Frequently Asked Questions

About Celiac Disease

Are there any financial or government resources for people with celiac disease?

Yes, there are various tax deductions, unemployment benefits, and equal opportunity proections in public institutions (e.g., gluten-free school lunches).

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What is Celiac Disease?

Celiac disease, found in some genetically predisposed individuals, is an autoimmune disorder where ingested gluten activates the immune system and results in damage to the small intestine.

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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.

Can celiac disease be tested for genetically?

Genetic testing for celiac disease, like having a family history of celiac disease, can be used to determine who is at risk for developing the disease. However, most people who have the associated genes do not ever develop the disease.

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.

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.

I have the genes for celiac disease but I haven’t shown any symptoms yet. What should I do?

An estimated 1/3 of the population has at least one of the genes associated with celiac disease yet most never develop the disease, so 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 also have 1st or 2nd degree family members with celiac disease, it is even more imperative you keep getting screened as time passes.

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.

Should I be eating gluten before my blood test?

Yes. If you aren’t on a gluten-free diet yet, continue eating a normal diet including gluten. 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. For current blood tests, you will typically need to go on a gluten challenge for 3 or so months. If you experience symptoms immediately after reintroducing gluten, you and your doctor could consider a shorter gluten challenge (a week to two weeks) followed by an endoscopic biopsy. Ask your doctor for more information.

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 the major symptoms of celiac disease?

There are about 300 known symptoms which may occur due to celiac disease. However there are many individuals who have celiac disease with no symptoms (asymptomatic).

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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 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.

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.

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How is celiac disease diagnosed?

Celiac disease is typically screened for by an antibody blood test, such as antibodies for tissue transglutaminase (tTG), and if positive, followed by an endoscopic biopsy to confirm.

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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.

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What triggers celiac disease?

There is no confirmed single trigger of celiac disease. It is thought that celiac disease requires three things: genetic predisposition, an over-responsive immune system, and individual environment. Environmental triggers include gluten itself, as well as other things such as length of breast-feeding and traumatic/stressful events. How strongly these environmental triggers relate to celiac disease is still being researched.

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.

What is gluten?

Gluten is protein found in wheat, barley, and rye. It is made up of two other proteins known as gliadin and glutenin.

What is gluten sensitivity?

Non-celiac gluten sensitivity (NCGS) is the condition diagnosed when celiac disease and wheat allergy have both been ruled out but the patient still improves on a gluten-free diet. A lot about this condition, like its pathophysiology, epidemiology, and treatments, are still unclear.

 

 

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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

CDF Team Gluten-Free

What is CDF Team Gluten-Free?

CDF Team Gluten-Free™ is Celiac Disease Foundation’s grassroots fundraising program.  CDF 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 CDF Team Gluten-Free members support CDF’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?

CDF 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 CDF staff, and does not want the public to perceive that CDF Team Gluten-Free events or product sales are Foundation-sponsored. By using the CDF Team Gluten-Free logo instead of the Celiac Disease Foundation logo, it is clear that the member is a part of CDF Team Gluten-Free, supporting the Foundation, but that the event is not a Foundation-sponsored event.

Celiac Disease Foundation

Does CDF 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 Celiac Disease Foundation issue tax receipts?

Yes. Celiac Disease Foundation is a 501(c)3 nonprofit, tax-exempt organization designated by the Internal Revenue Code. When you contribute over $5 to CDF, 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 CDF  (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 info@celiac.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 contact the Foundation about a donation?

Thank you for your generosity in supporting our fight against celiac disease and gluten sensitivity. If you have questions about how to help, please contact us during business hours (Monday through Friday, 9:30 am to 6 pm PST) by phone at (818) 716-1513 or via email to info@celiac.org. If you call or email outside of business hours, please leave a message and we will respond the next business day.

How do I make a donation in honor or memory of someone?

To make a donation, please visit our Tribute Gifts 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, x101 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.

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 cdf.thankyou4caring.org, you may also make a gift via phone or mail. To make a gift by phone, please call (818) 716-1513, x101 Or, you can mail a check to us at:  Celiac Disease Foundation, 20350 Ventura Blvd., Ste. 240, Woodland Hills, CA 91364.