The Celiac Disease Foundation prides itself in being the information resource for celiac disease for various people affected by, and in the field of, celiac disease.
About Celiac Disease
What is celiac disease?
Celiac disease is a serious, genetic autoimmune disease in which the ingestion of gluten leads to damage in the small intestine.
What is gluten?
Gluten is a protein found in wheat, barley, and rye. It is primarily made up of two other proteins—gliadin and glutenin.
What are the major symptoms of celiac disease?
Celiac disease affects people differently. Over 200 symptoms related to celiac disease have been identified. These symptoms may occur in the digestive system or in other parts of the body.
In classical celiac disease, patients have signs and symptoms of malabsorption, including diarrhea, steatorrhea (pale, foul-smelling, fatty stools), and weight loss or growth failure in children.
In non-classical celiac disease, patients may have mild gastrointestinal symptoms without clear signs of malabsorption or may have seemingly unrelated symptoms, such as anemia, difficulty losing weight, fatigue, and chronic migraine.
In asymptomatic celiac disease, patients test positive for celiac disease, but do not complain of any symptoms.
What triggers celiac disease?
While the exact cause is currently unknown, experts generally agree there are three things required to trigger celiac disease: genetic predisposition, an overly responsive immune system, and environmental triggers. Environmental triggers can include when—and how much—gluten is introduced into the diet, traumatic/stressful events, and other factors. More research is needed to determine how big of a role environmental factors play in triggering celiac disease.
How is celiac disease diagnosed?
A simple blood test is the first step in diagnosing celiac disease. People with celiac disease who eat gluten have higher than normal levels of certain antibodies in their blood. These antibodies are produced by the immune system because it views gluten (the proteins found in wheat, rye and barley) as a threat. A positive blood test is then followed by an endoscopic biopsy to confirm the diagnosis.
Should I be eating gluten before my blood test?
Yes, you must be on a gluten-containing diet in order for the test to be accurate. Continue eating a normal diet that includes gluten until your test. If you have been on a gluten-free diet for a few weeks or more, you should start a “gluten challenge” under the advisement and care of a medical professional. A gluten challenge is the reintroduction of gluten into the diet.
Current Gluten Challenge Guidelines
NASPGHAN recommends eating roughly 2 servings of gluten, equivalent to 2 slices of wheat-based bread, daily for 6-8 weeks prior to testing.
The Celiac Disease Center at the University of Chicago recommends eating gluten every day, in an amount equivalent to at least 1 slice of bread, for at least 2 to 3 weeks prior to undergoing biopsy.
Please consult with your gastroenterologist regarding your gluten challenge.
Can celiac disease be tested for genetically?
Genetic testing can be used to determine who is at risk for developing the disease. People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes, but so does up to 25-30% of the general population. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease, nor does it mean you will ever develop celiac disease.
I have the genes for celiac disease but I haven’t shown any symptoms yet. What should I do?
An estimated one third of the population has at least one of the genes associated with celiac disease, yet most never develop the disease. There is a good chance you won’t develop it either. However, you should still get your blood screened every 2-3 years, or immediately if symptoms appear. If you have 1st or 2nd degree family members with celiac disease, it is even more imperative you keep getting screened as time passes.
What are the chances that others in my family have celiac disease since I’ve been diagnosed with it?
The prevalence of celiac disease in 1st and 2nd degree relatives of someone already diagnosed with the disease is significantly higher than in the general population. It is estimated that among 1st degree relatives (children, parents, siblings), the prevalence rate is between 4% and 16% (1 in 25 and 1 in 6) while among 2nd degree relatives (aunts, uncles, grandparents), the rate is about 2.6% or 1 in 38.
What are villi and what is villous atrophy? How fast does gluten destroy the villi? Is it permanent?
Villi are small, finger-like projections in the small intestines that help you absorb nutrients. Villous atrophy is the blunting or flattening of the villi that can be caused by the damage done by the immune system in a person with celiac disease after ingesting gluten. Damage to the villi can begin as early as three hours after exposure to gluten. However, the villi are not permanently damaged as the intestines continuously renew themselves.
What does “gluten-free” really mean on a product label?
On August 2nd, 2013, the FDA ruled that for a product to be labeled as “gluten-free” it must either not involve any gluten-containing ingredients, or if it does have gluten-containing ingredients, the product must be processed to remove gluten and the final product must contain less than 20 parts per million (ppm) of gluten. The FDA gave food manufacturers one year to comply with the ruling but encouraged them to comply as soon as possible.
If I have celiac disease but no symptoms, can I still eat gluten?
No. Even if symptoms don’t appear, the ingestion of gluten still damages the intestines and also increases your risk for various complications like cancers and osteoporosis.
I feel better on a gluten-free diet. Can I just assume I have celiac disease?
No. There are other possible causes for improvement on a gluten-free diet. Always refer to a medical professional when making a clinical diagnosis.
Can I use products like shampoos or lotions that contain gluten if I have celiac disease?
Gluten must be ingested for it to be cause for concern for someone with celiac disease or dermatitis herpetiformis. However, we still recommend you avoid any products that have the potential to be ingested.
Can a gluten-free diet help me lose weight?
A gluten-free diet does not necessarily equal weight loss and can result in certain nutrient deficiencies. A gluten-free diet is only recommended for those with celiac disease or other gluten-related disorders. If you think gluten is a problem for you, you should consult your doctor as soon as possible to find a diagnosis for you before starting a gluten-free diet. Once on a gluten-free diet, it becomes more difficult to diagnose or rule out celiac disease.
What is “leaky “gut”? How does it relate to celiac disease?
The intestines are always somewhat “leaky” because they are always absorbing nutrients. A leaky gut, while not a medical term, typically refers to increased intestinal permeability, which can be caused by inflammation of the gut due to celiac disease.
What is dermatitis herpetiformis and how is it related to celiac disease?
Dermatitis herpetiformis (DH), also known as Duhring’s Disease, is a form of celiac disease that results in itchy, blistering skin rashes. Patients with DH almost always have the same gluten-dependent intestinal damage as celiac disease patients and they must also follow a strict gluten-free diet.
What is refractory sprue?
Refractory sprue or refractory celiac disease refers to an unresponsive case of celiac disease where the villi of a patient with celiac disease do not recover even after the patient stays on a gluten-free diet. For a diagnosis of refractory sprue, all other possible causes of the intestinal damage must be eliminated. Refractory sprue affects a small percentage of people with celiac disease.
When should gluten be introduced into the diet of an infant?
Research suggests that introducing gluten within the first few months can greatly increase the risk for celiac disease later in life. However there is also research suggesting that introducing gluten too late also increases risk of celiac disease. Right now there is no conclusive research that has determined when the best time to introduce gluten into the diet is to prevent celiac disease from developing. Be sure to always get the support of your pediatrician or dietitian to make sure your baby is getting the nutrients he or she needs.
Are there any financial or government resources for people with celiac disease?
Yes, there are various tax deductions, unemployment benefits, and equal opportunity protections in public institutions (e.g., gluten-free school lunches).
Why do we need a cure for celiac disease if a gluten-free diet takes care of all my symptoms?
A gluten-free diet is currently the only way to treat celiac disease. Other treatments or a cure would not only improve the health of those with celiac disease but would also improve their quality of life in several ways:
- Intestinal damage can fail to heal even under a gluten-free diet
- Any failure in adherence to a gluten-free diet, accidental or not, increases risk for osteoporosis and cancers
- Food labels can be complicated and misleading
- It’s difficult to eat gluten-free, especially when eating at restaurants
- Exposure to gluten can cause acute food poisoning in celiac patients
- Gluten-free food is typically more expensive
- It can be challenging to get all the nutrients you need on a gluten-free diet
- Processed gluten-free products are often high in fats and low in fiber
Celiac Disease Foundation Team Gluten-Free
What is Celiac Disease Foundation Team Gluten-Free?
The Celiac Disease Foundation Team Gluten-Free™ is Celiac Disease Foundation’s grassroots fundraising program. Team Gluten-Free members participate in athletic events from marathons to golf tournaments, and use their passion and talents to create unique fundraisers like movie nights, foosball tournaments, pub crawls, mitzvah projects, wedding favors, and even virtual walks! Monies raised by Team Gluten-Free members support the Celiac Disease Foundation’s advocacy, education, and research programs.
Join CDF Team Gluten-Free
Can I use the Celiac Disease Foundation Logo to Promote my Event or Product?
Team Gluten-Free members are not allowed to use the Celiac Disease Foundation logo on their materials. Celiac Disease Foundation holds several large-scale events each year that are organized by the Celiac Disease Foundation staff, and does not want the public to perceive that Team Gluten-Free events or product sales are Foundation-sponsored. By using the Team Gluten-Free logo instead of the Celiac Disease Foundation logo, it is clear that the member is a part of Team Gluten-Free, supporting the Foundation, but that the event is not a Foundation-sponsored event.
I want to make a credit card gift, but I don’t want to submit my information through the Internet.
While Celiac Disease Foundation offers a secure website at celiac.org/donate, you may also make a gift via phone or mail. To make a gift by phone, please call (818) 716-1513, x104 Or, you can mail a check to us at: Celiac Disease Foundation, 20350 Ventura Blvd., Ste. 240, Woodland Hills, CA 91364.
Does the Celiac Disease Foundation sell, rent or share donor information (e.g., mailing and e-mail addresses and phone numbers) to other agencies?
The privacy of our donors is very important to us and we do not share or sell this information.
Does the Celiac Disease Foundation issue tax receipts?
Yes. The Celiac Disease Foundation is a 501(c)3 nonprofit, tax-exempt organization designated by the Internal Revenue Code. When you contribute over $5 to the Foundation, you will receive a charitable tax receipt for income tax purposes. Our tax ID number is 95-4310830. For all other donations, your canceled check or credit card statement can serve as record of your donation.
You can expect your receipt for your donation within one to three weeks from the date you send it in. If you make your gift online, your receipt will be emailed to you.
If you are making a recurring donation through your credit card, your contribution will be charged automatically on the day and the frequency you have selected. You will receive an annual statement summarizing your gifts to the Celiac Disease Foundation (either electronic or hard copy), and your credit card statements serve as additional record of your contribution.
How can I obtain another gift receipt?
To obtain a duplicate gift receipt, please call us at (818) 716-1513, x101 or email us at firstname.lastname@example.org with your full name as it appeared on your donation, your address, the date you made the donation and the amount. Please include a phone number or email address so we may contact you.
How do I make a donation in honor or memory of someone?
To make a donation, please visit our donation page. Celiac Disease Foundation will mail an acknowledgment card to your designated recipient(s), letting them know of your gift (the amount of the gift is not included.) You will receive a gift receipt for income tax purposes.
You may also call us at (818) 716-1513, x104 or mail a check to: Celiac Disease Foundation, 20350 Ventura Blvd., Ste. 240, Woodland Hills, CA 91364. Please provide the the name of the person for whom you are making the tribute, and the name and mailing address of anyone you would like to receive an acknowledgment card.
Corporate Sponsorship Opportunities
How does a partnership with the Celiac Disease Foundation work?
The Celiac Disease Foundation offers Sponsorship opportunities to help you reach your philanthropy and cause marketing goals. A mutually beneficial partnership with the Celiac Disease Foundation provides brand visibility to a targeted gluten-free audience and helps fund our initiatives to improve the quality of life for everyone affected by celiac disease. Please learn more here or contact Laura Boone, email@example.com, or 818.716.1513, x105 for more information and to create a package that best fits your brand’s mission and goals.
Media and Speaker Requests
Does the Celiac Disease Foundation participate in media and press inquiries?
The Celiac Disease Foundation is the nation’s preeminent nonprofit for individuals and their caregivers with celiac disease. For three decades we have been at the forefront of celiac disease research, education, and advocacy and are a trusted resource on celiac disease. We encourage the news media to cite information from our website and share our website, celiac.org, as helpful resources. For all media inquiries, contact Brianna Evers, Brianna.firstname.lastname@example.org, or 818.716.1513, x 110. The Foundation is qualified to speak to the press on a variety of topics and are open to discussing collaboration.