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Celiac disease is a disorder that causes problems in your intestines when you eat gluten, which is in wheat, rye, barley and some oats (from contamination). Gluten is like a poison to people with celiac disease, because it damages their intestines.

What you need to know about celiac disease
Celiac disease is a chronic autoimmune disease which is the result of an immune system response to the ingestion of gluten (a protein found in wheat, rye and barley) in susceptible individuals. This response to gluten damages the small intestine, leading to malabsorption of nutrients and related health issues. To develop celiac disease, a person must inherit the genetic predisposition, be consuming gluten, and have the disease activated. Common activation triggers include stress, trauma (surgeries, etc.) and possibly viral infections. Approximately 10-20% of first-degree relatives of those with celiac disease will have the condition triggered in their lifetime. The disease is permanent and damage to the small intestine will occur every time gluten is ingested, regardless of whether or not symptoms are present.

Celiac disease is a genetic disorder affecting about 1 in 133 individuals in the United States, potentially 3 million people. For every person diagnosed with celiac disease, approximately 80 people have the condition but are undiagnosed.

Symptoms
Classic symptoms are those related to malabsorption and can include: diarrhea, bloating, weight loss, anemia and growth failure. Non-classical symptoms may include a wide range of non-intestinal symptoms including: migraines, infertility, fatigue, joint pain, premature osteoporosis, depression and seizures. Many people do not have gastrointestinal symptoms, some may have just one symptom and some individuals have no obvious symptoms at all.

Diagnosis
Initial screening for celiac disease is a blood test ordered by your physician.
Blood tests look for the presence of the following antibodies:

• Anti-tissue transglutaminase (tTG)
• Anti-endomysium (EMA)
• Anti-deamidated gliadin peptides (DGP)

Because no one of these tests is ideal, panels are often used.

If this test suggests celiac disease, it is often recommended that a haplotype test for HLA DQ2 and DQ8 be performed to confirm presence of the genes necessary to develop the condition. If this test is positive, a small intestine biopsy is done. A positive small intestine biopsy (showing damaged villi) is the “gold standard” for a diagnosis of celiac disease.

Celiac disease is an inherited autoimmune digestive disease and confirmation of celiac disease will help future generations be aware of the risk within the family.

Treatment
Strict adherence to a gluten-free diet for life is the only treatment currently available. This means elimination from the diet of wheat, rye, barley and foods made with these grains or their derivatives. Medication is not usually required, unless there is an accompanying condition, such as osteoporosis or dermatitis herpetiformis. Thriving or showing improvement on the gluten-free diet is the second half of the “gold standard” of diagnosis. It may take several months or longer for the small intestine to completely heal. Improvement is measured by regular monitoring of the antibody blood tests used for screening, and by improved health. When you are on a gluten-free diet, blood tests should eventually come back to normal. This indicates good control of celiac disease - not a cure. You will always require a gluten-free diet until another form of treatment is discovered.

The Diet
The gluten-free diet is a lifelong commitment and should not be started before being properly diagnosed. Starting the diet without complete testing is not recommended and makes later diagnosis difficult. Tests to confirm celiac disease could be negative if a person were on a gluten-free diet for a period of time. For a valid diagnosis to be made, gluten would need to be reintroduced for at least several weeks before testing.

Prognosis
Generally excellent, if a strict gluten-free diet is maintained. The small intestine will steadily heal and start absorbing nutrients normally. You should start to feel better within days; however, complete recovery may take from several months to several years.

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To find out, answer the following questions:

Do you have a family history of Celiac Disease or Dermatitis Herpetiformis?

Do you have recurring problems with:

• Abdominal pain
• Bloating
• Constipation
• Diarrhea
• Loss of appetite
• Vomiting
• Unintended weight loss
• Elevated liver function tests (AST, ALT)
• Joint pain
• Fatigue
• Tingling or numbness in hands or feet
• Fatigue
• Tingling or numbness in hands or feet
• An itchy skin rash occurring on both sides of the body, such as both elbows or knees
• Unexplained infertility or fetal loss
• In childhood, poor weight gain or failure to thrive
• In childhood, short stature or delayed puberty

Have you been diagnosed with:

• Irritable Bowel Syndrome
• Migraines
• Anemia (iron, folate or B-12 deficiency)
• Autoimmune thyroid disease (Hashimoto’s thyroiditis or Graves disease)
• Osteoporosis or Osteopenia (low bone density)
• Osteomalacia (softening of bones)
• Arthritis
• Colitis (microscopic, lymphocytic or collagenous)
• Type 1 diabetes
• Dental enamel defects in permanent teeth
• Peripheral neuropathy
• Liver disease
• Addison’s disease
• IgA nephropathy
• Selective IgA deficiency
• Cerebellar ataxia
• Epilepsy
• Occipital calcifications
• Down Syndrome
• Turner Syndrome
• Williams Syndrome
• Sjogren’s Syndrome (causes dry eyes and dry mouth)

What is Celiac Disease?
Celiac disease is an autoimmune reaction to the gluten protein found in wheat, rye and barley. Celiac disease causes damage to the small intestine and other parts of the body, resulting in a wide range of possible symptoms. Often, the connection with gluten is not recognized.

What does it mean if I have some of the symptoms or conditions?
This Educational Bulletin lists symptoms and conditions which put you at increased risk for having celiac disease. Many of these symptoms are also associated with a gluten-related disorder known as “non-celiac gluten sensitivity.”

If you have even one of these symptoms or conditions, it would be a good idea to bring that to your doctor’s attention and discuss having the screening blood tests for celiac disease.

If you have multiple conditions, consider having the screening tests as soon as possible.

The treatment for celiac disease or non-celiac gluten sensitivity is to remove gluten from the diet. However, celiac specialists recommend that you not exclude gluten before you are tested as this will significantly reduce the chances of getting accurate results. Therefore it is important NOT to remove gluten from the diet before testing is done.

Note that the first step to diagnosing non-celiac gluten sensitivity is also to undergo celiac blood screening tests.

If you have negative tests, but still feel that you have symptoms that might be related to gluten, you may have non-celiac gluten sensitivity.

References:
World Gastroenterology Organisation Global Guidelines, Celiac Disease.
http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf.

ACG clinical guidelines: diagnosis and management of celiac disease, 2013.
http://www.ncbi.nlm.nih.gov/pubmed/23609613

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Who should be on a gluten-free diet?
Individuals who have celiac disease require a gluten-free diet for health reasons. Ingestion of gluten in these individuals causes an adverse reaction which damages intestinal cells and can lead to potentially serious health problems.

People who experience an adverse reaction to gluten but who do not have celiac disease may have non-celiac gluten sensitivity (also called “gluten sensitivity”). In this condition the problems caused by gluten are not thought to be as extensive as in celiac disease, but for both conditions the only treatment is a gluten-free diet.

What is a gluten-free diet?
Gluten refers to the proteins found in wheat, rye and barley which cause an adverse reaction in people with gluten-related disorders. On a gluten-free diet, these grains and any foods or ingredients derived from them must be removed from the diet. This includes the obvious breads, pastas and baked goods made with gluten-containing flours, but may also include less obvious foods such as sauces, salad dressings, soups and other processed foods, since these can contain small amounts of ingredients derived from gluten-containing grains. (Oats are naturally gluten-free, but are often contaminated with wheat in growing and/or processing, so only oats which are certified gluten-free are acceptable on a gluten-free diet.)

Common misconceptions about the gluten-free diet
The gluten-free diet is sometimes promoted as a way to lose weight, or as a “healthier” diet for the general population. These claims are unfounded. The gluten-free diet is healthier for people with gluten-related disorders, but there is no evidence that it is beneficial for people who do not have these conditions.

• The presence or absence of gluten alone is not related to diet quality. What’s important is the overall food choices made within the diet, whether it’s gluten-free or not.
  • If an individual whose diet contains large amounts of breads, pastas and cookies (especially those made from refined flours) switches to a gluten-free diet which eliminates these foods while increasing fruits, vegetables and other healthful gluten-free foods, the resulting diet would likely be healthier.
  • On the other hand, this same person could easily substitute gluten-free breads, pastas and cookies into the diet, without increasing intake of healthful gluten-free foods like vegetables and fruits. In this case a person may actually experience a reduction in diet quality, since many gluten-free processed foods are lower in fiber, vitamins and minerals than their gluten-containing counterparts. This type of gluten-free diet may be higher in calories, since many processed gluten-free foods contain higher levels of fat and/or sugar to compensate for flavor and texture changes which result from the removal of gluten. Any diet that is higher in calories is likely to promote weight gain, not weight loss.

What symptoms could indicate the need for a gluten-free diet?
Symptoms of celiac disease and gluten sensitivity are similar and may include: recurring abdominal pain, chronic diarrhea/constipation, tingling/numbness in hands and feet, chronic fatigue, joint pain, unexplained infertility and low bone density (osteopenia or osteoporosis). There are hundreds of potential symptoms, many of which are also symptoms of other conditions.

What to do if you think gluten may be causing your symptoms
Consult with your personal physician/health care provider before giving up gluten. This is very important because the standard blood testing done as a first step to diagnosing these conditions is not meaningful unless gluten is being consumed for a significant period of time before testing. It is also important to consult with your healthcare provider in order to evaluate other possible causes of symptoms.

How are celiac disease and non-celiac gluten sensitivity diagnosed?
The first step to testing for both conditions is a panel of blood tests looking for an antibody response to gluten. If these tests are positive, the next step is an endoscopy. If the endoscopy shows the intestinal cell damage characteristic of celiac disease, this is considered the gold standard of celiac disease diagnosis.

There is currently no specific diagnostic test for non-celiac gluten sensitivity; instead, it is a “rule out” diagnosis. Consequently, the celiac disease testing described above would be done. In addition, wheat allergy and other potential causes of symptoms should be ruled out. If all of these conditions have been ruled out and the patient responds positively to a gluten-free diet, then the diagnosis of non-celiac gluten sensitivity may be made.

How many people have gluten-related disorders?
It’s estimated that in the U.S. 1 in 133 people have celiac disease. The prevalence of non-celiac gluten sensitivity is not established but may be significantly higher. Only about 15% of people with celiac disease have been diagnosed.

What are Gluten and a Gluten-Free Diet?
Gluten adds elasticity, volume and texture to many food products. Gluten is the common name for a protein found in wheat, rye, barley and all forms and hybrids of these grains. Gluten causes damage to the intestines of individuals with celiac disease and dermatitis herpetiformis and must be strictly avoided. People with non- celiac gluten sensitivity (also known as “gluten sensitivity”) also need to avoid gluten. A gluten-free diet is the only treatment for people who have these conditions.

Cross-Contamination.
Those who follow a gluten-free lifestyle have two primary concerns: 1) elimination of prohibited grains and 2) avoiding cross-contamination of gluten-free foods. Cross-contamination is a significant problem in the food industry, especially in non-dedicated milling and baking facilities. Very small amounts of gluten (more than 20 ppm) are potentially dangerous to people on a gluten-free diet. Flour dust in the air, shared equipment with dust particles, use of common utensils and baking equipment, and inadequate cleaning and scheduling of gluten-free vs. gluten-containing production are major causes of cross-contamination of gluten-free products.

Baking gluten-free in a non-dedicated facility.
It is possible to safely produce gluten-free products in a non-dedicated facility, but policies and procedures must be in place to prevent cross-contamination. The following steps and considerations will be helpful for your establishment to produce safe gluten-free products:

1. Ingredient handling
If there is a common facility for gluten-free and gluten-containing ingredients:
a. Establish separate storage and preparation/staging areas for gluten-free and gluten-containing ingredients.
b. Have separate equipment that is clearly marked and used for either gluten-free or gluten-containing products. This includes measuring tools, mixing bowls, pans, utensils, etc.
c. Establish policies requiring all employees to have clean garments and hands when handling gluten-free products. This would include a policy about outside foods and beverages not being allowed in the production area; changing into clean lab coats, aprons, and gloves for gluten-free production.

2. Facility and equipment
Best practices for the facility and equipment would be to have separate production areas and equipment that has controlled air-flow between the two production areas. Equipment should be dedicated in each area for use on gluten-free or non-gluten-free production. This practice minimizes the potential for air-borne dust contamination.

When this is not possible, you must consider the high risk of cross contamination from airborne dust and shared equipment with residual dust and flour that cannot be easily removed with normal cleaning.

3. Reduce cross-contamination
Use wet cleaning systems. Use of wet-wash cleaning systems is the best way to remove gluten from equipment and utensils used in gluten-free production. As much as possible, shared equipment should be broken down before gluten-free production and cleaned using commercial cleaning products and commercial dishwashing systems. When shared equipment cannot be cleaned using a wet-wash system, there is risk of cross-contamination.

4. Schedule gluten-free production no less than 24 hours after the last gluten-containing production has been completed (including packaging).
Give air-borne flour dust adequate time to settle to the ground by scheduling gluten-free production at the beginning of the day, after no production has occurred for at least 24 hours. Scheduling gluten-free production on Monday mornings after a thorough wipe-down has been done and no baking has occurred over the weekend is ideal. Be sure to observe any dust on the equipment and wipe it down and clean utensils that have been exposed to the air before starting production. To be sure, consider doing swab testing of the equipment before production of gluten-free products.

5. Storage of all gluten-free ingredients and products in sealed, well-marked containers.
To avoid cross contamination all gluten-free ingredients should have a designated storage area and containers, designated prep area and packaging area. These areas should be washed down before use for gluten-free production. All gluten-free products must be stored in closed containers and packages to prevent cross-contamination.

Labeling - The Law
All goods not consumed on the premises are required to meet the labeling requirements established by the FDA, including ingredient listings, allergy and nutritional information and company information.

Allergy Labeling
As of January 2006, the top eight common allergens (which include wheat) must be labeled on FDA-regulated products. These allergens are: wheat, eggs, soy, dairy, tree nuts, peanuts, shell fish and finned fish. Labels must list the allergen using common language either immediately after the ingredient [Example: Milk, semolina (wheat), eggs, salt....] or at the end of the ingredient list starting with the word ‘Contains’. [Example: Contains wheat, eggs, milk.] This is the allergen labeling format required by the FDA.

Gluten-free Labeling
In August 2013 the FDA issued a ruling on gluten-free labeling (effective August, 2014). Labeling gluten-free is voluntary. However, products carrying a gluten-free label claim must meet the definition set by the FDA, which includes:

1. Must contain less than 20 parts per million (ppm) gluten.
2. Cannot contain any type of wheat, rye, barley or crossbreeds of these grains.
3. Cannot contain any ingredient derived from these grains that has not been processed to remove gluten.
4. Cannot contain an ingredient derived from these grains which has been processed to remove gluten, if it results in the food containing 20 or more ppm gluten.

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Adults who begin to be ill with celiac disease might have a general feeling of poor health, with fatigue, irritability and depression, even if they have few intestinal problems. One serious illness that often occurs is osteoporosis (loss of calcium from the bones). A symptom of osteoporosis may be night-time bone pain. About 5% of adults with celiac disease have anemia. Lactose intolerance (problem with foods like milk) is common in patients of all ages with celiac disease. It usually disappears when they follow a gluten-free diet.

Celiac disease (CD), non-celiac gluten sensitivity (NCGS) and wheat allergy are medical conditions and, generally speaking, types of food hypersensitivities. There are many possible gastrointestinal symptoms of celiac disease and non-celiac gluten sensitivity, including cramping, diarrhea and constipation. Symptoms may also occur in other parts of the body in the form of bone or joint pain, headaches, or fatigue, to name a few. Symptoms of an allergy to wheat can include itching, hives, or anaphylaxis, a life-threatening reaction. Treatment for CD and NCGS is to remove gluten from the diet. Gluten is a protein naturally found in wheat, rye and barley, as well as in hybrids and products made from these grains. Treatment for a person with a wheat allergy is removal of all forms of wheat from the diet. People with CD, NCGS, or wheat allergy are fortunate because they don’t need complicated medical treatments to get well, but they must avoid the food or foods that are problematic. Let’s take a closer look at each of these types of reactions to food.

Celiac disease (CD) is a genetic, autoimmune disorder that occurs in reaction to the ingestion of gluten in genetically susceptible individuals. The reaction to gluten causes villous atrophy or flattening of the cells lining the small intestine, which can lead to malabsorption of nutrients with wide-reaching symptoms. There are over 300 identified symptoms of CD which can include those listed above as well as anemia, behavioral changes, stunted growth or infertility. Dermatitis herpetiformis is celiac disease that manifests as a skin rash. The rate of CD is higher among relatives of those who are diagnosed, but anyone with the genetic predisposition can develop celiac disease at any age. Currently it is estimated that about 1% of the population has celiac disease, although 83% of those people are still undiagnosed. While research continues to work towards pharmaceutical or other treatments, at this time the only treatment for celiac disease is to maintain a gluten-free diet for life.

Non-Celiac Gluten Sensitivity (NCGS), also called gluten sensitivity (GS), is not well defined. It is not an immunoglobulin E (IgE) (as with wheat allergy, see below) nor autoimmune reaction (as with CD, see above). There are no tests or biomarkers to identify GS. In early 2012 GS was classified by an international group of recognized celiac experts as a distinct condition from celiac disease (CD), yet it is still not well understood. Reactions can begin up to 48 hours after ingesting gluten and last for much longer. To diagnose GS, it is first necessary to rule out CD, wheat allergy or other possible causes of symptoms. Then, if improvement is seen when following a gluten-free diet, gluten sensitivity may be diagnosed. Limited studies estimate that GS may affect 2 to 6% of the population. Adherence to a gluten-free diet is the only treatment for GS at this time.

Wheat allergy is an immune reaction to any of the hundreds of proteins in wheat. When a person has a wheat allergy, one type of white blood cells, called T-cells, send out immunoglobulin E (IgE) antibodies to “attack” the wheat. At the same time, local tissues in the body send out natural chemical messengers to alert the rest of the body that there is a problem. This reaction happens very fast (within minutes to a few hours) and can involve a range of symptoms from nausea, abdominal pain, itching, swelling of the lips and tongue, to trouble breathing, or anaphylaxis (a life-threatening reaction). A person with a wheat allergy must avoid eating any form of wheat, but does not have trouble tolerating gluten from non-wheat sources. (It is possible for a person to be both allergic to wheat and have CD or GS.) In the United States, wheat is one of the eight most common foods to which people are allergic. Children who are allergic to wheat may out-grow the allergy, but adults with an allergy to wheat usually have it for life. The only treatment is a wheat-free diet.

Do I have celiac disease, non-celiac gluten sensitivity, or wheat allergy?

• Diagnosis is key to knowing the answer to this question and being able to follow the diet that is right for you. This is also the most important reason not to start a gluten-free diet before being tested and getting a diagnosis.
• Diagnosis for celiac disease involves blood screening followed by small intestine biopsy, and reduction or elimination of symptoms when on a gluten-free diet. A patient must be consuming their regular gluten-containing diet for accurate initial diagnosis, which is usually made by a gastroenterologist.
• Non-celiac gluten sensitivity is a differential diagnosis, which involves testing for and ruling out celiac disease, wheat allergy, and other disorders which could be associated with your symptoms. After the above testing, if the removal of gluten from the diet improves symptoms, this may be diagnostic for GS. Diagnosis can be made by a gastroenterologist or primary care physician.
• Diagnosis of IgE food allergies, such as a wheat allergy, is generally done through RAST or skin prick testing and a double-blind placebo test using the allergen. This is usually completed by an allergist.

Celiac disease, non-celiac gluten sensitivity and wheat allergy are medical conditions and types of food hypersensitivities that can be treated with the appropriate diet, either elimination of gluten or wheat. Working closely with your doctor and registered dietitian will help you get an accurate diagnosis and create a diet that supports your health and wellness.

References:

• MedlinePlus: Food Allergy. DHHS. NIH. National Library of Medicine. http://www.nlm.nih.gov/medlineplus/foodallergy.html
• Food Allergy - An Overview. 2012. National Institute of Allergy and Infectious Diseases. 3/2014. http://www.niaid.nih.gov/topics/foodallergy/documents/foodallergy.pdf
• The gluten-free diet: what you need to know. International Food Information Council. Accessed 3/2014. http://www.foodinsight.org/Content/3862/FINAL%20Gluten%20Fact%20Sheet.pdf
• Gluten Intolerance. 2014. American Academy of Allergy, Asthma & Immunology. Accessed 3/2014. http://www.aaaai.org/conditions-and-treatments/conditions-dictionary/gluten-intolerance.aspx
• Pongdee, T. 2014. Food allergy versus food intolerance. American Academy of Allergy, Asthma & Immunology. Accessed 3/2014. https://www.aaaai.org/Aaaai/media/MediaLibrary/PDF%20Documents/Libraries/EL-food-allergies-vs-intolerance-patient.pdf
• All about food allergies: Wheat allergy. American Academy of Allergy, Asthma & Immunology. Accessed 3/2014. http://www.foodallergy.org/allergens/wheat-allergy
• Fasano A. A Clinical Guide to Gluten-Related Disorders. Lippincott Williams & Wilkins. Philadelphia, PA. 2014.
• Medical Professionals Guide to Celiac Disease. University of Chicago Celiac Disease Center. Accessed 3/2014 http://www.cureceliacdisease.org/medical-professionals/guide
• Ludvigsson, J.F., Leffler, D.A., Bai, J., Biagi, F., Fasano, A., Green, PHR., et al, Ciacci, C. (2013) The Oslo definitions for coeliac disease and related terms. Gut. 62(1):43-52 [Electronic Version] Accessed 3/2014 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3440559/pdf/nihms382798.pdf

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Dermatitis Herpetiformis (DH) is a severe itchy, blistering skin disease caused by gluten intolerance. If you have DH, you have celiac disease since both are autoimmune disorders caused by gluten intolerance. The rash usually occurs on the elbows, knees and buttocks. Although people with DH do not usually have digestive symptoms, they often have the same intestinal damage as people with celiac disease.

DH is diagnosed by a skin biopsy, which involves removing a tiny piece of skin near the rash and testing it for the IgA antibody. DH is treated with a medication to control the rash, such as Dapsone or Sulfapyridine. Drug treatment may last several years.