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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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    Sarcoidosis is the disease; and sarcoid of the lungs is a location affected by the disease. According to a report by the U.S. Department of Health and Human Services Public Health Service National Institutes of Health: Sarcoidosis is a disease due to inflammation. It can appear in almost any body organ, but most often starts in the lungs or lymph nodes. As sarcoidosis progresses small lumps, or granulomas appear in the affected tissues. Symptoms are usually general. Weight loss, fatigue, night sweats, fever, or just an overall feeling of ill health. In some cases it shows up with the appearance of skin rashes. red bumps on the face, arms, shins, ect., and sometimes inflammation of the eyes.

    Further: Sarcoidosis was once considered a rare disease. It is now known to be a common chronic illness that appears all over the world. It is the most common of the fibrotic lung disorders, and occurs often enough in the United States for Congress to have declared a national Sarcoidosis Awareness Day in 1990. Sarcoidosis is currently (1993) thought to be associated with an abnormal immune response. Whether a foreign substance; a chemical, drug, virus, or some other substance is the trigger and how the immune disturbance is caused are not known. No one can predict how sarcoidosis will progress. In general, sarcoidosis appears briefly and heals naturally. However, 20 to 30% of sarcoidosis patients are left with some permanent lung damage. In 10 to 15% of the patients, sarcoidosis can become severe and chronic. When either the granulomas or fibrosis seriously affect the function of a vital organ; the lungs, heart, nervous system, liver, or kidneys, for example, sarcoidosis can be fatal.

    From Ron Hoggan:

    Sarcoidosis has repeatedly been associated with celiac disease. Some researchers seem to view it as a condition which results from untreated celiac disease, while others see it as coincident with celiac disease. Here are a couple of references you might want to look at:

    • Douglas, et. al. Sarcoidosis and Celiac Disease: An Association? Lancet, 1984; July 7:13-15
    • Karlish Celiac Disease and Diffuse Lung Disease Lancet, 1971; May 22: 1077

    A Medline search might reveal more information to you, and I would suggest that you satisfy yourself of the connection. In #1, it says, in part: These cases suggest there may be an association between celiac disease and sarcoidosis, but formal studies of small bowel function in sarcoidosis are needed to confirm this. It is important to recognize that these two conditions can occur together and that unexplained weight loss in a patient with sarcoidosis may be caused by celiac disease. You might consider suggesting that your friend get a full panel of blood tests for celiac disease, as it is usually a very treatable condition. And I have been pleasantly surprised by the resolution of other, apparently unrelated health problems, that have cleared up on the diet since I was diagnosed. I hope she is similarly surprised.

    • Reunala T, et al. [see Related Articles] Diseases associated with dermatitis herpetiformis. Br J Dermatol. 1997 Mar; 136(3): 315-318. PMID: 9115907; UI: 97247319.
    • Papadopoulos KI, et al. [see Related Articles] The occurrence of polyglandular autoimmune syndrome type III associated with celiac disease in patients with sarcoidosis. J Intern Med. 1994 Dec; 236(6): 661-663. PMID: 7989901; UI: 95081757.
    • Bianconcini G, et al. [see Related Articles] [Celiac disease (familial) associated with sarcoidosis. Clinical case and review of the literature]. Minerva Med. 1994 Oct; 85(10): 541-553. Review. Italian. PMID: 7800197; UI: 95098301.
    • Boruchowicz A, et al. [see Related Articles] [sarcoidosis and the digestive tract]. Gastroenterol Clin Biol. 1994; 18(12): 1119-1128. Review. French. No abstract available. PMID: 7750685; UI: 95269922.
    • Riccabona M, et al. [see Related Articles] Sonographic findings in celiac disease. J Pediatr Gastroenterol Nutr. 1993 Aug; 17(2): 198-200. PMID: 8229548; UI: 94046289.
    • Papadopoulos KI, et al. [see Related Articles] Polyglandular autoimmune syndrome type III associated with celiac disease and sarcoidosis. Postgrad Med J. 1993 Jan; 69(807): 72-75. PMID: 8446560; UI: 93189522.
    • Mainguet P, et al. [see Related Articles] [Celiac disease in adults: clinical aspects--role of endoscopy]. Acta Gastroenterol Belg. 1992 Mar; 55(2): 181-189. Review. French. PMID: 1632135; UI: 92336640.
    • Sorokin R, et al. [see Related Articles] Diarrhea presenting as a rare manifestation of sarcoid. Am J Gastroenterol. 1990 Sep; 85(9): 1197-1198. No abstract available. PMID: 2389733; UI: 90358167.
    • Rogers P, et al. [see Related Articles] Antibodies to Proteus in rheumatoid arthritis. Br J Rheumatol. 1988; 27 Suppl 2: 90-94. PMID: 3042079; UI: 88294497.
    • James DG, et al. [see Related Articles] Overlap syndromes with sarcoidosis. Postgrad Med J. 1985 Sep; 61(719): 769-771. Review. No abstract available. PMID: 3903708; UI: 86042375.
    • James DG, et al. [see Related Articles] Overlap syndromes with sarcoidosis. Sarcoidosis. 1985 Sep; 2(2): 116-121. PMID: 3843140; UI: 87177134.
    • Lowe G, et al. [see Related Articles] Sarcoidosis and celiac disease. Lancet. 1984 Sep 15; 2(8403): 637. No abstract available. PMID: 6147667; UI: 84294457.
    • [No authors listed] [see Related Articles] Sarcoidosis and celiac disease. Lancet. 1984 Aug 18; 2(8399): 408. No abstract available. PMID: 6147488; UI: 84294274.
    • Douglas JG, et al. [see Related Articles] Sarcoidosis and celiac disease: an association? Lancet. 1984 Jul 7; 2(8393): 13-15. PMID: 6145934; UI: 84244768.
    • Vilaseca J, et al. [see Related Articles] [Granulomatous hepatitis. Etiologic study of 107 cases]. Med Clin (Barc). 1979 Apr 10; 72(7): 272-275. Spanish. PMID: 459594; UI: 79220138.
    • Hurley TH, et al. [see Related Articles] Reaction to Kveim test material in sarcoidosis and other diseases. Lancet. 1975 Mar 1; 1(7905): 494-496. PMID: 46962; UI: 75117906.
    • Ewe K. [see Related Articles] [Calcium absorption in health and disease. II. Syndromes of imparied calcium absorption]. Klin Wochenschr. 1974 Jan 15; 52(2): 64-73. Review. German. No abstract available. PMID: 4361437; UI: 74122902.
    • Mornet P, et al. [see Related Articles] [A case of peripheral neuropathy during terminal ileitis. Crohns disease]? Sem Hop. 1973 Jun 26; 49(30): 2209-2218. French. No abstract available. PMID: 4147181; UI: 73252730.
    • Karlish AJ, et al. [see Related Articles] The Kveim test in Crohns disease, ulcerative colitis, and celiac disease. Lancet. 1972 Feb 19; 1(7747): 438-439. No abstract available. PMID: 4110670; UI: 72118038.
    • MacGregor GA. [see Related Articles] Inhibition of leucocyte migration in celiac disease. Lancet. 1971 Dec 25; 2(7739): 1431. No abstract available. PMID: 4107620; UI: 72042982.
    • Pagaltsos AS, et al. [see Related Articles] In vitro inhibition of leucocyte migration by sarcoid spleen suspension in celiac disease and dermatitis herpetiformis. Lancet. 1971 Nov 27; 2(7735): 1179-1181. No abstract available. PMID: 4107984; UI: 72052439.
    • Karlish AJ. [see Related Articles] Celiac disease and diffuse lung disease. Lancet. 1971 May 22; 1(7708): 1077. No abstract available. PMID: 4103011; UI: 71206245.
    • Dawson AM. [see Related Articles] Nutritional disturbances in Crohns disease. Proc R Soc Med. 1971 Feb; 64(2): 166-170. No abstract available. PMID: 5548941; UI: 71139887.
    • Hill LE. [see Related Articles] Hypogammaglobulinaemia in the United Kingdom. 3. Clinical features of hypogammaglobulinaemia. Med Res Counc Spec Rep Ser (Lond). 1971; 310: 9-34. No abstract available. PMID: 5573491; UI: 71183306.
    • Levinson JD, et al. [see Related Articles] Infiltrative diseases of the small bowel and malabsorption. Am J Dig Dis. 1970 Aug; 15(8): 741-766. Review. No abstract available. PMID: 4195473; UI: 70283039.
    • Sjaastad O. [see Related Articles] Urinary excretion of free and conjugated histamine in various gastrointestinal disorders. Acta Med Scand. 1969 Jun; 185(6): 495-499. No abstract available. PMID: 4185319; UI: 69281390.
    • Pirola RC, et al. [see Related Articles] Whipples disease. Med J Aust. 1967 Nov 25; 2(22): 985-988. No abstract available. PMID: 4170086; UI: 68128282.
    • Smith BD. [see Related Articles] Sarcoidosis with recurrent thrombophlebitis and idiopathic steatorrhoea. Proc R Soc Med. 1966 Jun; 59(6): 569-570. No abstract available. PMID: 5937945; UI: 66143622.


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    Recommended Comments

    Guest Kim L. Bagwell


    Very informative, I have Asthma and now this disease! I have heard of celiac disease and will further research the on the Web!!

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    Guest Trina Guyton


    I have learned more than I knew of the disease. I just need to know more.

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    Guest Rebecca


    Was diagnosed with sarcoidosis in 1994 and celiac just this year. Developed severe allergy to all corn products in 1999. Some studies suggest that the underlying mechanism -- whatever is causing the inflammatory reaction -- is the same. This definitely seems to be what happens for me. Therefore, the way most practitioners need to separate out the diagnoses is of limited value. Most folks with inflammatory conditions like this for long have a list of what are considered different diseases technically (arthritis, acne, sarcoid, asthma, other allergies, celiac, etc.) all caused by the inflammation. So far going gluten and caffeine free is one of the only things I've done that's addressed multiple symptoms at once. Hope this helps.


    Rebecca Self, Ph.D.

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    Guest Anika


    I just found out that I have sarcoidosis, and I have been dealing with internal inflammation, asthma, high blood pressure and a facial rash for years. I also suspect that all these problems are linked to a gluten intolerance or celiac disease.

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    I have had celiac for a number of years was just recently tested (bone marrow) and having follow up now for sarcoidosis, which was detected by a chest xray.

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    Guest Sharon


    I have had celiac for a number of years was just recently tested (bone marrow) and having follow up now for sarcoidosis, which was detected by a chest xray.

    There are many false positive tests associated with sarcoidosis. It is best to get your eyes, heart and other major organs tested so that no further damage occurs, including your brain. The symptoms for sarcoidosis come and go, and will depend on your personal diet and how it effects your body. Celiac and sarcoidosis disease are closely related and have the same symptoms. With just one x-ray, it may be impossible to claim the findings to sarcoidosis, and other test could help detect it's presents. Depending where it is located, a biopsy would be in your favor.

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    Guest Jerome Yahna


    I was diagnosed with Sarcoidosis in 1980. I am now nearing my 79th birthday in Feb 2015. In October of this year (2014) I have recently been diagnosed with celiac Disease. It seems I hold the record for being the oldest person ever first diagnosed with celiac disease at Swedish Medical Center in Seattle. Whoopie!!!

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    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.
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    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.
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    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? 
    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.
    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.

    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.

    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.
    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.

    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