CELIAC DISEASE Definition By Mayo Clinic staff Celiac disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye. If you have celiac disease, eating gluten triggers an immune response in your small intestine. Over time, this reaction produces inflammation that damages the small intestine's lining and prevents absorption of some nutrients (malabsorption).
The intestinal damage can cause weight loss, bloating and sometimes diarrhea. Eventually, your brain, nervous system, bones, liver and other organs can be deprived of vital nourishment. In children, malabsorption can affect growth and development. The intestinal irritation can cause stomach pain, especially after eating.
There's no cure for celiac disease — but following a strict gluten-free diet can help manage symptoms and promote intestinal healing.
DO YOU HAVE NON-CELIAC GLUTEN SENSITIVITY? You may be one of the millions of people who don't have celiac disease but know that gluten bothers your system. Little is known about non-celiac gluten sensitivity 1 but it is a very important condition that needs much more research and clinical attention. Non-celiac gluten sensitivity (NCGS) is a recently described condition with symptoms similar to those in celiac disease. Unlike celiac disease, there is no known genetic susceptibility to NCGS, there are no auto-antibodies to damage the lining of the small intestine and there is no association with other autoimmune diseases. 2,3 We don't know yet if NCGS is a type of functional disorder or whether some people with NCGS actually have a very mild immune reaction to gluten. Regardless, NCGS can mimic the symptoms of celiac disease. Gas, bloating, cramps, diarrhea, and/or constipation, poor concentration, headaches, etc., are just a few of the symptoms that celiac disease and NCGS share. This can make life very uncomfortable. It's also confusing to diagnose. 4 NCGS is a diagnosis of exclusion. This means that your doctor will only give you a diagnosis of NCGS if both celiac disease and a gluten or wheat allergy have been ruled out. Celiac Disease Center at Columbia University SCREENING FOR CELIAC DISEASE Screening for a disease involves testing for the disease prior to the development of symptoms. Celiac disease in fact fulfills World Health Organization criteria for population screening of a disease, for it is common, there is value in diagnosis and treatment and there is an easily available test. General population based screening for celiac disease however is not advocated. Instead, targeted screening of high risk groups can be considered. Relatives of those with celiac disease are considered at high risk to have or develop the condition.
A new diagnosis of celiac disease may pose new challenges for the family and household, many of which become apparent with time and education. But one aspect of care that should be addressed early is which relatives should consider screening for celiac disease based on a new diagnosis in the family.
WHAT IS SCREENING FOR CELIAC DISEASE? Screening for celiac disease involves blood testing of an individual at risk for the disease, many of whom lack "typical" or any signs of the condition which may trigger testing on their own (such as diarrhea and poor growth in young children; or abdominal pain and nutritional issues in adults). When an adult or child is diagnosed with celiac disease, a discussion is warranted regarding testing first degree relatives (a parent, sibling, or child of the newly diagnosed patient). This is because first degree relatives have a clear risk for celiac disease. Celiac disease can exist even with lack of symptoms. Though there is some debate regarding the long-term consequences of totally symptom-free celiac disease when it is untreated, there is some evidence that untreated celiac disease may lead to significant health problems even when symptoms are lacking.
WHEN SHOULD RELATIVES BE SCREENED? Deciding how to time screening is important. A child, parent, or sibling of someone newly diagnosed with celiac disease may unexpectedly find themselves consuming less gluten in a shared household, and this may lead to less accurate testing (specifically a false negative result). Antibody testing for celiac disease unfortunately cannot distinguish between an individual without celiac disease, and one who has celiac but is no longer eating gluten, so it is best to test household relatives as soon as possible. For relatives who have sharply decreased their gluten intake, ensuring that enough gluten is consumed for approximately a month in advance of screening can increase the ability of the test to detect celiac disease when it is present.
WHICH ARE THE BEST TESTS FOR CELIAC DISEASE SCREENING AND WHAT DO THE RESULTS MEAN? For most children and adults, the best way to screen for celiac disease is with the Tissue Transglutaminase IgA antibody, PLUS an IgA antibody to be sure that the patient's system generates enough of this antibody to render the celiac test accurate. For young children (around age 2 years or below) Deamidated Gliadin IgA and IgG antibodies should be included as well. As it currently stands, these are all blood tests.
Negative screening tests for celiac disease collected in the setting of unrestricted gluten intake mean that here and now, the individual probably does not have celiac disease. However, testing for celiac risk genes (HLA DQ2 and HLA DQ8) can determine whether future screening is necessary. In order to develop celiac disease, at least one of these genes must be present. While up to 40% of the general population carries one of the common celiac risk genes, as much as 80% of first degree relatives do. Yet carrying a risk gene only means that it is possible to develop celiac disease and for first degree relatives it means that periodic screening is recommended in the future. However, a negative gene test excludes the possibility of later developing celiac disease so this can be valuable information for first-degree family members. We would therefore advocate performing the genetic test for celiac disease in family members, especially children to prevent future unnecessary screening or those that lack the genes for celiac disease.
We recommend screening gene-positive first degree relatives every 3 to 5 years. The benefits of screening beyond the first-degree generation (for example, screening grandparents/grandchildren, and first-cousins) are less clear. However, a previous study performed by us demonstrated that second degree relatives carried a similar risk of having a diagnosis of celiac disease as first degree relatives. It is reasonable to inform second degree relatives that they also are at risk to have celiac disease.
CELIAC DISEASE FOUNDATION What Happens With Celiac Disease Celiac Disease (CD) is unique in that a specific food component, gluten, has been identified as the trigger. When individuals with CD eat gluten, the villi (tiny hair-like projections in the small intestine that absorb nutrients from food) are damaged. This is due to an autoimmune reaction to gluten. Damaged villi do not effectively absorb basic nutrients – proteins, carbohydrates, fats, vitamins, minerals and, in some cases, water and bile salts. If CD is left untreated, damage to the small bowel can be chronic and life threatening, causing an increased risk of associated disorders – both nutritional and immune related.
Dermatitis Herpetiformis (DH) is the skin manifestation of celiac disease characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most frequently found on the face, elbows, knees and buttocks. DH patients can have intestinal damage without obvious gastrointestinal symptoms. Dermatitis Herpetiformis (DH) is diagnosed by a biopsy of a skin lesion and staining for IgA in the tissues. More than 85% of DH patients have small bowel sensitivity to gluten. Everyone with DH needs to follow a gluten-free diet.
OTHER DISORDERS LINKED WITH CELIAC DISEASE Down Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Williams Syndrome
Label Reading The key to understanding the gluten-free diet is to become a good ingredient label reader. The following ingredients should not be consumed. They are derived from prohibited grains:
Wheat (durum, graham, Kamut®, semolina, spelt)
Malt, malt flavoring, malt vinegar (are generally made from barley, verify the source)
A label that declares a complete list of ingredients is safest. Labels must be read every time foods are purchased. Manufacturers can change ingredients at any time. As of 2006, wheat used in products will be identified on the label. You may verify ingredients by calling or writing a food manufacturer and specifying the ingredients and the lot number of the food in question. State your needs clearly – be patient, persistent and polite.
Domino's Gluten Free Pizza Crust Celiac Disease Foundation (CDF) and Celiac Sprue Association (CSA) have reviewed the promotional materials from Domino's Pizza regarding their gluten free crust. Domino's Pizza materials state that the gluten free pizza offered is not recommended for those individuals with celiac disease. CDF and CSA recommend that individuals with celiac disease carefully review all representations made by gluten free food purveyors before determining if a food is appropriate for their personal diet, including those made by Domino's.
ASK THE DIETITIAN Keeping Your Child Gluten-Free during School Hours The school year is officially underway! It's common for parents to feel overwhelmed about making sure their child stays completely gluten-free while under the care of school professionals. Fear not! Beyond Celiac has tools and resources so you and your child can focus on learning, not just staying safe from gluten exposure. Here's what we have to help you get through the school year ahead:
Back to School Toolkit: Complete with recipes, a 504 Plan Roadmap, tips for navigating everyday life, GREAT training, and more
This is a website that has lots of useful information on Gluten-free food. It includes resources, tools, and webinar and blog advice on how to live and thrive gluten-free. Here is the website: celiac.org/askthedietitian The FDA announced it's gluten-free labeling rule on Friday, August 2, 2013
It sets a clear standard, food products may be labeled gluten free if they contain less than (<) 20ppm of gluten. It is safe to say that the announcement elevated awareness about celiac disease and the gluten-free diet to new heights! Read our press release.
The ACDA is proud to have worked on this historic regulation alongside the FDA since 2004. We shared our expertise and technical assistance and helped the agency prepare for the questions you'd have about the rule. Shortly after it was released FDA Deputy Commissioner, Mike Taylor called to thank the ACDA for its leadership and dedication through the nine year process. He also asked that his gratitude be shared with the entire celiac community. Thank you all.
What Does The Rule Mean? Remember the 4 C'sConsistency - By August 2014 products* labeled 'gluten-free' will contain less than (<) 20 ppm of gluten.
Clarity - No more guessing if 'no gluten' or 'free of gluten' means the same thing as 'gluten-free.' It does.
Consumer-Friendly - Product selection will take less time knowing that 'gluten-free' on a label can mean just one thing. The product contains less than (<) 20 ppm.
Confidence - Gluten-free consumers will have clear information to make safe food choices.
Key Facts About the Gluten-Free Labeling Rule 1. Products labeled gluten-free must contain less than 20ppm. This includes food products regulated by the FDA, either made in or imported to, the United States. Dietary supplements are also covered. The effective date for compliance is August 5, 2014.
Food under USDA's jurisdiction, meat, poultry, and certain eggs products are not covered.
Distilled spirits or wines with 7 percent or more alcohol by volume*
Malted beverages made with malted barley and hops*
*These items are regulated by the Bureau of Alcohol and Tobacco Tax and Trade Bureau (TTB) who provided guidance on the labeling of such beverages. FDA will be working with both USDA and TTB to harmonize their respective labeling requirements. 2. Food manufacturers will not be required to test their products. They are responsible for ensuring that the food product meets all labeling requirements.
3. The rule is voluntary. A manufacturer may opt-out of labeling a product gluten-free even if it doesn't contain gluten.
4. A label which reads 'no-gluten,' 'free of gluten,' or 'without gluten' will be interpreted to mean 'gluten-free' and subject to the labeling rule.
5. It is unclear how the new regulation will affect restaurants that make gluten-free claims on their menus.
In the rule summary, FDA "suggests that any use of an FDA-defined food labeling claim (such as "fat free" or "low cholesterol") on restaurant menus should be consistent with the respective regulatory definitions."
The ACDA has asked FDA for clarification on this point and will report that information on our website as soon as it is available.
Since 2003, the ACDA has served as the voice of the celiac community. We initiated and led the advocacy efforts which have produced two historic achievements for the celiac community:
Passage of the Food Allergen Labeling and Consumer Protection Act, and