Find Celiac Disease Specialists near you

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FAQs:

What is Celiac Disease?

Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide, but only about 30% are properly diagnosed. When people with celiac disease eat gluten (a protein found in wheat, rye, and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage to the villi, small fingerlike projections that line the small intestine, and promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body. Celiac disease is hereditary, meaning that it runs in families. People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease. Celiac disease can develop at any age after people start consuming gluten. Left untreated, celiac disease can lead to additional serious health problems.

How Do You Get Celiac Disease?

Your genes, combined with eating foods with gluten and other factors, can contribute to celiac disease. However, the precise cause isn't known. Infant feeding practices, gastrointestinal infections, and gut bacteria may contribute, but these causes have not been proven. Sometimes celiac disease becomes active after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

How Common is Celiac Disease?

Many people who have celiac disease have not been diagnosed. However, experts estimate about 2 million people in the United States have celiac disease and about 1 percent of people around the world have celiac disease.

Is Celiac an Autoimmune Disease?

Celiac disease is an inherited autoimmune disorder that causes a reaction in your body to the protein, gluten. Gluten in your digestive system triggers your immune system to produce antibodies against it. These antibodies damage the lining of your small intestine (the mucosa). Damage to the mucosa in your small intestine impairs its ability to absorb nutrients from your food, causing nutritional deficiencies.

How Does Celiac Disease Affect the Digestive System?

The normal lining of the small intestine (also called the small bowel) is covered with tiny, finger-like projections called villi. The cells on the villi break down and absorb nutrients in food. If you have coeliac disease, the mucosa (lining) of your small intestine is damaged. This causes inflammation of the villi, referred to as villous atrophy. As a result of this inflammation, the surface area of your small intestine, which enables the absorption of nutrients and minerals, is seriously reduced. This can lead to nutritional deficiencies.

Is Celiac Disease Genetic?

Yes, celiac disease can be passed on to your children if you or your partner carry a gene for the disease. However, carrying a gene does not mean your child will have celiac disease. It means your child is at risk of developing celiac disease. There are two genes for celiac disease. These genes are called human leukocyte antigen (HLA) DQ2 and DQ8. Many people who have celiac disease have at least one of these genes. In very rare cases, a person will not have these genes but might develop celiac disease anyway.

Can You Die from Celiac Disease?

Celiac disease is not a fatal condition. But if it's not managed, it can affect your health In ways that put you at risk of earlier death. Many health complications of untreated celiac disease can contribute to an earlier death. Nutritional deficiency and an increased risk of lymphoma are known causes. But there may also be other reasons that haven't yet been clearly defined. The studies do show a higher rate of early death among people with celiac disease, especially among those who were particularly sick at the time of diagnosis. Non-Hodgkin lymphoma, autoimmune diseases, and infections such as pneumonia accounted for many of those early deaths.

However, a few studies hint that sticking to a super-strict gluten-free diet (strict enough to heal your intestinal villi or to abolish your dermatitis herpetiformis) may substantially lower your early death risk. Although the studies are far from definitive, this is one more good reason to faithfully follow your diet.

Can you Prevent Celiac Disease?

There are currently no proven ways to prevent celiac disease. According to a 2018 study published in Frontiers in Pediatrics, only a small percentage of people at genetic risk end up getting this disease. The study also mentions that at one point, it was thought that introducing foods with gluten early on in a child's life could prevent celiac disease. However, several studies show no link between early gluten exposure and celiac disease.

If you are diagnosed with celiac disease, you may be able to prevent it from causing further damage to your small intestine. This can be achieved by eating a healthy and strict gluten-free diet. Researchers say a gluten-free diet may even reverse damage to the small intestine caused by celiac disease.

Is Celiac Disease a Disability?

Individuals with celiac disease have different needs at different times in their lives. Because of these special needs, celiac disease is considered a disability under the Americans with Disabilities Act. This designation is particularly relevant in certain public establishments, like educational institutions, from pre-school to college.

Can You Develop Celiac Disease?

You have a 10% chance of developing the disease if you have a first-degree relative, such as a parent or child, who has it. About 97% of people diagnosed with celiac disease have a recognizable gene mutation associated with it (HLA-DQ2 or HLA-DQ8).

Facts about Celiac Disease

Here are some of the most staggering facts about celiac disease and the gluten-free marketplace. Each statement highlights the need for education and awareness among the medical, science, and culinary communities as well as the general public.

1. Celiac disease is a serious genetic autoimmune disease that damages the villi of the small intestine and interferes with the absorption of nutrients from food.

2. An estimated 1 in 133 Americans, or about 1% of the population, has celiac disease. However, recent screening studies point to a potentially higher prevalence than 1% in the United States.

3. A mass screening program of children in Italy found the prevalence of celiac disease to be 1.6%.

4. A meta-analysis found the global incidence of celiac disease “significantly” increasing. It noted that a “genuine increase in CD incidence is occurring beyond diagnostic improvements, most likely due to environmental factors.” It also found the “pooled global prevalence of celiac disease was 1.4%”.

5. Celiac disease can affect men and women of all ages and races.

6. It is estimated that up to 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions.

7. 6-10 years is the average time a person waits to be correctly diagnosed. (Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconess Medical Center).

8. Celiac disease can lead to several other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.

9. Over four years, people with undiagnosed celiac disease cost an average of $3,964 more than healthy individuals. (Source: Long et al, 2010).

10. One in five children with celiac disease isn’t healing on the gluten-free diet.

11. It has been estimated that 5-22% of people with celiac disease have an immediate family member (first-degree relative) who also has celiac disease. However, a retrospective study by the Mayo Clinic, found that 44% of screened first-degree relatives had celiac disease.

12. Up to 6% of Americans have non-celiac gluten sensitivity.

13. There are no pharmaceutical treatments or cures for celiac disease.

14. A 100% gluten-free diet is the only existing treatment for celiac disease or non-celiac gluten sensitivity today.

Causes of Celiac Disease

Celiac disease is a genetic disease that runs in families. You may have celiac disease and not know it because you don’t have any symptoms. Some things that may make symptoms start to appear are:

- Too much stress

- Pregnancy

- Surgery

- Physical injury

- Infection

- Childbirth

Symptoms of Celiac Disease

The symptoms of celiac disease can vary greatly. They also may be different in children and adults. Digestive symptoms for adults include:

- Diarrhea.

- Fatigue.

- Weight loss.

- Bloating and gas.

- Abdominal pain.

- Nausea and vomiting.

- Constipation.

However, more than half the adults with celiac disease have symptoms that are not related to the digestive system, including:

- Anemia, usually from iron deficiency due to decreased iron absorption.

- Loss of bone density, called osteoporosis, or softening of bones, called osteomalacia.

- Itchy, blistery skin rash, called dermatitis herpetiformis.

- Mouth ulcers.

- Headaches and fatigue.

- Nervous system injury, including numbness and tingling in the feet and hands, possible - problems with balance, and cognitive impairment.

- Joint pain.

- Reduced functioning of the spleen, known as hyposplenism.

- Elevated liver enzymes.

Children with celiac disease are more likely than adults to have digestive problems, including:

- Nausea and vomiting.

- Chronic diarrhea.

- Swollen belly.

- Constipation.

- Gas.

- Pale, foul-smelling stools.

The inability to absorb nutrients might result in:

- Failure to thrive for infants.

- Damage to tooth enamel.

- Weight loss.

- Anemia.

- Irritability.

- Short stature.

- Delayed puberty.

- Neurological symptoms, including attention-deficit/hyperactivity disorder (ADHD), learning disabilities, headaches, lack of muscle coordination, and seizures.

Complications of Celiac Disease

Celiac disease that is not treated can lead to:

1. Malnutrition. This occurs if your small intestine can't absorb enough nutrients. Malnutrition can lead to anemia and weight loss. In children, malnutrition can cause slow growth and short stature.

2. Bone weakening. In children, malabsorption of calcium and vitamin D can lead to a softening of the bone, called osteomalacia or rickets. In adults, it can lead to a loss of bone density, called osteopenia or osteoporosis.

3. Infertility and miscarriage. Malabsorption of calcium and vitamin D can contribute to reproductive issues.

4. Lactose intolerance. Damage to your small intestine might cause you abdominal pain and diarrhea after eating or drinking dairy products that contain lactose. Once your intestine has healed, you might be able to tolerate dairy products again.

5. Cancer. People with celiac disease who don't maintain a gluten-free diet have a greater risk of developing several forms of cancer, including intestinal lymphoma and small bowel cancer.

6. Nervous system conditions. Some people with celiac disease can develop conditions such as seizures or a disease of the nerves to the hands and feet, called peripheral neuropathy.

How Celiac Disease is Diagnosed

Diagnosis begins with a physical examination and a medical history. Healthcare professionals will also perform various tests to help confirm a diagnosis. People with celiac disease often have high levels of antiendomysium (EMA) and anti-tissue transglutaminase (tTG-lgA) antibodies. These can be detected with blood tests. Tests are most reliable when they’re performed while gluten is still in your diet. Common blood tests include:

- complete blood count (CBC)

- liver function tests

- cholesterol test

- alkaline phosphatase level test

- serum albumin test

If you have DH, a skin biopsy can also help a doctor diagnose celiac disease. The doctor will remove tiny pieces of skin tissue for examination under a microscope. If the skin biopsy and blood test results indicate celiac disease, an internal biopsy may not be necessary. If the blood test or skin biopsy results are inconclusive, a doctor can use an upper endoscopy to test for celiac disease.

During an upper endoscopy, a doctor will thread a thin tube called an endoscope through your mouth and down into your small intestine. A small camera attached to the endoscope allows the doctor to examine your intestine and check for damage to the villi. They can also perform an intestinal biopsy, which involves removing a tissue sample from your intestine for analysis.

Food Precautions for People with Celiac Disease

Maintaining a gluten-free diet isn’t easy, but many companies are now making gluten-free products that you can find at various grocery stores and specialty food stores. The labels on these products will say “gluten-free.” In addition, more and more restaurants offer gluten-free bread products such as hamburger buns and pizza crusts. If you have celiac disease, it’s important to know which foods are safe. Here is a series of food guidelines that can help you determine what to eat and what to avoid. Avoid the following ingredients:

- wheat

- spelt

- rye

- barley

- triticale

- bulgur

- durum

- farina

- graham flour

- semolina

- malt

Avoid these products unless the label says “gluten-free”:

- beer

- bread

- cakes and pies

- candy

- cereals

- cookies

- crackers

- croutons

- gravies

- imitation meats or seafood

- oats

- pasta

- processed lunch meats, sausages, and hot dogs

- salad dressings

- sauces (includes soy sauce)

- self-basting poultry

- soups

You can eat these gluten-free grains and starches:

- buckwheat

- corn

- amaranth

- arrowroot

- cornmeal

- flour made from rice, soy, corn, potatoes, or beans

- pure corn tortillas

- quinoa

- rice

- tapioca

Healthy gluten-free foods include:

- fresh meats, fish, and poultry that haven’t been breaded, coated, or marinated

- fruit

- most dairy products

- starchy vegetables like peas, potatoes, including sweet potatoes, and corn

- rice, beans, and lentils

- vegetables

- wine, distilled liquors, ciders, and spirits

How to Treat Celiac Disease

The first and most important step in treating celiac disease is to stop eating gluten. You can’t change the way your body reacts to gluten, but you can prevent gluten from triggering that reaction. When you stop eating gluten, your small intestine will begin to heal and will soon be able to absorb nutrients again. You have to maintain a strict gluten-free diet for life, though, to avoid hurting your small intestine again. Additional treatment may include:

1. Nutritional supplements to replace any serious deficiencies.

2. Specific medications to treat dermatitis herpetiformis, such as dapsone.

3. Corticosteroids for severe inflammation that’s not responding fast enough to the diet.

4. Continuous follow-up care, including regular testing to make sure the disease is controlled.

8 Tips for Choosing a Celiac Disease Specialist Near Me

Knowing that you need to see a celiac disease specialist, gastroenterologist, or gastrointestinal (GI) doctor can be worrisome. Most likely, your primary care doctor has recommended that you see a gastroenterologist. How do you find the best gastroenterologist who is right for you? Take the following issues into consideration.

1. Get Referrals

Start with your referral list from your primary care doctor. You can also ask family, friends, and other healthcare providers for recommendations. Take the time to research the doctors’ credentials and experience. As you narrow down your list, call each gastroenterologist’s office and ask for a consult appointment to meet and interview the doctor.

2. Research the Gastroenterologist’s Credentials

Board certification is one of your most important considerations when choosing a gastroenterologist. Gastroenterologists are specialists board-certified in both internal medicine and gastroenterology. Board certification tells you that the doctor has the necessary training, skills, and experience to provide GI care. Also, confirm that the gastroenterologist has no history of malpractice claims or disciplinary actions. You can find the gastroenterologist’s medical school, training hospital, certifications, and malpractice and disciplinary history on state websites.

3. Consider the Gastroenterologist’s Experience

When it comes to specialized medical or surgical care for complex GI problems, the more experience a doctor has, the better your results are likely to be. Be sure your gastroenterologist has graduated from an accredited fellowship training program. Ask how many patients with your specific condition the gastroenterologist has treated. If you know you need a specific procedure, ask how many of the procedures the doctor has performed and find out about complication rates—complications the doctor has encountered as well as your own risk of complications.

4. Consider Gender

It is important for you to feel comfortable with your gastroenterologist’s gender because you will need to openly discuss personal information. Be sure to ask the gastroenterologist about his or her recent training and experience specifically related to your condition and your gender. Gastroenterologists are becoming more specialized in caring for women with GI disorders. In addition, some hospitals have specialized GI centers that focus on women’s unique medical needs.

5. Research Hospital Quality

Your doctor’s hospital is your hospital. For this reason, consider the quality of care at the hospital where the gastroenterologist can treat patients. Hospital quality matters to you because patients at top-rated hospitals have fewer complications and better survival rates. Additionally, consider whether the hospital’s location is important to you. Should you need to go to the hospital for tests or treatment, you want the location to encourage, rather than discourage timely care.

6. Evaluate Communication Style

Choose a gastroenterologist with whom you are comfortable talking and who supports your information needs. When you first meet the gastroenterologist, ask a question and notice how he or she responds. Does he or she welcome your questions and answer them in ways that you can understand? During the visit, did you feel rushed or engaged? Find a gastroenterologist who shows an interest in getting to know you, who will consider your treatment preferences, and who will respect your decision-making process.

7. Read Patient Reviews

Reading what other people have to say about a doctor can provide insight into how a doctor practices medicine, as well as how his or her medical practice is operated. People typically convey their experience with scheduling appointments, wait times, office environment, and office friendliness in patient reviews. You can learn about how well patients trust the doctor, how much time he or she spends with their patients, and how well he or she answers questions.

8. Know What Your Insurance Covers

Your insurance coverage is a practical matter. To receive the most insurance benefits and pay the least out-of-pocket for your care, you may need to choose a celiac disease specialist who participates in your plan. You should still consider credentials, experience, outcomes, and hospital quality as you select a gastroenterologist from your plan.

Sources:

Celiac Disease Foundation

Mayo Clinic

Hopkins Medicine

Healthline

Beyond Celiac

Mass General for Children

NIH

Cleveland Clinic

Very Well Health

Better Health

Lompoc VMC

Healthgrades