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    Do you have questions about celiac disease or the gluten-free diet?

  • Scott Adams
    Scott Adams
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    What is Celiac Disease and the Gluten-Free Diet?

      Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, to no symptoms at all, and everything in between.

    Caption: Image: CC—Ed Uthman

    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1.4% of the population (91.2 million people worldwide, and 3.9 million in the U.S.A.). 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:

    1. 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.
    2. 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.
    3. 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.
    4. 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.

    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. 

    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:

    Edited by Scott Adams


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    59 minutes ago, GayJean said:
    I'm trying to find a meal plan that is gluten-free, dairy free, sugar-free, soy free and egg free. Thank you.

    Keto? Would be a high fat, moderate protein low carb diet with no added sugars, starches, or sugary foods. Go look up stuff and recipes on Ketosummit, avoid anything with eggs, if it ask for cheese or milk substitute with dairy free versions. I can give you some dairy free, soy free, gluten free cheese brands that can work.

    It would be a mostly meat and veggie based whole foods diet. I would suggest sheet pan and crockpot batches of chicken, beef, pork, roast in bulk then deviding up with different veggie dishes and spices each day to mix it up.  Certain ingredients like spices and sauces would have to be sourced knowning brands. IE Stevia Sweet BBQ for BBQ, spicely organics or big axe spice company for spices, etc.

    Might find you will need to supplement some things like vitamin C, calcium, magnesium, etc if your not going to be getting it from foods.
     

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    Thank goodness for all the on going research. Majority of the population are still in the dark bout the symptoms of being a Celic or Gluten intolerance.

    Eating out is still a problem for me, I live in the UK and although I must admit a number of eateries are getting the message, cross contamination is still rife.

    The unfortunate thing is I am also allergic to rapeseed oil and aching joints, throwing up,  reflux, feeling of weakness, sweating as well as loose stools occur.  Sad thing is most of the gluten free products sold in UK contain rapeseed oil.

    once again thank goodness for on going research.

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    Just got started here. A lot of people needs to be informed about this disease so they would know their action plan. I hope everyone will be informed

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    On 2/4/2009 at 3:59 AM, Guest denise karr said:

    Thanks for the help. I still don't know all the names of hidden gluten.

    Modified food starch is one of the main culprits it contains wheat and also vegetable protein, make sure you can tolerate gluten-free oats not all of us can, I am a high sensitive celiac and um unable to tolerate any kind of oats even the gluten-free. Had celiac since 1989 and it's really "trial and error" keep track of what and where you eat and you will soon find food and restaurants you can go to without getting sick.

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    On 10/9/2018 at 12:14 AM, Africandawn said:

    Thank goodness for all the on going research. Majority of the population are still in the dark bout the symptoms of being a Celic or Gluten intolerance.

    Eating out is still a problem for me, I live in the UK and although I must admit a number of eateries are getting the message, cross contamination is still rife.

    The unfortunate thing is I am also allergic to rapeseed oil and aching joints, throwing up,  reflux, feeling of weakness, sweating as well as loose stools occur.  Sad thing is most of the gluten free products sold in UK contain rapeseed oil.

    once again thank goodness for on going research.

    Is this oil found in certain ethnic foods.  I use it here to cut back on the smoke cos you can heat it up to higher heat than other oils is this why you use it.  I don't recall seeing it in everyday general gluten-free foods

    I am from UK go home every year and to be honest I much prefer the gluten-free products there you have more choices cos Celiac is more prevalent in the UK 

    My doctor here gave me a powder for these same types of symptoms called "Questran" mix it with juice and drink before I eat and it handles your symptoms but not sure about rapeseed oil.  Lot of UK products contain canola and corn oil so look for products that contain these oils and not rapeseed.

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    On 7/19/2018 at 5:58 PM, Ennis_TX said:

    Keto? Would be a high fat, moderate protein low carb diet with no added sugars, starches, or sugary foods. Go look up stuff and recipes on Ketosummit, avoid anything with eggs, if it ask for cheese or milk substitute with dairy free versions. I can give you some dairy free, soy free, gluten free cheese brands that can work.

    It would be a mostly meat and veggie based whole foods diet. I would suggest sheet pan and crockpot batches of chicken, beef, pork, roast in bulk then deviding up with different veggie dishes and spices each day to mix it up.  Certain ingredients like spices and sauces would have to be sourced knowning brands. IE Stevia Sweet BBQ for BBQ, spicely organics or big axe spice company for spices, etc.

    Might find you will need to supplement some things like vitamin C, calcium, magnesium, etc if your not going to be getting it from foods.
     

    Just a suggestion there is a company called Primal Kitchen I get from Vitacost or Amazon but Amazon bit higher price wise, it's almost everything free and I wonder how their mayonnaise tastes as good as it does, also the chipotle lime mayo is fantastic made with avocado oil give it a try.

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    Having had this disease since 1989 I have run the gamut on products and their tastes, as of today the best bread, bagels, muffins, cakes, pizzas, I get from UDI a lot of fast food restaurants etc here use their hamburger buns so I can have burgers, also their hot dog buns.  Glutino has a bread called genius which is excellent.  I eat a lot,of Mexican items too enchiladas with corn tortillas and the red sauce is fine, tacos are okay, no fried rice has veggie protein, Thai food has quite a lot of gluten-free ingredients.  Watch for French fries in restaurants and fast food, a lot of the precut premade frozen fries are coated in beef broth to stop them from sticking together when deep frying and the broth has wheat in it, I learned hard way my grandson gave me some of his French fries from McDonalds a while,back and I got sick, I did research and McDonald's use this method also, and most of the preseasoned ff in restaurants they lightly toss in flour so when they fry them the seasoning stays on the ff.  Hope this info is useful.

    Edited by Joan H

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    1 hour ago, Joan H said:

    Modified food starch is one of the main culprits it contains wheat and also vegetable protein, make sure you can tolerate gluten-free oats not all of us can, I am a high sensitive celiac and um unable to tolerate any kind of oats even the gluten-free. Had celiac since 1989 and it's really "trial and error" keep track of what and where you eat and you will soon find food and restaurants you can go to without getting sick.

    Modified food starch is gluten-free and safe for celiacs.

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    30 minutes ago, Joan H said:

    Just a suggestion there is a company called Primal Kitchen I get from Vitacost or Amazon but Amazon bit higher price wise, it's almost everything free and I wonder how their mayonnaise tastes as good as it does, also the chipotle lime mayo is fantastic made with avocado oil give it a try.

    LOL Yeah they are the ONLY condiment I use, I also have a corn allergy, they are the only Paleo company that does not use corn starch, corn syrup or other things made from corn like citric acid or xantham gum. I wait til whole foods does the huge sale on them then stock like crazy. The mayo is great I use it for slaw sometimes, the ketchup and mustard are good to, I have to be careful with the dressings, the vinegar is apple cider but can cause delayed gastric emptying. I also use their collogen fuel powder.
     

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  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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