gluten free foods

Celiac Disease

Celiac disease also known as coeliac disease, celiac sprue, non-tropical sprue, autoimmune enteropathy or gluten sensitive enteropathy, is an autoimmune disorder in which the body’s immune system attacks the lining of the small intestine after a person consumes gluten, a protein found in wheat, barley, rye and sometimes oats. Oats are constitutionally gluten free but can be cross-contaminated with wheat during processing 1. Cross-contamination can occur at any time, including when foods are grown, processed, stored, prepared, or served. Gluten is the term used to identify a mixture of proteins (prolamines) that occurs in the endosperm of wheat (gliadins) and other cereals such as barley (hordeins) and rye (secalins) 2. Gluten can also be found in medicines, vitamins and lip balms. Celiac disease is an immune-mediated systemic disorder elicited by gluten and related prolamines in genetically susceptible individuals that is characterized by the presence of a variable combination of gluten-dependent clinical manifestations, celiac disease-specific antibodies, human leucocyte antigen (HLA)-DQ2 or HLA-DQ8 haplotypes, and enteropathy 3. In other word, celiac disease can only develop in those with certain genes called HLA-DQ2 or HLA-DQ8. Either one or both of these genes are present in the majority of people with celiac disease. Thirty percent of the population carries these genes. If you do not have these genes, HLA-DQ2 or HLA-DQ8, celiac disease cannot develop, but only a small percentage of those with the genes (approximately 1 in 40 of these people) develop celiac disease. Untreated celiac disease leads to inflammation that damages the small intestine, which prevents a person from properly absorbing nutrients that the body needs.

Celiac disease is called an autoimmune disorder because a person’s own immune system causes harm to the body. Celiac disease is triggered by the consumption of gluten in genetically susceptible individuals, who are exposed to as-yet-unidentified environmental triggers. Celiac disease has a worldwide distribution that affects ∼1% of the world’s population 4, except for populations in which the HLA celiac disease genes (HLA-DQ2 and/or HLA-DQ8) are rare such as in South East Asia 5, 6, 7, 8. Celiac disease has a prevalence of 0.7% in the United States 9. Two and one-half million Americans are undiagnosed for celiac disease and are at risk for long-term health complications 10.

In 1950, Dr Willem Karel Dicke, of the Netherlands, discovered the harmful effect of dietary gluten in celiac disease 11. Research into the root causes indicates that celiac disease develops when a person exposed to gluten also has a genetic susceptibility to celiac disease (HLA-DQ2 or HLA-DQ8) and an unusually permeable intestinal wall.

A first degree relative (parent, sibling, child) of someone with celiac disease has about a 10% chance of also having Celiac disease. If one identical twin has Celiac disease there is an approximate 70% chance that the other twin will also have celiac disease (but may not necessarily be diagnosed at the same time). Environmental factors play an important role in triggering celiac disease in infancy, childhood or later in life.

If you have celiac disease, eating gluten triggers an immune reaction in your small intestine by damaging the villi (tiny, finger-like projections which line the small intestine) and causing abdominal pain, bloating or diarrhea. Over time, this immune reaction damages your small intestine’s lining (villous atrophy) which reduces the surface area of the small intestine available for nutrient absorption and prevents it from absorbing some nutrients from food (malabsorption) and as the condition progresses, malnourishment occurs. The intestinal damage often causes diarrhea, fatigue, weight loss, bloating and anemia, and can lead to serious complications. Left untreated, celiac disease may lead to non-intestinal symptoms including anemia, chronic fatigue, osteoporosis, impaired spleen, infertility, neurologic disorders, skin rashes and cancer.

In children, malabsorption can affect growth and development, besides causing the symptoms seen in adults.

Gluten is a mix of protein (glutenins and gliadins) found in wheat, rye, and barley. Oats are constitutionally gluten free but can be cross-contaminated with wheat during processing 1. The current tests for ‘gluten’ in food can measure the gluten in wheat (gliadin), barley (hordein), and rye (secalin). Gluten is found mainly in foods but may also be in other products like medicines, vitamins, and supplements. Gluten can cause two distinct immunological diseases: Celiac disease and IgE-mediated gluten allergy (also called wheat allergy) [see Figure 1 below]. In gluten allergy (wheat allergy) it is the cross-linking of immunoglobulin IgE by repeat sequences in gluten peptides (for example, serine-glutamine-glutamine -glutamine-(glutamine-)proline-proline-phenylalanine) that triggers the release of chemical mediators, such as histamine, from basophils and mast cells 12. In contrast, Celiac disease is an autoimmune disorder (your immune system attacks healthy cells in your body by mistake), as demonstrated by specific serologic autoantibodies, most notably serum anti-tissue transglutaminase antibodies immunoglobulin A (tTG-IgA) and anti-endomysial antibody immunoglobulin A (EMA-IgA) 13. There are few cases of gluten allergy reported and little is known about its natural history 14.

Besides wheat, foods that contain gluten include:

  • Barley
  • Bulgur
  • Durum
  • Farina
  • Graham flour
  • Malt
  • Rye
  • Semolina
  • Spelt (a form of wheat)
  • Triticale

Gluten can be hidden in foods, medications and nonfood products, including:

  • Modified food starch, preservatives and food stabilizers
  • Prescription and over-the-counter medications
  • Vitamin and mineral supplements
  • Herbal and nutritional supplements
  • Lipstick products
  • Toothpaste and mouthwash
  • Communion wafers
  • Envelope and stamp glue
  • Play dough

Diagnosing Celiac disease involves the measurement of several blood tests and may also require a small intestine biopsy through an endoscopy procedure.

  • Serology testing looks for antibodies in your blood. In celiac disease, antibodies are developed that target the body’s own tissue in the small intestine. These are known as autoantibodies. Celiac disease testing may involve several autoantibody tests including:
    • Anti-tissue transglutaminase antibodies immunoglobulin A (tTG-IgA): Testing for the presence of tTG-IgA is the preferred antibody test for celiac disease. This test is widely available and able to identify most people with celiac disease.
    • Anti-endomysial antibody immunoglobulin A (EMA-IgA): Testing for EMA-IgA antibodies is very accurate but takes longer to perform and can be more challenging to interpret. For that reason, EMA-IgA testing is often used when confirmation of the results of other antibody tests is needed.
    • Total IgA: Some people with celiac disease have low levels of all types of immunoglobulin A antibodies, which is called IgA deficiency. This can cause low levels of tTG-IgA and EMA-IgA antibodies despite the presence of celiac disease. Measuring total IgA can detect IgA deficiency and enhance interpretation of other antibody tests.
    • Anti-tissue transglutaminase antibodies immunoglobulin G (tTG-IgG): tTG-IgG is a different type of antibody that targets the small intestine. The tTG-IgG test is generally only used for celiac disease testing in patients with low total IgA.
    • Celiac disease blood tests can also look for antibodies that target gliadin, which is part of the gluten protein. These antibodies are known as anti-deamidated gliadin peptide (DGP) antibodies and include DGP-IgA and DGP-IgG. Tests for these antibodies are most often used in people with low total IgA levels or in children.
  • Genetic testing for human leukocyte antigens (HLA-DQ2 and HLA-DQ8) can be used to rule out celiac disease. Having DQ2 or DQ8 alone does not mean you have celiac disease. Most people with these gene variants do not develop celiac disease. If you do have DQ2 or DQ8, your doctor may recommend additional tests to check for or rule out celiac disease.
  • Endoscopy. This test uses a long tube with a tiny camera that’s put into your mouth and passed down your throat (upper endoscopy). The camera enables your doctor to view your small intestine and take a small tissue sample (biopsy) to analyze for damage to the villi.
  • Skin biopsies. A doctor may order skin biopsies if you have a rash that could be dermatitis herpetiformis. For skin biopsies, a doctor removes small pieces of skin tissue on and next to the rash. A pathologist will examine the tissue under a microscope to look for signs of dermatitis herpetiformis.

It’s important to be tested for celiac disease before trying a gluten-free diet. Eliminating gluten from your diet might make the results of blood tests appear normal.

There’s no cure for celiac disease, because people with celiac disease remain sensitive to gluten throughout their life. For most people, following a strict lifelong gluten-free diet can help manage symptoms and promote intestinal healing. By removing the cause of celiac disease, a gluten free diet allows the small bowel lining to heal and symptoms to resolve. As long as the gluten free diet is strictly adhered to, problems arising from celiac disease should not return. Relapse occurs if gluten is reintroduced into the diet.

Figure 1. Gluten related disorders classification (proposed new nomenclature and classification)

Classification of gluten-related disorders

Footnote: Gluten sensitivity (GS) = non-celiac gluten sensitivity (NCGS).

[Source 13]

Figure 2. Celiac disease where the body’s immune system attacks the lining of the small intestine after a person consumes gluten

celiac disease treatment

Celiac disease is also 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 10. Furthermore, first-degree family members (parent, child, sibling) of patients with celiac disease have an increased risk for the disease, already at a young age, ranging from 5% to 30%, depending on their sex and HLA makeup 15, 16. Celiac disease also is more common among people with certain other diseases, such as Down syndrome, Turner syndrome and type 1 diabetes.

Patients with other autoimmune diseases, including type 1 diabetes mellitus and autoimmune thyroid disease, or patients with selective immunoglobulin A deficiency, and those with certain syndromes such as Down syndrome, Turner syndrome, and Williams syndrome, have an increased risk of coeliac disease 15. More than 95% of patients with coeliac disease carry the HLA-DQ2 or -DQ8 heterodimers, and the rest express HLA-DQ that contain “half” of the coeliac disease-associated molecules. In coeliac disease, gluten peptides, after crossing the small intestinal epithelium into the lamina propria, are deaminated by the enzyme tissue-transglutaminase and presented by HLA-DQ2–positive or HLA-DQ8–positive antigen-presenting cells to activated T cells. Once activated, the T cells produce interferon-γ and other cytokines, leading to a higher expression of the HLA-DQ molecules and thereby to increased gluten peptide presentation. This inflammatory process mediated by T cells leads to mucosal damage of the small bowel 17.

The incidence of coeliac disease is increasing worldwide, and many patients remain undiagnosed, probably because of the clinical picture being so diverse and  because coeliac disease can affect any organ, and not just the gastrointestinal tract 18, 19, 20, 21. The development of coeliac disease and the onset of symptoms may occur at any age. The classical clinical picture of overt malabsorption with diarrhoea, abdominal distension, and weight loss is observed, but only in a minority of children. Nonspecific signs and symptoms such as iron deficiency anaemia, osteoporosis, or fatigue are now common and could be the only sign of coeliac disease 18. In addition, coeliac disease may be asymptomatic.

Figure 3. It is estimated that 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions.

celiac disease diagnosis
[Source: Beyond Celiac. Celiac Disease: Fast Facts 22 ]

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 on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body 10.

Celiac disease can be very serious. The disease can cause long-lasting digestive problems and keep your body from getting all the nutrients it needs. Celiac disease can also affect the body outside the intestine 23.

Celiac disease is different from gluten sensitivity or wheat intolerance 23. If you have gluten sensitivity, you may have symptoms similar to those of celiac disease, such as abdominal pain and tiredness. Unlike celiac disease, gluten sensitivity does not damage the small intestine.

People with gluten sensitivity have problems with gluten 24. Gluten-sensitive individuals cannot tolerate gluten and may develop gastrointestinal symptoms similar to those in celiac disease, but the overall clinical picture is generally less severe and is not accompanied by the concurrence of tissue transglutaminase autoantibodies or autoimmune comorbidities. Gluten sensitivityas a condition associated with prevalent gluten-induced activation of innate, rather than adaptive, immune responses in the absence of detectable changes in mucosal barrier function 25. It is different from celiac disease, an immune disease in which people can’t eat gluten because it will damage their small intestine 25. Unlike celiac disease, gluten sensitivity is not associated with increased intestinal permeability and does not damage the small intestine like celiac disease. Some of the symptoms of gluten sensitivity are similar to celiac disease. They include tiredness and stomachaches. It can cause other symptoms too, including muscle cramps and leg numbness.

Celiac disease is also different from a wheat allergy 26, 17. In both cases, your body’s immune system reacts to wheat. However, some symptoms in wheat allergies, such as having itchy eyes or a hard time breathing, are different from celiac disease. Wheat allergy is an immunoglobulin E–mediated reaction to the insoluble gliadins, particularly ω-5 gliadin, the major allergen of wheat-dependent, exercise-induced anaphylaxis (“baker’s asthma”) 27. Usually, patients with wheat allergy are not allergic to other prolamines containing grains, such as rye or barley and their wheat-free diet is less restrictive than the strict gluten-free diet for patients with celiac disease. The symptoms of wheat allergy develop within minutes to hours after gluten ingestion and are typical for an immunoglobulin E–mediated allergy, including itching and swelling in the mouth, nose, eyes, and throat; rash and wheezing; and life-threatening anaphylaxis. The gastrointestinal manifestations of wheat allergy may be similar to those of coeliac disease, but wheat allergy does not cause (permanent) gastrointestinal damage 26. Those with wheat allergy also benefit from the gluten free diet, although these patients often do not need to restrict rye, barley, and oats from their diet 26.

celiac disease

Long Term Health Effects of Celiac Disease

Celiac disease can develop at any age after people start eating foods or medicines that contain gluten. Celiac disease affects people differently. Some people develop symptoms as children and others as adults. Symptoms vary and may or may not occur in the digestive system. They may include diarrhea, abdominal pain, weight loss, irritability, and depression, among others. Irritability is one of the most common symptoms among children. In some cases, a diagnosis of celiac disease is missed because the symptoms are so varied and may only flare up occasionally 28.

Children and adults with untreated celiac disease may become malnourished, leading to additional serious health problems. These include the development of other autoimmune disorders like Type 1 diabetes and multiple sclerosis (MS), dermatitis herpetiformis (an itchy skin rash), anemia, weight loss, osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, intestinal cancers and in children, delayed growth and small stature 10. Among the possible complications of untreated celiac disease is the inability to develop optimal bone mass in children and the loss of bone in adults, both of which increase the risk of osteoporosis 28. Osteoporosis is a complication of untreated celiac disease. The small intestine is responsible for absorbing important nutrients, such as calcium. Calcium is essential for building and maintaining healthy bones. Even people with celiac disease who consume enough calcium are often deficient in this nutrient. And because calcium is needed to keep bones healthy, low bone density is common in both children and adults with untreated and newly diagnosed celiac disease 28.

Figure 4. 6-10 years is the average time a person waits to be correctly diagnosed.

celiac disease average diagnosis time
[Source: Beyond Celiac. Celiac Disease: Fast Facts 22]

Long-Term Health Conditions of Undiagnosed or Untreated Celiac Disease

  • Iron deficiency anemia
  • Early onset osteoporosis or osteopenia
  • Infertility and miscarriage
  • Lactose intolerance
  • Vitamin and mineral deficiencies
  • Central and peripheral nervous system disorders
  • Pancreatic insufficiency
  • Intestinal lymphomas and other gastrointestinal cancers (malignancies)
  • Gall bladder malfunction
  • Neurological manifestations, including ataxia, epileptic seizures, dementia, migraine, neuropathy, myopathy and multifocal leucoencephalopathy

Celiac disease complications

Long-term complications of celiac disease include:

  • accelerated osteoporosis or bone softening, known as osteomalacia
  • anemia
  • malnutrition, a condition in which you don’t get enough vitamins, minerals, and other nutrients you need to be healthy
  • nervous system problems
  • problems related to the reproductive system

Rare complications of celiac disease can include:

  • Intestinal cancer called adenocarcinoma, a type of cancer of the small intestine
  • Liver diseases, which may lead to cirrhosis or liver failure
  • Lymphoma, a cancer of part of the immune system called the lymph system that includes the gut.

People with celiac disease who have no symptoms can still develop complications over time if they do not get treatment.

Some people with celiac disease don’t respond to what they consider to be a gluten-free diet. This is known as nonresponsive celiac disease. Nonresponsive celiac disease is often due to contamination of the diet with gluten. Working with a dietitian can help you learn how to avoid all gluten. People with nonresponsive celiac disease might have:

  • Bacteria in the small intestine (small intestine bacterial overgrowth or SIBO)
  • Microscopic colitis
  • Poor pancreas function (pancreatic insufficiency)
  • Irritable bowel syndrome
  • Difficulty digesting sugar found in dairy products (lactose), table sugar (sucrose), or a type of sugar found in honey and fruits (fructose)
  • Refractory celiac disease

In rare cases, you may continue to have trouble absorbing nutrients even though you have been following a strict gluten-free diet. If you have this condition, called refractory celiac disease, your intestines are severely damaged and can’t heal. Then you’ll likely need to be evaluated in a specialized center. Refractory celiac disease can be quite serious, and there is currently no proven treatment. You may need to receive nutrients intravenously 23.

In a 1999 a large Italian study, Ventura, et al. found a correlation between the duration of exposure to gluten and the prevalence of autoimmune disorder in patients with celiac disease 29. The incidence of autoimmune disorder varied inversely as to the age of diagnosis of celiac disease, implying that the longer the exposure to gluten, the more likely one is to develop an autoimmune disorder 29. This is in keeping with the conclusion found by Cosnes et al 30 that a risk factor for developing autoimmune disorder was the diagnosis of celiac disease at a young age. However, the conclusion that a gluten free diet is protective against the development of autoimmune disorder is still controversial 31.

Table 1. Autoimmune and Other Conditions Associated with Celiac Disease

Autoimmune ConditionPrevalence in Celiac Disease Population
Autoimmune Hepatitis2%
Autoimmune Thyroid Disease26%
Chronic fatigue syndrome2%
Dermatitis Herpetiformis25%
Down’s Syndrome12%
Gluten Ataxia10-12%
Idiopathic Dilated Cardiomyopathy5.7%
Juvenile Idiopathic Arthritis1.5-6.6%
Liver Disease10%
Lymphocytic Colitis15-27%
Microscopic Colitis4%
Peripheral Neuropathy10-12%
Primary Bilary Cirrhosis3%
Sjögren’s Syndrome3%
Type 1 Diabetes8-10%
Unexplained infertility12%
[Source 10 ]

What causes celiac disease?

Research suggests that celiac disease only occurs in people who have certain genes and eat food that contains gluten, but the precise cause isn’t known. Experts are studying other factors that may play a role in causing the disease. Infant-feeding practices, gastrointestinal infections and gut bacteria might contribute, as well. Sometimes celiac disease becomes active after surgery, pregnancy, childbirth, viral infection or severe emotional stress.

When the body’s immune system overreacts to gluten in food, the reaction damages the tiny, hairlike projections (villi) that line the small intestine. Villi absorb vitamins, minerals and other nutrients from the food you eat. If your villi are damaged, you can’t get enough nutrients, no matter how much you eat.


Celiac disease almost always occurs in people who have one of two groups of normal gene variants called HLA-DQ2 and HLA-DQ8. People who do not have these gene variants are very unlikely to develop celiac disease. About 30 percent of people have HLA-DQ2 or HLA-DQ8. However, only about 3 percent of people with HLA-DQ2 or HLA-DQ8 develop celiac disease 32.

Researchers are studying other genes that may increase the chance of developing celiac disease in people who have DQ2 or DQ8.


Consuming gluten triggers the abnormal immune system response that causes celiac disease. However, not all people who have the gene variants DQ2 or DQ8 and eat gluten develop the disease. Research suggests that among children with a genetic predisposition for celiac disease, those who eat more gluten in early childhood may have a greater risk for celiac disease.5

Risk factors

Celiac disease tends to be more common in people who have:

  • A family member with celiac disease or dermatitis herpetiformis
  • Type 1 diabetes
  • Down syndrome or Turner syndrome
  • Autoimmune thyroid disease
  • Microscopic colitis (lymphocytic or collagenous colitis)
  • Addison’s disease

Researchers are studying other factors that may increase a person’s chances of developing celiac disease. For example, research suggest that a higher number of infections in early life and certain digestive tract infections may increase the risk. Experts also think changes in the microbiome—the bacteria in the digestive tract that help with digestion—could play a role in the development of celiac disease.

Symptoms of Celiac Disease

Celiac disease can be difficult to diagnose because it affects people differently. There are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body. Some people with celiac disease have no symptoms at all, but still test positive on the celiac disease blood test. A few others may have a negative blood test, but have a positive intestinal biopsy.

All people with celiac disease who have no symptoms can still develop long-term complications from the disease over time if they do not get treatment.

Some people develop celiac disease as a child, others as an adult. The reason for this is still unknown 10.

  • Gastrointestinal symptoms are still prominent, particularly in younger children. The onset of celiac disease in infancy and very early childhood may have severe gastrointestinal manifestations resulting in malnutrition, failure to thrive, and in some patients a protein-losing enteropathy. Although these were relatively common presentations of celiac disease in the past, they are rare nowadays 33.

Digestive symptoms of celiac disease may include:

  • bloating
  • chronic diarrhea
  • constipation
  • gas
  • lactose intolerance due to damage to the small intestine
  • loose, greasy, bulky, and bad-smelling stools
  • nausea or vomiting
  • pain in the abdomen

Here are the most common symptoms found in children 34:

  • abdominal bloating and pain
  • chronic diarrhea
  • vomiting
  • constipation
  • pale, foul-smelling, or fatty stool
  • weight loss
  • fatigue
  • irritability and behavioral issues
  • dental enamel defects of the permanent teeth
  • delayed growth and puberty
  • short stature
  • failure to thrive
  • Attention Deficit Hyperactivity Disorder (ADHD)

For children with celiac disease, being unable to absorb nutrients at a time when they are so important to normal growth and development can lead to:

  • damage to the permanent teeth’s enamel
  • delayed puberty
  • failure to thrive, meaning that an infant or a child weighs less or is gaining less weight than expected for his or her age
  • mood changes or feeling annoyed or impatient
  • slowed growth and short height
  • weight loss

Depending on how old you are when a doctor diagnoses your celiac disease, some symptoms, such as short height and tooth defects, will not improve.

Adults are less likely to have digestive symptoms, with only one-third experiencing diarrhea 34.

Adults are more likely to have:

  • unexplained iron-deficiency anemia
  • a red, smooth, shiny tongue
  • fatigue
  • bone or joint pain
  • headaches
  • arthritis
  • osteoporosis or osteopenia (bone loss)
  • liver and biliary tract disorders (transaminitis, fatty liver, primary sclerosing cholangitis, etc.)
  • depression or anxiety
  • peripheral neuropathy ( tingling, numbness or pain in the hands and feet)
  • seizures or migraines
  • missed menstrual periods
  • infertility or recurrent miscarriage
  • canker sores inside the mouth
  • dermatitis herpetiformis (itchy skin rash)
  • seizures
  • tingling numbness in the hands and feet
  • tiredness that lasts for long periods of time
  • abdominal pain and bloating
  • intestinal blockages
  • ulcers, or sores on the stomach or lining of the intestine

Dermatitis herpetiformis is an itchy, blistering skin rash that usually appears on the elbows, knees, buttocks, back, or scalp (see Figures 5 to 8). The rash affects about 10 percent of people with celiac disease. The rash can affect people of all ages but is most likely to appear for the first time between the ages of 30 and 40. Among people with untreated celiac disease, about 2 to 3 percent of children and 10 to 20 percent of adults have dermatitis herpetiformis 35. Men who have the rash also may have oral or, rarely, genital sores. Some people with celiac disease may have the rash and no other symptoms. After a person starts a gluten-free diet, the rash may take some time to heal and may return if a person consumes small amounts of gluten. If a doctor suspects you have dermatitis herpetiformis, he or she will perform a skin biopsy. A doctor then examines the skin tissue and checks the tissue for antibodies common in celiac disease. If the skin tissue has the antibodies, a doctor will perform blood tests to confirm celiac disease. If the skin biopsy and blood tests both suggest celiac disease, you may not need an intestinal biopsy.

Figure 5. Dermatitis herpetiformis

celiac disease rash

Figure 6. Dermatitis herpetiformis

Figure 7. Dermatitis herpetiformis

celiac disease rash

Figure 8. Dermatitis herpetiformis

celiac disease rash

Celiac disease also can produce a reaction in which your immune system, or your body’s natural defense system, attacks healthy cells in your body. This reaction can spread outside your digestive tract to other areas of your body, including your:

  • bones
  • joints
  • nervous system
  • skin
  • spleen

Abdominal pain and distention with diarrhea or even frank steatorrhea (oily stool or an increase in fat excretion in the stools) are hallmarks of celiac disease, but severe forms of these manifestations have become progressively less frequent, and milder forms are more common at initial presentation. Counter intuitively, severe constipation related to delay in orocecal transit time (time needed by food eaten by mouth to reach the cecum which is frequently used as an indicator of small intestinal transit time) 36, 37, possibly aggravated by disordered upper gastrointestinal motor function 38, can be the presenting manifestation in a significant number of children. Although celiac disease is typically thought to be associated with weight loss or failure to gain weight, some children with celiac disease are initially overweight or obese 39. Less common presentations include acute electrolyte disturbances, hypotension, and lethargy, and recurrent intussusception occurs more frequently in children with celiac disease 40.

  • There are also numerous extraintestinal manifestations, and almost any body system can be involved. Older children and adolescents are more likely to present with nongastrointestinal symptoms 41, 42, 43 and previously used terms of “typical” and “atypical” to describe gastrointestinal and extraintestinal symptoms, respectively, are now considered obsolete and no longer recommended 44. The variable nature of the clinical manifestations, and the fact that celiac disease may be asymptomatic, is believed to be largely responsible for the majority of people with celiac disease remaining undiagnosed.

A mild elevation of serum liver enzymes is also well described as a presenting manifestation of celiac disease in the pediatric age group and may account for up to 12% of children with unexplained hypertransaminasemia 45. The enzymes involved are alanine aminotransferase and aspartate aminotransferase, and typically these are elevated in the region of 2 to 3 times the upper limit of normal. Following institution of a gluten free diet, the majority of affected patients will have normal transaminase levels within 4 to 8 months 45. In a small number, hypertransaminasemia persists despite strict adherence to agluten free diet. In these, additional workup should be considered to look for other causes of liver disease, such as autoimmune hepatitis, which can be associated with celiac disease.

  • Anemia, most commonly as a result of iron deficiency, has been reported in 12% to 69% of newly diagnosed patients 46, 47, 48, 49 and appears more prevalent in celiac patients with an atrophic mucosa compared with those with mild enteropathy 50.
  • Linear growth failure as an isolated initial presentation of celiac disease is well described and can be found in up to 10% of children undergoing investigation for short stature 51, 52.
  • Dermatitis herpetiformis is considered a skin presentation of celiac disease and is more common in adults or older teenagers. It is characterized by symmetrical, pruritic blisters followed by erosions, excoriations, and hyperpigmentation most commonly involving elbows (90%), knees (30%), shoulders, buttocks, sacral region, and face 53. The diagnosis of dermatitis herpetiformis depends on demonstrating typical immunoglobulin A (IgA) deposits on skin biopsies 54.
  • Other manifestations include dental enamel hypoplasia (24), recurrent aphthous ulcers in the mouth, low–bone mineral density, and arthritis/arthralgia 55. Although children with low–bone mineral density appear better able to correct this deficiency after starting the gluten free diet, recovery can be delayed in some patients, whereas others are at risk for never achieving optimal bone density as they go through puberty 56, 57.
  • There appears to be a slight increase in the frequency of neurological symptoms including headache, peripheral neuropathy, and seizures in celiac disease 58, 59, 60, 61. In 1 young adult with celiac disease and epilepsy refractory to antiepileptic drugs, seizures were controlled with a gluten free diet 62.
  • Adolescents with celiac disease have been reported to have psychiatric issues including anxiety, recurrent panic attacks, hallucinations, depression, and an increased prevalence of suicidal behavior. There is some evidence that the gluten free diet may help alleviate depression in adolescents with celiac disease 63, 64.

Table 2. The clinical manifestations of gluten-related disorders are numerous and complex in nature and involve multiple organ systems. There is considerable overlap of symptoms between these conditions, which makes differentiation impossible on clinical grounds alone.

gluten related disorders symptoms
[Source 65 ]

Who Should Be Screened for Celiac Disease?

Screening is testing for diseases when you have no symptoms. According the the Celiac Disease Center at Columbia University Medical Center, “anyone who suffers from an unexplained, stubborn illness for several months, should consider celiac disease a possible cause and be properly screened for it.” 34

Doctors in the United States do not routinely screen people for celiac disease. However, blood relatives of people with celiac disease and those with type 1 diabetes should talk with their doctor about their chances of getting the disease to see if they should be tested.

First-degree relatives (parent, child, sibling) should be screened since they have a 1 in 10 risk of developing celiac disease compared to the general population risk of 1 in 100 66.

  1. Children older than 3 and adults experiencing symptoms of celiac disease.
  2. First-degree relatives of people with celiac disease (parent, child, sibling)
  3. Any individual with an associated autoimmune disorder or other condition, especially type 1 diabetes mellitus, autoimmune thyroid disease, autoimmune liver disease, Down syndrome, Turner syndrome, Williams syndrome, and selective immunoglobulin A (IgA) deficiency.

The First Step: tTG-IgA Test

For most children and adults, the best way to screen for celiac disease is with the Tissue Transglutaminase IgA antibody, plus an IgA antibody in order to ensure that the patient generates enough of this antibody to render the celiac disease test accurate. Total Serum IgA to test for IgA deficiency (this health condition can affect accuracy of antibody test). While it is rare, IgA deficiency can cause a negative blood test (or panel) but still experiencing symptom.

For young children (around age 2 years or below), Deamidated Gliadin IgA and IgG antibodies should also be included.

All celiac disease blood tests require that you be on a gluten-containing diet to be accurate.

  • Anti-tissue transglutaminase antibodies immunoglobulin A (tTG-IgA)– The tTG-IgA test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. This is called the test’s sensitivity. The same test will come back negative in about 95% of healthy people without celiac disease. This is called the test’s specificity. Though rare, this means patients with celiac disease could have a negative antibody test result.

There is also a slight risk of a false positive test result, especially for people with associated autoimmune disorders like type 1 diabetes, autoimmune liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis, and heart failure, who do not have celiac disease.

Furthermore, antibody tests may also have limitations. For example, antibodies may not be detected in people with celiac disease who are on a gluten-free diet. Because of this, diagnostic blood testing is typically done in people who have gluten in their diet.

There are other antibody tests available to double-check for potential false positives or false negatives, but because of potential for false antibody test results, a biopsy of the small intestine is the only way to diagnose celiac disease.

Other tests:

  • Anti-endomysial antibody immunoglobulin A (EMA-IgA): The EMA test has a specificity of almost 100%, but is not as sensitive as the tTG-IgA test. About 5-10% of people with celiac disease do not have a positive EMA test. It is also very expensive in comparison to the tTG-IgA and requires the use of primate esophagus or human umbilical cord. It is usually reserved for difficult to diagnose patients.
  • Total serum IgA: This test is used to check for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result. Some people with celiac disease have low levels of all types of immunoglobulin A antibodies, which is called IgA deficiency. This can cause low levels of tTG-IgA and EMA-IgA antibodies despite the presence of celiac disease. Measuring total IgA can detect IgA deficiency and enhance interpretation of other antibody tests. If you are IgA deficient, your doctor can order a DGP or tTG-IgG test.
  • Deaminated gliadin peptide (DGP IgA and IgG): Anti-deamidated gliadin peptide (DGP) antibodies blood tests can also look for antibodies that target gliadin, which is part of the gluten protein. This test can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies.
    • Anti-tissue transglutaminase antibodies immunoglobulin G (tTG-IgG): tTG-IgG is a different type of antibody that targets the small intestine. The tTG-IgG test is generally only used for celiac disease testing in patients with low total IgA.

While it is very rare, it is possible for someone with celiac disease to have negative antibody test results. If your tests were negative, but you continue to experience symptoms, consult your physician and undergo further medical evaluation.

Gluten Challenge

If you are currently on a gluten-free diet, your physician may recommend a gluten challenge to allow antibodies to build in your bloodstream prior to testing. The recommended gluten intake for the gluten challenge is two slices of wheat-based bread for 6-8 weeks. A gluten challenge should only be supervised by a physician trained in celiac disease, who can move you immediately to a biopsy if your symptoms are severe. Never undertake a gluten challenge when pregnant.

Genetic Testing

People with celiac disease carry one or both of the HLA-DQ2 and HLA-DQ8 genes, but so does up to 25-30% of the general population. Carrying HLA-DQ2 and/or HLA-DQ8 is not a diagnosis of celiac disease nor does it mean you will ever develop celiac disease. However, if you carry HLA-DQ2 and/or HLA-DQ8, your risk of developing celiac disease is 3% instead of the general population risk of 1%.

Since celiac disease is genetic, this means it runs in families. First-degree family members (parents, siblings, children), who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. The overall risk of developing celiac diseaes when the genotype is unknown is 7% to 20%.

A negative gene test excludes the possibility of later developing celiac disease, so this can be valuable information for first-degree family members. We recommend performing the genetic test for celiac disease in family members, especially children, to prevent future unnecessary screening. We recommend screening gene-positive first-degree relatives every 3-5 years.

Who Should Have Celiac HLA Testing?

  • Those on a gluten-free diet – celiac antibody blood testing is not accurate

When diagnosis of celiac disease is not clear

  • ambiguous antibody testing results (especially in children under the age of 3)
  • equivocal intestinal biopsy results
  • discrepancy between antibody and biopsy findings

Family members of people with celiac disease to evaluate risk

  • a negative result assures a 99% probability that the family member will NOT develop celiac disease
  • a positive result indicates the family member should follow up with celiac antibody testing every 2-3 years or immediately if symptoms develop

How Do You Get Tested?

Your physician should be able to order genetic testing. Genetic testing can be done by blood test, saliva test or cheek swab.

Genetic testing is expensive with the cost running in the hundreds of dollars, but may be covered by some insurance plans. First-degree family members unsure about the expense should weigh this against the time and expense of undergoing life-time serologic testing.

How Coeliac Disease is Diagnosed?

Differentiating celiac disease from wheat allergy and gluten sensitivity is important because there are significant differences in potential long-term health consequences. People with celiac disease are at increased risk for other autoimmune diseases such as autoimmune thyroiditis and should be monitored for these. Those with symptomatic celiac disease who do not follow a strict gluten free diet have increased risk for mortality and relative increased risk for intestinal malignancies 33. On the contrary, those with wheat allergy and gluten sensitivity may be able to follow a less restrictive diet and have a lower risk for long-term adverse health outcomes. Although symptom relief following self-initiation of a gluten free diet is evidence for the role of gluten, this is not diagnostic by itself. A gluten challenge should be considered in those who initiate a gluten free diet before confirmatory diagnostic testing, given the significance of the long-term clinical implications. The decision to undertake a gluten challenge should be considered carefully in the context of each individual patient.

Doctors use information from your medical and family history, a physical exam, a dental exam and medical test results to look for signs that you might have celiac disease. Doctors typically diagnose celiac disease with a combination of clinical suspicion, detection of specific autoantibodies to tissue-transglutaminase, endomysium, and deamidated forms of gliadin peptides, and histology of small bowel biopsies performed when the patient is on a gluten-containing diet 18. The characteristic histological alterations of the small bowel mucosa of patients with coeliac disease who consume gluten are partial to total villous atrophy with crypt hyperplasia and intraepithelial lymphocytic infiltration, rated according to the Marsh classification III and IV. At present, the only treatment of coeliac disease is lifelong adherence to a gluten-free diet that reduces the risk of complications and the increased mortality 17.

Many people with celiac disease don’t know they have it. It’s important to be tested for celiac disease before trying a gluten-free diet. Eliminating gluten from your diet might make the results of blood tests appear normal.

Two blood tests can help diagnose celiac disease:

  • Serology testing looks for antibodies in your blood. Elevated levels of certain antibody proteins indicate an immune reaction to gluten.
    • Commercial serological tests for both immunoglobulin A (IgA) and immunoglobulin G (IgG) antibodies against gliadin (AGA), anti-endomysial antibody immunoglobulin A (EMA-IgA), anti-tissue transglutaminase antibodies immunoglobulin A (tTG-IgA), and deamidated gliadin peptides (DGPs) are available. Serological tests for celiac disease are dependent on the consumption of gluten, and avoidance of gluten before testing can result in a false-negative result. Although the exact duration of gluten consumption required before testing is not known, experts agree that the ingestion of ≥10 g of gluten (equivalent to 2 slices of whole wheat bread) per day for ≥8 weeks should allow for confident interpretation of the tissue transglutaminase antibody test result.
    • Present guidelines recommend the anti-tissue transglutaminase antibodies immunoglobulin A (tTG-IgA) as the most cost-effective and reliable test to identify people who may have celiac disease 67, 68, 69, 70. Obtaining a serum IgA level at the same time should be considered to identify those who have selective IgA deficiency. The tissue transglutaminase-IgA antibody is performed by means of an enzyme-linked immunosorbent assay or radio immune assay (RIA) method and is highly sensitive and specific. The anti-endomysial antibody immunoglobulin A (EMA-IgA) is less sensitive than the tissue transglutaminase-IgA (tTG-IgA) but slightly more specific. The endomysium requires an immunofluorescent technique using monkey esophagus or human umbilical cord as the substrate. It is more expensive than the tTG and subject to interobserver variability, and thus is prone to false-negative results and, to a lesser extent, particularly at low titers, to false-positive results in inexperienced hands.The antibodies against gliadin tests are both poorly sensitive and specific compared with the tissue transglutaminase and endomysium, and prone to wide variability between laboratories. Therefore, antibodies against gliadin (AGA) tests are not recommended for initial diagnosis of celiac disease 71, 68, 69. Deamidated gliadin peptides (DGPs) tests detect antibodies against synthetically derived peptides and perform better than the antibodies against gliadin (AGA) tests. The DGP-IgG has comparable specificity but lower sensitivity than the tissue transglutaminase-IgA (tTG-IgA) and endomysium-IgA (EMA-IgA), whereas the DGP-IgA is both less sensitive and specific. Use of a panel of antibodies instead of a single tTG-IgA test is not recommended. Although this approach may be associated with a marginal increase in the sensitivity of the test, it decreases the specificity and significantly increases the costs 69, 72.
    • Point-of-Care Tests: Rapid tests for tTG antibodies that can be used at the point of care have accuracy similar to that of tTG tests by laboratory detection 73. These point of care tests do not allow for quantitative analysis of the antibody levels and therefore should not be used to replace laboratory testing. If a point of care test is positive, the test should be repeated by means of a standard laboratory test before diagnosis and treatment of celiac disease. In addition, a negative point of care test performed by someone who has not been specifically trained to perform the test should be ignored and repeated by means of a laboratory test.
  • Genetic testing for human leukocyte antigens (HLA-DQ2 and HLA-DQ8) can be used to rule out celiac disease.
    • The HLA DQ heterodimers DQ2 and/or DQ8 are necessary for celiac disease but not specific to people with celiac disease, and can be found in up to 40% of the general population 33.Testing for HLA-DQ2/8 is best reserved for patients in whom there is a diagnostic dilemma, such as when there is a discrepancy between the serological and histologic findings or when a gluten free diet has been started before any testing. In such patients, if neither HLA-DQ2 nor DQ8 is present, celiac disease is highly unlikely, and an alternative diagnosis should be sought.It has been recommended that the HLA test should be used as a first test when screening asymptomatic people at increased risk for celiac disease such as family members of an index case 73. In those who are negative for both DQ2 and DQ8 alleles, no further testing for celiac disease is needed, whereas in all other patients testing for tTG/EMA antibodies is needed to identify those who require intestinal biopsies to confirm the diagnosis. Currently, the HLA tests are expensive, and the cost-effectiveness of such a strategy has not been determined 33.

If the results of these tests indicate celiac disease, your doctor will likely order one of the following tests:

  • Endoscopy. This test uses a long tube with a tiny camera that’s put into your mouth and passed down your throat (upper endoscopy). The camera enables your doctor to view your small intestine and take a small tissue sample (biopsy) to analyze for damage to the villi.
  • Capsule endoscopy. This test uses a tiny wireless camera to take pictures of your entire small intestine. The camera sits inside a vitamin-sized capsule, which you swallow. As the capsule travels through your digestive tract, the camera takes thousands of pictures that are transmitted to a recorder.

If your doctor suspects you have dermatitis herpetiformis, he or she might take a small sample of skin tissue to examine under a microscope (skin biopsy).

Confirming the Diagnosis of Celiac Disease

The diagnosis of celiac disease is confirmed on demonstration of the characteristic changes in the histology of the small intestinal mucosa. Biopsies are obtained from the duodenum via an upper gastrointestinal endoscopy. Initially, the histologic changes may be patchy in distribution and confined to the duodenal bulb, so it is recommended that 1 or 2 biopsies be obtained from the bulb and ≥4 from the distal duodenum 67, 68.

Documentation of the characteristic histologic findings of celiac disease on small intestinal biopsy has been considered central to the diagnosis for decades. The cascade of immunologic events that follows ingestion of gluten in those predisposed to develop celiac disease result in an inflammatory state causing derangement of the mucosal architecture. The characteristic microscopic features include infiltration of lymphocytes in the epithelium, increased density and depth of the crypts, and progressive flattening of the villi. This progression was first described by Marsh 74 in 1992, and his scoring system, from stage 0 (normal) to stage 3 (villus blunting), subsequently modified by Oberhuber et al 75, is now widely used by pathologists to diagnose celiac disease.

It is important to note that these changes are not unique for celiac disease and can be seen in other disease processes such as autoimmune enteropathy, food allergies (in children, particularly allergies to cow’s milk and soy protein), Crohn disease, and a number of viral, bacterial, and parasitic infections. Therefore, in addition to the biopsy findings, the clinical history, results of the serological tests, and response to a strict gluten free diet are all essential considerations to confirm a diagnosis of celiac disease 76.

Although a nonbiopsy diagnosis of celiac disease is desirable, there are potential risks associated with skipping the biopsy. There is currently no standardization of serological tests for celiac disease in the United States, and marked variation in antibody levels between commercial assays when the same serum samples are tested has been documented 77, 78, 79. Consequently, it is possible that without biopsy confirmation, some children may be falsely diagnosed with celiac disease and placed on treatment. Because a strict gluten free diet is cumbersome, expensive, and has an adverse impact on the quality of life of the individual, it is important to confirm the diagnosis before recommending such a lifelong dietary change. Another possible disadvantage of a nonbiopsy diagnosis is the potential for missing additional gastrointestinal disorders (such as peptic esophagitis, EoE, Helicobacter pylori gastritis), which may occur as comorbidities in celiac patients and would not be diagnosed without an endoscopy 80.

What Follow Up is Needed for Celiac Disease?

Repeat determination of celiac disease serological tests at 3- to 6-month intervals demonstrating a progressive decline in antibody levels suggests good compliance. Conversely, failure to demonstrate progressive decline in antibody levels, or an increase in these levels at any stage, requires careful review of the diet by a knowledgeable dietitian for continued overt or inadvertent gluten ingestion. Once you’re symptom free, and the antibody levels have returned to normal, follow-up visits may occur on an annual basis 33.

Although there are some recommendations regarding testing for nutrient deficiencies at the time of diagnosis, these are not based on any good evidence 81. The gluten free diet may be deficient in micronutrients such as iron, folate, and B vitamins, and monitoring for micronutrient deficiency is a consideration. As people with celiac disease are at increased risk for other autoimmune disorders such as autoimmune thyroiditis, monitoring for such conditions should also be considered 33.

What Celiac Disease Foods to Avoid

The Big 3: Wheat, Barley, Rye

1) Wheat is commonly found in:

  • breads
  • baked goods
  • soups
  • pasta
  • cereals
  • sauces
  • salad dressings
  • roux

Varieties and derivatives of wheat such as:

  • wheatberries
  • durum
  • emmer
  • semolina
  • spelt
  • farina
  • farro
  • graham
  • KAMUT® khorasan wheat
  • einkorn wheat

2) Barley is commonly found in:

  • malt (malted barley flour, malted milk and milkshakes, malt extract, malt syrup, malt flavoring, malt vinegar)
  • food coloring
  • soups
  • beer
  • Brewer’s Yeast

3) Rye is commonly found in:

  • rye bread, such as pumpernickel
  • rye beer
  • cereals

4) Triticale is a newer grain, specifically grown to have a similar quality as wheat, while being tolerant to a variety of growing conditions like rye. It can potentially be found in:

  • breads
  • pasta
  • cereals

5) Malt in various forms including:

  • malted barley flour,
  • malted milk or milkshakes,
  • malt extract,
  • malt syrup,
  • malt flavoring,
  • malt vinegar

6) Brewer’s Yeast

7) Wheat Starch that has not been processed to remove the presence of gluten to below 20ppm and adhere to the FDA Labeling Law. According to the FDA, if a food contains wheat starch, it may only be labeled gluten-free if that product has been processed to remove gluten, and tests to below 20 parts per million of gluten. With the enactment of this law on August 5th, 2014, individuals with celiac disease or gluten intolerance can be assured that a food containing wheat starch and labeled gluten-free contains no more than 20ppm of gluten. If a product labeled gluten-free contains wheat starch in the ingredient list, it must be followed by an asterisk explaining that the wheat has been processed sufficiently to adhere to the FDA requirements for gluten-free labeling.

Common Foods That Contain Gluten

  • Pastas: raviolis, dumplings, couscous, and gnocchi
  • Noodles: ramen, udon, soba (those made with only a percentage of buckwheat flour) chow mein, and egg noodles. (Note: rice noodles and mung bean noodles are gluten free)
  • Breads and Pastries: croissants, pita, naan, bagels, flatbreads, cornbread, potato bread, muffins, donuts, rolls
  • Crackers: pretzels, goldfish, graham crackers
  • Baked Goods: cakes, cookies, pie crusts, brownies
  • Cereal & Granola: corn flakes and rice puffs often contain malt extract/flavoring, granola often made with regular oats, not gluten-free oats
  • Breakfast Foods: pancakes, waffles, french toast, crepes, and biscuits.
  • Breading & Coating Mixes: panko breadcrumbs
  • Croutons: stuffings, dressings
  • Sauces & Gravies (many use wheat flour as a thickener): traditional soy sauce, cream sauces made with a roux
  • Flour tortillas
  • Beer (unless explicitly gluten-free) and any malt beverages (see “Distilled Beverages and Vinegars” below for more information on alcoholic beverages)
  • Brewer’s Yeast
  • Anything else that uses “wheat flour” as an ingredient

Distilled Beverages And Vinegars

Most distilled alcoholic beverages and vinegars are gluten-free. These distilled products do not contain any harmful gluten peptides even if they are made from gluten-containing grains. Research indicates that the gluten peptide is too large to carry over in the distillation process, leaving the resulting liquid gluten-free.

Wines and hard liquor/distilled beverages are gluten-free. However, beers, ales, lagers, malt beverages and malt vinegars that are made from gluten-containing grains are not distilled and therefore are not gluten-free. There are several brands of gluten-free beers available in the United States and abroad.

Foods That May Contain Gluten

  • Energy bars/granola bars – some bars may contain wheat as an ingredient, and most use oats that are not gluten-free
  • French fries – be careful of batter containing wheat flour or cross-contact from fryers
  • Potato chips – some potato chip seasonings may contain malt vinegar or wheat starch
  • Processed lunch meats
  • Candy and candy bars
  • Soup – pay special attention to cream-based soups, which have flour as a thickener. Many soups also contain barley
  • Multi-grain or “artisan” tortilla chips or tortillas that are not entirely corn-based may contain a wheat-based ingredient
  • Salad dressings and marinades – may contain malt vinegar, soy sauce, flour
  • Starch or dextrin if found on a meat or poultry product could be from any grain, including wheat
  • Brown rice syrup – may be made with barley enzymes
  • Meat substitutes made with seitan (wheat gluten) such as vegetarian burgers, vegetarian sausage, imitation bacon, imitation seafood (Note: tofu is gluten-free, but be cautious of soy sauce marinades and cross-contact when eating out, especially when the tofu is fried)
  • Soy sauce (though tamari made without wheat is gluten-free)
  • Self-basting poultry
  • Pre-seasoned meats
  • Cheesecake filling – some recipes include wheat flour
  • Eggs served at restaurants – some restaurants put pancake batter in their scrambled eggs and omelets, but on their own, eggs are naturally gluten-free

Other Items That Must Be Verified By Reading The Label Or Checking With The Manufacturer

  • Lipstick, lipgloss, and lip balm because they are unintentionally ingested
  • Communion wafers
  • Herbal or nutritional supplements
  • Drugs and over-the-counter medications (Learn about Gluten in Medication)
  • Vitamins and supplements (Learn about Vitamins and Supplements)
  • Play-dough: children may touch their mouths or eat after handling wheat-based play-dough. For a safer alternative, make homemade play-dough with gluten-free flour.

Gluten in Medication 82

The true chances of getting a medication that contains gluten is extremely small, but you should still eliminate all risks by evaluating the ingredients in your medications by reading the medicine labels.

Medications are composed of many ingredients, both inside and outside of the product. These ingredients, also known as excipients, include the active component, absorbents (which absorb water to allow the tablet to swell and disintegrate), protectants, binders, coloring agents, lubricators, and bulking agents (which allow some products to dissolve slowly as they travel throughout the intestinal tract). Excipients can be synthetic or from natural sources that are derived from either plants or animals. Excipients are considered inactive and safe for human use by the FDA, but can be a potential source for unwanted reactions.

  • Dr. Steve Plogsted (Associate Clinical Professor of Pharmacy, Ohio Northern University College of Pharmacy) maintains a website that provides information regarding gluten-free drugs 83. However, this site is for informational purposes only and may contain inaccuracies. Dr. Plogsted advises that, “All persons should interpret the information with caution and should seek medical advice when necessary.” 83

Vitamins & Supplements 84

Vitamin and mineral therapy can be used in addition to the standard gluten-free diet to hasten a patient’s recovery from nutritional deficiency. However, certain ingredients in vitamins and supplements – typically the inactive ingredients – can contain gluten, so extra care must be taken to avoid any gluten exposure.

People recently diagnosed with celiac disease are commonly deficient in fiber, iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, and vitamin D, as well as in calories and protein. Deficiencies in copper and vitamin B6 are also possible, but less common. A study from 2002 by Bona et. al. indicated that the delay in puberty in children with celiac disease may partially be due to low amounts of B vitamins, iron, and folate.

However, after treatment with a strict gluten-free diet, most patients’ small intestines recover and are able to properly absorb nutrients again, and therefore do not require supplementation. For certain patients however, nutrient supplements may be beneficial.

It is also important to remember that “wheat-free” does not necessarily mean “gluten-free.” Be wary, as many products may appear to be gluten-free, but are not.

If In Doubt, Go Without !

When unable to verify ingredients for a food item or if the ingredient list is unavailable DO NOT EAT IT. Adopting a strict gluten-free diet is the only known treatment for those with gluten-related disorders.

How can I identify and avoid foods and drinks that contain gluten?

A registered dietitian can help you learn to identify and avoid foods and drinks that contain gluten when you shop, prepare foods at home, or eat out.

For example, when you shop and eat at home:

  • carefully read food labels to check for grains that contain gluten—such as wheat, barley, and rye—and ingredients or additives made from those grains.
  • check for gluten-free food labeling.
  • don’t eat foods if you aren’t sure whether they contain gluten. If possible, contact the company that makes the food or visit the company’s website for more information.
  • store and prepare your gluten-free foods separately from other family members’ foods that contain gluten to prevent cross-contact.

When you eat out at restaurants or social gatherings:

  • before you go out to eat, search online for restaurants that offer a gluten-free menu.
  • review restaurant menus online or call ahead to make sure a restaurant can accommodate you safely.
  • at the restaurant, let the server know that you have celiac disease. Ask about food ingredients, how food is prepared, and whether a gluten-free menu is available. Ask to talk with the chef if you would like more details about the menu.
  • when attending social gatherings, let the host know you have celiac disease and find out if gluten-free foods will be available. If not, or if you are unsure, bring gluten-free foods that are safe for you to eat.

What is Celiac Disease Diet?

If you have celiac disease, you will need to remove foods and drinks that contain gluten from your diet. Following a gluten-free diet can relieve celiac disease symptoms and heal damage to the small intestine. People with celiac disease need to follow a gluten-free diet for life to prevent symptoms and intestinal damage from coming back. Your doctor or a registered dietitian can guide you on what to eat and drink to maintain a balanced diet to make sure that you get the nutrients you need.

Gluten occurs naturally in certain grains, including:

  • wheat and types of wheat, such as durum, emmer, semolina, and spelt
  • barley, which may be found in malt, malt extract, malt vinegar, and brewer’s yeast
  • rye
  • triticale, a cross between wheat and rye

Gluten is found in foods that contain ingredients made from these grains, including baked goods, baking mixes, breads, cereals, and pastas. Drinks such as beer, lagers, ale, flavored liquors, and malt beverages may also contain gluten.

Many food ingredients and additives such as colorings, flavorings, starches, and thickeners are made from grains that contain gluten. These ingredients are added to many processed foods, including foods that are boxed, canned, frozen, packaged, or prepared. Therefore, gluten may be found in a variety of foods, including candy, condiments, hot dogs and sausages, ice cream, salad dressing, and soups.

  • Babies and Infants

Identifying preventive strategies that would reduce the prevalence of coeliac disease has been a major target of research in recent years 16, 85. Investigated preventive strategies relate to early infant feeding practices, namely to the possible protective effect of breast-feeding, the introduction of gluten while the infant is still being breast-fed, and the age when gluten is introduced into the infant’s diet.

The risk of inducing celiac disease through a gluten-containing diet exclusively concerns persons carrying at least one of the coeliac risk alleles (celiac disease genes). This applies to 30% to 40% of the general population in Europe and to ∼75% to 80% of the offspring of families in which at least one first degree relative (father, mother, sibling) is affected by celiac disease 16, 85. Because the genetic risk alleles are generally not known in an infant at the time of solid food introduction, the European Society for Paediatric Gastroenterology, Hepatology and Nutrition propose that the following recommendations are applicable to all infants, although accepting that they may not be of importance to approximately two-thirds of the population without a genetic predisposition 86.

The European Society for Paediatric Gastroenterology, Hepatology and Nutrition recommended in 2016, based on observational data, gluten can be introduced into the infant’s diet between the ages of 4 and 12 completed months (*4 completed months = 17 weeks of age). The age of gluten introduction in infants in this age range does not seem to influence the absolute risk of developing coeliac disease autoimmunity (defined as positive serology) or celiac disease during childhood 86. Evidence from these randomised controlled trials showed that the age of gluten introduction into the infant’s diet, whether early or late, influences the incidence of each during the first 2 years, but not the cumulative incidence and prevalence of celiac disease during childhood, and, thus, indicated that primary prevention of celiac disease through nutritional interventions is not possible at the present time 16, 85. A systematic review that evaluated evidence from prospective observational studies published up until February 2015 also showed that breast feeding, any or at the time of gluten introduction, as compared to gluten introduction after weaning (i.e., cessation of breast feeding), has not been shown to reduce the risk of developing celiac disease during childhood and had no preventive effect on the development of coeliac disease autoimmunity or celiac disease during childhood 87. Introducing gluten while the infant is being breast-fed cannot be recommended as a means of reducing the risk of developing celiac disease 88. No recommendation can be made regarding the type of gluten to be used at introduction.

Neither the optimal amounts of gluten to be introduced at weaning nor the effects of different wheat preparations on the risks of developing celiac disease and coeliac disease autoimmunity have been established. Despite the limited evidence regarding the exact amounts and with no randomised controlled trials to support it, the European Society for Paediatric Gastroenterology, Hepatology and Nutrition suggests that consumption of large amounts of gluten should be discouraged during the first months after gluten introduction 88.

  • Gluten Introduction in Children From Families With a First-Degree Relative With Celiac Disease

The very early development of celiac disease and coeliac disease autoimmunity (<3–5 years of age) seems to affect preferentially children carrying the very high risk of celiac disease alleles (HLA-DQ2.5 homozygous), which are found in only 1% to 2% of the general population but in 10% to 15% of children with first-degree relatives having celiac disease 88.

It remains a matter of debate whether or not separate recommendations for gluten introduction should be formulated for children from families with first-degree relatives who have celiac disease that differ from the recommendations made for the general population. Although present evidence does not support separate recommendations, highlighting the available literature is, however, essential.

Because of a lack of consensus within the group on how to interpret the limited evidence available, no recommendations have been formulated 88. This may change when more data on the outcome of these children become available with long-term follow-up (symptoms, complications, final height). On one hand, it can be argued that delaying gluten introduction toward the end of the first year may be considered in all infants from coeliac disease families to reduce the risk of very early celiac disease manifestation with potential adverse effects on growth and development at a young age, even though delaying gluten introduction may only benefit the 10% to 15% who have the high risk alleles. An alternative approach could be intensive celiac disease screening such as HLA typing in all children born in families with a first-degree relative with celiac disease to assess the risk of coeliac disease by identifying infants with high risk alleles 89, and careful serological screening after gluten introduction to detect celiac disease before deficiencies of macro- and micronutrients develop 88.

What You Can Eat

Fortunately, there are many healthy and delicious foods that are naturally gluten-free. Many foods, such as meat, fish, fruits, vegetables, rice, and potatoes, without additives or some seasonings, are naturally gluten-free. Flour made from gluten-free foods, such as potatoes, rice, corn, soy, nuts, cassava, amaranth, quinoa, buckwheat, or beans are safe to eat.

The most cost-effective and healthy way to follow the gluten-free diet is to seek out these naturally gluten-free food groups, which include:

  • Fruits
  • Vegetables
  • Meat and poultry
  • Fish and seafood
  • Dairy
  • Beans, legumes, and nuts
gluten free foods

There are many naturally gluten-free grains that you can enjoy in a variety of creative ways. Many of these grains can be found in your local grocery store, but some of the lesser-known grains may only be found in specialty or health food stores. It is not recommended to purchase grains from bulk bins because of the possibility for cross-contact with gluten.

The following grains and other starch-containing foods are naturally gluten-free:

  • Rice
  • Cassava
  • Corn (maize)
  • Soy
  • Potato
  • Tapioca
  • Beans
  • Sorghum
  • Quinoa
  • Millet
  • Buckwheat groats (also known as kasha)
  • Arrowroot
  • Amaranth
  • Teff
  • Flax
  • Chia
  • Yucca
  • Gluten-free oats
  • Nut flours

There has been some research that some naturally gluten-free grains may contain gluten from cross-contact with gluten-containing grains through harvesting and processing. If you are concerned about the safety of a grain, purchase only versions that are tested for the presence of gluten and contain less than 20 ppm.

Talk with your doctor or a registered dietitian about whether you should include oats in your diet and how much. Research suggests that most people with celiac disease can safely eat moderate amounts of oats. If you do eat oats, make sure they are gluten-free. Cross-contact between oats and grains that contain gluten is common and can make oats unsafe for people with celiac disease.

Celiac Disease Treatment

Currently, the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet. Gluten is a protein found naturally in certain grains, including wheat, barley, rye and sometimes oats. Oats are constitutionally gluten free but can be cross-contaminated with wheat during processing. Gluten is also added to many other foods and products. Gluten can be hidden in foods, medications and nonfood products, including:

  • Modified food starch, preservatives and food stabilizers
  • Prescription and over-the-counter medications
  • Vitamin and mineral supplements
  • Herbal and nutritional supplements
  • Lipstick products
  • Toothpaste and mouthwash
  • Communion wafers
  • Envelope and stamp glue
  • Play dough

In people who have celiac disease, consuming gluten triggers an abnormal immune system reaction that damages the small intestine. On the gluten-free diet, the small intestinal mucosal injury heals and gluten-induced symptoms and signs disappear 11. Many people see symptoms improve within days to weeks of starting the gluten-free diet 90. The mucosal healing is a prerequisite for sustaining health and is also obtained with a diet containing oats (100% pure uncontaminated oats) and trace industrially purified wheat starch-based gluten-free products 11. The small intestinal mucosa does not heal in noncompliant people, nor when a patient is inadvertently ingesting gluten.

Your doctor will explain the gluten-free diet and may refer you to a registered dietitian who specializes in treating people who have celiac disease. The dietitian will teach you how to avoid gluten while following a healthy diet and recommend substitutes for foods that contain gluten. He or she will help you:

  • check food and product labels for gluten
  • design everyday meal plans
  • make healthy choices about foods and drinks

If your symptoms continue or come back after you start a gluten-free diet, you may still be eating or drinking a small amount of gluten. Keep a food journal and talk with your doctor and a registered dietitian about your diet and products you use that might contain gluten. Finding and avoiding all sources of gluten may help your symptoms improve. Hidden sources of gluten include additives made with wheat, such as:

  • modified food starch
  • malt flavoring
  • preservatives
  • stabilizer

In many European countries, industrially purified wheat starch–based gluten-free flours have been part of the gluten-free diet treatment in celiac disease. It was estimated that starch flours meant for patients with celiac disease had a content of <100 ppm (very low gluten) or <20 ppm (gluten-free) 11. As reviewed by Hischenhuber et al 91, evidence-based studies show that a diet including industrially purified gluten-free wheat starch–based flours is safe and the small-intestinal mucosa heals and stays long-term morphologically normal. No differences were observed when comparing the clinical and biopsy results to those patients on a diet that is gluten-free by nature.

The dogma on oats toxicity for patients with celiac disease was challenged by Janatuinen et al in 1995 92. Follow-up evidence-based clinical studies, in children and adults, confirmed avenin not to be harmful, neither clinically or at the mucosal level. This holds true also for dermatitis herpetiformis 93. All gluten-intolerant patients in Finland, both children and adults, have been allowed to consume oats for the last decade. Today 86% of all diagnosed patients have a gluten-free diet including oats. In Europe, an allowance of oats that does not contain wheat, rye, or barley and the gluten level does not exceed 20 ppm, may be determined at the national level. In the United States, oats are not included as one of the prohibited grains and can be labeled as gluten-free, as long as the oats contain <20 ppm gluten. Barley is the grain that often contaminates oats 94, 95. The US Food and Drug Administration has stated that for most individuals with celiac disease, oats can add whole-grain options, nutrient enrichment, and dietary variety. Health Canada in their 2015 review confirms the 2007 conclusions made by Health Canada on the safety of the introduction of uncontaminated oats into the gluten free diet of individuals with celiac disease. More recent information establishes no evidence to restrict such consumption to a limited daily amount 96.

Starch hydrolysates of wheat origin—wheat-based glucose syrups, dextrose, and maltodextrins—are found in >50% of European processed food. It was shown that these common foodstuffs and ingredients elicited no harmful effects to patients with celiac disease 97. The wheat origin of these ingredients does not have to be mentioned on the label of the final foodstuff intended to the end consumer (Commission Directive 2007/68/EC).

Development of adjunctive or alternative therapies is on its way. There are several novel treatment pipelines within academy and industry. Examples are the ideas of using glutenases as a drug to degrade the ingested gluten, polymers to bind and sequester the gluten to the feces, and also vaccine development for an immunotherapy to induce tolerance towards gluten 11.

Gluten free diet

A gluten-free diet is a diet that excludes foods containing gluten. Gluten is a mix of protein (glutenins and gliadins) found in wheat, rye, and barley. Oats are constitutionally gluten free but can be cross-contaminated with wheat during processing 1. Cross contamination occurs when food allergens come into contact with a food that does not contain that allergen.

If you have medically diagnosed Celiac disease you must follow a strict gluten-free diet for your whole life. This is because your sensitivity to gluten will never disappear. Every time you eat gluten, even in very small amounts, it will cause damage to your small bowel.

Your doctor may advise you to follow a gluten-free diet for other reasons — for example, if you have irritable bowel syndrome or ‘non-celiac gluten sensitivity’. This refers to a range of symptoms attributed to eating gluten, such as dermatitis herpetiformis. Their cause and treatment, however, is not well understood.

On a gluten-free diet you can eat:

  • foods that are naturally gluten-free such as fresh fruit and vegetables, fresh meats, eggs, nuts and legumes, milk, fats and oils and gluten-free grains such as rice and corn
  • products labelled ‘gluten-free’ irrespective of their country of origin
  • products that use the ‘Crossed Grain Logo’. This logo means the food item is suitable for a gluten-free diet wherever you are
  • products that are gluten-free according to their ingredients list

Many people think a gluten-free diet is a healthy alternative, but it’s not 98. Gluten-free food products often have higher fat or sugar contents to make the food tastier and give them a better consistency.

A gluten-free diet is essential for people medically diagnosed with Celiac disease. Others need to be very careful because a gluten-free diet can lack essential nutrients if it’s not balanced well 99. Reasons for following a gluten free diet included the belief that the diet would decrease systemic inflammation and improve athletic performance. To further explore this concept, Lis et al. 98 designed a randomized, controlled, double-blind crossover study in 13 nonceliac cyclists. Subjects were randomly assigned to receive either 1 week of a gluten-containing diet or a gluten free diet and then crossed over after a 10-days washout period. Data on gastrointestinal symptoms as well as athletic performance on timed trials were collected at the end of each diet and there were no significant differences found between the short-term gluten free diet compared with the gluten-containing diet 98. Future studies will be needed to further explore if this trend of athletes using a gluten free diet is sustained, and whether this diet makes any significant difference in athletic performance or overall well-being.

Gluten itself doesn’t offer special nutritional benefits but the many whole grains that contain gluten do. They’re rich in an array of vitamins and minerals such as B vitamins, folate and iron, as well as fiber. You may miss out on these nutritional benefits if you follow a gluten-free diet and have not sought professional help from a dietitian to ensure your diet is balanced.

It’s a good idea to seek guidance about following a gluten-free diet from a dietitian, especially if you have other medical conditions or dietary requirements.

A dietitian who works with people with celiac disease can help you plan a healthy gluten-free diet. A dietitian can:

  • prepare an individual dietary plan
  • show you how to read food labels
  • make sure your diet is nutritionally balanced
  • determine if you need vitamin supplements.

Some gluten-free foods that people with celiac disease can enjoy include:

  • meat products – unprocessed meat, fish, chicken, bacon, ham off the bone and meats that are frozen or canned, but with no sauce
  • dairy products – eggs, full-cream milk, low-fat milk, evaporated milk, condensed milk, fresh cream, yogurt, processed or block cheese, and some custards, ice creams and soy milks
  • fruits and vegetables – fresh, canned or frozen (but not sauced), fruit juices
  • seeds, nuts and nut butters
  • gluten-free cereal and baking products – corn (maize) flour, soya flour, lentil flour, rice (all types), rice flour, rice bran, potato flour, sorghum, buckwheat, millet, amaranth, breakfast cereals made from corn and rice (without malt extract from barley), polenta and psyllium
  • gluten-free bread, cakes and biscuits – most rice crackers, corn cakes, rice crispbreads, corn tortillas and corn taco shells, packaged breads labelled gluten free, packaged biscuits and cakes labelled gluten free
  • gluten-free pasta and noodles – gluten free pasta, rice noodles, rice or bean vermicelli and 100 per cent buckwheat noodles
  • condiments – tahini, jam, honey, maple syrup, cocoa, all vinegars (except malt vinegar), tomato pastes, some sauces and some salad dressings
  • snacks – plain chips, plain corn chips and unflavored popcorn
  • drinks – water, full-cream and low-fat milk, fruit and vegetable juices, tea, coffee, mineral water, wine, spirits and liqueurs.

Naturally gluten-free cereal products and grains that can be enjoyed include:

  • amaranth
  • arrowroot
  • buckwheat (despite its name it is not a type of wheat)
  • chestnut flour
  • chickpea flour (also known as gram flour and besan)
  • coconut flour
  • cornflour (from maize) – some cornflours are not made from corn, so always check the label
  • cornmeal
  • corn tortillas
  • lentil flour
  • millet meal
  • pappadums (most types)
  • polenta
  • potato flour
  • psyllium
  • quinoa
  • rice (any kind)
  • rice bran
  • rice flour
  • rice vermicelli
  • sago
  • sorghum
  • soy flour
  • tapioca
  • teff

Should I start a gluten-free diet before I talk with my doctor?

No. If you think you might have celiac disease, you should talk with your doctor about testing to diagnose celiac disease before you begin a gluten-free diet. If you avoid gluten before you have testing, the test results may not be accurate.

Also, if you start avoiding gluten without advice from a doctor or a registered dietitian, your diet may not provide enough of the nutrients you need, such as fiber, iron, and calcium. Some packaged gluten-free foods may be higher in fat and sugar than the same foods that contain gluten. If you are diagnosed with celiac disease, your doctor and dietitian can help you plan a healthy gluten-free diet.

If you don’t have celiac disease or another health problem related to gluten, your doctor may not recommend a gluten-free diet. In recent years, more people without celiac disease have begun avoiding gluten, believing that a gluten-free diet is healthier or could help them lose weight. However, researchers have found no evidence that a gluten-free diet promotes better health or weight loss for the general population 100.

What if a gluten-free diet isn’t working?

If you continue to have celiac disease symptoms while you are following a gluten-free diet, talk with your doctor or a registered dietitian, who can help you find the cause. In about 20 percent of people with celiac disease, symptoms continue or come back even while they are following a gluten-free diet 101. Symptoms may be caused by consuming small amounts of gluten, other health problems, or refractory celiac disease.

Refractory celiac disease is a rare condition in which symptoms and damage to the small intestine continue or come back, even while a person is following a strict gluten-free diet. Refractory celiac disease may lead to complications, such as malnutrition or a type of cancer called enteropathy-associated T-cell lymphoma. Doctors may recommend additional testing and treatments to diagnose and manage refractory celiac disease.

Your doctor may order tests to confirm the diagnosis of celiac disease and check for other health problems. Health problems that cause symptoms similar to those of celiac disease and may occur along with celiac disease include irritable bowel syndrome, lactose intolerance, microscopic colitis, problems with the pancreas, or small intestinal bacterial overgrowth.

Are there risks to trying a gluten-free diet if you don’t have celiac disease?

If you cut all gluten out of your diet, there’s a risk that you could miss out on nutritious whole grains, fiber and micronutrients. Getting enough whole grains in your diet is especially important if you’re at risk for heart disease or diabetes. Whole grains can lower cholesterol levels and even help regulate your blood sugar. In addition, some gluten-containing foods are sources of important vitamins and minerals, such as B vitamins, iron and magnesium.

Some processed gluten-free foods contain high amounts of unhealthy ingredients such as sodium, sugar and fat. Consuming these foods can lead to weight gain, blood sugar swings, high blood pressure and other problems. So, a gluten-free label doesn’t necessarily make a food healthy.

If you don’t have celiac disease or gastrointestinal irritation, removing highly processed foods from your diet first before removing gluten. Add in more fruits, vegetables, whole-grain bread or pasta, and lean proteins. Many people find they feel better just by eating better, not by removing gluten.

Can I go gluten-free to lose weight?

People who adopt a gluten-free diet often lose weight, but it’s usually because they also cut out a lot of processed foods and refined carbohydrates that contain gluten. If you stop eating gluten to lose weight, it’s important to watch your portion sizes, get regular exercise and eat plenty of whole foods such as fruits, vegetables and lean proteins.

Treatments for symptoms or complications

A gluten-free diet will treat or prevent many of the symptoms and complications of celiac disease. Some symptoms may take longer to get better than others, and some symptoms may need additional help.

Dermatitis herpetiformis may not go away until a person has been following a gluten-free diet for 6 months to 2 years 101. In some cases, doctors may prescribe a medicine, such as dapsone to help treat dermatitis herpetiformis until the rash is under control with a gluten-free diet alone. If you take dapsone, you’ll need regular blood tests to check for side effects.

In untreated celiac disease, damage to the small intestine can lead to malabsorption and malnutrition. When you are diagnosed with celiac disease, your doctor may test you for low levels of certain vitamins and minerals and may recommend or prescribe supplements if you need them. For safety reasons, talk with your doctor before using dietary supplements, such as vitamins, or any complementary or alternative medicines or medical practices.

If your anemia or nutritional deficiencies are severe, your doctor or dietitian might recommend that you take supplements, including:

  • Copper
  • Folate
  • Iron
  • Vitamin B-12
  • Vitamin D
  • Vitamin K
  • Zinc

Vitamins and supplements are usually taken in pill form. If your digestive tract has trouble absorbing vitamins, your doctor might give them by injection.

When you are diagnosed with celiac disease, your doctor may recommend additional testing if you are at risk for certain complications. For example, doctors may order a bone mineral density test to check for osteoporosis.

Medications to control intestinal inflammation

If your small intestine is severely damaged or you have refractory celiac disease, your doctor might recommend steroids to control inflammation. Steroids can ease severe signs and symptoms of celiac disease while the intestine heals.

Other drugs, such as azathioprine (Azasan, Imuran) or budesonide (Entocort EC, Uceris), might be used.

Follow-up care

Your doctor may recommend regular follow-up visits to make sure symptoms and health problems related to celiac disease are improving on a gluten-free diet. Follow-up may include blood tests to check levels of certain antibodies, which are higher in untreated celiac disease but typically return to normal after treatment. In some cases, doctors may recommend additional biopsies to find out if the small intestine has healed.

For most people with celiac disease, a gluten-free diet will allow the small intestine to heal. For children, that usually takes three to six months. For adults, complete healing might take several years.

If you continue to have symptoms or if symptoms recur, you might need an endoscopy with biopsies to determine whether your intestine has healed.

Celiac disease summary

Celiac disease is an autoimmune disorder in which people can’t eat gluten because it will damage their small intestine and inhibits absorption of nutrients. People with celiac disease cannot tolerate gluten, a protein in wheat, rye, barley, and in some products such as medicines, vitamins, and lip balms. If you have celiac disease and eat foods with gluten or use a product with gluten, your immune system reacts by damaging tiny parts of the lining of the small intestine called villi. Because villi normally allow the blood to absorb nutrients from food, affected individuals become malnourished 102. Classic signs and symptoms are caused by inflammation of the gastrointestinal tract and may include diarrhea, weight loss, abdominal pain, swelling, and food intolerance. However, many people have other symptoms involving many body systems, and some people have no symptoms 103, 104. Celiac disease is genetic, which tends to run in families, but it does not follow a specific inheritance pattern. The risk to develop celiac disease is raised by having certain forms of the HLA-DQA1 and HLA-DQB1 genes 102. Treatment is a lifelong, gluten-free diet 104.

Blood tests can help your doctor diagnose celiac disease. Your doctor may also need to examine a small piece of tissue from your small intestine. Treatment is a diet free of gluten.

The long-term outlook (prognosis) for people with celiac disease can vary because some people have no symptoms, while others have severe malabsorption features. Overall, people with untreated or unresponsive celiac disease have increased early mortality compared to the general population 105. Without diagnosis and treatment, celiac disease is ultimately fatal in 10 to 30% of people. Currently this outcome is rare, as most people do well if they avoid gluten 106.

Following a gluten-free diet heals the damage to the intestines and prevents further damage. This healing most often occurs within 3-6 months in children and may take 2-3 years in adults. In rare cases there can be long-term damage to the lining of the intestines before the diagnosis is made 107. Strictly adhering to a gluten-free diet also significantly decreases the risk of cancer 106.

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