeable.) Celiac disease is an immune response gone awry. Normally, when food enters the small intestine, critical nutrients are absorbed into the bloodstream through masses of tiny fingerlike projections called villi. But in people with celiac disease, the immune system mounts an all-out assault against gluten and any villi that have absorbed it. The villi become inflamed, eventually shriveling up, flattening out or even disappearing. Without functioning villi, the body stops absorbing food properly.

In many patients the result is diarrhea, bloating and abdominal cramping. But as Bast's experience shows, problems can spread far beyond the digestive tract. Many symptoms—like anemia, osteoporosis and a general "failure to thrive" in young children—result from poor absorption of nutrients. Several years ago, Jamie Yadgaroff, a Philadelphia lawyer, was alarmed to find that her 3-year-old son, Daniel, hadn't outgrown his fall clothes from the previous autumn. "He had a distended belly, with skinny arms and legs," she says. "He was so small, he wasn't even on the growth charts." But after going on a gluten-free diet in early 2003, Daniel grew four inches in a year and is now a normal, if short, 8-year-old.

Nutrient deficiencies are not the whole story, however. Celiac disease is also an autoimmune disorder that can harm many parts of the body. "Name the organ, and celiac disease can affect it," says Dr. Peter Green, director of the Celiac Disease Center at Columbia University. In launching its assault on gluten, the immune system generates antibodies to an enzyme called tissue transglutaminase. This enzyme is an innocent bystander that acts on gluten in the lining of the intestine. But because the enzyme is also found throughout the body—in the skin, heart, thyroid, bones and nervous system—antibodies that attack it can direct their fire at any of these other organs, too. Green has even documented a connection between celiac disease and low levels of "good" cholesterol, a key component of which can be made in the intestines. And he's researching an association with infertility in both men and women, although the cause remains unclear. "Wheat may be the staff of life, but not for people with celiac disease," he says.

New Treats: Risotteria, a New York restaurant, offers gluten-free beer and other foods
Mark Peterson / Redux for Newsweek
New Treats: Risotteria, a New York restaurant, offers gluten-free beer and other foods

The longer a person suffers, the more physical problems he or she is likely to develop—which is why it's good to get tested early if you have symptoms or if the disease runs in your family. Diagnosis is easy, if only doctors think to test for the ailment. In 2000, a blood test for the antibody became available. A positive test is usually followed up with a small-bowel biopsy to confirm the results, before patients are put on a strict diet for life. But there are worse fates than going gluten-free. "If God came down and said to me, 'You have to have a chronic disease,' I would pick celiac," says Dr. Ritu Verma, a pediatric gastroenterologist at Children's Hospital of Philadelphia, who has two children of her own with the disease. Patients don't have to undergo complicated surgeries or toxic treatments to be healed. All they have to do is eliminate wheat, rye and barley from their diets.

Not that the regimen is easy at first. Verma recalls feeling overwhelmed when her children were diagnosed in 2004. Wheat can lurk in a lot of unlikely places, from licorice and soy sauce to soups and gravies. Even blue cheese can have it, as the mold is generally grown on bread, then injected into the cheese as it ages. Mere traces of gluten can cause problems. "That means you need to ask when you order french fries in a restaurant whether the oil was also used to fry chicken nuggets," Verma says.

But living gluten-free has never been easier. In seven years the number of gluten-free products on the market has doubled, according to a recent presentation at the Institute of Food Technologists. These range from Bell & Evans's gluten-free chicken nuggets to Redbridge beer, which is made from sorghum instead of malted barley. Supermarkets like Whole Foods and Wegmans sell gluten-free breads and cookies. And certain restaurant chains, like Outback Steakhouse and Carrabba's Italian Grill, offer gluten-free menus.

Some high-end restaurants are developing gluten-free options, too. On a recent evening, CNN anchor Heidi Collins, the celebrity spokesperson for the National Foundation for Celiac Awareness, dined with Kelly Courson, one of the Celiac Chicks bloggers, at Bistango in New York. The fare ranged from bruschetta on gluten-free bread to a garlicky, gluten-free fusilli with sun-dried tomatoes, chicken and broccoli. "It's exciting to go to a restaurant and be able to eat what you want—not just plain chicken but bread, pasta and dessert, too," says Courson. "We're not wallowing in 'poor me'."

Certainly that's true of Shauna James Ahern, author of the forthcoming book "Gluten-Free Girl," a delightful memoir of learning to eat superbly while remaining gluten-free. On a recent vacation in the Pacific Northwest, she and her husband dined on fresh-caught crab and blackberries fresh off the bush, which they made into a gluten-free crisp, substituting almond meal, tapioca flour, quinoa flakes and cornmeal for regular flour. "When there's this much bounty, it would be a sacrilege to say my life isn't good because I can't eat bread," she says. She's clearly not suffering. Just call her a wheat watcher.

 

 
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