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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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    SHOULD THE ENTIRE FAMILY BE GLUTEN-FREE?


    Danna Korn

    This article originally appeared in the Spring 2004 edition of Celiac.com's Journal of Gluten-Sensitivity.


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    Celiac.com 04/05/2010 - In the 13 years I’ve been involved in the wonderful world of “gluten freedom,” one of the questions I’ve been asked most frequently is whether or not the entire family should be gluten-free.  For parents who have kids on the gluten-free diet, this seems to be a natural instinct––if Johnny can’t eat gluten, none of us will.  But I’m not sure that having the entire family go gluten-free is the best thing––unless, of course, it’s for health reasons (I, for example, choose a gluten-free diet because I believe it’s healthier).  This is one of those questions that has no correct or incorrect answer, so I’ll share with you, for what it’s worth, my personal perspective on the issue.

    Pros: It’s easier when the whole family is gluten-free, because you’re making only one version of every meal, as opposed to two or three.  There is less risk of contaminating safe foods because there aren’t any “unsafe” foods in the house.  Preparation is easier, and there’s no need for the gob drop or any other tricky food-preparation maneuvers.  Finally, from a psychological standpoint, you avoid having some people feel ostracized when their food is made separately and they’re eating different foods from the rest of the family.

    Cons: It’s more expensive and sometimes more labor-intensive for everyone to eat specialty foods (Try not to be a “saver.”  Sometimes, after spending $3 each for sugar ice cream cones, I’ll find myself guarding them like a hawk.  I’ve accumulated several boxes of untouched stale cones now).  Feeding the whole family home-made gluten-free bread at nearly five dollars per loaf, when three out of four family members could be eating a commercial brand, has an impact on the family’s time and finances.

    More important, especially if children are involved, forcing the entire family to be gluten-free because of one person’s dietary restrictions can put a strain on relationships.  Sometimes this works in both directions.  In my family, for instance, my daughter would resent being forced to be on a 100 percent gluten-free diet (we’re pretty close to that anyway) just because that’s how her brother Tyler eats.  Interestingly, though, it works the other way too.  Tyler doesn’t want his sister to be deprived of a bagel, nor does he resent her for being able to eat one (especially because the gluten-free bagels we buy over the Internet are so good these days!).  Resentment is almost inevitable at some level if family members are forced to give up their favorite foods for one member of the family––at least when kids are involved.

    The last reason against a gluten-free family is probably the most compelling one, and is the primary reason I haven’t forced my whole family to be gluten-free: it’s not reality.  Again, this is more important when a child in the family has the restricted diet, because the reality is that this world is filled with gluten, and most people on this planet eat it––lots of it.  These children need to learn how to handle the fact that for the rest of their lives, they’ll be surrounded by people eating gluten.  If that makes them feel bad, sad, or mad, that’s okay.  What better place to learn to deal with those unpleasant emotions than in the loving environment of their own home?  They may be more tempted to cheat because the food is in their home and others are eating it; again, there may be no better place to deal with temptation and learn to resist it than in the loving environment of their own home.

    The compromise: In no way am I advocating someone waving a Krispy Kreme donut in your face singing, “Nah-nee-nah-nee-nah-nee…you can’t eat this” in an effort to build character.  With the excellent gluten-free products available today, it’s easier than ever to compromise by eating relatively gluten-free.  Try to buy salad dressings, condiments, spices, and other foods and ingredients that are gluten-free when you can.  For foods like pasta, bread, and pizza, you can make two varieties, one of which of course is gluten-free and prepared carefully to avoid contamination.

    Cost aside, I don’t see any reason to bake “regular” cookies and baked goods anymore.  The gluten-free mixes are so incredible that my kids and their friends prefer them to “the real deal.”  They’re easy enough that the kids can make them themselves, and it’s a psychological upper for my gluten-free son when his sister and friends can’t get enough of “his kind” of cookies.

    You’ll probably find that because it’s easier to make one meal than two, you’ll gravitate toward gluten-free menus.  With good menu planning, and a kitchen well-stocked with gluten-free condiments and ingredients, it’s likely that your entire family will inadvertently become mostly gluten-free without realizing it, and without the resentment that might have developed if the issue had been forced.

    If your family does end up mostly gluten-free, or if you eliminate gluten completely, remember that anyone who is going to be tested for celiac disease (and all family members should be) must be eating gluten for at least several weeks prior to doing any tests for celiac disease.


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    Guest Gloria Brown

    Posted

    The primary reason for people living together with one who has celiac is to safeguard that individual's health. When gluten is permitted into shared living space, the celiac eventually experiences damage from trace gluten and in the end emotional ties become as irreversibly damaged as does the disease from contamination.

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    My daughter (who is 11) was diagnosed 3 years ago. We did not go gluten free as a family for all the reasons Dana lists above. She needed to get used to the fact that the world will not revolve around her diet, and get used to bringing something with her when we eat at a restaurant that doesn't have anything safe for her. I do bake almost everything gluten free, and we eat all of our pasta gluten free, but I also have bread, bagels, crackers, etc. mingling in our kitchen.

     

    You have to be careful, clean constantly, and wash your hands all the time, but it can done, and done successfully - all of her follow up trips to the specialist and her bloodwork confirm that she is doing wonderfully. It has taught her to rely on herself to learn how to read the ingredients for foods at school and camp. To me it was the best way to go to make her ready for the reality of socializing as a teen and an adult with friends who aren't on her diet.

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    It's just my husband and me right now, and when I had to go gluten-free, I told him I wouldn't be cooking two separate meals. Two years later, my cooking has improved ten-fold from when I ate gluten, and he is very happy. He does have have bread and tortillas to make lunches, and a few gluten-filled snacks. But he is very careful, and cleans up afterward. And of course, when we eat out, he eats whatever he chooses.

     

    However, I recently had a friend visit with her young daughter. She brought some Goldfish crackers as a snack. Watching this toddler eat, get crumbs everywhere, put her hands in her mouth and then touch everything, put the remote control in her mouth, etc. nearly gave me a heart attack. I felt I had to decontaminate my house when she left. I told my husband when we have kids, and they are that tiny, the house will be 100% gluten-free and he wholeheartedly agreed.

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    To tell you the truth, for the past 6 months, we as a family have all been almost gluten free in support of our young son. We feel this has helped him accept having celiac disease and needing to eat differently than some people, but he isn't weird because mommy and daddy eat like him too.

    And beside, who doesn't mind losing 10 pounds over the last two months. Yes, that is me. Good side benefit. A few more details of our discovery of our son's disease on our blog.

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    There are four of us in our family: two celiacs and two "gluten eaters." However, since I prepare the food and I am the one who has to wash my hands 1,000 times if I prepare glutenous foods and gluten-free foods, I mainly serve gluten-free food. (When I tried to have us eat that way, my hands were so red and chapped from washing them all the time!) To me, it's just not worth the risk of me getting sick. I can totally relate to the comment above about a toddler. I have a three year old, and she leaves crumbs EVERYWHERE. I would much rather know that those are gluten-free crumbs! Now, when I do hot dogs or hamburgers, I do have wheat rolls for my husband and daughter, but I have my husband serve them and then he washes my daughter's hands as soon as we're done eating. I like doing that for them every now and then...but I couldn't live with the tension of having to clean every single crumb up like that all the time.

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    Guest Andrea Kelly

    Posted

    My daughter (who is 11) was diagnosed 3 years ago. We did not go gluten free as a family for all the reasons Dana lists above. She needed to get used to the fact that the world will not revolve around her diet, and get used to bringing something with her when we eat at a restaurant that doesn't have anything safe for her. I do bake almost everything gluten free, and we eat all of our pasta gluten free, but I also have bread, bagels, crackers, etc. mingling in our kitchen.

     

    You have to be careful, clean constantly, and wash your hands all the time, but it can done, and done successfully - all of her follow up trips to the specialist and her bloodwork confirm that she is doing wonderfully. It has taught her to rely on herself to learn how to read the ingredients for foods at school and camp. To me it was the best way to go to make her ready for the reality of socializing as a teen and an adult with friends who aren't on her diet.

    My 8 year old daughter was diagnosed 6 months ago. We did not go completely gluten-free in the household but we are very careful with her and separate utensils and pans etc. She just got results from her follow up blood work and found that she is still getting gluten in her diet. Although her levels came down significantly it is very discouraging that she is still somehow getting contaminated. Now I'm wondering if we do need to go gluten-free in the household.

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    Danna Korn

    This article appeared in the Spring 2005 edition of Celiac.coms Scott-Free Newsletter.
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    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com

    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