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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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    GOING GLUTEN-FREE IN CUBA


    Yvonne Vissing Ph.D.


    • Journal of Gluten Sensitivity Winter 2018 Issue


    Celiac.com 01/05/2018 - Cuba is abundant with music, color, and people. The countryside is a lush, rich green where fields of sugar cane stretch as far as the eye can see. Streets of Havana are filled with hot pink, lemon yellow, candy-apple red, bright blue and green classic cars. Rural streets have horse drawn carts overflowing with harvested sugar cane and the men (almost always men) with machetes from cutting the crops. It is a country of contradictions, where pillars of ancient affluence intersect with rubble as people yack on cell-phones while throwing their fishing lines off the Malecon.


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    As a multiple-time tourist there, I'm overwhelmed with how friendly people are and how safe I feel, even though my ability to speak Spanish is, well, not-so-good. Given that wifi and internet connections are few and far between, my translation app doesn't work so I'm on my own when it comes to ordering food and figuring out if it's gluten-free or not. Between my Spanish being awful and the fact that menus may not be in English, much less contain a list of ingredients, asking the wait-staff if there are gluten-free menu options is a no-brainer. The communication and interpretation challenges meant that it made no sense for me to ask that question.

    So how does one go about being gluten-free in Cuba? Actually, it's not so hard once you keep in mind certain facts. One is to understand the traditional daily diet of most Cubans. Food staples include rice, beans, pork, beef, and sometimes chicken. These are all safe for people with Celiac disease. You're likely to find these foods at every meal in every home or restaurant. Cubans do not tend to use a lot of spices because they don't have them; processed foods are generally unavailable which makes food rather bland but on the other side, pretty safe because the chances of being exposed to gluten-filled flavor enhancers aren't around. Breads may be served but they, like the delicious-looking fried dough sold on the street in baskets or papers by local vendors, can be easily avoided. Pasta dishes are found in many restaurants, and the pasta is always wheat so forget asking if they have corn, rice of quinoa pasta. Eggs are pretty easy to find; cheese somewhat, but peanut-butter is not.

    For many people going gluten-free, vegetables are a life-saver. However, in Cuba this option is something we need to have a serious conversation about. Vegetables are hard to come by. Now, there is a big organic farm program in Cuba. Organopónicos, or organoponics, is a system of urban agriculture using organic gardens that originated in Cuba and is widely used there. The idea is for them to produce organic, highly nutritious vegetables in an efficient way that maximizes the use of natural resources, composting, and recycling. The farm I visited outside of Havana distributes 90% of all the produce to local residents; only 10% goes to hotels and commercial vendors. The organoponics movement is trying to lure Cubans away from their primary reliance on rice, beans and meats into eating more produce. There is a heavy health emphasis related to nutrition there – there are hospitals and health care providers, but they aren't plentiful and tend not to be the first line of health care. Food is a primary vehicle leading to better health. Sweets, salty foods and fats are not nearly as common there, due to the lack of imports of such items in this still largely socialistic country. Foods are simpler, and seem to be more “real”, if you get my drift. Since Cuba is an island, fresh fish is a good choice for meals. If you order a salad, expect them to be small and consisting primarily of lettuce (not iceberg!), thinly sliced cucumbers, and maybe a bit of grated cabbage. Don't go looking for tomatoes, broccoli, carrots, potatoes, Brussel sprouts, squashes or kale. Chances are low that you'll find them. It's more likely that when you find vegetables, they are present more as garnish.

    Fruits, on the other hand, can be easily purchased at corner open-air markets where farmers bring bananas, plantains, pineapple, mangos, papaya, and coconuts. They are beautiful and fresh, and can be served on plates as main foods, garnishes and certainly as juices.

    Food isn't why one goes to Cuba. Mojitos and rum may be (thank God they are gluten free!), cigars are a draw, and a tiny cup of their coffee will keep you rolling all day. People who have to go gluten-free have often gotten used to watching what they eat and having limited options, so in this regard traveling to Cuba is no different. In some ways it's a bit easier because of the lack of processed foods and fancy, hidden ingredients that make their way into both gourmet and convenience foods in the United States. Cuba is more of a what-you-see-is-what-you-get culinary world. Gourmet cuisine hasn't arrived there yet. Neither have fast food items that U.S. people have come to take for granted. It's not uncommon to overhear people at the airport planning what they're going to eat when they get back to the states.

    My advice for anyone going gluten free in Cuba is to pack some nuts, dried fruit, protein bars, and easy-to-keep-and-transport favorite gluten-free food options. Expect when you go out for breakfast to have fruit and eggs. Dinner will likely be a meat/chicken/fish that is simply prepared so it should not usually be a gluten issue. Rice and beans are usually cooked without much seasoning, so you're probably safe eating them. Definitely avoid anything that is deep fried, because chances are high that a bread was cooked in the oil. Plantains that are fried are probably safe because they are cooked in butter or oil in a skillet. Fresh fruits are abundant, just sometimes a bit complicated for tourists to manage when purchased on the street if they don't have knives or ways to cut and serve them in a non-messy fashion. Don't expect to see many veggies, and when you do, relish them. And of course the mantra for most tourists traveling there is – don't drink the water! There's plenty of bottled water, juices and beer around, so you should not get sick from either gluten or water if you're nominally careful. Remember why you're in Cuba – not for fine dining, but to see the culture, listen to music, and have fun.


    Image Caption: Image: CC--Pedro Szekely
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    Guest muriel

    Posted

    Mexico is also a great country to visit, as in Cuba, most items are gluten free, the tortillas are normally made with corn, you have to specifically ask for wheat ones, as my husband found out! We lived there for four years and did not have a problem until we went to another ex-pat's house for supper!

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    Guest Michael Mann

    Posted

    Perhaps. But even in the US there are gluten land-mines in these "safe" foods. There is pancake batter mixed into eggs (as a filler and to make them fluffier) and flour used to make grill marks on grilled meats and flour used as a binder in chicken products, or a thickener in all sorts of prepared sauces and broths. If any part of the meal uses a canned or bottled seasoning or dressing, it becomes suspect. And then there is simple gluten transfer, i.e. on a grill. You'd really have to make sure that however safe the food appeared to be, that it was not made with any "prepared" ingredients, that it was indeed prepared 100% on the spot with just the obvious ingredients. Like a simple grilled fish, with no bread crumbs or flour dustings. Language barriers can make that difficult, and cooks often are insulted if you are watching them. Are commodities like tinned chicken stock really that rare in Cuba? That you can be sure it has been home made and fresh?

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    Guest Scott Adams

    Posted

    Perhaps. But even in the US there are gluten land-mines in these "safe" foods. There is pancake batter mixed into eggs (as a filler and to make them fluffier) and flour used to make grill marks on grilled meats and flour used as a binder in chicken products, or a thickener in all sorts of prepared sauces and broths. If any part of the meal uses a canned or bottled seasoning or dressing, it becomes suspect. And then there is simple gluten transfer, i.e. on a grill. You'd really have to make sure that however safe the food appeared to be, that it was not made with any "prepared" ingredients, that it was indeed prepared 100% on the spot with just the obvious ingredients. Like a simple grilled fish, with no bread crumbs or flour dustings. Language barriers can make that difficult, and cooks often are insulted if you are watching them. Are commodities like tinned chicken stock really that rare in Cuba? That you can be sure it has been home made and fresh?

    When in doubt take a gluten-free language card with you that explains things in detail, and give it to the cook.

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    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