Frequently Asked Questions About Celiac Disease

Below are some frequently asked questions about celiac disease, its management, and gluten-free living.

What is the difference between celiac disease and gluten intolerance?

Celiac disease is characterized by an autoimmune reaction to gluten in genetically susceptible individuals that results in intestinal damage and malnutrition that can affect any organ system in the body. The only known treatment for celiac disease is a very strict, lifelong compliance with a gluten-free diet. Gluten intolerance, for the most part, results in gastrointestinal distress in individuals who consume gluten, without autoimmune or malabsorption results. It is not known yet if there is any genetic marker for this intolerance and, while treatment for this condition is also a gluten-free diet, small amounts of gluten may be tolerated without causing damage to the small intestine in those that are gluten intolerant.

What is gluten and what is a gluten-free diet?

Gluten is a general term for certain proteins that are found in wheat, barley and rye and are responsible for triggering the autoimmune reaction that is the hallmark of celiac disease. There is currently some controversy about whether a similar protein found in oats causes a similar response. Individuals who follow a gluten-free diet eliminate gluten and all derivatives of it from the food that they consume.

Grains that are NOT acceptable on the gluten-free diet are:

• Wheat, otherwise known as enkorn, durum, faro, graham, kamut, semolina, spelt
• Rye
• Barley including malt and brewers yeast, and triticale (a cross between wheat and rye)

Obvious places for the above grains are:

• Breads
• Pastas
• Baked goods
• Cereals
• Bars
• Malt products
• Soy sauce
• Marinades

Many processed foods can also contain other hidden sources of gluten.

What grains and starches are gluten free?

There are many grains and other sources of starch that are acceptable for anyone following a gluten-free diet. The most common are:

• Corn
• Potatoes
• Rice
• Tapioca (sometimes called cassava)

Other acceptable grains and sources of starch are:

• Amaranth
• Arrowroot
• Buckwheat
• Millet
• Quinoa
• Sorghum
• Sweet potato
• Taro
• Teff
• Yam

Sometimes gluten-free flour is also made from beans, legumes and nuts.

If I have celiac disease, do I have to follow a gluten-free diet forever?

At present, there is no treatment for celiac disease other than strict, lifelong adherence to a gluten-free diet. Exposure to even a small amount of gluten will cause damage to the small intestine. You cannot “grow out of” this disease. Over the course of time, intentional or non-intentional ingestion of gluten increases risk for many diseases including but not limited to lymphoma, osteoporosis and many other complications of malnutrition.

RWJBarnabas Health's Kogan Celiac Center is committed to providing expert nutritional education to help individuals manage their gluten-free diet and accompanying lifestyle changes. For information, call 973-322-7272.

What are HLA DQ2 and DQ8?

HLA (human leukocyte antigen) is a genetic marker or “flag” that exists on the surface of each cell in our bodies. Its function is to help the immune system distinguish between “self” cells and “invader” cells. Individuals who have either HLA DQ2 or HLA DQ8 markers are at risk for developing celiac disease and the presence or absence of this genetic material can be useful information in diagnosing this disease.

What is dermatitis herpetiformis?

Dermatitis herpetiformis is an itchy, blistering skin condition that is associated with celiac disease. It is commonly found bilaterally on the buttocks, knees, elbows, face and scalp. A skin biopsy is used to diagnose this skin condition. Individuals with the diagnosis of dermatitis herpetiformis can also show similar damage to the small bowel and show positive response to the gluten free diet.

If I have some of the symptoms, should I try going on a gluten-free diet?

No! When gluten is eliminated from the diet, the villi heal and the results of a biopsy will not be accurate or reliable. Individuals are advised to wait until they have been positively diagnosed with celiac disease before going on a gluten-free diet.

I have just been diagnosed with celiac disease. Should I get my family tested too?

Yes. Evidence suggests that first-degree relatives (parents, siblings and children) have an elevated risk for celiac disease, as do second-degree relatives (grandparents, grandchildren, aunts, uncles, cousins) to a lesser extent.

Are there support groups for people with celiac disease?

Many national support organizations have local chapters which host regular support group meetings. Please visit the RWJBarnabas Health Events Calendar to earch for support group meetings.

What foods qualify for gluten-free labeling in the United States?

If a product contains the words gluten free, the company is required to test the product and confirm it contains lower than 20 parts per million of gluten, which is safe for someone with celiac disease. If a product is certified gluten free, the company has taken stringent steps to ensure no cross contamination has occurred, and is third party tested to confirm it contains lower than 10 parts per million of gluten.

Do oats contain gluten?

Oats are technically gluten free, however, they are so heavily cross contaminated in the growing process that it is recommended to only consume products with certified gluten-free oats and the product would carry the certified label. Some people with celiac disease do need to avoid all oats.

What is cross contamination?

People with celiac disease need to be extra careful of cross contamination because even a small amount can cause a negative reaction. Therefore, it is suggested to get a separate toaster, wash and clean all cooking utensils to ensure there is not gluten residue. Be aware of how the food is cooked so that gluten-free food is not cooked on the same surface as gluten-containing food. Also, make sure a separate fryer is used for things like French fries; the oil can become contaminated if it is not a dedicated gluten-free fryer.

Is alcohol gluten free?

It is currently believed that the gluten protein is too heavy to be transferred to food or drink during the distillation process. So, distilled alcohol is considered safe for those following a gluten-free diet as long as no additional colorings or flavorings are added. However, traditional beer and other malt beverages are made with barley and are not gluten free.