The gluten-free diet has often been lumped in with other healthy or restrictive diet plans. Have you ever wondered the difference but never knew how to distinguish one diet from another?
The gluten-free diet has often been lumped in with other healthy or restrictive diet plans. Have you ever wondered the difference but never knew how to distinguish one diet from another?
The CeliacSure Home Celiac Test is poised to become a landmark screening method for celiac disease in the United States. It's already used around the world and, with the help of some of the best researchers out there, the FDA is currently reviewing the test for widespread use across the United States.
To help update all of our loyal readers on the status of the test kit's approval, we've called upon Dr. Daniel Leffler, MD, MS, Director of Clinical Research at The Celiac Center at Beth Israel Deaconess Medical Center. He's leading the charge on a study to investigate whether the test is as reliable as other screening methods to diagnose celiac disease.
Question 1: How are you testing people using the finger-prick test? Are they coming into the clinic and being tested by a nurse? Are they doing it on their own with supervision?
Answer from Dr. Leffler: "We are actually having people use the test on their own at their home or wherever they feel most comfortable taking it. We are really interested to see if this technology would be a useful way of reaching the undiagnosed population who wouldn’t otherwise come in to be tested or take part in a study.”
Question 2: Who are you testing?
Answer from Dr. Leffler: We are handing out the tests to people with celiac disease and asking them to give the test to their family members who are at-risk for having the condition but have not been recently tested and are on a regular diet. They are left to their own device to take the test.
Question 3: What sort of follow-up guidance do participants receive?
Answer from Dr. Leffler: We provide participants with detailed instructions on what to do after taking the test in terms of follow-up. They have the option of following-up with us at Beth Israel Deaconess or they can follow-up with their own primary care physician. We also let them know that even if they test negative, that having a family member with celiac disease puts them in a high-risk group for the condition and that if they have symptoms, they should consider further screening methods.
Question 4: What are the goals of the study?
Answer from Dr. Leffler: The main goal of the study is to show that this finger prick test kit is a technology that people are willing and capable of using on their own without oversight. Also, we’re looking to find and diagnose a new population of celiac disease amongst family members of those with the condition. It’s so hard for people to get tested even when they want to get tested that this provides a method for people to take control of it on their own.
Question 5: How are you getting people to participate and can others join in?
Answer from Dr. Leffler: So far we’ve worked on a local level in Boston in our clinic and with support groups, however anyone in the United States can participate. If anyone is interested in participating they can contact the Celiac Center at Beth Israel Deaconess Medical Center at: [email protected]
Understanding complications of celiac disease can be quite tricky and for any parent, the thought of passing on a disease with so many variables to a child can be devastating. To help answer our reader questions about complications associated with celiac disease and the likelihood of the disorder being passed on to kids, we've called on Dr. Aline Charabaty, a celiac expert and the Director of the Center for Inflammatory Bowel Diseases at Georgetown University Hospital in Washington DC.
Enjoy this wonderful insight and if you think of more questions, submit them anytime to [email protected]. All of the questions you see answered below were submitted by readers just like you!Question 1: Celiac is related to many other autoimmune conditions. Does celiac cause the other conditions or do the other conditions cause the celiac disease?
Answer from Dr. Charabaty: Ulcerative colitis and Crohn's disease are chronic inflammatory bowel diseases (IBD). Patients with IBD develop abdominal pain, diarrhea and blood in the stool. The diagnosis is typically made on colonoscopy with findings of inflammed ulcerated mucosa. I have seen in my practice several patients with both IBD and celiac disease. I have few patients who were diagnosed with both pathology concomitantly while being evaluated for gastrointestinal symptoms. On the other hand, I have seen patients whose IBD is well controlled with medical therapy, but who continue to experience abdominal pain and diarrhea; a portion of these patients had positive celiac serology and findings compatible with celiac disease on small bowel biopsies.In an article that was published in 2005, Yang et al. reported that the prevalence of ulcerative colitis and Crohn's disease was significantly higher among patients with celiac disease than in the general population (prevalence rate ratios of 3.6 and 8.5, respectively). In 5 out of 10 patients with both celiac disease and IBD, the diagnosis of celiac disease preceded that of IBD (by 7 months to 12 years).
Managing a successful gluten-free diet can be quite tricky, so this week we've called upon Shelley Case, a registered dietitian and gluten-free diet expert! Shelley is a leading international nutrition expert and is a member of the Medical Advisory Boards of the Celiac Disease Foundation and Gluten Intolerance Group in the United States and the Professional Advisory Board of the Canadian Celiac Association, so read carefully and you're sure to learn a lot!
Enjoy this wonderful insight and if you think of more questions, submit them anytime to [email protected]. All of the questions you see answered below were submitted by readers just like you!
Question 1: I have heard that whole grains are important in the diet. What are they and how can I incorporate more into my gluten-free diet?
Answer from Shelley: Eating a wide variety of foods, including whole grains is the key to a healthy diet. This is especially important for those on a gluten-free diet because many gluten-free products are made from refined flours and starches and are not usually enriched with vitamins and minerals. As a result these products are often lower in iron, B vitamins, fiber and protein.
A grain is “whole” when it is consumed in a form that includes the bran (outer layer and primary source of fiber), germ (the part that sprouts into a new plant), and endosperm (the bulk of the seed).Gluten-free whole grains include brown rice, black rice, red rice, corn (including cornmeal and popcorn), Montina™ (Indiana ricegrass), millet, oats (pure, uncontaminated), sorghum, teff, and wild rice - as well as the pseudo-grains of amaranth, buckwheat, and quinoa.People who regularly eat whole grains have a lower risk of obesity, lower cholesterol levels, and a reduced risk of heart disease, stroke, type 2 diabetes, and cancer. The USDA and the Whole Grains Council (see http://www.wholegrainscouncil.com/whole-grain-stamp) recommend 3 to 5 servings of whole grains per day. Look for the yellow Whole Grain Stamp: Eating three whole grain food products labeled “100% Whole Grain” – or six products bearing ANY Whole Grain Stamp meets the 3 to 5 servings per day requirement.
Celiac disease is linked to numerous other conditions. So many in fact that it's hard to keep them all straight! To better understand the connection between celiac and other conditions, we've called upon celiac expert and author Ron Hoggan. Ron is such a fabulous expert that we've split his interview up into two parts, so check back next week to see even more wonderful advice.
Enjoy this wonderful insight and if you think of more questions, submit them anytime to [email protected]. All of the questions you see answered below were submitted by readers just like you!Question 1. Celiac disease is connected to many other conditions. Can you tell us how many it's linked to and what some of the most common diseases are?
Answer from Ron: Contemporary medical research has linked celiac disease to more than 200 other conditions and that number continues to rise. Each year, medical and scientific research uncovers new connections with ailments not previously recognized in association with celiac disease. Broadly speaking, these conditions include those arising out of nutrient deficiencies, various forms of autoimmunity, and a number of other conditions that are not so easily categorized.
There is little debate about the causal connection between celiac disease and illnesses arising out of the many associated nutrient deficiencies. Mineral deficiencies are very common in untreated celiac disease and they usually resolve quite quickly after beginning a gluten free diet. Yet such conditions are often misunderstood. For instance, I know one person who was receiving iron injections for several years before she moved to a different city. Her new doctor did some more testing which led to her diagnosis of pernicious anemia, a condition caused by vitamin B12 deficiency. This should have suggested testing for celiac disease, yet the question was never raised by her new physician. In this case, vitamin B12 supplements were prescribed and the patient was sent on her way.
Similarly, women who deliver children with spina bifida should also be tested for celiac disease, as spina bifida is associated with inadequate maternal folate which is another B vitamin. Although the connection between folate deficiency and spina bifida has long been recognized, and folate supplementation is a standard prenatal recommendation, the mothers of such infants are rarely investigated for celiac disease. Both pernicious anemia and spina bifida are potentially catastrophic illnesses that impose enormous individual, familial, and social costs. Yet these are only two of many such vitamin deficiency illnesses that can arise in the context of undiagnosed or untreated celiac disease and these conditions are only rarely investigated for celiac disease.Similarly, one type of heart disease, pericarditis, is sometimes seen in connection with celiac disease. Such patients often recover fully on a gluten free diet combined with steroid medications. In some cases only the diet is needed.
It seems as though there are an infinite number of resources out there about celiac disease, but how do you really know what to trust? How do you interpret all of the new research being published everyday? To help answer these tough questions, we've called on Janet Dalziel, the President of the Canadian Celiac Association and she's given us some top-notch advice for sifting through the barrels of information on the web, as well as insight about some of the latest research.
Enjoy this wonderful advice and if you think of more questions, submit them anytime to [email protected]. All of the questions you see answered below were submitted by readers just like you!Question 1. There are so many online resources for celiac disease on the Internet. How do I know which are the most trusted sources of information?
Answer from Janet: That is an excellent question because there is a lot on the internet that is opinion and not fact. I would recommend, for medical information, sites that are clearly affiliated with respected organizations such as universities, hospitals, government agencies, celiac centers or national patient support groups which have professional medical advisory boards to back up their statements. I would be careful about any .com sites, not because they are always suspect or because they are profit-making, but because I need to know who backs up the information they provide. I think one has to be less picky about online resources for recipes, restaurant and travel recommendations as these are obviously not based on science but personal appeal. But beware of those forums where people seek advice from others. I have seen quite a few instances where someone asks a sincere question about diagnosis or diet which is then answered incorrectly by well-meaning but ill-informed participants.
Question 2. I was diagnosed with celiac disease last month. I had never heard of it before and now it seems like everywhere I go someone knows someone else with celiac. Is it a new disease or something we're just learning about?
Answer from Janet: Actually, it’s an ancient disease, known to the Greeks and Romans, though they did not know what caused it. It seems as if it’s everywhere now because diagnosis of celiac disease is starting to improve. That’s because of the blood tests that came out in the 90s and because those of us who averaged 11 years or so to finally get diagnosed are trying really hard to get the word out. We do not want others to suffer unnecessarily or die prematurely from one of the many serious associated conditions. While it may seem that it’s the latest fad disease, remember that somewhere around 90% of the people who have it remain undiagnosed. You can expect to continue to hear more about it as we ramp up our efforts to raise awareness.Questions 3. There has been a lot of chatter on listservs recently about breast feeding helping prevent development of celiac disease. Is this true? Where can we learn more?
Answer from Janet: I learned at the 13th International Symposium on Celiac Disease held in Amsterdam in 2009 that this is one of the burning questions the researchers would love to be able to answer. The truth is that nobody knows for sure but the guideline for infant feeding that they agreed on was to introduce very small amounts of gluten into the diet of infants between the ages of 4 to 6 months while still breastfeeding. However, they were not able to define what was a very small amount and they were not able to say whether this would actually prevent celiac disease or merely delay it in genetically predisposed children. So, there is no definitive answer doctors can give to this question at this time, which is not a comforting thought for many parents. And research in this area is not easy to design, since nobody would allow experiments that might harm babies. We are hoping that longitudinal studies on the children born in Sweden in the time when infant feeding guidelines inadvertently produced a mini-epidemic of celiac disease in that country will provide some answers, eventually.Question 4. Can you explain enriching gluten-free foods in Canada? What does it mean? Is it safe? What is actually done to the food?
Answer from Janet: Enriching foods in Canada is not new and it is safe. Table salt is iodized, milk has vitamin D added and wheat is enriched with folic acid, a very important supplement. Foods are enriched, meaning that vitamins or minerals are added, in an effort to prevent illness and poor health that may arise from inadequate diets. When I was a child, we had to take cod liver oil during the winter. This was our parents’ way of enriching our diet with the vitamin D we couldn’t get from sunshine for a few months; it tasted awful. The issue with gluten-free foods is that they are mostly not enriched, so that celiacs do not get the same nutritional value from their breads or pastas or pizzas and need to pay more attention than non celiacs to vitamin and mineral supplements in order to play catch-up. That being said, celiacs might want to support those manufacturers of gluten-free foods who have moved to enrich their products. That information appears on the label.Question 5. What types of resources does the Canadian Celiac Association offer patients? How can patients help support the organization?
Answer from Janet: The CCA offers support in the form of education for patients and health care workers on diagnosis, symptoms and treatments. As you know, the gluten-free diet is complicated and expensive. Did you know there are other treatments being investigated? Our 28 chapters and their satellite groups offer peer counseling to individuals and groups, local meetings to share strategies, listen to invited experts and provide a social outlet, and newsletters that highlight local resources such as restaurants and shops as well as recipes and other articles of interest. We are truly a community of celiacs helping other celiacs.
We work with government agencies to improve food labels, wait times for testing and assurances that our food is safe. We support research into celiac disease in Canada through our annual awards and also in partnership with others. We work with food manufacturers to improve the availability and variety of gluten-free foods in the market. Our major focus for the next year is increasing awareness of celiac disease with our doctors. We are the best source of accurate information on developments in the celiac world in Canada. Our Professional Advisory Board of expert doctors and dietitians, all volunteers too, make sure that no incorrect information gets out there from us.
Patients, and families and friends of patients, can support the CCA by joining as members and/or donating to us at www.celiac.ca. We are a nationally registered charity that is run on a shoestring by volunteers with a very small staff. Some patients join when they are diagnosed, learn what they need to know and then drop out. That doesn’t help us when we are advocating with government groups or talking to major food manufacturers or answering questions from the media. They always want to know how many of us there are, so I would say, please join and then stay a member. Size matters. We are the only national voice for celiacs in Canada, which means we need the support of everyone out there concerned about celiac disease.
You sent us your questions and our experts are here to answer them all! For our first session of the Biocard Celiac Home Test Celiac Disease Expert Series, we've called on Sherry Torkos, a pharmacist and author of The Canadian Encyclopedia of Natural Medicine to answer your questions all of your questions about nutritional supplements and value-added gluten-free diets.
Enjoy this wonderful insight and if you think of more questions, submit them anytime to [email protected] All of the questions you see answered below were submitted by readers just like you!
Reader Question #1: I was just diagnosed with celiac disease and there is
a lot of chatter about taking nutritional supplements. How do I know what I
should be taking to help my body recover?
Answer from Sherry: Nutritional supplements can play an important role in optimizing health and helping to correct nutritional deficiencies caused by celiac disease. Prior to diagnosis and the implementation of a strict gluten-free diet, those with celiac disease experience intestinal damage that can range from mild to severe. Since nutrient absorption occurs through the intestine, those with celiac can suffer with malnutrition and deficiency of various nutrients including the B-vitamins (such as B12 and folic acid), vitamins D and E, essential fatty acids, calcium and magnesium. Some signs of nutrient deficiency include anemia, skin rash, fatigue, poor cognitive function, and stunted growth of hair and nails. Additionally, the gluten-free diet, while healthy, can be lacking in certain nutrients, such as fiber and B vitamins.
I would suggest taking a quality multivitamin and mineral supplement and omega-3 fatty acids. If you have been diagnosed with iron-deficiency anemia then likely your doctor will have recommended an iron supplement. To boost fiber intake, eat lots of fruits and vegetables, gluten-free whole grains (amaranth, brown rice, rice bran, buckwheat, quinoa, and teft) and nuts and seeds (like chia seed, flaxseed and hemp seed).
Reader Question #2: Is the treatment for celiac different for a child or an adult? Do kids need different types of added nutrition in their diets?
Answer from Sherry: The treatment for celiac disease is the same for adults and children – strict dietary avoidance of gluten. It is more challenging to implement and maintain a gluten-free diet in children. Many children are picky eaters and may not be willing to try new foods. They typically want to eat what their friends are eating plus they are more likely to “cheat” on the diet, not appreciating the potential consequences. Children need adequate amounts of protein, carbohydrates and fats along with vitamins and minerals for proper growth and development. It is best to meet with a dietitian or nutritionist to get specific recommendations to help your child meet his/her needs with the gluten-free diet.
Reader Question # 3: Probiotics seem to be on every list of things people with celiac should take. What are they and how will they help me?
Answer from Sherry: Probiotics are also known as friendly or beneficial bacteria that are normally present in the mouth, digestive and urinary tracts, and vaginal area. Probiotics provide many health benefits: They protect against infection from harmful bacteria (yeast and bacteria); aid in detoxification; produce B vitamins; aid digestion; and support immune function. They can improve bowel function and aid both constipation and diarrhea. Those with celiac disease may be deficient in probiotics because of intestinal damage caused by the disease.
Probiotics are present in some fermented dairy foods (live culture yogurt), although the potency and stability in yogurt is questionable. Look for a quality probiotic supplement at your health food store or pharmacy, such as Kyo-Dophilus by Wakunaga. This product contains human strain bacteria, it is tested to survive stomach acid and deliver the beneficial bacteria to the intestine, and it is stable at room temperature, so no refrigeration is required
Reader Question # 4: I'm super B-12 deficient. My doctor said it's from celiac disease and I have to give my gut time to heal. How can I boost my b-12 levels more quickly?
Answer from Sherry: Many people with undiagnosed or newly diagnosed celiac disease are deficient in vitamin B12 because of damage that affects the absorptive surface of the intestine. Vitamin B12 deficiency can also be caused by overgrowth of harmful bacteria in the intestinal tract or low stomach acid levels.
The best dietary sources of vitamin B12 are beef and chicken liver and clams. Smaller amounts are present in lamb, dark chicken meat, beef, tuna, salmon, eggs, milk, and cottage cheese. Absorption from the gut (through food or oral supplements) may be inadequate until your intestines heal, so in the meantime your doctor may prescribe vitamin B12 injections. That is the most efficient way to restore your vitamin B12 levels. The injections are typically done monthly at your doctor’s office. Once you have been on the gluten-free diet and your intestines have healed, look for a vitamin B12 supplement in sublingual form (a tablet that dissolves under the tongue), which is better and more efficiently absorbed into your blood stream, compared to regular tablets that are swallowed and then absorbed through the gut.