What is Gluten?
Gluten is a general name for the proteins found in wheat (wheatberries, durum, emmer, semolina, spelt, farina, farro, graham, KAMUT® khorasan wheat and einkorn), rye, barley and triticale (a cross between wheat and rye). Gluten helps foods maintain their shape, acting as a glue that holds food together. Gluten can be found in many types of foods, even ones that would not be expected.
Why is Gluten Bad?
Gluten ingestion can extremely harm people with celiac disease, gluten sensitivity and wheat allergies. It also can cause several other diseases and disorders in people and is very hard for the human body to digest because the amino acids that make up gluten do not break down easily and puts strain on the stomach and intestines.
Gluten Related Disorders
• Celiac Disease
• Gluten Sensitivity
• Wheat Allergy
What is Celiac Disease?
Celiac disease is a serious autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long-term health complications. 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. Celiac disease is hereditary, meaning that it runs in families. People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease. Currently, the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet. People living gluten-free must avoid foods with wheat, rye and barley, such as bread and beer. Ingesting small amounts of gluten, like crumbs from a cutting board or toaster, can trigger small intestine damage.
Celiac Disease Related Conditions and Diseases
• Bone Density
• Dermatitis Herpetiformis (DH)
• Down Syndrome
• Gluten Ataxia
• IgA Deficiency
• Intestinal Cancer
• Irritable Bowel Syndrome (IBS)
• Juvenile Idiopathic Arthritis (IIA)
• Lactose Intolerance
• Liver Disease
• Peripheral Neuropathy
• Sjogren's Disease
• Thyroid Disease
• Turner Syndrome
• Type 1 Diabetes
• Williams Syndrome
Gluten sensitivity is a condition with symptoms similar to those of celiac disease that improve when gluten is eliminated from the diet. People with gluten sensitivity can experience symptoms such as "foggy mind", depression, ADHD-like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, but other symptoms are also possible. While these are common symptoms of celiac disease, these individuals do not test positive for celiac disease or for a wheat allergy. Having celiac disease is often confused with having a wheat or gluten allergy. People with a wheat allergy who consume any of the four classes of wheat protein, including gluten, can trigger an immune system response that causes an allergic reaction, with symptoms that span from itching, swelling and difficulty breathing to anaphylaxis. However, they do not experience intestinal damage. Individuals who have been diagnosed with gluten sensitivity do not experience the small intestine damage or develop the tissue transglutaminase (tTG) antibodies found in celiac disease. Since there is currently no blood test for gluten sensitivity, the only way to be diagnosed is to undergo the screening and diagnostic tests required to confirm celiac disease. A diagnosis of gluten sensitivity is confirmed when you are not diagnosed with celiac disease or wheat allergy, and your symptoms diminish after starting a gluten-free diet, followed by a return of symptoms when gluten is reintroduced into your diet. There is no cure for gluten sensitivity, and the only treatment is to follow a gluten-free diet.
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 B-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 NCGS. 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.
Celiac disease can affect anyone. However, it 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
• Rheumatoid arthritis
Researchers estimate that only 20 percent of people with celiac disease may receive a diagnosis. Doctors may order two blood tests to help diagnose celiac disease. If the results of these tests indicate celiac disease, your doctor may order an endoscopy to view your small intestine and to take a small tissue sample (biopsy) to analyze for damage to the villi. It's important to be tested for celiac disease before trying a gluten-free diet. Eliminating gluten from your diet may change the results of blood tests and biopsy so that they appear to be normal.
• Serology testing; looks for antibodies in your blood. Elevated levels of certain antibody proteins indicate an immune reaction to gluten.
• Genetic testing; for human leukocyte antigens (HLA-DQ2 and HLA-DQ8) can be used to rule out celiac disease.
• The endoscopic biopsy; If antibody tests and symptoms suggest celiac disease, the physician needs to establish the diagnosis by obtaining tiny pieces of tissue from the upper small intestine to check for damage to the villi. This is done in a procedure called a biopsy. The physician eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine, and then takes samples of the tissue using small instruments passed through the endoscope. Biopsy remains the most accurate way to diagnose celiac disease. This procedure is always performed by a gastroenterologist, and is conducted most often in an outpatient surgical suite. The procedure lasts less than half an hour, and sedation and local anesthesia are generally used. The procedure involves a long, thin tube with a small camera on the end. The physician will insert the tube into the patient's mouth, down the throat, and into the esophagus. When the tube reaches the patient's stomach, the physician fi nds the entryway into the small intestine (the duodenum) and inserts the tube there. As the tube is making its way to the small intestine, the camera on the end sends a video image to a monitor in the procedure room. On the monitor the physician can visually assess any evident abnormalities such as ulcers or gastritis. In the small intestine, the physician examines most of the duodenum, the area affected by celiac disease. However, in many celiac patients, their duodenum appears normal at the time of biopsy. This is why the surgical removal of tissue is so important, it is only under a microscope that a definitive diagnosis of celiac disease can be made. To take some tissue for biopsy, the physician inserts a tiny surgical instrument through the endoscope tube. Working in concert with a surgical nurse, the physician will take 5 to 6 biopsies. Each one is taken by grasping sections of the small intestine and slicing them gently away from the walls of the intestine. Multiple tissue samples are vital to make an accurate diagnosis, celiac disease can cause patchy lesions in the duodenum, which can be missed if only one or two samples are taken. Results of the biopsy will confirm if a patient has celiac disease. There are no nerve endings in the lining of the intestine, so this procedure does not cause any pain. Afterward, some patients experience a sore throat, but most have no memory of the procedure.
A strict, lifelong gluten-free diet is the only way to manage celiac disease. Your doctor may refer you to a dietitian, who can help you plan a healthy gluten-free diet. Once you remove gluten from your diet, inflammation in your small intestine generally begins to lessen, usually within several weeks, though you may start to feel better in just a few days. Complete healing and regrowth of the villi may take several months to several years. Healing in the small intestine tends to occur more quickly in children than adults. If you accidentally eat a product that contains gluten, you may experience abdominal pain and diarrhea. Some people experience no signs or symptoms after eating gluten, but this doesn't mean it's not harmful to them. Even trace amounts of gluten in your diet can be damaging, whether or not they cause signs or symptoms. Enzyme therapies that claim to help digest gluten may be available in health food stores or other outlets, but there is no scientific evidence that they are effective in treating celiac disease.
Vitamin and Mineral Supplements
Having a damaged intestine from celiac disease can cause you to have nutritional deficiencies because your body is having a tough time absorbing these nutrients. If your nutritional deficiencies are severe, your doctor or dietitian may recommend taking vitamin and mineral supplements along with enzymes to help absorb the nutrients. Vitamins and supplements are usually taken in pill form. If your digestive tract has trouble absorbing vitamins, your doctor may give them by injection. You need to be sure that the vitamins and supplements are gluten-free. You may need to supplement your levels of:
• Vitamin B-12
• Vitamin D
• Vitamin K
If you have celiac disease, you will need medical follow-up to make sure your symptoms have responded to a gluten-free diet. Doctors will also want to be sure you are getting the support you need to maintain the diet for life. They will use blood tests to monitor your response. The results of these tests, which are primarily designed as a way to detect celiac disease, usually become negative once you have been gluten-free for six to 12 months. If test results remain positive, then your doctor may try to find the reason, the most common being unintentional exposure to gluten in your diet. However, these tests are not perfect, and even if the results become negative, it is possible that you could still be exposed to a significant amount of gluten and continue to have symptoms and damage to your intestines. If you continue to have symptoms, or your symptoms recur, you may need a follow-up endoscopy with biopsies to ensure that healing has occurred. Adults typically have a greater need for follow-up testing, although children may require it, too. Some doctors recommend a routine re-biopsy if you are diagnosed in adulthood, as healing is often quite slow and uncertain. It also can be helpful to follow up with an expert dietitian for assistance in adapting to, and maintaining, a healthy, nutritious, gluten-free diet.
Medications to Control Intestinal Inflammation
If your small intestine is severely damaged, your doctor may recommend steroids to control inflammation. Steroids can ease severe signs and symptoms of celiac disease while the intestine heals.
Dermatitis herpetiformis is an itchy, blistering skin disease that stems from intestinal gluten intolerance. The rash usually occurs on the elbows, knees, torso, scalp and buttocks. Dermatitis herpetiformis is often associated with changes to the lining of the small intestine identical to those of celiac disease, but the disease may not produce noticeable digestive symptoms. Doctors treat dermatitis herpetiformis with a gluten-free diet or medication, or both, to control the rash.
Refractory Celiac Disease
If you have refractory celiac disease, you may continue to have severe symptoms, or your symptoms may lessen but then relapse. In either case, your small intestine does not heal. When this happens, you likely will require evaluation in a specialized center. Refractory celiac disease can be quite serious and there is currently no proven treatment. People with refractory celiac disease should be treated by experts. There may be several causes for this condition. Doctors will often use steroid therapy, either a topical budesonide or systemic steroids such as prednisone. Sometimes, they will use the same medications used to treat other conditions.
Potential Future Treatments
While the only proven therapy for celiac disease is a gluten-free diet, it is not perfect. People with celiac disease may often be accidentally exposed to gluten, possibly causing severe symptoms. Several treatments are in development for celiac disease. Some try to neutralize or bind to gluten. Others address the barrier of the intestine, blocking the leakiness that gluten can trigger. Still others target the body's immune system. Researchers have also been trying to genetically modify wheat, but have not yet been successful. None of these treatments is likely to be approved within the next two to three years. However, given the number of different approaches, there is a good chance that there will be additional treatments available for celiac disease in the future.
Sources of Gluten
KAMUT® Khorasan Wheat
Malted Barley Flour
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
- raviolis, dumplings, couscous, and gnocchi
- 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
- 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
- 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 contains any ingredient on the sources of gluten list
FOODS THAT MAY CONTAIN GLUTEN
(must be verified by reading the label or checking with the manufacturer/kitchen staff)
- 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
- Anything else that contains any ingredient on the sources of gluten list
Digestion Process of Gluten
The normal ingestion of gluten is a tough digestive process in all humans because the amino acids making up gluten do not easily break apart as they travel through the digestive system. In other terms, the proteins found in gluten can commonly be resistant to most of the enzymes found in the digestive system, which proves why the breakdown is indeed difficult. Enzymes are one of the most powerful sources in the digestive system that act as catalysts to help breakdown particles, specifically splitting up proteins into their building blocks, amino acids. Enzymes, therefore, also work to speed up the chemical reactions that occur throughout the entire body. When properly working, the enzymes strive to break down the proteins into the specific groups of amino acid sequences called peptides. They are normally secreted in many different parts of the digestive system including the stomach, pancreas, and small intestine. Gluten becomes even more resistant to the enzymes in individuals that have Celiac disease or even a slight gluten sensitivity. In individuals with Celiac disease, the immune system sees gluten as a foreign invader and thus begins to attack the protein, specifically gliadin, by triggering a T-cell response, as soon as it reaches the walls of the small intestine. This specific type of response by the immune system, an autoimmune response, results in large inflammation occurring throughout the entire system. The inflammation results from the attacking of the healthy villi lining the walls of the small intestines. Villi are very small, finger-like projections that aid in the digestive process by both secreting the digestive enzymes necessary for breakdown as well as absorbing the nutrients found in the different foods consumed. When the body does not recognize those villi as being its self, less nutrients are soaked up and a smaller amount of digestive enzymes are produced, thus resulting in the digestive problems occurring in individuals with Celiac disease. Not only does the body begin attacking itself, but over time oligopeptides derive from the high protein content still found in the body due to an inability to be broken down into di- or tri-amino acids. These long-chain polypeptides build up in the small intestine and can result in cell clumping, new arrangement of actin filaments, and eventually cell death. All of these problems can occur in the small intestines and other digestive organisms of individuals with Celiac disease and thus can lead to symptoms of Celiac disease including stomach pain, gas, and bloating due to the inflammation that occurs.