It’s just like being a little kid with a super sore throat and your mom taking you to the doctor to get a test for strep throat. The doctor swabs your throat with two sticks to find out what nasty bacteria is camping out. In just moments you’ve got a diagnosis of strep throat and can start antibiotics to miraculously make the pain go away. You go home with a prescription, get in bed and eat mom’s homemade chicken rice soup until you feel better in a couple of days. How cool would it be if getting diagnosed with celiac disease was this easy?

The wonderful news is that we’re getting closer to having a test that will diagnose celiac disease with just a  simple prick of a finger and a 10-minute wait. The CeliacSure Test Kit measures (anti-tTG) IGA antibodies from a fingertip blood sample. It works by taking a small drop of blood, mixing it with a buffer and applying the mixture onto a test cartridge. Within moments two red lines appear if the test is positive, while only one line appears if the result is negative. And, you can take the test at home without ever getting out of your pajamas!

“The test kit is a point-of-care, at-home test that’s very similar to reading results of a pregnancy test,” said Dr. Daniel Leffler of the Celiac Disease Center at Beth Israel Deaconess Medical Center in Boston. Dr. Leffler, a gastroenterologist by training with a background in nutrition, has long-standing interest in celiac disease. Several years ago he teamed up with Dr. Ciaran Kelly and Dietitian Melinda Dennis to found the Celiac Disease Center at Beth Israel Deaconess Medical Center where they focus not only on providing top notch patient care, but also on high level disease research. The latest project: studying the efficacy of the CeliacSure test for celiac disease diagnosis.

Dr. Leffler said his team got involved with the finger prick test study because they feel it’s important to take down barriers to patients getting diagnosed with celiac disease. “We do a lot with educating other medical providers about offering in-clinic testing, but I think it’s really important to put a tool in the hands of the people.”

“We’ve teamed up with the [marketers] of the test kit at GlutenPro/Biocard CeliacSure Test to see how effective this test is in the USA. We’re providing 2 kits per family to use on first-degree relatives of people with celiac disease. To qualify, participants in the study must not be on a gluten-free diet. We send them the test kit to take as well as a survey about their ability to use and understand the test. The goal is that this small study comes out favorable so we can move on to large scale studies that will compare the finger prick test to the gold standard laboratory serology testing.”

Dr. Leffler says he’s really excited about the potential of this point-of-care test because it will “allow us to reach a population that might not otherwise come in to get tested, mainly first degree relatives of patients already diagnosed with celiac disease.”

It’s important to note that right now the CeliacSure test is only for research purposes, not actual diagnosis. It is available in Canada and other countries, but it’s still under evaluation here in the United States. And, while the strep throat analogy is a great way to think about how this test will work, it’s extremely important to understand that if you get a positive result with the CeliacSure test, do not start a gluten-free diet until you have followed up with a doctor to confirm the diagnosis.

As with all medical studies there’s some fine print you need to know about. Participants in the study must meet all of the following criteria:

• Over the age of 18
• A first or second degree relative with celiac disease
• Not previously diagnosed with celiac disease
• Not on a gluten-free diet or low-gluten diet within the past 3 months
• Able and willing to self administer the test, complete a short survey form and return both in the provided envelope
• Willingness to have follow up medical evaluation in the event of a positive test
• A resident of the United States

Listen to a full interview with Dr. Leffler about the CeliacSure study on the Hold the Gluten Podcast with Vanessa Maltin Weisbrod and Maureen Stanley now! And, if you would like to participate in the study, please contact Dr. Toufic Kabbani at celiac@bidmc.harvard.edu or by phone at 617-667-0528.

Imagine planning out each of your daily meals and snacks, counting every gram of carbohydrate, and balancing this intake with medication. Now, combine that task with managing a nutritionally balanced and completely safe gluten-free diet. For one segment of the celiac disease population, this balancing act is reality, as they juggle living gluten-free with managing Type 1 Diabetes.

Although Type 1 Diabetes occurs in only 0.05 percent of the general population, within the celiac disease community that number grows to between five and ten percent. Why?

Researchers from the University of Cambridge in England recently discovered a genetic link between the two autoimmune conditions. The research team found that the two diseases share at least seven chromosome regions, or specific locations of gene or DNA sequences on chromosomes.

Type 1 Diabetes occurs when a person’s immune system mistakenly attacks healthy cells in the pancreas which produce insulin, a hormone needed to convert sugar (carbohydrate) into energy. While the intestinal lining that is destroyed by consuming gluten in those with celiac disease can repair itself, pancreatic cells cannot. This means that people with Type 1 Diabetes must inject themselves with insulin in order to process carbohydrates. A balanced, stable, and nutritionally dense diet is essential in managing both diseases.

Because of the findings coming out of England, screening for celiac disease has become routine protocol among diabetic patients in the United States. According to Pam Cureton, R.D., LDN, at the Center for Celiac Research at the University of Maryland, this step is critical because the vast majority of patients with both conditions don’t show classic celiac disease symptoms.

So how does a patient keep up with the demands of both diseases? Here are three major tips for a happy and healthy gluten-free and diabetic-friendly lifestyle:

Maintain Consistent Carbohydrate Intake
For a diabetic-friendly diet, maintaining consistent carbohydrate intake from meal to meal is key. This will vary depending on weight and caloric needs, but a good estimate is between 210 and 240 grams per day, spread evenly across meals and snacks to avoid fluctuations in blood sugar. The amount of insulin prescribed for Type 1 Diabetes is based on the number of grams of carbohydrate consumed. The more refined the food, the higher it will raise your blood sugar, and the more insulin you will need in order to process the food. Because many gluten-free foods are made with rice flours and other low-fiber, highly refined starches like potato, corn, and tapioca, many gluten-free alternatives tend to raise blood sugar more than their gluten-containing counterparts. Whereas simple carbohydrates like cookies and other refined products turn into sugar quickly, lean proteins, healthy fats, and whole grains stay in your stomach longer, allowing nutrients and carbohydrates to be released more slowly, helping to stabilize blood sugar, Cureton explains.

Learn to Pay Attention and Read Labels
Pay close attention to the carbohydrate content per serving of food and learn how to read labels. Diabetes patients should check blood sugar levels before meals and snacks to determine correct insulin dosages. However, when also adjusting to a gluten-free diet with diabetes, it can help to check levels after meals as well to determine how specific gluten-free substitutes affect your blood sugar. While adjusting to both of these diets, look at the amount of gluten-containing foods you normally consume per meal. Then, look at the content of your new alternative and adjust insulin doses to better match the new amount of carbohydrate. Note that the carbohydrate count of the specific gluten-free products you choose will vary from brand to brand.

“The key is to find healthy, high fiber, gluten-free alternatives,” says Cureton. “If you are used to having whole wheat toast with fruit for breakfast, don’t feel the need to change your routine. Find a whole grain gluten-free bread alternative, look at its carbohydrate content, and adjust medication to compensate.”

Consider Changes to Your Body
Before switching your diet, it’s important to consult with a skilled dietitian to consider how some side effects of celiac disease, such as malabsorption caused by damaged intestinal cells, could change as you switch to a gluten-free diet. As the intestine heals and the body is better able to absorb nutrients, insulin needs may change. In the first few months of a new gluten-free diet, closely monitoring blood glucose levels and adjusting medication accordingly can help produce a successful transition to a gluten-free lifestyle.

Source List
Pam Cureton, RD, LDN, Center for Celiac Research, U. Maryland John Todd, Ph.D., Cambridge Institute for Medical Research, University of Cambridge, U.K.; Robert Goldstein, M.D., Ph.D., chief scientific officer, Juvenile Diabetes Research Foundation, New York City; Weimin He, Ph.D., assistant professor, Center for Environmental and Genetic Medicine, Texas A&M Health Science Center Institute of Biosciences and Technology, Houston; Dec. 25, 2008, New England Journal of Medicine

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By Audrey Scagnelli, Delight Intern

The risk of consuming gluten does not stop with food; gluten can be found in everyday medication as well. Unfortunately, there are few to no disclosure requirements forcing drug manufacturers to label medicine as containing gluten, a fact which ultimately means that celiac patients, physicians, and pharmacists end up working with drug manufacturers for hours in search of the answer to the question, Does this drug contain gluten?

The primary problem? One month a drug may contain gluten, and the next it may be gluten-free: there is no constant in terms of the presence of gluten in medication.

In its most common form, gluten makes its way into medicine by being used as an excipient, or filler, which binds the drug together, provides bulk and shape, or aids in digestion of the pill or tablet. It is important to understand that excipients are inactive ingredients; they serve a purpose, but it is the active ingredient that has the medicinal effect. Fillers are made from many starch sources, including potatoes, corn, tapioca, and wheat. In addition, the risk of cross-contamination is also a concern, even in cases in which no gluten exists in the excipients: pharmaceutical companies buy excipients in large batches from third-party manufacturers who will not verify whether there has been gluten exposure. As a result, the pharmaceutical companies refuse to guarantee that there was no exposure to gluten during the production process.

Since the Food and Drug Administration does not require companies to disclose the botanical source of the starch, which would force manufacturers to label starch as “cornstarch” or “potato starch,” for instance, it is close to impossible to find out what kind of starch is in a particular medicine. In fact, under current FDA standards, there is no requirement for any inactive ingredient in medication to be sourced.

Gerry McEvoy of the American Society of Health System Pharmacists says, “The first step and the simplest step [toward addressing standardization of medication regarding gluten] would be an enforcement of proper labeling.” He goes on to say that uncontaminated cornstarch, which poses no risk, is the most common starch used in medicine, but that “it’s difficult to provide assurance that the drug product doesn’t provide a risk to those with an intolerance.”

It is important to note that generic versions of a drug may contain varying excipients; thus, though one version does not contain gluten, there is no guarantee that another is also gluten-free. Labeling the botanical source of starch would go a long way toward helping celiac patients manage medication, though it would not eliminate contamination concerns.

Alarmingly, as reported by Steve Plogsted (a clinical pharmacist at Nationwide Children’s Hospital in Columbus, Ohio), “some drug companies have been telling people that some of the drugs that they manufacture contain gluten. When I investigated their claims, it appeared that the reason they are blatantly claiming that their drugs are contaminated is that they have used a sugar alcohol as an excipient.” Such incidents simply raise concerns about labeling and about accuracy regarding the presence (or absence) of gluten. Sugar alcohols are, in fact, carbohydrates and are naturally found in numerous fruits and vegetables. They may also be extracted from various sources that include starch, such as wheat.

Plogsted explains, however, that “during the manufacturing process, [sugar alcohols] are completely refined, leaving behind no gluten proteins,” comparing the process to making table sugar. His website, www.glutenfreedrugs.com, reports that the two most commonly used sugar alcohols in prescription drugs are mannitol and xylitol, which are used as sweeteners in liquid drugs or as bulking agents. As cited by the Gluten Intolerance Group of North America, these ingredients are considered safe for celiac patients to consume.

Plogsted notes that sugar alcohols are naturally found in many everyday food items and cautions that they are likely, if consumed in significant quantities, to cause in the non-celiac gastrointestinal disturbances and diarrhea, mimicking the symptoms of celiac patients if exposed to gluten.  

Crucially, Plogsted states, “You’re less likely to be exposed to gluten if you have a liquid medication. I don’t know of any liquids that have a starch in them; however, liquids are less portable, and a lot more expensive, and there are a whole lot fewer choices.” It must be noted that, though liquid medications are greatly beneficial to the celiac, they are both harder to manufacture and often less stable than the pill version of the medicine.

Plogsted has been leading the effort to ensure the disclosure of gluten in medication for over a decade. His website, www.glutenfreedrugs.com, is used as a primary resource for the National Foundation for Celiac Awareness and the American Society of Health-System Pharmacists. On the website, Plogsted provides an up-to-date list of drugs that are gluten-free as well as a list of those that contain gluten.

Plogsted suggests contacting drug companies that claim their products contain gluten and finding out which excipient the medication contains. If they respond with “sugar alcohols,” he and many others believe the given medications are likely safe to consume. That being said, it is ultimately up to the patient to decide if the drug poses a risk to them.

The Bottom Line:
Many consider the real issue to be the lack of strong proof of what risks are really carried by medications that contain gluten-bearing excipients, since the quantity of gluten in the medicine is so small. McEvoy says, “the FDA is underfunded as it is, and they’d need clear evidence to enforce new labeling laws; that evidence is tough to provide.” In order to present clear data suggesting gluten in medication is harmful, a very isolated and controlled study would have to occur, and that, of course, would require extensive funding.

Nevertheless, today there are numerous ways to keep track of medication and stay healthy and gluten-free. Delight Gluten-Free Magazine has compiled its own guide about what you can do to best keep track of your own medication.

Quick Tips:
o When purchasing medication, always look on the label for starch.
o Verify that the starch is a gluten-free ingredient.
o Remember that drugs are frequently reformulated, so check the starch often if you routinely refill prescriptions.
o Opt for the liquid form of medication whenever possible.
o Maintain a good, open relationship with your pharmacist and physician.
o Pharmacists are often happy to help read a drug’s list of ingredients and can help contact the manufacturer.
o Use www.glutenfreedrugs.com

By Emma Steinberg, Delight Contributor

Many of us deal with stress on a regular basis, but imagine adding to your existing stress a splitting headache so excruciating that the pain radiates all the way down to your jaw, making light more painful to look at than your middle-school crush dancing with your worst enemy, and magnifying almost every noise through the biggest megaphone ever invented. For 39 years, that’s what Paige Vietor had to deal with.

As a child, instead of being able to enjoy a special trip to the best candy store in Houston (one that puts Dylan’s Candy Bar to shame), Paige had to stay in the car, lying down, eyes closed, paralyzed by a migraine. These migraines didn’t just last a few hours; they lasted at least three days. They would come on suddenly and intensely. In college, Paige joked that she lived in the infirmary, spending at least half the week trying to recover. And if the President of the United States ever invited her to dinner, she’d have to decline since there was no way she could guarantee that one of her debilitating migraines wouldn’t rear its ugly head.

Paige’s story is not unique. Many people like her struggle for years, trying everything from prescription medication to acupuncture. More than 28 million people in the United States suffer from migraine headaches.

Doctors typically talk about triggers when it comes to migraines. They tell you to avoid stress (yeah, right!), trigger foods like aged cheese, and even certain types of medications. One item that is often missing from the list of triggers, however, is gluten. This is interesting, given that some studies estimate that up to 45% of people suffering from undiagnosed celiac disease have migraine headaches.

But why such a large percentage? During a migraine, your body initiates an inflammatory reaction, releasing cells called cytokines. Cytokines are part of your body’s cell-mediated immune response. They can affect the function of other cells, like the killer T cells that cause infected or specially marked cells in your body to commit suicide. Cytokines also mop up serotonin, your “feel-good” neurotransmitter, and with less serotonin, you feel more pain. Enter celiac disease.

Researchers believe that celiac disease’s autoimmune components cause an elevated cytokine response in the brain. So just as with other migraines, but worse, serotonin levels drop and too many killer T cells are let loose to attack your cells, generating massive pain.

Researchers also hypothesize that this elevated autoimmune response in the brain may be exacerbated by deficiencies of certain vitamins or enzymes, like vitamin B12, folic acid, vitamin E, and biopterin. These deficiencies are common in untreated celiac disease, and are associated with neurological symptoms, like migraines.

In Paige’s case, it was an iron deficiency that put her doctors on the trail to celiac disease. She had dropped down to 103 pounds and was so anemic that she had to drink liquid iron, but even that was not enough. Despite downing the elixir—which Paige describes as a nasty brown liquid that tasted like blood—as directed, her iron levels still did not come up. That’s when her doctors sent her for a biopsy, and thank goodness they did, because within a month of beginning a gluten-free diet, she was migraine-free for the first time in her life.

That’s the fascinating thing about the connection between celiac disease and migraines: anecdotal evidence from patients across the country illustrates that once you eliminate the gluten protein from your diet, the migraines disappear within a matter of weeks. It’s as simple as that.

So if you’ve been struggling with migraines that seem to be untreatable and are stumping your doctors, ask to get tested for celiac disease. Even if you don’t think you’re sick, but you just don’t feel right, talk to your doctor about celiac disease. Treating it may be just the thing you need.

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Anyone familiar with celiac disease knows the typical symptoms: gas, bloating, fatigue, and various other signs of gastrointestinal distress. But what if your body materialized the illness in a completely unexpected way and to an area completely unrelated to the digestive tract?

About 20 to 25% of people with celiac disease don’t actually show any gastrointestinal upset in response to the gluten protein. Instead, they break out in an intensely itchy and painful rash—an affliction related to celiac disease and known as dermatitis herpetiformis.

Shortly after the birth of her son, Beth Triner noticed an irritating skin rash on her knees. For months, she brushed off the existence of the itchy, hive-like pustules as stemming from the stress of being a new parent. Eventually, Beth noticed that her rash came and went but always reappeared at some point, primarily on her knees and elbows. She figured it was connected to seasonal allergies and didn’t feel it necessary to seek out a physician.

Years later, however, after Beth returned from vacation in Cancun, Mexico, her skin rash spiraled out of control. After almost two decades of painful and itchy patches on her body, Beth and her doctors finally diagnosed her mystery outbreaks: dermatitis herpetiformis (DH), due to celiac disease.

DH is the outward and visible result of the body’s abnormal immunological reaction to gluten. The chronic itchy lesions are deposits in the skin which are the body’s response to IgA, the antibody used to fight the toxins in gluten. The only way to the fix the damage to the skin is to maintain a gluten-free diet. “It was so intensely itchy that I’d wake up scratching,” Triner explains. “In my case, the rash eventually moved from the knees and elbows to the buttocks. That was what bothered me the most. At one point, it hurt to sit.”

Triner tried everything in her medicine cabinet, from hydrocortisone cream to Benadryl, yet nothing seemed to work on her skin eruptions, which doctors originally thought were caused by eczema or perhaps chigger bites.

“DH is hard to pinpoint because you want to scratch it so much, it often looks different when you finally get into the doctor’s office,” Triner notes. Unfortunately, general practitioners are less likely to be familiar with the nuisances of DH and its connection to celiac. Triner, like many, actually helped to diagnose herself by bringing in an article from the Journal of The American Dietetic Association that featured a picture of a DH rash, which looked extremely similar to her own.

Triner had always suffered from a mild case of IBS. She had never thought twice about her GI-symptoms until her DH diagnosis. “DH was my ‘aha!’ moment,” notes Triner, who immediately embraced a gluten-free diet after tests for DH came back positive, and later celiac tests came back positive.

According to Dr. Dan Leffler, a GI/celiac expert at Beth Israel Deaconess Medical Center in Boston, “DH is a specific manifestation of Celiac Disease.” Celiac and DH are both the result of the body’s reaction to the immunoglobulin A (IgA) antibody, which is produced in an abnormal immune response to the presence of gluten: in the celiac, the antibody transforms from a benign protein to a toxin. “Skin happens to have antibodies most closely related to those in the stomach,” Dr. Leffler explains, so while one celiac may show inflammation solely in the gut, another may produce inflammation in the form of a DH rash on the skin.

As is the case for celiacs who show symptoms in the gut, the only way to reduce and remove the damage done by IgA antibodies is a life-long gluten-free diet. Patients may seek immediate and temporary relief in Dapsone, but this antibacterial pharmaceutical medication can be harsh on the liver. Patients typically only stay on Dapsone for a period of about six months—generally the amount of time it takes IgA deposits to leave the skin.

Melinda Dennis, Nutrition Coordinator at the Celiac Center for Beth Israel Deaconess Medical Center, stresses the importance of nutritional therapy as “the only way to heal the lesions. Though going gluten-free can be overwhelming, getting rid of DH, which can cover large amounts of the body, even the scalp, is a big motivating factor.”

According to Dennis, the positive effects of going gluten-free are often seen in the GI system before the skin. “IgA in the skin takes longer to clear up, so it often takes a few months, though it depends on the individual, the severity of the rash, and the scars and scabs associated with scratching the lesions,” Dennis advises. It is important to note that excessive amounts of iodine, which can be found in seaweed, fish, and milk, can for some reason actually exacerbate the DH rash.

Unfortunately, data explaining why DH affects only 20-25% of celiacs is limited. There is not much information on or awareness of DH, and as a result, doctors are more likely to incorrectly diagnose the problem. “Dermatologists are slowly becoming more aware,” Dr. Leffler explains; “however, the problem starts at primary care. It’s difficult to add more problems, more things to diagnose, to [the burdens of these physicians].”

Patients are encouraged to take a pro-active approach and stand up for themselves, much as Beth Triner did in 2004. After an incorrectly performed biopsy by her physician, Triner was referred to a gastroenterologist and a dermatologist. “Go straight to the dermatologist to get the biopsy,” Triner recommends to anyone who thinks he or she may be struggling with DH-like symptoms. “For patients with typical symptoms but an unexplained negative blood test, it is still wise to do a biopsy.”

A proper biopsy is imperative to diagnose DH. Triner, whose physician performed an incorrect biopsy, thereby slowing her diagnosing and healing process, asserts doctors “should not try to diagnose a lesion [in isolation]. They must also do a biopsy of unaffected skin next to an IgA deposit and perform a very specific process called direct immunofluorescence.”

Dermatitis herpetiformis has proven to be another branch of celiac disease that desperately needs a campaign for awareness. To “g.i.” celiacs and non-celiacs alike, DH is a surprising discovery: the idea that the gut and skin can both be affected by gluten is astonishing. Unfortunately for general care physicians, DH is another affliction to add to the list of things needing quick and efficient diagnosis. As a result, patients need to be proactive with their health and spark the awareness. Know your health condition and improve your life! It may be as simple as a gluten-free diet.

Figuring out the gluten-free diet can be a tricky endeavor. With so many varying opinions and little guidance from the U.S. FDA on food labeling, people on a gluten-free diet are often left wondering, “What on earth can I eat?”

To help answer some of the greatest gluten-free myths, Delight Gluten-Free Magazine called upon Shelley Case, B. Sc., RD, a leading gluten-free nutrition diet expert in North America and author of Gluten Free Diet: A Comprehensive Resource Guide. She is a member of the Medical Advisory Boards of the Celiac Disease Foundation, the Gluten Intolerance Group, and the Canadian Celiac Association, as well as the Advisory Board of Living Without Magazine. As a dietitian specializing in celiac disease, Case stresses the importance of following the gluten-free diet correctly, while maintaining a well-balanced, nutritious diet.  Recently, the busy nutritionist-turned-author and speaker agreed to discuss some questionable ingredients, so that all of our Delight readers can make informed choices about what is and what is not gluten-free.

There are many misconceptions about which ingredients are safe on the gluten-free diet, and which ones should be questioned. Our readers have asked about the safety of many of the same confusing ingredients. Those include distilled alcohol, blue cheese, modified food starch, and natural flavors. Shelley Case tackles those things for us, plus a few more. For helpful information on other questionable ingredients and the gluten-free diet in general, be sure to check out the latest edition of Case’s book, Gluten-Free Diet: A Comprehensive Resource Guide (www.glutenfreediet.ca).

Following the gluten-free diet correctly requires knowledge and determination. With so many things we must avoid when it comes to gluten, it doesn’t make sense to avoid perfectly safe ingredients. Instead of relying on outdated information when it comes to something as important as our health, it’s a good idea to seek out the most current and up-to-date information available. This is especially important when it comes to the gluten-free diet. Shelley Case has spent years investigating food ingredients, and we can all benefit from her extensive research findings. Her findings really takes the guess work out of the gluten-free diet. Below are Case’s explanations regarding the gluten-free status of several of the most questioned and confusing ingredients out there.

• Vinegar: The number one frequently asked question concerns vinegar.  All vinegars except for malt vinegar are gluten-free. Distilled vinegar can be derived from a variety of ingredients including apples and rice, and from grains such as corn or wheat. Although distilled vinegar can be made from wheat, the distillation process removes the gluten protein, and the final product does not contain any residual gluten. However, malt vinegar is made from fermented barley and is not distilled; therefore, malt vinegar contains a small amount of gluten and must be avoided by those following the gluten-free diet.

• Alcohol: Distilled alcoholic beverages such as rye, scotch, gin, and vodka can be made from a variety of fermented grains. Like distilled vinegar, though, even alcohol made with gluten-containing grains is gluten-free because the distillation processed removes the gluten protein. Liqueurs are a mixture of distilled alcohols with added flavorings or extracts, though gluten-containing ingredients are not typically used in these products. Wine is made from fermented grapes and is gluten-free. Some wine coolers and ciders, however, may contain barley malt flavoring and are not gluten-free.  Obviously, it is important to check the ingredient label of these alcoholic beverages.

• Spices and Seasonings: Spices and herbs do not contain gluten. Although an anti-caking agent is sometimes added to spices, those most often used include silicon dioxide, calcium silicate, or sodium aluminum silica—not wheat flour or wheat starch. Seasonings are a blend of flavoring agents, including spices and herbs, which are often combined with a carrier agent. The carrier can include salt, sugar, lactose, whey powder, starches, or flours. Gravy mixes, sauces, and snack foods often contain seasonings with wheat flour or wheat starch. In the U.S., the Food Allergen Labeling and Consumer Protection Act requires wheat to be declared on food labels of all products. Therefore, if seasonings contain wheat flour or wheat starch, it will be declared on the label. For products sold in Canada, current Canadian labeling regulations do not require the declaration of wheat when used in seasonings, so individuals must confirm with manufacturers whether wheat is used in the seasoning blend. Fortunately, many companies are voluntarily declaring allergens and gluten sources in ingredients such as seasonings.

• Modified Food Starch:  Modified food starch can be made from corn, potato, tapioca, wheat, or other starches. In North America, modified food starch is most often made from corn or potato starch, with tapioca and wheat used occasionally. In the U.S., if modified food starch is made from wheat, it must be listed as such on the label.  Canada does not require wheat to be identified in modified food starch labels, but fortunately Health Canada is currently revising food allergen regulations. The new regulations will soon require manufacturers to declare on the food label all major allergens and all gluten sources—wheat, rye, and barley—when used as an ingredient or component of an ingredient.

• Blue Cheese: This food has been a hot topic in the gluten-free community for many years. Recently, Health Canada and the Canadian Celiac Association investigated blue cheese, testing three different types of blue cheese including Roquefort, with three different types of ELISA tests. All of the tests on all the blue cheese samples found no detectable gluten, even in blue cheese that used gluten-containing starter cultures. Blue cheese is considered gluten-free, due to the manufacturing process and purification techniques used to make it.

• Flavorings: There are several thousand substances that can be used to flavor foods. They can be derived from natural sources such as fruit, vegetables, grains, spices, dairy, meat, fish, and eggs, and from artificial substances (e.g., derived from chemical synthesis). Gluten-containing grains are not frequently used as flavoring agents. There are two exceptions: hydrolyzed wheat protein and barley malt. In both the U.S. and Canada, hydrolyzed wheat protein cannot be hidden on food labels as “flavors” or “natural flavors.” In the U.S., it must be declared as hydrolyzed wheat protein, but in Canada it may be labeled as hydrolyzed plant protein or hydrolyzed vegetable protein. Fortunately, many manufacturers voluntarily declare the source of the hydrolyzed protein on the label. Barley malt can be used as a flavoring agent, but it is almost always listed as barley malt, barley malt extract, or barley malt flavoring. It is rare to find barley malt listed as just “flavor” or “flavoring” on the food label of North American products.

• Caramel Coloring: Caramel color can be made from a variety of sugars or starch hydrolysates. Although gluten-containing ingredients such as barley malt syrup or starch hydrolysates can be used in the production of caramel color, North American companies use corn, as it has a longer shelf life and makes a superior product. Some European countries may use glucose syrup derived from wheat starch; however, the caramel coloring is so highly processed that it is rendered gluten-free.

• Maltodextrin: This ingredient can be derived from different starches such as corn, rice, or wheat. In North America, corn and potato are the most common sources from which maltodextrin is made; wheat-based maltodextrin is used more frequently in Europe. Although maltodextrin can be derived from wheat, it is highly processed and purified.  Recently, scientists have tested wheat-based maltodextrin using the R5 ELISA test and have found very low levels of gluten or no gluten in the finished product. As this ingredient is added to foods in small quantities, the finished products contain an insignificant amount of gluten. The European Food Safety Authority has permanently exempted wheat-based maltodextrin from food allergen labeling, based on this recent research.

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For over ten years, the Celiac Disease Center at Columbia University has been on the forefront of celiac disease research in the U.S. The director of the Center and Professor of Clinical Medicine, Peter H. R. Green, MD, has devoted equal amounts of time to research and patient treatment. In fact, people from around the world travel to New York to seek help from the wonderful gastroenterologists at Columbia University’s Celiac Disease Center. Recently, Dr. Green took the time to answer some of our questions about celiac disease as it affects Americans as well as people in other nations around the world.

DGF: Why is it still difficult to get doctors in the U.S. to consider that celiac disease could be the culprit making patients sick—especially the ones with IBS symptoms that don’t resolve with IBS treatments?

Dr. Green: There are a couple of reasons, actually. Most doctors here are not prominently taught about celiac disease in medical school or in post-graduate education. The latter is often funded by big pharmaceutical companies, and none of them presently offer a medication to treat celiac disease. We really can’t blame the doctors totally because most of them are not going to look for something in their patients that they were taught is extremely rare. Of course, celiac disease is not rare at all, but many doctors still think that it is.

DGF: Researchers now know that there is such a condition as non-celiac gluten sensitivity. Is there a way to diagnose that condition?

Dr. Green: Like patients with celiac disease, patients with gluten sensitivity can have gluten antibodies which indicate they have issues with the protein. Some of them go on to have normal biopsies, so they are not given a celiac diagnosis. There is a concern that some of those patients don’t have proper biopsies performed; many doctors take only two samples from the intestine when looking for villi damage (which celiac causes), whereas four or more samples are needed for an accurate diagnosis. It’s been shown that taking four samples will double the rate of diagnosis in celiac patients. Another problem is that not all pathologists know how to properly read the biopsy slides submitted for evaluation. Thus, some patients with celiac are labeled as gluten-sensitive.

With gluten sensitivity patients, there is a spectrum of symptoms and manifestations. We’ve seen some people with Dermatitis Herpeteformis who have no intestinal damage. There is currently no test specifically for gluten sensitivity. If a patient’s symptoms indicate issues with gluten and tests for celiac are negative, the patient can be diagnosed as gluten-sensitive. As with celiac disease, a strict gluten-free diet is the only treatment for gluten sensitivity.

DGF: You’ve spoken before about the fact that the gluten-free diet can be devoid of some nutrients that one would get by eating a diet containing gluten. Gluten-free oats can help with that issue, but some patients with celiac can’t tolerate even certified gluten-free oats; why is that?

Dr. Green: Oats themselves are gluten-free, but commercial oats are often contaminated with gluten due to the way they are grown, stored, or transported. There have been a couple of cases in which celiac patients have had true gluten reactions from certified gluten-free oats, but most people with celiac disease can safely tolerate certified gluten-free oats. Some patients who think they’re reacting to safe oats are actually reacting to the extra fiber (from the oats), which they are not used to. Oats should be added to the gluten-free diet slowly in order to avoid symptoms that mimic those of a gluten reaction. Safe gluten-free oats can be an important part of the gluten-free diet, adding needed fiber and other nutrients not present in many of the popular gluten-free grains.

DGF: What do you see in the future regarding the treatment for celiac disease? Could the dream of a prescription medication that would allow patients to eat gluten one day be a reality?

Dr. Green: I don’t think there will be a medication that will allow people who can’t tolerate gluten to eat a normal diet. More than likely what will happen is that a drug will be developed that will help protect against cross-contamination. Such a therapy could allow people to more safely eat outside their homes, avoiding getting sick when dining out and traveling. The treatment might even prove to protect from quite a bit of gluten exposure. For instance, some naturally gluten-free foods have been found to be packed in gluten flour, and taking a medication could prove beneficial in those cases as well.

However, it is a matter of concern that some patients might start taking pills on an ongoing basis and resume eating a normal diet. That is the worrisome side to the introduction of a new drug therapy for celiac disease. In such cases, patients could cause themselves intestinal damage while the drug masked outward symptoms. Nevertheless, a new treatment for celiac disease would improve the quality of the lives of the people who have the condition. In a recent study, only 30 percent of people polled said they were not interested in taking a pill for celiac disease. That leaves 70 percent of patients waiting for such a treatment to hit the market. When any new treatment for celiac disease is available, celiac awareness in the medical community will increase, since there will be, for the pharmaceutical company that produces the drug, a benefit in educating doctors about the conditions it’s meant to treat.

DGF: The U.S. has come a long way in the last five years regarding gluten-free products and dining options for people on the gluten-free diet. Even so, many European companies are still ahead of those in this country in terms of those things and celiac awareness in general. What can the average person do to help drive change in our communities so we can catch up with countries that got a head start on us?

Dr. Green: It’s true that people with celiac in some countries have benefits offered to them through their healthcare programs. For example, in the U.K., celiac patients can have gluten-free food delivered to their homes for free, since food is the drug prescribed for their condition. In Italy, people get a couple of extra (paid) days off each year in order to shop for gluten-free food. That food is also partly subsidized by the government. These benefits are not available in the U.S. because healthcare is provided through privately owned insurance companies.

There are many things that patients can do to help increase awareness and improve the gluten-free market themselves. People should talk about the condition with friends, family members, teachers, and social workers. Also, patients need to demand appropriate medical care for their disease. They should ask their doctors what other tests they need due to their celiac condition. They can even educate their doctors about gluten-free foods, letting them know that there is much more available for patients these days than ever before. It’s a good idea for people to invite doctors and teachers to local support group meetings as well.

One of the ways people can be most helpful is to help fund celiac research in this country. Just as people run races for conditions like breast cancer, multiple sclerosis, and Crohn’s disease, so people with celiac disease can participate in such fundraising activities. This is done to a degree here, but not on a large scale. It has not been the norm for the celiac community to rally behind fundraising events. Research money is needed, and, in fact, it would make a great difference in the progress we’re making to improve the lives of people with celiac disease.

Peter H.R. Green, MD is the author of Celiac Disease: A Hidden Epidemic, now in its second printing. Visit www.celiacdiseasecenter.org for more information.

The Celiac Disease Center at the University of Chicago was the first such organization in the United States. The Founder and Director of the Center, Dr. Stephano Guandalini, MD, is a world-renowned pediatric gastroenterologist and celiac disease expert. Many celiac disease patients (diagnosed via intestinal biopsy) have received much appreciated gift baskets through the Celiac Disease Center’s signature program, Gluten-Free Care Packages. Dr. Guandalini is quite optimistic about recent research findings and took time to share his insights about the future of celiac disease with Delight Gluten-Free Magazine.

DGF: The Celiac Disease Center at the University of Chicago is very active in terms of researching the condition and raising awareness about it within the general population. Can you tell us about your annual free celiac disease blood-screening program, including who is qualified to participate in it?

SG: Our first celiac screening event was held in 2001, so our center has hosted it for ten years now. We had about 150 participants the first year; we’ve operated at full capacity for the last few years, testing 500 people. In addition to performing free blood tests for celiac disease, we hold a Q&A session for participants. People are eager to ask questions about celiac disease, so each year we include specialists from our center as well as experts that deal with celiac in other disciplines such as dermatology and dietetics on the Q&A panel. We find that many people sign up for our event because their own doctors would not test them for celiac disease because they do not have classic symptoms of the condition.

When we started this program, our goal was to increase the diagnosis rates of celiac disease, and each year, approximately 6% of the people who are tested at our screenings are found to have the condition. For practical reasons, the screening event is not open to the general population but to those who have good reason to be tested for celiac disease. This includes people with symptoms as well as those with no symptoms but who are related to others who do have the genetic condition.

DGF: Is it true that at least one first-degree relative of many celiac patients are diagnosed with the disease within a few years of the celiac’s own diagnosis?

SG: It’s important for first-degree relative of patients with celiac disease to also be tested for the condition, since it’s genetic. It’s important also to note that the number of years before another family member might be diagnosed (if any are) varies for each family, and that a negative test for celiac does not clear that family member for a lifetime. First-degree relatives should therefore be retested every three to four years, because the condition can present at any time throughout one’s life. This holds true for people with or without celiac symptoms, since some patients are asymptomatic. The exception to the rule would be if family members have the genetic test for celiac and don’t have any celiac genes. That means they will likely never develop celiac disease, but it does not rule out gluten intolerance, which is a different problem for which there is presently no suitable diagnostic test.

DGF: There seems to be some contradictory information about when it’s best for mothers with celiac disease to introduce gluten-containing grains to their infant children. Is it possible that introducing these foods at certain times in their development could help prevent the child from developing celiac disease later in life?

SG: There is a lot of interest in this subject; currently there are three important studies going on about it. Two of them are in Europe, one in the United States. So far, the answer is still a moving target, but we do know a few things based on preliminary findings. It appears that introducing gluten into the diet at three to four months of age greatly increases the risks of the child’s developing celiac disease later in life. Waiting until the infant is five to six months old to introduce small amounts of gluten, during which time the child continues to be breast-fed, might prevent the child from developing the condition later in life. If the child does eventually develop celiac disease, the onset of the condition might at least be delayed if gluten is introduced at five to six months of age rather than earlier.

DGF: Earlier this year, research at your center discovered something very interesting regarding retinoic acid and IL-15 in relation to reactions in celiac disease patients. Can you elaborate on this new finding and why it’s such a significant piece of information for better understanding the condition?

SG: Our study showed that retinoic acid—in the presence of IL-15—has properties that induce intestinal inflammation in celiac patients. Due to these findings, caution is called for regarding the use of vitamin A and retinoic acid for the treatment of autoimmunity and inflammatory intestinal disorders associated with high levels of IL-15. For example, treating acne with a product like Accutane, which is high in vitamin A, might not be the best course of action in patients with these particular inflammatory reactions. Also, they might need to limit their intake of foods such as carrots which are high in vitamin A. This new information about retinoic acid and IL-15 in regard to celiac disease gives us new insight into further understanding and possibly treating the condition.

DGF: There is a new study out of Italy showing that baked goods made with fully hydrolyzed wheat flour might be safe for people with celiac disease. The study was quite small but did show promise, since the group of subjects who ate food made with fully hydrolyzed wheat flour foods showed no outward symptoms. Also, their blood work was normal, and their biopsies showed no changes to the intestinal lining at the end of the 60-day trial. Do you think this area of research is worth exploring to see if the results can be repeated in a larger study?

SG: Yes—trying to duplicate the findings in a larger-scale study is important work. Even though the study included only a small number of patients, it was well done and the findings are reputable. The researchers involved have been working on the feasibility of producing non-toxic wheat for an extensive amount of time. It’s certainly possible that non-toxic wheat, which would be safe for people with celiac to consume, might be a reality eventually. However, people with celiac disease currently have many available options in terms of ready-made gluten-free breads and other baked goods. It’s likely that a non-toxic wheat-based product line would come with the higher costs associated with items already on the market. In other words, people would still need to seek out specialty items and pay more for them, just as they do now.

DGF: There is a lot of talk now about a vaccine for celiac disease. What are your thoughts on the subject, and when might we see a vaccine become available?

SG: There is a lot of promising work being conducted currently in that area. The vaccine trial in Australia is in phase 3 and I think a vaccine for celiac disease is definitely on the horizon. Only time will tell when it would be widely available, but I’d estimate we are looking at 10-12 years or so.

Many people credit Alessio Fasano, MD, with starting the celiac revolution in the United States. Fasano’s career began in his homeland of Italy, but he eventually made the move to The University of Maryland, where he currently heads up the Center for Celiac Research. The world renowned doctor took time out of his busy schedule to share some of the latest information about celiac disease, including possible treatments on the horizon. We are excited to be able to share Dr. Fasano’s take on several important issues with our readers.

DGF: Dr. Fasano, your career in Italy focused on celiac disease research, but when you came to the U.S., you were planning to change courses and work on other gastroenterology conditions. Why did you decide to stay on the same path and continue your celiac research when you arrived in the U.S.?

AF: I was absolutely not planning on working in the field of celiac disease when I arrived in the U.S., but when months and months passed without one celiac patient ever coming through my door; I started to wonder what was happening with the celiac population here. Americans basically have the same genes as Europeans do and they also eat a diet that includes gluten. Those are the two factors you need in order to see the condition in a population. In 1996, I published a research paper entitled “Where have all the American celiacs gone?” which marked my return to the study of celiac disease. Either people with celiac in America were wildly underdiagnosed or there were not many of them with the condition here. In any case, it would be interesting to find out what the truth was.

DGF: Your groundbreaking epidemiology study about the prevalence of celiac disease in the U.S. proved that 1 out of 133 people have the condition. More than 90% of those affected by celiac are not aware that they have it. Please explain what the "iceberg theory" is, in terms of the celiac population?

AF: Actually, that number comes from the combination of statistics for both adults and children. The number of adults affected by celiac in the U.S. was approximately 1 in every 105, when that study was completed in 2003. However, we now believe the number is still evolving. Not only did the diagnosis rates go up significantly in the last several years, the latest scientific research proves that the prevalence of the disease is also increasing. If we did the same extensive study today, odds are that the number of American affected by celiac disease would change again. For instance, it might be that as many as 1 in 90 adults in the U.S. are affected by the condition.

The iceberg theory is a reference to explain that presently, very few celiac patients have been correctly diagnosed. Even though an estimated 2.5 to 3 million people have the condition, only 150,000-190,000 of them are presently diagnosed. Those patients are the “tip of the iceberg” and everyone else is “under water”. Many undiagnosed patients have minimal symptoms or even none at all, making it very difficult for them to get tested and properly diagnosed.

DGF: In the U.S., we vaccinate against conditions that affect as few as 1 in 100,000 people. Since celiac disease affects such a large number of people, do you envision a celiac disease vaccination being a reality eventually and if so, what is your best estimate about when such a vaccine would be available worldwide?

AF: Based on current understanding of the immunological aspects of celiac disease, creating a vaccine for the condition looks very promising on paper and there is work being done in this area already. Such an advance would likely take 15 years or longer, depending on how the current economic crisis resolves itself. That work is dependent on research money and in times of economical distress, funding is not easy to come by. Therefore, there is no clear cut answer about when a vaccine for the condition might be available worldwide.

DGF: Safe gluten-free oats can be an important part of the gluten-free diet, considering how healthy oats are in general. Can you please explain why some people with celiac disease can not tolerate pure, uncontaminated gluten-free oats?

AF: Based on studies about celiac disease patients and pure uncontaminated gluten-free oats, indications are that a large majority (around 93-95%) of patients can safely tolerate them. Unfortunately, there is no good way to detect which patients can safely consume gluten-free oats. In order to figure it out, patients need to follow the gluten-free diet strictly and monitor their antibody levels. Once their celiac symptoms have resolved and their celiac antibodies are at normal levels, they can try adding gluten-free oats (in small amounts) back to their diets. This is the only way to determine if gluten-free oats should be a part of their diet plan going forward. If a patient doesn’t have negative consequences from eating gluten-free oats, they fit into the large group of celiac patients that can safely consume them.

DGF: Currently, the only treatment for the celiac disease is strict adherence to the gluten-free diet. Obviously, the million dollar question is whether or not a therapeutic treatment for the condition will ever be a reality. Many people are looking for a "magic pill" that will allow them to take medication and order a gluten pizza – and eat anything else they want to. Do you believe that the drugs currently being tested to treat celiac will offer such a simple solution - or is it more likely that eventually there will be a cross contamination remedy that will allow people to eat out and travel more easily?

AF: Like the vaccine for celiac, celiac disease therapeutic treatment research is being affected by current economic conditions. Alba Therapeutics and Alvine have both been working on a treatment for celiac disease for a while. Currently, there are good indications that a cross contamination type pill will eventually be introduced. Such a medication would help patients protect themselves when eating out, traveling and otherwise eating foods that they didn’t prepare themselves.

This type of treatment could help people enjoy the social aspects of life, which is very important. Patient follow-up research shows that some people (especially adults) that strictly follow the gluten-free diet are still getting damage in the intestines. The most logical explanation for this is that food consumed outside their homes is causing the damage. Not everyone who consumes gluten inadvertently has outward symptoms so a cross contamination pill could be a helpful tool in managing the gluten-free diet. The verdict is still out on whether or not a “magic pill” that would allow patients to eat gluten containing foods, will ever be a reality.

Alessio Fasano, MD, co-authored the book “Fast Facts: Celiac Disease” with Geoffrey Holmes, M.D., Ph.D. Carlo Catassi, MD. Fasano also contributed to “Real Life with Celiac Disease: Troubleshooting and Thriving Gluten Free” by Melinda Dennis, MS, RD and Daniel Leffler, MD, MS. For more information about the Center for Celiac Research, visit www.celiaccenter.org.

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