1. True or False: A blood test is used to diagnose celiac disease and non-celiac gluten sensitivity.
The correct answer is false.
Diagnosing celiac disease is considered to be well-understood by expert researchers. Gluten sensitivity, however, is still considered the “new kid on the block.” A blood test is the first step in diagnosing celiac disease. This test looks for antibodies to gluten produced by the body. If this test indicates celiac disease is a possibility, then a small intestinal biopsy is performed to confirm the diagnosis. The biopsy looks for different degrees of intestinal damage, such as damaged villi (the small, fingerlike projections in the small intestine that are responsible for absorbing nutrients from food).
Gluten sensitivity, however, can only be diagnosed once celiac disease and a wheat allergy are ruled out. If a doctor and patient still think gluten can be the cause of the person’s symptoms, then this person can take on an elimination diet under the direction of a doctor or registered dietitian who is knowledgeable about gluten-related disorders. An elimination diet helps pinpoint which foods (if any) are causing symptoms.
To learn more about celiac disease testing, click here. To learn more about gluten sensitivity, click here.
2. True or False: Celiac disease is considered a food allergy.
The correct answer is false.
Confusion exists around celiac disease because of the way it is treated. Similar to the treatment for a food allergy, celiac disease is managed by eliminating certain foods. However, celiac disease is a genetic autoimmune disease, which is very different from a food allergy. Celiac disease is triggered by the consumption of gluten, a protein found in wheat, barley and rye. When a person with celiac disease eats gluten, the immune system sees gluten as a “foreign invader” and launches an attack on the person’s body. This attack leads to the production of antibodies to gluten and, as a result, damage to the small intestine. The small intestine is lined with villi, fingerlike projections that are responsible for absorbing the nutrients from food. When the villi are damaged, the person with celiac disease is unable to get the appropriate nutrients it needs, no matter how healthy their diet is. This can lead to many different health problems. You’ll read more about these problems and symptoms in answer #5.
To learn more about celiac disease, visit What Is Celiac Disease?
3. True or False: People living with celiac disease can eat a little bit of gluten from time to time.
The correct answer is false.
There are currently no pharmaceutical treatments or a cure for celiac disease. That means the only way to treat celiac disease is to completely remove gluten from the diet for life, since gluten triggers the body’s autoimmune response. Just a crumb-sized amount of gluten-containing food can be enough to launch the autoimmune response in a person with celiac disease. To put this into perspective, just think about a restaurant serving a piece of steak. Let’s say the server brings the customer with celiac disease a piece of steak with breaded onion as a garnish on top. The customer with celiac disease will know right away the meal is unsafe for them because of the gluten-containing breading on the onion. The customer sends the meal back to the kitchen, where the server simply removes the breaded onion from the top of the steak and re-serves the same piece of steak to the customer. This puts the customer with celiac disease at serious risk, because cross-contact has occurred. Cross-contact puts a person with celiac disease at risk for triggering the body’s autoimmune response to gluten. Eating foods that have come into cross-contact with gluten can also cause a host of symptoms for a person with celiac disease that can last for varying lengths of time, depending on the person. Some people even say that they experience ill effects for more than a week if they accidentally eat gluten. Many will not experience any immediate symptoms, or even any symptoms at all, after being exposed to gluten. This does not mean that damage to the body has not happened. People who are asymptomatic (those who don’t have any symptoms) are particularly at-risk for cross-contact since their body doesn’t alert them to accidental gluten ingestion. Without overt symptoms, it is virtually impossible to know if there is a need to re-examine their diet as a way of determining if gluten is being ingested through cross-contact or hidden sources of gluten.
4. Why can dining out be challenging for people living with celiac disease or gluten sensitivity?
The correct answer is D, all of the above.
Dining out is just one social situation that can pose problems for people living with celiac disease or gluten sensitivity. While awareness is definitely on the rise, many foodservice professionals do not understand the severity of gluten-related disorders and the incredible importance of a medically necessary gluten-free diet. The gluten-free “fad” diet has contributed to this, as many unfortunately believe that people adhere to the diet to lose weight or experience some other perceived benefit, like healthier skin or better health in general. While the term “gluten-free” is recognizable, many have not yet made the connection between the diet and its true purpose – treating celiac disease and gluten sensitivity. NFCA is striving to correct this problem through its online gluten-free training course, GREAT Kitchens.
5. Which of the following diseases can develop if celiac disease is not treated?
The correct answer is D, all of the above.
Some people with celiac disease may experience ill effects from ingesting gluten within just a few hours, while others may not notice any symptoms at all. While symptoms will eventually subside, the damage to the intestine may remain longer, as the body needs time to once again heal. Since the body can react to small amounts of gluten, such as a crumb-sized amount of gluten-containing food, the absorption of nutrients from food is interrupted. As you can imagine, reoccurring intestinal damage impacts not just the intestine, but other bodily systems as well. Over time, this persistent damage can lead to complications such as bone disease, thyroid disease, infertility, lymphoma, and additional autoimmune diseases. This damage can also lead to deficiencies in essential vitamins and nutrients such as iron, vitamin D, vitamin B12, zinc, folic acid and calcium. In fact, iron deficiencies are one of the most common signs of celiac disease. These deficiencies can also lead to other health consequences. For example, a lack of calcium leads to osteoporosis, which can affect as much 75% of people with long-term, untreated celiac disease. It’s imperative for people with celiac disease to maintain a 100% gluten-free diet to prevent long-term complications. Not only will damage occur to the intestines, but as illustrated above, the entire body is negatively affected in serious ways by gluten ingestion.
6. Family members of people with celiac disease should get themselves tested because:
The correct answer is A, celiac disease runs in families.
Celiac disease is a genetic autoimmune disease, so family members of people diagnosed with celiac disease have a higher risk of developing it than the general population. More specifically, 1 in 22 first-degree family members (that’s parents, children and siblings) are at risk for celiac disease. 1 in 39 second-degree family members (that’s aunts, uncles, nieces, nephews, cousins, grandparents and half-siblings) are at risk for celiac disease. When you compare those numbers to the 1 in 133 people within the general population who have celiac disease, it’s easy to see how much higher the risk is for family members.
Genetically at-risk family members should be tested even if they do not have any symptoms. Symptoms can vary greatly from person to person, so family members with celiac disease may not have the same symptoms as one another. This does not mean celiac disease may not be present. What’s more, some people have “asymptomatic celiac disease,” meaning they might not notice any symptoms at all, despite actually having the disease. Many people who are asymptomatic realize how poorly they actually felt once they adopt the gluten-free diet and begin to heal.
Family members may be interested in learning more about genetic tests for celiac disease because of the need for ongoing blood tests. Genetic tests identify the celiac disease genes, HLA-DQ2 and HLA-DQ8. Without these genes, it is virtually impossible to develop celiac disease, so family members lacking these genes do not have to continue with regular blood tests. Family members who do have the genes should work with their doctor to determine how often celiac disease blood tests should be administered. It’s important to remember that celiac disease can develop at any time, so genetically at-risk family members should be tested often for celiac disease, even if the first test came back negative. Blood tests for celiac disease are considered highly accurate.
To learn more about how you can start a conversation with your family member about getting tested for celiac disease, visit www.beyondceliac.org/familytalk. To learn more about genetics, register for NFCA’s upcoming free webinar, “Celiac Disease in Families: How Genes Determine Your Risk.”
7. The U.S. Food and Drug Administration (FDA) officially ruled on gluten-free food labeling. What is the gluten threshold defined by this ruling.
The correct answer is B, less than 20 parts per million (ppm).
Until August 2013, there was no official definition for “gluten-free” when it came to food labeling. Now, the FDA has officially deemed that an FDA-regulated packaged food must contain less than 20 ppm of gluten in order to have a “gluten-free” label. Less than 20 ppm is an amount of gluten that researchers have deemed safe for most people with celiac disease to consume, even for those who eat many packaged gluten-free alternatives. Contrary to popular belief, there is currently no way to guarantee “zero gluten.” Current validated testing methods cannot test to that level.
But what does 20 ppm actually mean? Tricia Thompson, MS, RD of Gluten Free Watchdog provided a great example in the September 2013 NFCA webinar, “Understanding the FDA’s Gluten-Free Labeling Rule: What You Need to Know.” Tricia says to think of a bag of marbles. If you bought one bag containing a million blue marbles, but found that the bag actually contained 999,980 blue marbles and 20 red marbles, you can say that bag of marbles was contaminated with 20 ppm of red marbles. According to Pam Cureton, RD, LDN of the Center for Celiac Research at Massachusetts General Hospital, “…you would have to eat about 18 slices of gluten-free bread in one day to reach the daily 10 mg level of gluten consumption.” (source)
Dr. Alessio Fasano, also of the Center for Celiac Research, explained the 20 ppm threshold in his letter, “In Defense of 20 Parts per Million.” To read his letter, click here.
To learn more about the FDA’s rule on gluten-free labeling, visit www.beyondceliac.org/FDA.
8. True or False: The U.S. FDA's rule makes it mandatory for companies to call out gluten on the label or to state when a product is gluten-free.
The correct answer is false.
Manufacturers are not required to label their products as gluten-containing or gluten-free. Currently, manufacturers are only required to call out what are considered the top eight allergens under the Food Allergen Labeling Consumer Protection Act (FALCPA): milk, eggs, peanuts, tree nuts, fish, shellfish, soy and wheat. (Keep in mind that gluten is also found in rye and barley, not just wheat. So, a packaged food that doesn’t contain wheat may not necessarily be gluten-free.)
Under the new rule, however, manufacturers who do make a gluten-free claim on an FDA-regulated packaged food product must comply with the definition by August 5, 2014. Other terms that must meet the FDA’s rule include “no gluten,” “free of gluten,” and “without gluten.” This means that claims such as “made with no gluten-containing ingredients” and “not made with gluten-containing ingredients” do not have to comply with the rule. It is important to purchase foods that are expected to abide by the federal regulation, as manufacturers making these claims are required to meet the new standard. Products labeled with a claim of “gluten-free,” “no gluten,” “free of gluten,” and “without gluten” that do not meet the FDA standard can lead to penalties for manufacturers.
It is important to note that the use of a “gluten-free” label does not replace or eliminate the need to comply with the mandatory allergen labeling that requires wheat and other top allergens to be listed (as described above). To learn more about the FDA’s ruling on gluten-free labeling, visit NFCA’s comprehensive web section at www.beyondceliac.org/FDA.
9. True or False: Over-the-counter enzymes can be helpful for people with celiac disease or gluten sensitivity who suffer from cross-contact or other gluten exposure.
The correct answer is false.
Products currently available that claim to protect people from cross-contact or other sources of gluten exposure have not had their claims approved by the FDA. At this time, a strict lifelong gluten-free diet remains the only way to treat celiac disease and there aren’t any options to supplement the treatment. Research, however, is proving the need for additional treatments to support people with celiac disease, especially because the majority of people diagnosed continue to be exposed to gluten (skip to #10 for the exact number!). In a case study written by celiac disease experts Alessio Fasano, MD and Carlo Catassi, MD, MPH, “although no gluten consumption is the ideal treatment for celiac disease, a minimal degree of gluten contamination is difficult to avoid.” Therefore, people with celiac disease may be in need of extra help when it comes to following the gluten-free diet.
Currently, while there are not any pharmaceutical treatments available for people with celiac disease, clinical trials are underway to test potential treatments to both supplement and replace the gluten-free diet. To learn more about these efforts, visit www.beyondceliac.org/DrugDevelopment. If you’re interested in learning how you can be a part of the various forms of celiac disease research, sign up for NFCA’s Research Opt-In to receive special research announcements and up-to-date information.
10. What percentage of people with celiac disease are still exposed to gluten while trying to maintain a gluten-free diet?
The correct answer is C, 70%.
According to celiac disease expert Dr. Joseph A. Murray of the Mayo Clinic and NFCA Scientific/Medical Advisory Council Member, as many as 70% of people living with celiac disease are still exposed to gluten while on their gluten-free diet. This statistic proves just how difficult it can be to maintain a gluten-free diet and points to the need for greater education and awareness within the general population and the celiac disease community. For example, the general population needs more education on the consequences of ingesting gluten for those with celiac disease. Restaurants and manufacturers also require more education on gluten-containing ingredients and how to prevent cross-contact during the food manufacturing, preparation, and serving processes.
Many diagnosed with celiac disease are not properly educated by their physician on the ins and outs of the gluten-free diet and oftentimes do not visit a registered dietitian skilled in celiac disease, whether because of cost or because they feel they can manage the diet on their own. Unfortunately, many newly diagnosed people make the mistake of eating foods that appear to be gluten-free, but actually are not. For example, many think corn flakes would be a gluten-free option since corn is considered a safe ingredient. However, most corn flakes cereals are typically made with barley malt, making it an unsafe alternative. Oftentimes, the newly diagnosed do not recognize other hidden sources of gluten, like soy sauce, licorice and lunch meats. They may continue to accidentally ingest gluten because of a lack of education following diagnosis (that’s why NFCA is here!).
As mentioned in answer #9, this statistic also points to the need for additional treatment options outside of the gluten-free diet alone. There are currently several pharmaceutical treatments in development. To learn more about some of the potential treatment options, check out the Who’s Who in Celiac Disease Drug Development section.
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