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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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    CUTANEOUS GLUTEN SENSITIVITY


    Dr. Rodney Ford M.D.


    • Journal of Gluten Sensitivity Winter 2016 Issue - Originally published January 5, 2016


    Celiac.com 03/15/2016 - "Creating health comes down to the food we eat and how we choose to live our lives." – Dr. Terry Wahls


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    Lots of people find it hard to believe that such a common food as wheat/gluten could possibly be implicated in causing skin diseases. They say something like this: "Everyone eats wheat, but not everyone gets skin troubles—so it can't be wheat!" This logic is flawed. I have written this book so that you can read all of the evidence about gluten-related skin disease in one place. "Cutaneous gluten sensitivity" is one of the new terms applied to the group of gluten-related skin diseases.

    Dermatitis HerpetiformisMax belongs to this leg in the photo. He is very itchy and sore. He is 18-years old and not getting any better—in fact he has been getting worse. He came to me seeking help. Mum wrote,
    "Max has been suffering from debilitating dermatitis over his whole body for the last 3 years. He is withdrawn, self-conscious, covered with sores, and feels he will never get better. Unfortunately, the creams he is putting on just seem to irritate him."

    So, I am investigating him for gluten-related eczema. It will be a relief for him if the tests come out positive for gluten. What should be the strategy to get him better?

    I don't want him to go through the rest of his life like Elizabeth Whitesell, from the Gluten Zero Facebook page, who explains:

    • "I was frantic with itching before my celiac diagnosis. The dermatologists never addressed the possibility of celiac, just gave me new treatments for my itching. I cannot name all of the creams, oils, pills and ointments I used, along with a blue-light treatment. Steroid shots, creams and pills were a major part of my treatment."
    • "I received some temporary relief and never traveled without my creams. Itching on my hands was so fierce that I carried a frozen ice block (the kind used in coolers) in my purse. When we were at a public event, I gripped my hands around the ice to ward off a noisy itching attack. Ice was my godsend to keep the itching from following its neurological path. All of my blouses had blood dot stains from clawing my upper arms like I was an ape when into full-time mode."
    • "My best treatment was freezing 2-liter bottles of water and holding them between my knees as I laid down to go to sleep. If I could fall asleep before the freaking stage began, I was on a roll. More frozen bottles were kept in a cooler by my bed for when the thaw came and I was too tired to walk downstairs to replace them."
    • "What a saint of a husband I had. Once I went gluten-free, so many changes came for the better. I did not suddenly notice the absence of itching but, one day, looked back and realized I was not traveling and sleeping with frozen bottles anymore. I hope dermatologists are more informed now."

    Skin Diseases Associated with Celiac Disease

    Gluten is known to cause skin disease. Gluten can definitely cause itchy skin. Collectively, these skin-diseases provoked/triggered/caused by gluten can be called "cutaneous gluten sensitivity". This is an umbrella term which includes:

    • Dermatitis Herpetiformis (DH);
    • Celiac associated skin diseases;
    • Non-celiac associated skin diseases.

    So what is the evidence?

    1) Dermatitis Herpetiformis: To summarise the previous chapter, the classic skin complaint is dermatitis herpetiformis. It usually affects the elbows, knees, buttocks, scalp, and back. It begins as little bumps that then change into little blisters. People say that they are driven mad by the itching. It is caused by an immune reaction to gluten in the skin. Microscopic clumps of immune-complexes get deposited just under the skin. This creates the very itchy rash. These tiny particles of immunoglobulins can take years to clear up once you start on a gluten-free diet. It is reported that it can take up to ten years before you make a full recovery.

    2) Celiac Associated Skin Diseases: Marzia Caproni and co-workers have detailed the skin diseases that have so far been associated with celiac disease (and perhaps by implication, with gluten).

    In their paper, "Celiac Disease and Dermatologic Manifestations: Many Skin Clues to Unfold Gluten-Sensitive Enteropathy" they include common skin complaints that most people do not associate with gluten-illness:

    • Dermatitis Herpetiformis
    • Psoriasis
    • Alopecia Areata
    • Chronic Urticaria
    • Hereditary Angioneurotic Edema
    • Cutaneous Vasculitis
    • Atopic Dermatitis Eczema
    • Vitiligo

    They also remind us that enamel defects, delayed eruption, recurrent aphthous ulcers, cheilitis, and atrophic glossitis are gluten-associate conditions and that "the diagnosis of celiac disease can sometimes be made from a smile!"

    Their important message is that anyone with any of these conditions should be investigated for celiac disease.

    3) Non-celiac Associated Skin Diseases
    The skin is a frequent target organ in gluten-sensitivity. The skin, hair and teeth can all be disturbed by gluten. However, eczema is a much more common manifestation of gluten-sensitivity.

    Humbert and his dermatology colleagues (Gluten intolerance and skin diseases, 2006) wrote this about gluten and skin disease:

    • "Gluten sensitivity, with or without celiac disease symptoms and intestinal pathology, has been suggested as a potentially treatable cause of various diseases. There have been numerous reports linking celiac disease with several skin conditions. Dermatitis herpetiformis is actually a skin manifestation of celiac disease. Autoimmune diseases, allergic diseases, psoriasis and miscellaneous diseases have also been described with gluten intolerance."
    • "Dermatologists should be familiar with the appraisal of gluten sensitive enteropathy and should be able to search for an underlying gluten intolerance. Serological screening by means of anti-gliadin, anti-endomysial and tissue-transglutaminase antibodies should be performed. Gluten intolerance gives rise to a variety of dermatological manifestations which may benefit from a gluten-free diet."

    This is an important statement.

    In 2010, Korossy reported a skin eruption that he called "gluten-sensitive dermatitis" which he says is clinically indistinguishable from dermatitis herpetiformis but lacks the IgA connection. (Non-dermatitis herpetiformis gluten-sensitive dermatitis: a personal account of an unrecognized entity, Korossy, 2010).

    Cutaneous Gluten Sensitivity

    Bonciolini et al (2015) have made a study of the skin manifestations of people with Non-Celiac Gluten Sensitivity (NCGS) Cutaneous Manifestations of Non-Celiac Gluten Sensitivity: Clinical Histological and Immuno-pathological Features, Bonciolini et al 2015

    They have adopted the term 'cutaneous gluten sensitivity'. They describe 17 consecutive patients affected by NCGS. They had excluded celiac disease and wheat allergy. They said:

    • "The skin lesions observed were similar both to eczema and psoriasis and did not show a specific histological pattern. Furthermore, no serological marker was useful to identify these patients. The only data common to most of these patients affected by NCGS associated to non-specific skin manifestations are:
    • the itching;
    • the presence of C3 at the dermoepidermal junction;
    • a rapid resolution of lesions when adopting the gluten free diet.

    Therefore, dermatologists must be familiar with the cutaneous manifestations and symptoms of gastrointestinal disorders. An appropriate understanding, work-up, consultation and management will help to identify the important cutaneous–gastrointestinal connection and ensuring that this important gastroenterological disease in patients with skin manifestations is not ignored.

    Finally, we suggest an accurate follow-up of all patients who report intense itching and gastrointestinal disorders, even when histology and morphology of the skin lesions do not identify a specific skin disease.
    We also suggest the adoption of gluten-free diet for at least three months assessing any positive effects."

    A Family Affected by Cutaneous Gluten Sensitivity

    • Katrina Ojakaar writes this about the severe skin problems in her family that were eventually shown to be related to gluten-harm:
    • "I had terrible eczema on my legs as a child. As an adult I had recurrent eczema on my eyelids and hands in addition to severe dry, itchy skin on my scalp, back, and legs. I also developed rosacea on my face that was treated unsuccessfully with antibiotics and topical ointments. At the age of 44, I had a lab test that showed gluten was making me sick. I immediately stopped eating food that contained gluten and within weeks watched my skin transform. I no longer have raw eczema patches or dry skin; and my rosacea has disappeared."
    • "My daughter, Lila, had horrific diaper rash as an infant and nothing seemed to heal her sore bottom. Even as she grew out of diapers, her bottom was always irritated. Lila's skin was also very dry and irritated. Lotions and even plain bath water caused a sting. But when Lila stopped eating gluten, her skin simply healed. She now has smooth, soft, and moist skin without irritation and enjoys a relaxing bath."
    • "My mother suffered from psoriasis on her legs and scalp until she stopped eating gluten at the age of 72. She is now 75, and the psoriasis has disappeared. Her skin is healthy, and she doesn't eat gluten, dairy, or oats."
    • My father had rosacea on his face and was diagnosed with the autoimmune disease called lichen planus about 12 years ago. He had raw, bleeding sores on his scalp. And his fingernails and toenails disintegrated where he was left with only tender skin. Three years ago my dad stopped eating gluten, and two months later, his fingernails started to grow back. He now has a thin narrow layer of nail at the age of 80. The lesions related to his lichen planus disease on his scalp are gone. And, my father's rosacea, like mine, also healed when he stopped eating gluten."

    Keratosis Pilaris

    Keratosis pilarisKeratosis pilaris, or sometimes called 'chicken skin' is blamed on gluten by many people. It is very common, occurring in about 10% of people, and there seems to be a hereditary nature to it. It tends to lessen with age, being prominent in toddlers. Any gluten connection remains speculative.

    Anne Luther writes:

    • "One of the many pleasant surprises I had when I stopped eating gluten was the disappearance of three different skin rashes. There were non-itchy bumps on my back and arms, non-itchy red bumps on the soles of my feet and a very itchy rash on my legs behind my knees. None of these were ever diagnosed by a doctor but they all disappeared after I had totally eliminated gluten from my life."

    Keratosis pilaris is skin condition characterized by rough patches of skin caused by small, acne-like bumps. It is found mostly on the upper arms, upper thighs, and cheeks. It can feel a bit like sandpaper or goose-flesh. These little bumps are usually white, but can be red. They do not hurt. Sometimes they can feel a bit itchy.

    Keratosis pilaris seems to be caused by a build-up of keratin, the protein that helps create the protective skin barrier. Once keratin has formed into a hard plug at the opening of the hair follicle, this can block the oil and sweat glands. Consequently, these substances cannot escape out onto the skin, and results in these patches of rough, bumpy skin.

    I see a lot of keratosis pilaris in my Clinic. The gluten connection not clear, but many parents report its disappearance on a gluten-free diet.
    What happened to Max?

    Remember Max's legs at the beginning of this Chapter? Well it turned out that Max had two copies of the HLA gene DQ2 which gives him a 1-in-7 chance of developing celiac disease. It also increases his likelihood of having gluten sensitivity. However his blood tests for gluten (AGA) and celiac disease (tTG) were negative. But he did have evidence of a wheat allergy from his EAST tests. His total IgE levels were extremely high as well (over 4000), showing his heightened allergic status.

    So he has now embarked on a trial of a gluten-free diet. Mum says, "I feel that we are starting to get to the bottom of it now." It will be another 6 months before we know his results of his gluten-free diet. It can take a long time to heal.

    This was an excerpt from Dr Rodney Ford's latest eBook: "Dermatitis Eczema: Gluten Wheat – Solving the Eczema Puzzle." Available at: http://www.GlutenEczema.com


    Image Caption: Photo: CC--Mysi Ann
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    Guest Frances L. Garcia, MD

    Posted

    WOW! I can certainly identify with Katrina. I had severe eczema as a child and into my adulthood. About 15 years ago I was diagnosed with Celiac disease and went on the diet. My eczema, keratosis pilaris, pityriasis alba, stomatitis and other skin manifestations all went away. Funny, I did not make the connection until as recently as 2 months ago when a friend made the connection.

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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)?
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    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.
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    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