CONDITIONS

Celiac Disease

What Is Celiac Disease

Celiac disease—also known as gluten-sensitive enteropathy—is a digestive autoimmune disorder, in which the ingestion of gluten results in damage to the lining of the small intestine.  Gluten is a type of protein found in many grains, like wheat, buckwheat, barley, rye, and spelt, among others. Gluten gives bread its springy texture and is used in diverse products such as pills, creams, and beauty treatments. Gluten can also hide in other foods and food products like beer, soy sauce, bacon bits, blue cheese, flavored coffee, and more! The damage celiac disease can do to the intestine makes it difficult for the body to properly absorb nutrients, such as fat, iron, calcium, and folate, which can have very serious health implications.

A study done by the Mayo Clinic and the National Institutes of Health (NIH) estimates that approximately 1 in 141 Americans have celiac disease. Other studies say it could be closer to 1 in 133—though exact numbers are hard to gauge as celiac disease often goes undiagnosed—in fact, it’s estimated that as many as two and a half million Americans are currently undiagnosed.

 

What Causes Celiac Disease

The precise cause of celiac disease is not yet known—but here’s what we do know: when people with celiac disease eat foods that contain gluten, their immune systems react to the gluten, which initiates an inflammatory reaction that involves the lining of the small intestine.  The small intestine is 20 feet long, and finishes the process of digestion, absorbing nutrients and passing waste onto the large intestine. Normally, the body’s immune system is designed to protect against foreign invaders; however, when people with celiac disease eat foods that contain gluten, their immune systems form antibodies (substances produced by the immune system to fight harmful invaders) that actually attack the body they are supposed to defend.  This over-reaction by the immune system is called an autoimmune response—and celiac disease is a digestive, autoimmune disorder.

In celiac disease, this particular immune response attacks the lining of the small intestine, which leads to damage to the villi—small, hair-like structures that line the intestine and increase the surface area exposed to passing nutrients. Villi normally resemble a plush carpet, but damage resulting from celiac disease flattens the inner surface of the intestine such that the villi look more like a hardwood floor instead.  The villi are responsible for absorbing vitamins, minerals and other nutrients from food and if damaged, impair the ability of the body to properly absorb nutrients properly. This can result in a person becoming malnourished, no matter how much food he or she consumes.

Celiac disease can start at any age after a person begins eating foods that contain gluten.  There are serious ramifications to living with untreated celiac disease, among them:

  • Development of other autoimmune disorders like Type 1 diabetes or multiple sclerosis
  • Anemia
  • Osteoporosis
  • Infertility
  • Miscarriage
  • Neurological conditions like migraines or epilepsy
  • Dermatitis herpetiformis, an itchy skin rash
  • Intestinal cancers

Risk Factors For Celiac Disease

Celiac disease can affect anyone—and both men and women are equally at risk. There are, however, a number of risk factors that may increase your chance for developing celiac disease:

Heredity. If you have a relative with celiac disease (parent, child, sibling), you have a 1 in 10 risk of developing celiac disease. Celiac disease is genetically based, so it is more common in those with a family history of the condition. This means that if you have a first or second-degree relative with celiac disease, you are at an increased risk for developing it too. This autoimmune condition occurs in up to 5-10% of family members of persons diagnosed with celiac disease. 1 in 22 first-degree family members (parent, child, sibling) and 1 in 39 second-degree family members (aunt, uncle, niece, nephew, grandparent, grandchild and half-sibling) are at risk for celiac disease. Your risk may double if your brother or sister has celiac disease. The NIH states that in 50 percent of people who have celiac disease, a family member, when screened, also has the disease.

Having a family member with dermatitis herpetiformis raises your risk of developing celiac disease.

Celiac disease is most common in Caucasians.

HLA_DQ2 gene. About 95% of people with celiac disease have the HLA-DQ2 gene and most of the remaining 5% have the HLA-DQ8 gene. Genetic testing can determine if you have one or both of these genes. It is important to note that having the gene means you are at risk for developing celiac disease, but does not mean that you definitely have the disease. A positive genetic test should be followed up with a celiac blood panel to determine if you have celiac disease. If your genetic test returns with a negative result, you can virtually rule out celiac disease.

Having another autoimmune disorder makes you more likely to develop other autoimmune diseases, like celiac disease. Other examples of autoimmune conditions can include:

  • Thyroid disease
  • Type 1 diabetes mellitus
  • Sjogren’s syndrome
  • Primary biliary cirrhosis

If you think that you may be at risk, get tested!  Even if you have no symptoms, it’s critical that you get screened because undiagnosed celiac disease can have long-term, serious health consequences—early diagnosis is key.

Diagnosing Celiac Disease

If you or your doctor suspect that you may have celiac disease, the first step will be to discuss both your medical history and that of your family, and your doctor will perform a physical exam. You may begin the first part of diagnosis with your general practitioner, but if celiac is suspected, you may be referred to a gastroenterologist for further investigation. You will likely have a blood test done that looks for higher levels of certain types of antibodies found in people with celiac disease. The most commonly used blood test is called a tTG-IgA test. If test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.

In addition, your doctor may perform other tests to detect certain nutritional deficiencies that can be common with celiac disease, such as anemia (characterized by having a low level of iron in your blood). A stool sample may also be collected, which is tested to detect the presence of fat in the stool, since celiac disease can block fat from being absorbed from food.

The last step in finalizing a diagnosis of celiac disease typically involves undergoing an endoscopic biopsy, which checks for damage to the villi consistent with celiac disease.  The biopsy is typically performed by a gastroenterologist, and is an outpatient procedure, done under mild sedation. Often, the diagnosis is considered confirmed only when improvement is seen from keeping a gluten-free diet.

It’s important to note that not all people who react negatively to gluten actually have celiac disease. Gluten sensitivity has similar symptoms to celiac disease, but does not cause intestinal damage.  Despite suffering some of the symptoms and possible discomfort as a person with celiac disease, someone that has gluten sensitivity will test negative for celiac antibodies.

Here is an extremely important point: You must not be on a gluten-free diet at the time of testing.  Since diet is the key solution to treating celiac disease, tests may not uncover the correct diagnosis.  If you are on a gluten-free diet, and want to be tested for celiac disease, you will need to consume the equivalent of at least 4 slices of bread for 30 to 90 days, after which you would undergo an endoscopic biopsy to test for damage to the lining of the small intestine.

 

Symptoms of Celiac Disease

Celiac disease can be difficult to diagnose because it affects people differently. There are about 300 known symptoms that may occur in the digestive system or other parts of the body. One person may be experiencing unexplained weight loss, while another is irritable, and another has diarrhea or abdominal discomfort. Some people with celiac disease, however, have no symptoms at all—but all people with celiac disease are at risk for long-term complications, whether or not they display symptoms. These symptomatic differences can make diagnosing celiac disease very difficult, resulting in 83% of people with celiac disease going undiagnosed or misdiagnosed with other conditions.

Digestive symptoms like abdominal bloating and pain, constipation and/or chronic diarrhea, vomiting, and weight loss are more common in infants and children than in adults. Other issues that may be signs of celiac disease in children include fatigue, delayed growth and puberty, general failure to thrive, along with learning and behavioral issues.

Adults are less likely to have digestive symptoms, with only one-third experiencing diarrhea.  Adults are more likely to have:

  • Arthritis
  • Bone or joint pain
  • Bone loss or osteoporosis
  • Tingling numbness in the hands and feet
  • Seizures or migraines
  • Missed menstrual periods
  • Infertility or recurrent miscarriage
  • Unexplained iron-deficient anemia and fatigue
  • Depression or anxiety
  • Canker sores inside the mouth
  • Dermatitis herpetiformis (itchy skin rash)

Prognosis

If you have celiac disease, any foods that contain gluten (including wheat, rye, barley, and oats) may cause harm to your body. Cutting gluten from your diet usually improves the condition within a few days—and eventually will end the disease’s symptoms.

In most cases, the villi are healed within six months, and the small intestine typically returns to normal function—meaning it absorbs nutrients properly—within two years for adults and several months for children and young adults.

You will have to remain on a strict gluten-free diet for the rest of your life; doing so allows for a very positive prognosis—however, eating any gluten at all can damage the intestine and restart the problem.

Celiac disease is a lifelong illness, and maintaining your health and wellbeing is predicated on carefully adhering to a strict, gluten-free diet, and following your doctor’s recommendations. This is critical for your continued health—and if you are having a hard time adjusting to your new gluten-free lifestyle, talk to your doctor of nutritionist for guidance.

Untreated (or undiagnosed) celiac disease can lead to a number of long term health conditions, among them:

  • Iron-deficiency anemia
  • Early onset osteoporosis
  • Infertility and miscarriage
  • Lactose intolerance
  • Vitamin and mineral deficiencies
  • Central and peripheral nervous system disorders
  • Gall bladder malfunction
  • Neurological problems, like seizures, migraine, neuropathy, myopathy, and more.

There is no sure way to prevent celiac disease, but there are things you can do to reduce your risk of suffering symptoms and conditions associated with untreated celiac—chief among them keeping a strict gluten-free diet.

Living With Celiac Disease

Celiac disease can leave a person susceptible to other health problems, including:

  • Osteoporosis a disease that weakens bones and leads to fractures. This occurs because the person has trouble absorbing enough calcium and vitamin D.
  • Miscarriage or infertility.
  • Birth defects, such as neural tube defects (improper formation of the spine) caused by poor absorption of such nutrients as folic acid.
  • Seizures.
  • Growth problems in children because they don’t absorb enough nutrients.

Other Autoimmune Disorders

In a 1999 study, Ventura, et al. found that for people with celiac disease, the later the age of diagnosis, the greater the chance of developing another autoimmune disorder.

People who have celiac disease may have other autoimmune diseases, including:

  • Multiple Sclerosis
  • Thyroid disease
  • Type 1 diabetes
  • Lupus
  • Rheumatoid arthritis
  • Sjögren’s syndrome (a disorder that causes insufficient moisture production by the glands)
  • Ulcerative Colitis

 

A Gluten-free Diet

Currently, the only treatment for celiac disease is a lifelong adherence to a strict gluten-free diet. Grains, including wheat, rye, barley, comprise a major source of nutrients in the typical American diet. The current recommendations are to consume between three and eight ounces of grains in a day—varying for age and activity level. The biggest challenge can be making the shift from grains that contain gluten, to those that don’t, while still getting all the nutrients you need.

People with celiac disease will need to develop a sharp eye for reading nutrition labels. Some red-flag ingredients are clear, like wheat, wheat gluten, rye, barley—but some foods have “hidden” gluten. Two things to watch for in particular are malt—which is made from barley—and hydrolyzed vegetable protein—which often contains wheat. And while oats do not contain gluten, they can often be contaminated with gluten from being processed, as such may increase symptoms, like bloating, diarrhea, and abdominal pain.

If you have celiac, this is what you need to avoid:

  • Wheat, including durum, graham, spelt, kamut, semolina.
  • Wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat protein.
  • Barley
  • Malt
  • Rye.
  • Triticale (a cross between wheat and rye).

 

Many processed foods are made using wheat, barley, or rye—so unless the package states that the product is gluten-free, here are some things to be careful with—make sure to read the labels or talk to your server if in a restaurant:

  • Bouillon cubes, broths, and soups
  • Potato chips and Seasoned tortilla chips
  • Candy
  • Cold cuts, hot dogs, salami, sausage
  • Communion wafers
  • Matzo
  • French fries
  • Gravy and sauces
  • Rice mixes
  • Soy sauce

But here’s the GOOD news! These days, maintaining a gluten-free diet isn’t the challenge it was even just a few years ago—you can find gluten-free mixes for muffins, pizza dough and even bread. Check with the Celiac Disease Foundation (www.celiac.org) or the Celiac Sprue Association (www.csaceliacs.org) for recipe ideas and information.

 

Prevention

Celiac disease cannot be prevented. If you have already been diagnosed with celiac, however, you can prevent symptoms and complications of the disease by eating a strictly gluten-free diet.

Medication And Treatment

Currently, the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet. People living gluten-free must avoid foods with wheat, rye and barley, such as bread and beer. Ingesting small amounts of gluten, as minute as crumbs from a cutting board or toaster, can trigger small intestine damage.

If you have celiac disease, you can’t eat any foods that contain gluten (including wheat, rye, barley, and oats). The good news? Dropping gluten from your diet usually improves the condition within a few days and eventually ends the symptoms of the disease. In most cases, the villi are healed within six months, and the small intestine typically returns to normal function—meaning it absorbs nutrients properly—within two years for adults and several months for children and young adults. Your gastroenterologist may want to take a biopsy of your intestinal tissue six months after diagnosis to confirm that your gluten-free diet is helping heal the lining of your small intestine.

You’ll have to remain on this diet for the rest of your life; eating any gluten at all can damage the intestine and restart the problem.

Some people with celiac disease have so much damage to their intestines that a gluten-free diet will not help them. These rare patients may have to receive nutritional supplements through an IV.

A gluten-free diet will be a big change in your life. You have to rethink your eating habits, including what you buy for lunch, what you eat at parties, or what you snack on. Following a gluten-free diet means you cannot eat many dietary “staples,” including pasta, cereals, and many processed foods that contain grains. You will need to be careful when eating packaged foods, as they may contain gluten. Always read the ingredients of packaged foods and when eating in restaurants, ask about the ingredients of a dish before ordering. But, just because you have celiac disease, it doesn’t mean you can’t enjoy a well-balanced diet. For instance, bread and pasta made from other types of flour (potato, rice, corn, or soy) are available. Food companies and some grocery stores also carry gluten-free bread and products. You can also eat fresh foods that have not been artificially processed, such as fruits, vegetables, meats and fish, since these do not contain gluten.

A dietitian, a health care professional who specializes in food and nutrition, can help you with the gluten-free diet, There are also support groups that can help people with celiac disease make the adjustment.

Complementary and Alternative Treatment

There are a number of complementary therapies that can aid healing in the small intestine, along with following a gluten-free diet.

  • Echinacea and goldenseal may help speed intestinal healing. The two supplements are known to be immune-boosters, and can help with the intestinal inflammation that occurs with celiac. Both have anti-inflammatory and antibacterial properties that can be very powerful. It’s not recommended to take these herbs continuously, alternate weeks, or two weeks on, two weeks off, for up to two months or so—but be sure to talk to your doctor to see what is right for you.
  • Daily multivitamin/mineral supplement.  Vitamins can speed healing.  Absorption of fats is often poor in those with celiac disease, which can lead to deficiencies of vitamins A, C, D, E, so taking these in supplement form, along with a chelated zinc can help a depleted system. As well, other recommendations include: 1,000 mg of calcium, 400 mgs of magnesium (don’t take too much magnesium as it can cause diarrhea), vitamin B6 in the form of Pyridoxal-5-Phospahate or P-5-P (easier on the stomach than other forms of B6.  Talk to your doctor about what supplements are right for you.
  • Beta-carotene, 10,000 I.U. daily, can also be helpful, as can Iron, 60 mg. daily, if a blood test indicates iron deficiency.
  • Evening primrose oil is a good source of the omega-6 essential fatty acids that celiac patients often lack.
  • Silica soothes inflammations in the gastrointestinal tract. It is available in both capsules and gel form.
  • Medicinal clay is excellent in promoting healing of the walls of the colon and protecting it from irritation by toxins and dry, abrasive matter.
  • A combination of burdock, slippery elm, sheep sorrel and Turkish rhubarb tea helps different types of inflammations in the gastrointestinal tract.
  • Dandelion, saffron and yellow dock herbal teas can help purify and nourish the blood.
  • Pickled ginger can be eaten for anti-inflammation properties.

The Importance of Adherence to Treatement

Celiac disease is a lifelong illness, and maintaining your health and wellbeing is predicated on carefully adhering to a strict, gluten-free diet, and following your doctor’s recommendations.  This is critical for your continued health—and if you are having a hard time adjusting to your new gluten-free lifestyle, talk to your doctor of nutritionist for guidance.

Untreated (or undiagnosed) celiac disease can lead to a number of long term health conditions, among them:

  • Iron-deficiency anemia
  • Early onset osteoporosis
  • Infertility and miscarriage
  • Lactose intolerance
  • Vitamin and mineral deficiencies
  • Central and peripheral nervous system disorders
  • Gall bladder malfunction
  • Neurological problems, like seizures, migraine, neuropathy, myopathy, and more.

There is no sure way to prevent celiac disease, but there are things you can do to reduce your risk of suffering symptoms and conditions associated with untreated celiac—chief among them keeping a strict gluten-free diet.

A Gluten-Free Diet

A Gluten-Free Diet

Currently, the only treatment for celiac disease is a lifelong adherence to a strict gluten-free diet.  Grains, including wheat, rye, barley, comprise a major source of nutrients in the typical American diet. The current recommendations are to consume between three and eight ounces of grains in a day—varying for age and activity level. The biggest challenge can be making the shift from grains that contain gluten, to those that don’t, while still getting all the nutrients you need.

People with celiac disease will need to develop a sharp eye for reading nutrition labels. Some red-flag ingredients are clear, like wheat, wheat gluten, rye, barley—but some foods have “hidden” gluten.  Two things to watch for in particular are malt—which is made from barley—and hydrolyzed vegetable protein—which often contains wheat.  And while oats do not contain gluten, they can often be contaminated with gluten from being processed, as such may increase symptoms, like bloating, diarrhea, and abdominal pain.


If you have celiac, this is what you need to avoid:

  • Wheat, including durum, graham, spelt, kamut, semolina.
  • Wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat protein.
  • Barley
  • Malt
  • Rye.
  • Triticale (a cross between wheat and rye).

Many processed foods are made using wheat, barley, or rye—so unless the package states that the product is gluten-free, here are some things to be careful with—make sure to read the labels or talk to your server if in a restaurant:

  • Bouillon cubes, broths, and soups
  • Potato chips and Seasoned tortilla chips
  • Candy
  • Cold cuts, hot dogs, salami, sausage
  • Communion wafers
  • Matzo
  • French fries
  • Gravy and sauces
  • Rice mixes
  • Soy sauce

But here’s the GOOD news! These days, maintaining a gluten-free diet isn’t the challenge it was even just a few years ago—you can find gluten-free mixes for muffins, pizza dough and even bread. Check with the Celiac Disease Foundation  or the Celiac Sprue Association for recipe ideas and information.

When To Contact A Doctor

Call your doctor if you find that you have symptoms of celiac disease—especially diarrhea or digestive discomfort that lasts for more than two weeks. Consult your child’s doctor if he or she is failing to grow or gain weight, has a potbelly, foul-smelling thick stools, and exhibits fatigue and irritability for more than a week—and there is not some other cause, like the flu, that could be causing the symptoms. This is a key point: be sure to consult your doctor before trying a gluten-free diet, because if you stop eating gluten prior to being tested for celiac disease, the test results may not be accurate.

Celiac disease often runs in families—if someone in your family has the condition, ask your physician if you should be tested.  As well, discuss testing if you or someone in your family has a risk factor for celiac disease, like Type 1 diabetes or thyroid disease.

Questions For Your Doctor

A gastroenterologist, along with your primary care physician will be your main points of contact for treatment.

It can be very helpful to have a dietitian as well, who is knowledgeable about gluten-free diets.

The Celiac Disease Foundation also offers information on where you can find the best treatment options near you.

Questions For A Doctor

When you go to see your doctor, it’s good to have a list of the questions you’d like to have answered. Take a moment to write down some of the things you want to know. Your questions for your doctor might include some of these:

  • What kind of problems could celiac disease cause for me?
  • How accurate are the tests for celiac disease?
  • How far advanced is my celiac disease?
  • What are my options for treatment?
  • What treatment would you recommend, and why?
  • What supplements would be good for me to take?
  • What are the possible side effects?
  • Does my insurance cover these treatments?
  • What changes will I need to make in my day-to-day life beyond diet?

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