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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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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Found 76 results

  1. So my 7 month daughter is having issues with corn. I have Celiac and am nursing so she has never even been in contact with gluten. I read today during some research that corn can sometimes cause the same symptoms as gluten in a Celiac patient. If you have experienced with this please leave a comment with your symptoms. Diarrhea, upset stomach, rashes, vomiting? I want to see if there could be a possible correlation as I feel like my daughter is immunosuppressed but the allergist claims it is not an immune response to the corn. Anyone that has experience with their own children I would love to hear from you.
  2. 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
  3. I have been a celiac for almost 13 years now, over the years of doing the treatment I started to feel that I became more sensitive to other foods. It is really frustrating, I don't really know where to begin to finally heal myself :/ All the best,
  4. I am new to this forum - I also belong to the Microscopic Colitis Forum, which is an amazing wealth of information. My story, I am a 56 yr old female. In 2016 I had papillary thyroid cancer so my thyroid has been removed and I am on 137 mcg of levothyroxine. Ive been on anti depressant medications for probably 20 years. In 2016, because of extreme depression and anxiety I switched medications and was given the highest dose using Effexor at 300mg a day. In 2015 I had a colonoscopy and was told that I have lymphocytic colitis. My symptoms are chronic constipation not the usual text book diarrhea. Anyway, additional symptoms, which was debilitating for me was whenever I ate gluten, drank alcohol, etc my stomach would be distended so bad that I would look 4 months pregnant. It got so bad recently that I decided to have a lab test done to find out which foods I was sensitive to. Below is my lab report....not pretty. I've been on a strict or though I thought gluten free, dairy free, nut free diet by combining the Paleo and gluten free diets. I have also been suffering from swollen glands in my neck, head, face and ears, with hives. It has gotten so bad that I've been searching the internet for forums like yours. I am taking Benedryl at night and claritin in the morning, but sometimes I feel like these aren't working because I wake up and still have th hives and itching. I've also incorporated the Autoimmune Anti-inflammatory Diet, I'm still reacting. I am at my wits end. The only thing I've been eating since this lab report which has been 2 months is ground turkey and well cooked vegetables using olive oil or coconut oil, salt pepper and dried basil. Someone on the MC forum said that pre-packaged ground turkey organic is most likely injected with rosemary extract which is soy based, and of course I'm not supposed to have anything soy. I have A LOT to learn, but boy this is hard and frustrating. Any advice out there would be greatly appreciated. Thank you in advance:) EnteroLab www.enterolab.com Specialized Laboratory Analysis for Optimum Intestinal and Overall Health Kenneth D. Fine, M.D. Medical Director 13661 Jupiter Road, Suite 307 Dallas, Texas 75238 Laboratory Report Quantitative Microscopic Fecal Fat Score 930 Units (Normal Range is less than 300 Units) Fecal Anti-gliadin IgA 171 Units (Normal Range is less than 10 Units) Fecal Anti-casein (cow’s milk) IgA 27 Units (Normal Range is less than 10 Units) Fecal Anti-ovalbumin (chicken egg) IgA 15 Units (Normal Range is less than 10 Units) Fecal Anti-soy IgA 27 Units (Normal Range is less than 10 Units) Mean Value # Antigenic Foods 19 Units (Normal Range is less than 10 Units) Mean Value 11 Antigenic Foods 19 Units (Normal Range is less than 10 Units) While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows: Food to which there was no significant immunological reactivity: Food to which there was some immunological reactivity (1+): Food to which there was moderate immunological reactivity (2+): Food to which there was significant and/or the most immunological reactivity (3+): None Corn Rice Chicken Pork Beef Almond Cashew Walnut White potato Oat Tuna None Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows: Grains: Grain toward which you displayed the most immunologic reactivity: Oat Grain toward which you displayed intermediate immunologic reactivity: Corn Grain toward which you displayed the least immunologic reactivity: Rice Meats: Meat toward which you displayed the most immunologic reactivity: Tuna Meat toward which you were next most immunologically reactive: Chicken Meat toward which you displayed intermediate immunologic reactivity: Pork Meat toward which you displayed the least immunologic reactivity: Beef Nuts: Nut toward which you displayed the most immunologic reactivity: Almond Nut toward which you displayed intermediate immunologic reactivity: Cashew Nut toward which you displayed the least immunologic reactivity: Walnut Nightshades: You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible. In the realm of elimination diets for immunologic disorders, nightshades are usually eliminated as the entire food class (i.e., all four previously mentioned foods in this class). This is especially important to the clinical setting of arthritis. TEST INTERPRETATION(S) Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates that an abnormally high amount of dietary fat has passed undigested and/or unabsorbed into the stool. Malabsorption of dietary fat almost always is associated with malabsorption of all other nutrients as well (protein, carbohydrates, vitamins, etc.). When associated with gluten sensitivity, elevated fecal fat usually is due to gluten-induced small intestinal functional damage and subsequent malabsorption; this does not require there be villous atrophy present. However, deficient production of enzymes by the pancreas can also be associated with celiac disease or non-celiac gluten sensitivity with autoimmune attack on the pancreas, causing maldigestion and malabsorption of dietary fat and other nutrients. Some other causes of exocrine pancreatic insufficiency include chronic pancreatitis from any cause (alcoholism being the most common), pancreatic resection, pancreatic cancer, or common bile duct obstruction. Pancreatic insufficiency as the primary cause of fat malabsorption usually causes significant elevations of fecal fat values, usually into the moderate (600-1000 Units) or severe (>1000 Units) ranges. To distinguish between small intestinal malabsorption and pancreatic maldigestion, a fecal pancreatic elastase test is necessary, which is now available from our laboratory. Other possible causes of elevated fecal fat (steatorrhea) include - another inflammatory bowel disease (such as Crohn’s disease which can be associated with gluten sensitivity); deficiency in the production or secretion of bile salts; overgrowth of bacteria in the small intestine; diarrhea from any cause which can, in turn, cause dietary fat to rush through the intestine unabsorbed; consuming very large amounts of dietary fat; eating unabsorbable synthetic dietary fat substitutes; or taking “fat blockers;” and resection of the small intestine causing “short bowel syndrome” (if you have had an intestinal resection). Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist, because chronic fat malabsorption is associated with osteoporosis and other nutritional deficiency syndromes. Interpretation of Fecal Anti-gliadin IgA: The level of intestinal anti-gliadin IgA antibody was elevated, indicative of active dietary gluten sensitivity. For optimal health; resolution or improvement of gluten-induced syndromes (mainly falling into six categories abbreviated as NAAAGS – neuropsychiatric, autoimmune, asthma, abdominal, glandular deficiencies/hyperactivity or skin diseases); resolution of symptoms known to be associated with gluten sensitivity (such as abdominal symptoms - pain, cramping, bloating, gas, diarrhea and/or constipation, chronic headaches, chronic sinus congestion, depression, arthritis, chronic skin problems/rashes, fibromyalgia, and/or chronic fatigue); and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well. For additional information on result interpretation, as well as educational information on the subject of gluten sensitivity, please see the "FAQ Result Interpretation," "FAQ Gluten/Food Sensitivity," and "Research & Education" links on our EnteroLab.com website. Interpretation of Fecal Anti-casein (cow’s milk) IgA: Levels of fecal IgA antibody to food antigens greater than or equal to 10 Units are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. It is recommended that for any elevated fecal antibody level to a highly antigenic food such as milk, that it be removed from your diet. Interpretation of Fecal Anti-ovalbumin (chicken egg) IgA: Levels of fecal IgA antibody to food antigens greater than or equal to 10 Units are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. It is recommended that for any elevated fecal antibody level to a highly antigenic food such as egg, that it be removed from your diet. Interpretation of Fecal Anti-soy IgA: Levels of fecal IgA antibody to food antigens greater than or equal to 10 Units are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. It is recommended that for any elevated fecal antibody level to a highly antigenic food such as soy, that it be removed from your diet. Interpretation of Mean Value # Antigenic Foods: Not yet categorized Interpretation of Mean Value 11 Antigenic Foods: With respect to the mean value of the 11 foods tested, overall, there was only a modest amount of immunological reactivity detected to these antigenic foods in terms of fecal IgA production. Many foods besides gluten, milk, egg, and soy are antigenic in their own right; the main classes of which include other grains, meats, nuts, and nightshades (potatoes being the primary food eaten from this latter class). Minimizing exposure to antigenic foods is an important component of an anti-inflammatory lifestyle to optimize immune system health. This is especially important for those with chronic abdominal symptoms and/or chronic immune/autoimmune syndromes, or for those who want to prevent them. For immunologic food sensitivity testing, the actual numeric value (in Units) for any given food or for the overall average of a group of foods is important mainly for determining: 1) if the immune reaction is present or absent, and 2) the immune reaction in relative terms to different foods tested in a given individual at a given point in time. It is not a score, per se, to be interpreted as a measure of clinical or immunological severity for that individual or between individuals. This is because the amount of IgA antibody made by a given person is particular for the immune function of that person. Furthermore, sometimes a person can display what can be viewed as immunological and nutritional “exhaustion,” whereby a more significant and symptomatic immunologic food sensitivity is accompanied by a lower positive measured anti-food antibody value (rather than a higher positive). In such an instance, following clinical improvement and improved nutritional status (while the suspect antigenic foods are withdrawn), values can actually be higher for a time before finally falling into the negative range after several years. Thus, the overall average food sensitivity antibody value for this panel is an assessment of your overall humoral immunologic food reactivity, which can help determine if dietary elimination trials may help you. If the mean value is less than 10 Units, the humoral immune reactions can be considered clinically insignificant (negative); if greater than or equal to 10 Units, they can be considered clinically significant (positive). Rather than reporting the absolute value of a positive result for each individual food, since it cannot be considered as an assessment of severity, the results are reported in semi-quantitative terms between the foods tested (1+, 2+, or 3+). This provides you with the knowledge of which foods are stimulating the most immune response which, in turn, is indeed the most practically applied information to dietary elimination trials. Dietary Recommendation Based on Test Results to Individual Foods: This test panel was designed to guide your choices when building a new more healthful, less antigenic dietary plan. The results are delivered in such a way that you are not left with “nothing to eat,” but instead they should guide you in avoiding the foods to which the highest or most immunologic reaction was detected (and hence, are most stimulating to your immune system). We discourage dietary changes that involve removing too many foods at once. This can lead you to feel too hungry too often, especially if adequate healthful replacement foods are not readily available. Dietary elimination (beyond gluten-free, dairy-free, and soy-free) is best approached over a period of weeks to months and sometimes years, removing one or two additional foods at a time, rather than removing many foods at once. If you reacted to more than one of the grains, meats, or nuts, we recommend that you first eliminate from your diet the one food from that class you reacted to most strongly, while keeping in your diet the ones you reacted to less strongly. When you want to try and eliminate additional foods, do so in the order of the strength of reaction from highest, intermediate, to least. In the case of potato, you may want to eliminate it if you reacted positively to it. If you have an autoimmune or chronic inflammatory syndrome, or just want to pursue an optimally healthy diet and lifestyle, avoiding all grains, meats, and nightshades can optimize an anti-inflammatory diet (despite a negative result on food testing). As nuts and seeds are a very healthful source of vegetarian protein and heart-protective oils and minerals, rather than avoiding all nuts and seeds, you can render nuts and seeds less antigenic, more digestible, and more easily tolerated by choosing the few that you seem to best tolerate overall, soaking a one-day supply in a glass jar filled with clean water for 4-8 hours (or for ease, overnight), and pouring off the water and rinsing before eating. The resultant soaked nuts or seeds can be eaten as is (alone or with fresh or dried fruit), blended into nut butters (by adding some water), or added to “smoothies.”
  5. Dizziness

    Hi. I am 55 years old and have several allergies. I got yet another sinus infection in January, which went into bronchitis that I had to have a chest X-ray. They thought it was pneumonia. I could only eat toast and one day I ate 4 pieces. I was antibiotics and Symbicort and Albuterol plus prednisone. I thought I had too much bread and thought my lungs felt like glue. So I took myself off of Gluten, and finally got over bronchitis. I have asthma, low D levels and am allergic to casein in milk, eggs, blah blah blah. I stayed off of gluten 90-100% for 3 weeks. Last week I didn’t think anything about it and cook regular spaghetti. Boom! I got the exact same head, dizziness sick feeling I get when I’m dumb enough to drink a milkshake. Only I stayed dizzy for a while. So a couple days ago, again we had spaghetti and it happened again! Here’s the thing...I went to Olive Garden yesterday, ate gluten free pasta, and felt normal. Me without gluten, I feel light, my head is clear, I feel good. Better than I’ve felt in a long time. But I only started this on January 29th. So today, work had pasta catered and there was meatballs separate so I ate a few and 15 minutes later...guess what? Normally I’d go to the doctor but when I first mentioned gluten 3 years ago, I had a doctor blow me off.”Well don’t eat it then” shrugged her shoulders, and she’s not my doctor any more. My family on the other hand, “ mom would you get out of this phase? I hate gluten free.” Well, I’m afraid it’s not a phase. If gluten is going to do this, I’m done. I’m a nurse I know how the immune system works but this resembles food poisoning. If I hadn’t cut off gluten, could I keep going like I was? Wow.
  6. I have very slowly come to the conclusion that I have a problem with casein. This is despite being years into the gluten free life and having mostly avoided dairy for a long time. I say mostly because although I would never have had milk in a coffee or with cereal etc. I didn't worry too much if milk was listed in the ingredients of some gluten free processed treat or deny myself the odd milk chocolate if there was one handy. After all my reasoning would go, I deserve it for eschewing all the nice gluten things... I also hadn't given milk too much thought. I think I just thought I was probably lactose intolerant like my father. However although last time I had a fair amount of milk I got the lactose intolerance stomach signs I also got spots on my chest and back a couple of days later. I think, don't know, but think, my issues with dairy may extend to the casein protein rather than just the lactose. Well I've now had enough of my skin issues which I think are strongly linked to milk so I'm now on a new quest to try and remove dairy completely and finding it a little bit of a struggle. I hadn't realised how many of the nice gluten-free foods also contain milk. So I wondered how strict I have to be where casein is concerned. If you have an issue with it and avoid it, do you have to treat it in the same way you would gluten? Is a tiny amount in processed food enough for you to react? Should I get rid of any biscuits etc I have in which have milk listed as an ingredient? Does it matter if the ingredient is butter which I understand to have much lower casein content? What's the deal with casein?
  7. Wanted to thank you all here at the forum for your messages, in the course of past two years it has been of much help and encouragement for me to read it and to know that I'm not alone in what I have been going through. I'd like to share my story in case somebody would get any benefit from reading it and in case there is anybody who can suggest something... I got first problems in 2009 when my fingertips started cracking all the time - deep cracks, bleeding, painful, etc. a continuous vicious circle. I just lived with it, it was manageable. I saw a few doctors, they said it was dishydrosis and that was it. In 2012 or so I got first eczema on my right hand little finger that then went on to grow and spread steadily during the following years and ended up to cover my entire right hand palm and moved on to my left hand little finger. At the end of 2015 I experienced first major problems that forced me to go on a strict diet (I saw an article in the internet that explained such eczemas by candida overgrowth). I stayed on that candida diet for something like two months and got a complete relief from all symptoms. The symptoms were overall fatigue, skin peeling off on my forehead, further growth of eczema on my hand, terrible itch and pain becuse of the eczema (I remember dropping on the floor in tears because of the agonising pain), and the last drop was hair loss... That diet helped and I now knew that my problem could be managed. I started reading stuff online trying to figure the connection and what was actually wrong with me. I did some lab tests, I did not have candida, I actually did not have any problems, all lab tests came back clear. I spent 2016 staying on diet on and off, balancing between flareups. I gradually started getting bloating episodes that lasted up to a week with certain discomfort breathing, walking, etc. Through experiments I figured that certain products made me feel worse and made the eczema worse. First was gluten. Avoiding gluten really helped. I could eat gluten one-two times but after several times I had a full flare up (no noticeable stomach problems though), so I started cutting down on gluten. Then soya joined the blacklisted gluten. And then came the spring of 2017 that I will never forget. I am attaching three photos to show what my hand was like. I could hardly use my hand, it would swell, burn, itch, pain. I started getting spots of eczema all over the my hand, spreading on to my left hand and it got really out of control spreading too fast. I tried going to doctors again, tried taking their medicines, all to no avail. Returning to diet and finally cutting out lactose removed the agony within two weeks. So, here I am now - intolerant to gluten, soya, nuts, any forms of sugar (including fruits), lactose. On top of that I am vegetarian (well, now a forced vegan). The reason why I am writing here is although I am strict with gluten I still get some (milder) flareups that are caused by even smallest amount of anything that's off the "diet" things. I can get a some flareup by cleaning some dusty drawers, by sleeping on a bed with dusty floor undernearth, by using spice mix that obviously has something wrong mixed in it, well and of course by eating something wrong when I get weak (and stupid).... Just to give you an idea, when I go to a store I cannot buy any snack at all that would be safe for me. All food that I take has to come from my kitchen and my pots... I have stuck to absolute diet for 3 months but within a week after I started adding some food like fruits or nuts to see if I was still intolerant to it, but I again get back to having problems... I have tried getting tested for allergy (nothing), for stomach problems (nothing), ultrasounds (nothing), blood test for clieac (nothing). Doctors here do not know the cause and do not get concerned also (the doctors just say oh if you feel you cannot take certain foods, then don't take them - duh, but when the list of those tihngs is that long?). Stomach biopsy is not done in my country (unless the patient is dying I guess). The only medicine that I take that helps me is an absorbent that is supposed to take out allergens out of the guts and is taken during poisoning (someting similar to activated charcoal). I took antihistamines almost every day in spring 2017 and I ended up always getting too drowsy for one-two days (even from the non-drowsy ones), so I have stopped taking them. The reason why I am writing all this and why I'm happy you have read till the end is that I feel disheartened and it is very hard for me to actually come to terms with this kind of diet especially because all lab tests come out clear and objectively there is no proof that I do have any allergies or intolerances or stomach problems. I'd appreciate to hear you take to it and perhaps some advice...
  8. Celiac.com 10/09/2017 - New trial data suggests that the probiotic strains Lactobacillus plantarum Heal 9 and Lactobacillus paracasei 8700:2 may provide support for the immune system and delay the onset of gluten intolerance in children. The findings, recently presented at the International Celiac Disease Symposium in New Delhi, suggest that Probi's patented probiotic strains have a 'surprisingly consistent' effect on suppressing coeliac autoimmunity and may delay the onset of the disease in children who are genetically pre-disposed to the condition. "To our knowledge this is the first time a probiotic study has been performed on this specific population and the results show immune-supporting properties of these probiotics as well as a potential preventive effect on the development of celiac disease," said Dr Daniel Agardh of Lund University. Agardh and colleagues identified and recruited 78 children with a genetic pre-disposition to coeliac disease. The children were as a subpopulation in a multinational and multiyear autoimmunity study with thousands of children. The randomized, double-blind, placebo-controlled trial lasted six months and found that disease-related antibodies were significantly reduced in the probiotic group and significantly increased in the placebo group during the course of the study. Results show that the probiotic strains had a suppressing effect on celiac autoimmunity and may delay the onset of the disease – with tissue transglutaminase autoantibodies (tTGA) decreased in the treatment group, but increased in the placebo group. In addition, several significant differences were observed between the groups on a cellular level indicating that the probiotic may counteract coeliac disease-associated ongoing immunological and inflammatory response. "This is an excellent example of a well working collaboration between academia and the industry" commented Probi CEO Peter Nählstedt. "We see a growing interest in children's probiotics and these results enable Probi to build a product platform for children." Read more at: Nutraingredients.com
  9. Celiac.com 09/28/2017 - The Gluten Intolerance Group of North America (GIG) is suing celebrity chef Jamie Oliver for using a logo on his gluten-free recipes that is similar to that of the GIG's Gluten-Free Certification Organization logo. Although there is no disagreement that Mr. Oliver's recipes are indeed gluten-free, a judge and jury may need to decide whether or not he is violating their trademark by using a similar graphic on his recipes. According to the Gluten-Free Certification Organization, its logo is now widely identified as the official gluten-free stamp of approval on gluten-free products. In the lawsuit the GIG claims that Mr. Oliver is purposely using their trademark on his online recipes to make it seem as though they've been certified gluten-free by the Gluten-Free Certification Organization, which is not the case. The GIG also claims that this is misleading to consumers, and using the trademark in this manner could ruin their reputation. The GIG has asked Mr. Oliver to stop using his 'gluten-free' online labels, and will seek monetary damages in court if he does not comply. Source: tmz.com Gluten Intolerance Group of North America v. Jamie Oliver Food Foundation, Inc. et al., case number 2:17-cv-01461, U.S. District Court for the Western District of Washington.
  10. Hi everyone, I'm new to this forum (and diet) & have been having a lot of trouble trying to find foods I can eat based on the results I recently received after a food intolerance blood test. Google isn't helping me answer all my questions, and my naturopath is on vacation for the next 2 weeks, so I was hoping some of you informed folk could help? My main intolerances include: Dairy (cow, sheep, goat, casein) Barley & wheat - (I am OK to eat gluten, durum, wheat bran, buckwheat, millet, rye, oats...) Pea Corn Potato Rice Cashew nut & pistachio Yeast (brewer's) - baker's is fine Bean (Red Kidney & White Haricot) Egg white - (egg yolk is OK, and baked eggs are fine) Orange Cabbage (Savoy/White) Mustard Seed The odd thing is, I am okay to eat gluten (gliadin) itself, but eliminating wheat from my diet puts me on a gluten-free diet. Does anyone know what kinds of flours are appropriate substitutions given my intolerances? (ie, sorghum, quinoa, semolina, spelt, etc.). Most places use rice, potato or corn as substitutions, all of which I think are safe to say I cannot have. My list of questions of what I CAN eat, if anyone can help answer their groupings or categories: Baking powder corn syrup, rice vinegar, sweet potatoes/squash lima, black, pinto, mung beans & chickpeas quinoa & farro It's been difficult trying to create a diet and figure out places I can safely dine out without having to worry. Thanks so much for your help. Cheers! A
  11. ok today is officially one week i've been gluten free and i haven't made any noticeable differences in feeling better. my first question is: how long should i wait to expect changes to occur? am i not giving it enough time? prior to going gluten free one of my issues was constipstion, as well as other health issues usually involving an upset stomach, nausea or an uneasy feeling in my stomach. but since going gluten free i have had a bowel movement different from usual. and today it was more loose and diarrhea like and it is very rarely like that. oh and about half way through the week i got a random rash pop up on one ankle???? advice or suggestions??
  12. I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use! Matt --- Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI: Presentation slides from Dr Volta's visit to Coeliac UK - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children: NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo
  13. After 6 years of having many many medical issues (I am now 20), I finally got tested for Celiac and it came back a big fat NEGATIVE. In the past I have been scoped in upper and lower but all the doctors could find was gastritis causing my episodes of acid reflux. Years have passed..a topical ointment for this rash...a migraine medicine for that migraine headache....that sinus surgery...here's a steroid...I just don't understand why you need all these root canals...you have many swollen lymphnodes...the asthma...the dizzy spells....the weakness....I am only 20 and needing to take supplements for a Vitamin D deficiency when there was no reason for me to even have it in the first place! So after talking to my GI doctor, we decided it was IBS and nonceliac gluten intolerance (which he has yet to put on my chart but he said it was that if it wasn't celiac). It has been a week since that diagnosis and quite frankly, I just don't know how to feel. Like it's like one day you just walk in your doctors office, they give you a diagnosis, expect you to make this big change, and just send you on your way forever with no follow ups. So I feel quite lonely but okay. I am pretty sure another reason why i feel lonely is because my family just doesn't believe me. It is plain and simple like that. I tell them I can't eat something and they will say "well I worked hard to make it after working all day so just have a little bit" ... and then they wonder why I am in my bed all night long with the ice, heating pad, and meds that don't work. Ever since the diagnosis I was not taken seriously at all. The gluten free diet has made me feel FANTASTIC!!! But they don't see it. They think I "just need to chill out" when I explain that I will literally get heart palpitations if I were to eat gluten. They think my gluten driven rash (which my GI doc said is the gluten rash) is just some form of STD or something. The other night my chinese food was contaminated and I was so nauseous for 2 days and my mom just couldn't wrap her brain around that cross contamination bothers me and blamed it on "sleep deprivation". The list goes on people. After tonight I was just done with it all. I live with my parents because I am in nursing school and it is the most convenient. My mom made me dinner and swore it was gluten free. I ate it and felt off. I had worked a long day and was just like "well okay". My brother brought home breaded chicken wings which I was very attacked for not eating. Then around 20 min after my consumption of dinner, I broke out in my rash, got stomach cramps, diarrhea, nausea, a headache, acid reflux, etc. I told my mom I think her dinner had gluten in it and she was just walking around and huffing as if I had actually ruined her life by stating that. She even dug through the garbage ready to prove me wrong until she found the soup can...yes it did have gluten. And all she can say was "oh well sorry" and barely even spoke to me for the rest of the night regarding any of it. Didn't even turn to me to talk when i was speaking to her. Why does my family act this way and how can I deal with this? Why do they act so annoyed because my body is reacting to something? I explained to them millions of times what will happen if I ate it but they honestly don't care about it. They just don't. I dont have celiac but gluten obviously makes me react to it, even in very severe ways. So why should I have to eat gluten and suffer because of them? Why would they even be expecting such a thing? Non celiac gluten intolerance is real right? I just feel silly for doing something for me for once instead of taking care of their needs like I usually have to do. In the past I have gotten called hypochondriac by them to the point where I dont wanna even see the doctor for a sinus infection because I am afraid all doctors think the same of me. If anybody has any advice, I would greatly appreciate it!
  14. Dear all, I have found out during the summer, that I am intolerance to gluten. After 3 weeks suffering and "self diagnose" that all issues are after I eat flour base product. I have stopped to eat them and I am clear from all problems. My reactions are very quick, because several weeks ago I eat something with gluten by accident and I could feel it within one hour and I felt weak for over a day. My doctor is really good, but he wants to test me, to find out where the problem is. He asked me to eat normal (not gluten free diet) for at least 3 weeks. But I am really worried that I will suffer like I did (over summer or in the last incident) for 3 weeks. Can't imagine that. Any suggestions, do I need testing or keep off gluten without test? Thanks, Michaela
  15. A few months before my 22nd birthday and college graduation (late March), I started noticing daily GI issues including gas, bloating and diarrhea . I passed most of this off on the quality of the food at my school's dining hall, but once I moved out, the symptoms did not cease. In April, I went in to see the school nurse for a UTI, and as part of standard procedure, they sent the test offsite for further analysis. Later that week I received an email from the Nurse Practitioner that I had also tested positive for E. Coli, but the MacroBid I had been prescribed for the UTI should also work on the E. Coli. (Maybe of note, I was in Belize, Mexico, and Honduras for a week in early March). Took the antibiotics, and symptoms did not resolve. After graduation, I went on the Whole 30 diet to cut out soy, grains (including gluten), and dairy (I have been mildly lactose-intolerant for over a decade). My symptoms almost all but disappeared. After, I went back to eating indiscriminately, and my GI issues seemed to worsen exponentially. In July, I went to my GP and ended up doing a stool sample so she could have me tested again for E. Coli, but the test was negative. I have tried for the most part to cut gluten and dairy from my diet, but now even other grains, such as rice, give me problems where I had none in the past. Garlic is also a new problem, and has my gut feel like a gurgling hot tub. Just this past week (Mid-September), chicken pan-fried in coconut oil (with which I cooked during the Whole 30 program without issue) seems to have me running to the bathroom about 30-60 min after consumption. In the past month, eggs are giving me trouble as well. I'm scheduled to see a GI in DC in October, but looking for relief and advice in the mean time. My symptoms range from gas to diarrhea to abdominal pain, but have never included constipation. (Maybe of note, I had a strange rash on my nose that took several week to heal recently, closely resembled rug-burn, scabbing, and neosporin seemed to help a bit, but its still not back to normal). Any advice would be very welcome!
  16. Years before I developed full gluten intolerance (probably celiac) while I could enjoy many wheat products, I would get odd, unpleasant reactions to Ritz crackers and Cheerios. I did not think much of it and generally just avoided those products. I periodically retried them thinking it was a temporary problem with the product. I subsequently developed the same problem with any wheat and gluten product. Has anyone else noticed a similar prodrome to any food products?
  17. I was diagnosed with Celiac disease a little over a year ago and have been gluten free since. I feel so much better now that I have been gluten free. However, I still have been having some issues particularly with acne, lethargy, and chronic congestion/post nasal drip. After talking with my doctor and reading multiple forums I have decided to eliminate dairy from my diet to see if I may be intolerant to it. I am wondering how long I should do this before I might expect results/decide if it's not working?
  18. I'm simply reaching out to others. 8 years ago I had a gastric bypass, the old fashioned kind, where they literally stapled my stomach, cut it off of where it was supposed to attach to my intestine, and picked a new spot. 8 yrs later, they have discovered after lots of us have lost teeth/hair from no calcium absorption,are chronicly anemic, ( tried: b12 shots, nasal and sublingual ) and have fluctuating blood sugars... that I am also gluten intolerant. I saw multiple specialist, all who focused on the pouch area they now call my stomach. No one thought about the point of connection to my intestine, or what it might effect. If I can not tolerate sweets related to no intrinsic factor and get 'dumping syndrome'.... why did no one recognize that possibly gluten would also bother me? ? I have been gluten free for about 4 years now. I started as a self-diagnosing journey of "gluten -hangover"..... as a nurse, to have my patients say I looked terrible, hurt. ( Especially as I work in substance abuse, ands was NOT hung over from alcohol).To have non-stop belching battles after a few bites of food ~intolerable! I feel 100 times better. ... and am just as adventurous about cooking/living gluten-free as I was in the other world. I'm curious to see if others have found this to be a result of surgery as well. ( luckily they have all but stopped performing my type of bypass...as it created multiple medical issues) In regards to bloodwork, it has been abnormal since surgery. ..across the board. Thank you for listening. ..
  19. Hi hi! Just a question for the people who do react to glucose syrup... Are your symptoms the same as with a regular glutening or slightly different or...?
  20. I was talking to my primary care physician (who happens to be a Gastroenterologist) and described to him what has happened the few times I've been glutened since my DX about 2 1/2 years ago (we were discussing the potential impact of eating half of a non gluten-free chip) Two days of diarrhea, general bloat for another few days, spaciness for about a week and gum pain/headache for another week or two. He seemed surprised at the severity and said that this is a high level of intolerance. I don't think I'm highly sensitive but I'm generally very careful about cross-contamination. I'm just wondering how sensitive these symptoms seem to you? How does this compare to what would happen to you if you ate half a chip (assuming you have a dx of Celiac). Thanks.
  21. Hi everyone, I am certain someone has brought up a similar question before, but there we go anyway: My GP has recently advised me to try out a gluten-free diet, since he firmly believes I am intolerant. (I've had something similar to a rosacea for over 10 years.) As I get into the third week out of six of a gluten-free diet, my skin has massively improved but I am bothered about one thing... What about cross-contamination? My general view of my highly probable intolerance was to still eat some products that "may contain traces of gluten", as it's stated on the package. Yet, I fear I should avoid these products too. Here's why: I am often experiencing the pins and needles syndrome on my forearms or my feet. (I doubt it comes from any physical activity, since I'm only cycling to work and usually don't experience such things on a regular jogging.) Recently I am often extremely thirsty or have a sore throat in the morning and the evening. (This might be due to summer and air conditioning though.) I'm asking your advice here. Should I also ban these potentially unhealthy products of my diet for the remaining three-four weeks of this test or not? Have any of you experiences something similar with regard to a gluten intolerance? Thanks to you all and thanks for reading !
  22. For those of you that have determined you can't handle sulfites - how did you determine? What kind of symptoms did sulphites cause you? Was this during the healing process for you and were you able to add them back in?
  23. Hi there...I've been gluten free since my biopsy so about 10 months...still having random neckrash and hives on my eyelids and recently was tested for food allergies. The IgE results were all negative but the IgG came back positive for casein, wheat, corn, beef, apples, banana's, potatoes and tomatoes. It only tested 10 different things (ok for chicken and soy)...I've been trying to find information on this while waiting to see a nutritionist but my dr just said for now stay away from the highest offenders...the levels were supposed to be under 2.0 and corn was 11, bananas 9, beef 7.4, casein 5.5 etc..while tomatoes were 2.5 and potatoes were 2.0 which they marked as high... I was told at my endoscopy 10 months ago that I had a lot of visual inflammation of the esophagus, stomach and intestines and the results were celiac disease gerd and inflammation of stomach.... Many places I read that if you had low positives to ignore those and I'm thinking no I should notice all positives....?? and I can't find any reference to what is considered "low positive"...is the 11 a low positive that I had for the corn or is it like a WHOA off the charts....I can't even find a reference for it...Any insight anyone???
  24. Celiac.com 02/13/2015 - Food intolerance is non-immunological and is often accompanied by gastrointestinal symptoms. What can a review of scientific literature teach us about the causes, diagnosis, mechanisms and clinical evidence regarding food intolerance and gastrointestinal symptoms? Researcher M. C. E. Lomer recently set out to critically analyze the scientific literature related to etiology, diagnosis, mechanisms and clinical evidence as it relates to food intolerance. To do so, Lomer searched Pubmed, Embase and Scopus for the terms and variants of food intolerance, lactose, FODMAP, gluten, food chemicals. He restricted his search to human studies published in English. Lomer also conducted a physical search for references to these terms from relevant papers and appropriate studies. By Lomer’s assessment, food intolerance affects 15–20% of the population and may be due to pharmacological effects of food ingredients, non-celiac gluten sensitivity or defects in enzyme and transport. One area researchers now have a bit more solid scientific data about is the role of short-chain fermentable carbohydrates (FODMAPs) in causing gastrointestinal food intolerance. Food exclusion followed by gradual food reintroduction is the best way to diagnose such food intolerance, and to relieve symptoms. There is increasing evidence to support the use of a low FODMAP diet to manage gastrointestinal symptoms in cases of suspected food intolerance. A low FODMAP diet is effective, but changes gastrointestinal microbiota, so reintroducing FODMAPs to the point of tolerance is part of the overall management strategy. Exclusionary diets should be as brief as possible. They should be just long enough to induce symptom improvement. They should then be followed by gradual food reintroduction to establish individual tolerance. This will help to increase dietary variety, ensure nutritional adequacy and minimize impact on the gastrointestinal microbiota. Source: Alimentary Pharmacology & Therapeutics. Volume 41, Issue 3, pages 262–275, February 2015. DOI: 10.1111/apt.13041 More info on the FODMAP diet from Stanford Univerisity.