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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    SIDE EFFECTS OF A GLUTEN-FREE DIET AND HOW TO MANAGE THEM


    Tina Turbin

    If you’ve been diagnosed with celiac disease, you probably know all about the painful and often uncomfortable physical and mental symptoms and are fortunate to be rid of them with a gluten-free diet. However, avoiding gluten doesn’t mean that your health and well-being are guaranteed, but fortunately you have taken a major step in preventing serious and potentially fatal complications of long-term, untreated celiac disease. There are a few side effects, you could say, associated with a gluten-free diet, but thankfully there are solutions to manage them as you adjust to your new lifestyle.


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    First, it’s not uncommon to gain weight when you cut gluten out of your diet. Many celiac patients are thin and sickly-looking before their celiac diagnosis, as the damage caused to small intestine prevents the absorption of food. After being on a gluten-free diet for some time, when the intestines have begun to heal, the nutrients and calories in foods get absorbed better. Even though you may not be consuming any more calories now than in your gluten-eating days, it's likely that you're going to gain some weight. In fact, studies have shown an increased risk for obesity for gluten-free dieters. However, some people actually lose weight, as the changes to your diet may cause a decrease in caloric intake. Watching your caloric intake and regular exercise can help deal with any weight gain you may experience.

    Patients who are newly diagnosed with celiac disease often find that they have nutritional deficiencies, and what’s worse, gluten-free products are often low in B vitamins, calcium, vitamin D, iron, zinc, magnesium, and fiber and aren’t fortified in these nutrients. When Swedish researchers studied adult celiac patients who had been gluten-free for ten years, they found that half of them had vitamin deficiencies, including low levels of vitamin B-6 or folate, or both, and high levels of homocysteine, a risk factor for heart attacks, vascular disease, and strokes. Before the study, all the patients had biopsies to prove their intestines were in healthy condition, so these vitamin deficiencies could not be explained by malabsorption. Italian researchers have found similar deficiencies in gluten-free adolescents. I recommend that at your annual check-up, you should ask your doctor whether your vitamin status needs to be measured and whether you should be taking folic acid and vitamin supplements.

    Another thing to watch out for is increased cholesterol levels. For the first part of my life, when I was eating gluten-containing foods, doctors were amazed by my low cholesterol levels. The reason for this was that my intestines weren’t absorbing the cholesterol in my food. Now I need to pay attention to my cholesterol levels just like other people. This means checking food nutrition labels for not only gluten but also fat and cholesterol content, selecting low-fat, low- low-cholesterol foods. Watch out for packaged gluten-free products, which often have more fat than the gluten-containing foods they substitute, especially gluten-free cookies, crackers, and cakes. The American Heart Association recommends eating high-fiber foods to help lower cholesterol.

    Other side effects of a gluten-free diet include constipation, gassiness, and diarrhea. When you replace the bread and pasta in your diet with only processed white rice, you reduce the fiber in your diet, which may cause constipation. On the other hand, adding foods rich in fiber, such as quinoa, in large amounts and too quickly, can cause gassiness and diarrhea.

     I was diagnosed with celiac disease many years ago, and since then I have adopted a healthy, gluten-free lifestyle. This was initially quite a challenge, but now I’m reaping the benefits of this new way of life. As a celiac advocate I stay connected to the celiac community and keep abreast of the latest research. This is the first and fundamental step I recommend to celiac patients as they adjust to and manage their gluten-free diet—stay informed.


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    Guest fiona

    Posted

    Another thing to watch out for as your intestines heal - improved absorption of medications! You may find you are able to/need to reduce your pre-celiac diet dosage (after discussing with your doctor).

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    Guest Tina Turbin

    Posted

    Another thing to watch out for as your intestines heal - improved absorption of medications! You may find you are able to/need to reduce your pre-celiac diet dosage (after discussing with your doctor).

    This is absolutely correct and a very good point. You can also receive tests to determine your increased or lack of absorption of minerals and vitamins as you attempt the healing process as mentioned. Thank you for this input and a very important point.

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    Gluten free dieting has been a life long struggle for me. I find there is no quick and easy solution to this. I have tried many different things and diet and exercise seem to work the best. Although, I have found a few supplements and programs that seem to work better than others or at least aid in this never ending endeavor, it is a lifestyle more than anything.

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    Guest katzjacobs

    Posted

    I have a very weak stomach and cannot in fact stand taking in gluten. Thankfully there are now gluten free products (though they are very expensive, but compromising one's health is never an option for me), now I need to reorganized my life and you are right Tina when you said that one needs to do checking for cholesterol level and fat content products. I just wish I am still young again.

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    Guest Zach

    Posted

    Celiac disease has been very tough for me. I am only 15 years old and love the cakes and cookies, but i can't really have any of those sweets unless they are gluten-free. But i have noticed that I am living a healthier lifestyle. Sadly, I am still rather short and skinny, and so far this gluten-free diet hasnt helped me grow.

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    I am 23 and just found out I have celiac disease. I am only on the gluten-free diet one week now and my symptoms have worsened. Stomach cramps are crippling and I have constant diarrhea and have lost even more weight and I amstill drained! i was wondering are these symptoms normal? Is it because my body is detoxing? I have been strict with the diet so I'm confused as to how I'm feeling this poorly! Any help/advice would be much appreciated.

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    Guest Sarah

    Posted

    I am 23 and just found out I have celiac disease. I am only on the gluten-free diet one week now and my symptoms have worsened. Stomach cramps are crippling and I have constant diarrhea and have lost even more weight and I amstill drained! i was wondering are these symptoms normal? Is it because my body is detoxing? I have been strict with the diet so I'm confused as to how I'm feeling this poorly! Any help/advice would be much appreciated.

    Yeah. I had the same thing. It's normal and it sucks. You MUST take dairy out of your diet until your intestines are healed, or you will feel even worse and you may not be able to tolerate milk. Plus taking it out of your diet may cause you to heal faster. Make sure to get a strong DAIRY-FREE probiotic. I recommend the Cocobiotic drink if you are not allergic to coconut. Whole foods also carries many non-dairy probiotics such as coconut kefir and almond yogurt. Lemon water and ginger is also a godsend for the gut. Also try to avoid foods high in acid such as tomatoes, fried food, chocolate, and tofu till you feel much better.

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    In response to Denise, feeling worse one week after giving it up is normal. Your body is going through withdrawal. Gluten or anything you are allergic to acts as if it is a drug. Your body adapts and becomes dependent on it, so when you take it out of your system initially many feel worse. This is what my doctor explained to me, so I was prepared when I went through withdrawal effects.

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    So glad I found this article. Like Denise said, I'm on day 4 of my diet change and I feel my symptoms are worse now then when I had the gluten. Hoping week 2 I feel better. Also, I've been a bigger girl for some years now so I was hoping I would lose weight with the change. Sad to hear most gain.

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    Guest Denise too

    Posted

    Unfortunately, my doctor has advised me that the "withdrawal" symptoms can go on for months. So, be sure to check in with your doctor if you feel these symptoms have gone on for too long, but your body can talk much longer than a couple of weeks to adjust.

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    I went to ER a couple weeks ago with overwhelming stomach pains, like starting in between my rib cage and just rolling on down. I woke up with urgent diarrhea running to the bathroom several mornings in a row. I tried antacids, Advil, Pepto, nothing worked. So to make a long story short, I thought it was my gallbladder. They did a sonic, nothing there. Gave me an IV for slight dehydration, some medications to settle stomach and sent me home with meds. The doctor asked for very little history, even after I told him my brother has celiac. I am just grateful to find sites like this. Many people say I need allergy testing but I really do not have a lot of faith in 'modern medicine'. I know my body better than anyone. I decided to try the gluten-free diet on my own and the first week I felt AMAZING. I did not feel 'heavy', mind was more clear. The second week I splurged for just ONE day. One cup of coffee, one piece of bread and one small piece of sausage(it was gluten free). I was in same pain again for two days and could not get it under control without meds AND Pepto. Lesson learned!

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    admin
    This article originally appeared in the Summer 2002 edition of Celiac.coms Scott-Free newsletter.
    Celiac.com 03/29/2006 - I recently reviewed the results of a Celiac.com survey, and was surprised to learn that 37 percent of 472 respondents do not believe that there will ever be a cure for celiac disease, while 32 percent think there will be, and 31 percent are unsure. After reading the question again I realized that it might be loaded—does the gluten-free diet count as a cure? Some people think so. Others think that the diet is a curse, or at best just a treatment. With the vast improvement that has taken place during the last few years in the quality of gluten-free foods I like to think of the diet as really good tasting cure. Of course the diet isnt really a cure, but the proof is in the pudding, and the diet has allowed my body to become healthy again and make me feel as though I am cured, and that is what counts—isnt it?
    Like most people, however, I still hold out hope that all the celiac disease research that will be done in the future will yield a cure—one that does not include a special diet. But be careful what you wish for because if you are like me your diet is probably healthier now than it ever was, mostly due to the necessary avoidance of most fast and processed foods. Perhaps the diet is really a blessing in disguise for many of us, and we will actually live longer and healthier lives due to it, in spite of having a "disease." But at the rate they are currently spending money on celiac disease research there will never be a cure—you say? After reading Laura Yicks summary of this years Digestive Disease Week International Conference in San Francisco (pg. 8), which includes a proclamation made by Dr. Alessio Fasano that celiac disease is "by far the most frequent genetic disease of human kind," I have renewed confidence that there will be a lot more money spent on research in the future, and eventually a cure will be found.
    More surprises in the survey results came when 6.5 percent of respondents said spelt was safe for a gluten-free diet, while 32.3 percent were unsure. I like to interpret this result as 38.8 percent of respondents were just diagnosed and are on their first visit to Celiac.com—but this is wishful thinking. Unfortunately this result means that we have more work to do (spelt is not safe!). The most surprising response, however, was how many people cheat on their diets—a full 43 percent! Some 13 percent actually cheat 20-40 times per year or more. The main excuses for cheating: 1) People missed a particular item too much to go without it; and 2) Gluten-free foods are not always available or are too expensive. These were the same folks who got the spelt question wrong—the ones who were just diagnosed, right? We have more work to do...
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    Paul Smith
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    Jefferson Adams
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    http://www.prlog.org/11268541-gluten-free-foods-and-beverages-become-mainstream-sensations-as-part-of-healthy-lifestyle-choice.html http://www.theglobeandmail.com/life/food-and-wine/gluten-free-has-gone-mainstream-but-how-long-will-that-last/article1890365/

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    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com