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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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    ALLERGY AND INTOLERANCE BY LYDIA S. BOEKEN M.D.


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    Introduction

    Through his writings, we know that Hippocrates, the father of medicine, had already recognized the presence of allergic reactions in people as early as ancient times. However, the term allergy is a relatively new one, as compared to many other commonly used medical terms. In 1906, Viennese pediatrician Baron Clemens von Pirquet used the term for the first time to describe an altered response of his patients bodies. Von Pirquet believed that this altered reaction manifested itself in changes of the immune system, effected by external influences on the body, such as: food intake, the air breathed or direct skin contact. The term allergen (the substance responsible for the altered reaction) was born. At that point in time, however, von Pirquet had no means of scientifically proving that these immunological changes actually occurred in the body. It was not until the mid-1920s, that a second significant event occurred.

    Researchers found that, by injecting a minute quantity of purified allergen under the skin, certain individuals would develop a clear skin response; a welt, with or without itching and redness, could be provoked. This positive skin test for allergies would show itself most prominently in patients with hay fever, asthma, chronic rhinitis, hives and eczema. The prick test became a method of demonstrating the involvement of the immune system in allergic reactions. However, the precise biological reason for the reaction continued to remain a mystery.

    It was not until the Sixties, when an important discovery occurred which provided long-awaited scientific support for the classical allergy theory and removed any doubts about the relationship of the immune system with allergies. This breakthrough came about with the scientific discovery of immunoglobulin E (IgE) by a Japanese couple named Ishizaka.

    Classical Allergic Reaction

    The following are the chain of events which happen in allergic reactions:

    • An allergen must be present in the body. This allergen is the substance which causes us to have an abnormal immunological response. Allergens tend to be protein molecules. Interestingly enough, the immune system only detects particles of a certain size as potential troublemakers and protein molecules are just the right size. In a small number of cases, the body actually responds to molecules other than proteins. These molecules, which are generally much smaller, are called haptens. By combining with protein molecules, haptens form larger complexes which can then be detected by the immune system.
    • The allergen is detected by the B cells. These are specialized immune cells, capable of producing antibodies. Just like allergens, antibodies are protein molecules, which have the capacity to neutralize allergens.
    • Every B cell produces its own, specific antibody, depending on the type of intruder it needs to respond to. It is easy to understand why the body must have a ready pool of millions of antibodies, in order to combat these numerous offenders. There are five main categories of antibodies (IgG, IgA, IgM, IgD and IgE) which the body releases under different circumstances (for instance to fight off various infections, etc.). In the case of allergies, the body produces the antibody immunoglobulin E (IgE), first discovered by the Ishizakas.
    • Usually, antibodies will bind directly to the appropriate damaging substance and neutralize it. However, IgE deviates from this common path. It first attaches one of its legs to one of the bodys numerous mast cells. The other leg is used to hold on to the offending allergen. This action signals the mast cells to begin disintegrating, thereby releasing histamine.

    Histamine is a chemical substance responsible for a great number of complaints which may arise during allergic reactions. It causes muscle cramps and an inflammation-like process with redness and swelling of mucous membranes.

    Allergic reactions can occur under a variety of circumstances. For instance, inhaling certain substances, such as grass pollen, house dust, etc., may cause an allergic response. However, the consumption of certain foods may do the same. Allergies typically bring on complaints very rapidly upon contact with the allergen. Complaints may vary from a runny nose, sinusitis, earache or runny eyes to itching of the skin, eczema and shortness of breath.

    Intolerance

    Conventional medicine can easily diagnose and treat allergies for foods or inhalants. Here, the so-called RAST test plays a very important role, because this test can demonstrate the presence of IgE.

    However, demonstrating the presence of intolerance is more difficult. In this situation, similar to the case of classical allergies, the body responds abnormally and, in addition, the immune system does not produce IgE. It quite often takes much longer for complaints to come on, thereby masking the possible link between the offensive substance and the complaints themselves.

    These are only a few of the reasons why food intolerance is considered a fairly controversial concept in conventional medicine. Intolerance can be responsible for a wide variety of complaints which, at first glance, seem to lack a plausible explanation. Intolerance can manifest themselves as the following:

    • Gastrointestinal complaints: stomach ache, irritable bowel, Crohns disease, ulcerative colitis
    • Skin complaints: itching, eczema, hives, acne (in adults)
    • Joint and muscle complaints: ranging from atypical pains to rheumatoid arthritis
    • Headache and migraine
    • Chronic fatigue
    • Asthma, chronic rhinitis or sinusitis
    • Pre-menstrual syndrome
    • Hypoglycemia
    • Depression, anxiety
    • Sleeping disorders

    Diagnosing Intolerance

    It is impossible to accurately demonstrate intolerance through conventional testing methods.

    The Amsterdam Clinic currently uses the following test, which is very reliable.

    • Another useful test is the IgG(4) antibody test. Here, the presence of IgG(4) antibodies is determined. These antibodies are the slowly occurring variety, which do not appear in the blood until 24 to 48 hours after exposure to an offending food or substance. The reliability of this test varies between 80 and 90%.

    Treatment

    Diet

    In the treatment of inhalant allergies (such as asthma, hay fever) and food allergies and intolerance, avoidance (elimination) of allergens plays an extremely important role. In the case of food sensitivities, either the cytotoxic test or IgG(4) test can help determine reactions to specific foods. Based on the test results, an elimination/rotation diet can be specifically tailored.

    Foods causing strong reactions in these tests, should (temporarily) be excluded from the diet. More moderate reactions allow for rotation of certain food items in the diet. These may be eaten once every four days. Especially during the first week(s) of the diet, withdrawal symptoms, similar to complaints stemming from the cessation of coffee, tobacco or alcohol consumption, may occur. The body seems to crave offending food items. Generally, these withdrawal symptoms disappear after a couple of weeks. Concurrently, those complaints relating to food sensitivity also diminish.

    Using this dietary approach, the reaction to food allergens may decrease in the course of time. After a three month moratorium, reintroduction of forbidden food items can be attempted, one at a time. In this way, food items still causing reactions can be isolated more easily. Often, at least part of existing intolerance completely disappear after an elimination/rotation diet.

    With the treatment for inhalant allergies, elimination is also the first step. It is obvious that patients having an allergy for cats or dogs, should avoid any contact with these pets. The situation becomes more difficult when dealing with allergies to grass or tree pollen, since total elimination is basically impossible. The same goes for house dust mite allergy. The house dust mite lives in mattresses, pillows, carpeting, drapes, upholstery, etc. Through mite-killing pesticides, special mattress and pillow covers, non-carpeted floors, etc. reasonable results can be obtained.

    Medication

    Medicines for inhalant allergies, such as antihistamines (Triludan), corticosteroids (Prednisone, Pulmicort, Becotide), cromoglycates (Lomudal, Lomusol), and airway dilating medication (Ventolin, Berotec, Atrovent) do suppress symptoms, however, they do not cure the allergy! In the realm of conventional medicine, effective medications for food allergy and intolerance do not exist at all.

    Desensitisation

    Enzyme-potentiated desensitisation (EPD) and the provocation/neutralization method are very effective treatments for food allergy/intolerance and inhalant allergy problems. These methods tackle allergy problems at the root.

    • During EPD treatment, a small quantity of a food or inhalant allergen mixture is injected intradermally into the skin, in conjunction with the enzyme beta-glucuronidase. This combination causes the body to gradually adjust its exaggerated responses to food and inhalant allergens. In this way, the immune system is readjusted and reset. Initially, the injections have to be given once every two months. Gradually, however, the intervals between injections become longer and the injections can often be discontinued after a time. According to conservative estimates, at least 80% of those patients treated with EPD show considerable improvement in the course of time.
    • Provocation/neutralization can be used both diagnostically and therapeutically. Here, separate extracts of food or inhalants, suspected as possibly offending, are injected intradermally. This causes a welt to appear in the skin. After 10 minutes, the size and nature (firmness, color, etc.) of the welt are evaluated. A positive welt will generally bring on symptoms (provocation). Depending on the size and nature of the welt, as well as, the presence of symptoms, varying concentrations are injected, until a dose is found which does not cause any welt changes or symptoms. This is the neutralizing dose. Injections with the proper neutralizing dose will bring on immediate protection against the symptoms caused by the offending food and/or inhalant.

    Copyright © 1996 the Amsterdam Klikiek

    For further information please contact:

    Also in THE NETHERLANDS:
    Amsterdam Kliniek
    Reigersbos 100
    1107 ES Amsterdam Z.O.
    Telephone 31 (0)20 697 53 61
    Telefax 31 (0)20 697 53 67
    Lydia S. Boeken M.D. London/Amsterdam



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    Guest charles lynn

    Posted

    Extremely informative, thought provoking, and written so that it is easy to understand.

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    Guest Jodi Zeller

    Posted

    I was just diagnosed with celiac disease and I found a lot of good information in this article.

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    Guest Dale Jones

    Posted

    Very informative, my husband came up negative for celiac disease, though he displays all of the symptoms when not kept on a gluten free diet. His sister was diagnosed in her mid 50's with celiac. Your site has been so helpful and I have learned so much. thank you Scott.

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    Guest Jean emery

    Posted

    I have not been diagnosed with celiac but instead have a history of diverticulitis for almost 6 years. last year I had a colon resection and they removed 4 inches of my colon. I felt much better till 3 months ago when I had a questionable diverticulitis attack and was put on antibiotics. 1 month ago I had another attack very similar left-lower quadrant pain and was again put on antibiotics. In fact my MD even suggested I should probably consider surgery again which made me very depressed. SO another health care provider suggested that maybe I had a gluten allergy as I did eat tons of wheat products. SO for 3 weeks I have been doing gluten free and am feeling so much better--very little pain and gas and it is a wonderful feeling. Have you ever heard of someone getting relief with symptoms like mine? Thanks JEAN

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    I live in a small town in North Carolina and most people have never heard of celiac disease so I read everything I can on this disease because I know so little about it ....

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    Guest K beams

    Posted

    My son has both celiac and diverticulitis-please stay on the diet. He also has trouble with popcorn-the hulls stick to his intestines and cause the diverticulitis-as long as stays on the gluten-free diet and off popcorn, he is well!!

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    Very informative. Thank you. I am in the process of being tested for celiac disease. I had never heard of it until I decided to give an Asthma/Allergist doctor a try.

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    Guest Rebecca Cody

    Posted

    I found this article explained allergies and intolerances very clearly. I am a nutritional therapist and I found this better than what I read for my classes.

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    Guest Mike Munday

    Posted

    A very good interesting and informative article! My question is this; my son has been diagnosed as a 'Celiac' and I did have classic symptoms of a 'Celiac' but I am surprisingly not one! I was small for my age when I was young as is my son, practically twinny!. Is it possible to grow out of this condition, keeping in mind that I have read up about latent celiac disease, or is there not enough data on a control group which were as children and are not any more? I do realize the importance of early diagnosis on prevention of other complications but I do wonder that maybe the body can work wonders by itself!!! I am just a thinking human dad that wants to have all possible data on this condition and not just what is in 'favor'. If any one has any positive info please let me know. Note I am totally supportive of my son but I really do want to here all sides of the cases! Thanks!

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    Guest Carol Frilegh

    Posted

    A compact and comprehensive overview of celiac disease. The symptoms can be so puzzling and sometimes contradictory that it is hard to 'nail it down.' Sometimes the test results aren't accurate and as my doc said, 'If it looks like a duck, walks and talks like a duck, treat it like it's real.' I started The Specific Carbohydrate Diet before being tested so never had the biopsy.

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    Guest harvinder

    Posted

    I was diagnosed a celiac two years ago (in Jan, 2005). I am from India (Punjab) and heard about the problem for the first time then. Ever since I have tried to do some research on the subject to be aware of its implications. This is definitely one of the good articles. Thanks

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    Guest Nancy Rice

    Posted

    My husband does not understand allergies (or the need for gluten free bread) so I am very happy to have this explanation to let him read. Thank you.

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    Guest Alex F.

    Posted

    I came across your excellent article today as part of doing my research for a possible diagnosis for severe allergic reaction & 3 trips to the ER this week. My sister was diagnosed with Celiac 2 years ago & I have been diagnosed with crohns disease. Your article describe to the letter the extreme symptoms I have been facing. My physician at my urging order a blood test to check for the immunoglobulin E (IgE), I hope we the results will confirm the mystery.

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    Guest Tom Griffin

    Posted

    This site is wonderful! I would love to see a SAFE GLUTEN FREE Restaurants....or a SAFE GLUTEN FREE Comprehensive Menu that can be used on this website for when going out to a restaurant.....I get very, very sick...Thanks~!

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    Guest Whitney

    Posted

    This article was very helpful. My daughter was diagnosed with Celiac in December 2007. She was only 13 months old at the time. Since then, so many people that I talk to say, 'Oh, she's still a baby, she will grow out of it. Kids grow out of allergies, don't they?' This article will help me explain to them, the difference between an allergy and an intolerance. Thank you!

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    Guest Bob G.

    Posted

    I was diagnosed for celiac as a toddler, but seemingly went asymptomatic in childhood.Three years ago,at 42 years old, I started exhibiting symptoms again (though I didn't recognize it as such at the time). I began eliminating foods from my diet and noticed some improvement after I stopped consuming gluten . I had no idea of he pervasiveness of it in many processed foods until I found this website . Though I'm still not officially diagnosed as celiac, my abstention from all things gluten has improved my overall health considerably...So thank you

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    Guest Alex P

    Posted

    Exactly what I needed to know regarding the effects of Gluten on my body. Thank you soooo much for this information, which I haven't been able to find anywhere else.

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    Guest Emily

    Posted

    I was diagnosed with a gluten, tomato, strawberry, pecan, grape and orange intolerance through the ALCAT test, which I received through a nutritionist at Women to Women in Yarmouth Maine (founded by Christine Northrup). I also discovered a variety of other foods that gave me mild intolerance - my sister and father both have Celiac, but I always had a less intense reaction.

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    Guest Edith Nel

    Posted

    I recently started noticing that my runny nose was not clearing with any medication prescribed by my doctor, decided to look up gluten intolerance and stumbled onto this site, I will now explore this avenue.

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    Guest jeannie

    Posted

    re #17, Tom -- every restaurant will serve you a salad, no croûtons, oil and vinegar or lemon dressing. Every restaurant will serve you grilled non-breaded chicken or other meat. It really isn't that hard. I think sometimes we make a lot out of how difficult things are when they actually aren't very complicated. I eat out a fair amount and I'm very careful and it's pretty easy.

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    From the responses to this article, it seems that it has been misleading for some people. This article, although a fine summary of food intolerances, does not describe Celiac disease. Gluten intolerance is not Celiac disease. In a world full of medical unknowns, we DO know the exact mechanism of Celiac disease. The body produces an antibody response (IgA) to a protein called gliadin (a small, indigestible part of gluten) as it comes through the small bowel. This creates a hostile inflammatory environment in the wall of the small bowel which destroys the absorptive surface. At the same time, the antibody responding to gliadin, recognizes an enzyme (tTG) because gliadin is bound to it. tTG is found in a lot of different tissues, including the skin. This is why Celiac disease can be called an autoimmune disease. If you eliminate gluten from your diet, the antibody response is eliminated and all returns to normal. Antibodies to tTG can be measured from the blood giving the diagnosis of Celiac disease. This test picks up 90-100% of people with Celiac disease. But the gold standard of diagnosis is endoscopy with small bowel biopsy. If you haven't had this, then you can't exclude Celiac disease. It is true that you can be gluten intolerant, and it is true that you can have an IgE mediated allergy to wheat, but these are not Celiac disease.

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    I was diagnosed with celiac disease in February of 2006, and it has been very hard for me to explain to people the difference between an allergy and an intolerance, and after I referred them to this article, they finally understood!

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    admin

    The following is a March 11, 1998 post by Kemp Randolph krand@PIPELINE.COM.
    According to Dr. Hugh Sampson, Mt. Sinai Medical Center, at an AMA sponsored press briefing on Nutrition, in a list of Facts vs. Fictions, Fiction: Skin tests or blood tests can be used to diagnose food sensitivities. Fact: ...A positive test does not mean a person will react to a food...furthermore these tests do not tell whether a person has a non-IgE mediated sensitivity to food.
    He describes these tests only as useful guides and points out that diet testing is the only reliable way to identify a food allergy, preferably where the person does not know whether they have eaten the suspect food.
    Q: If I am sensitive to milk and eggs...could they damage my villi in the same way as gluten?
    A: Theres a specific note in Michael Marshs book about food allergies causing villi damage. Thats the book On Coeliac Disease, page 155. Table there shows that the Type 3 stage of intestinal response, flat destructive does occur with milk, egg, soy and chicken or fish allergies. It differs from the celiac response in that only 1 or 3 of the 5 stages of lesion connected with celiac disease occur with an allergy.
    Whats unclear from this reference and from Medline searches Ive made is whether food allergies in adults cause villi damage. All the references I found were for children. Villi destruction does occur in children with milk allergy, but this like other pediatric allergies, apparently is usually outgrown.

    Paul Smith
    Celiac.com 06/29/2009 - Hypersensitive reactions to food are becoming increasingly problematic in society. Allergy experts report that the prevalence of food allergies appears to be rising and while there are no exact figures for this in Australia, some studies have shown marked increases overseas.
    For example, a study from the Isle of Wight in the U.K. has shown a tripling in the rate of peanut allergies over the past 10 years. However, the reason for this is not yet clear.  Auckland allergy expert Dr. Vincent Crump has three theories regarding the increase in peanut allergies.
    More people are eating peanuts and, up until recently, many eczema creams contained peanut oil, possibly exposing an allergy prone person to the food.
    There’s also the 'hygiene theory' of disease, which suggests that children are not exposed to enough dirt and bacteria these days, and therefore do not build up a normal immunity to harmless substances. So when they are exposed, their immune system overreacts and they develop an allergy.
    Despite the overall increase in food allergies, the rate in adults is still pretty low – around one per cent. However, the rate is higher in children, where up to five per cent are believed to have a food allergy.

    Allergy vs. intolerance
    The most common and best understood type of allergy is a reaction in which the body's immune system overreacts to a food and mistakenly produces antibodies (called IgE) to the food. This can cause reactions, sometimes severe, that affect the skin, breathing, gut and heart.
    An intolerance is an adverse reaction to a food that does not involve the immune system. Symptoms are generally less severe, and can include headaches, gut problems and worsening of skin conditions such as eczema. Intolerance is much less likely to be life-threatening than a true allergy.

    What is an allergy?
    According to the Australian Society of Clinical Immunology and allergy (ASCIA) education resources website, the word “allergy” is frequently overused and misused to include any irritating or uncomfortable symptoms after eating.
    Strictly speaking the term should only be used for the symptoms which develop after eating certain foods as part of the immune response.
    In an allergic reaction, the body’s immune system mistakenly believes the food is harmful and tries to protect itself. In doing so it overreacts and produces, for example, harmful antibodies to fight the food “allergens”. In turn, these special antibodies (called IgE) make the body produce histamines and other chemicals, causing reactions that affect the skin, breathing, gut and heart.
    IgE antibodies can also “cross react “with other allergens. For example, someone with a latex allergy may also react after eating a banana, kiwi fruit or avocado. According to allergy specialist Professor Rohan Ameratunga, up to 50 per cent of people who react to one tree nut (including almonds, brazil nuts, Cashews, hazelnuts, macadamias, pecans, pine nuts, pistachios and walnuts) will react to other tree nuts.
    A recently recognized form of food allergy is the “oral allergy syndrome”, where a person experiences a cross reaction between pollens and fresh fruit and vegetables.
    This “cross-reactivity” is also the reason why some adults with a predisposition to other allergies suddenly develop a food allergy.
    For example, a person with a birch pollen allergy can suddenly became allergic to apple or kiwi fruit allergens.
    Dr Crump says more and more adults prone to allergies are developing cross reactions after they are overexposed to certain foods (such as acquiring wheat allergies after working in a bakery).

    What are the most common food allergies?
    Allergies are mostly triggered by nuts, shellfish, fish, milk, eggs, wheat and soybeans.Adults are more likely to be allergic to fish, shellfish and nuts, with children suffering more from allergies to milk, eggs and peanuts.  Reactions to seeds and fruits are also becoming more common.
    There are cultural differences in allergy patterns, according to professor Ameratunga.
    In Japan, rice allergy is common. In the Middle East and Australia, sesame allergy is on the rise.
    We know the treatment for coeliac disease is a gluten-free diet for life. Although people with coeliac disease produce antibodies the allergic process is different from that seen in most other allergic reactions.
    In coeliac disease, gluten reacts with the small intestine, and activates the immune system to attack the delicate lining of the bowel.
    The normally rippled lining of the intestine becomes damaged and inflamed, and forms the characteristic flat appearance of celiac disease.
    The surface area, which enables the absorption of nutrients and minerals from food, is seriously depleted, leading to gastrointestinal and malabsorptive symptoms.

    Common Intolerances
    Almost any food can cause an intolerance, but the repeat offenders are;OFFENDER:
    Lactose
    FOUND IN:
    Milk and milk products. Yoghurts have little lactose and hard cheeses have none.
    OFFENDER:
    Salicylates
    FOUND IN:
    Natural food chemicals found in a wide variety of fruits and vegetables such as cauliflower, eggplant, broccoli, tomato, apple, orange, and pineapple. Also found in nuts, spices and aspirin.

    OFFENDER:
    Amines
    FOUND IN:
    Histamines and histamine-like chemicals produced during fermentation, and the ageing and ripening of foods. Found in wine, processed meats, hard cheese, tomato paste, chocolate, and many fruits and vegetables.

    OFFENDER:
    Glutamate
    FOUND IN:
    An amino acid found naturally in all protein foods such as cheese, processed meats and milk. MSG (additive621) is a type of glutamate, and natural glutamates are also found in soy sauce, broccoli, mushrooms, spinach, tomatoes, grapes, plums and many others foods.
    Anything else you'd like to add?
    Leave a comment
     

    Dr. Vikki Petersen D.C, C.C.N
    This article originally appeared in the Autumn 2010 edition of Celiac.com's Journal of Gluten-Sensitivity.
    Celiac.com 12/06/2010 - The hazards to health created by celiac disease and gluten sensitivity are well understood.  From nutritional deficiencies to osteoporosis, from depression to autoimmune disease, and from psoriasis to thyroid disease, there are few areas of the human body that gluten doesn’t touch in a negative way. 
    There is so much emphasis on our inadequate abilities to diagnose gluten intolerance, that when we do finally make the diagnosis I believe we are guilty of another problem—lack of adequate education to those affected patients.
    Just last month a research study was released by the American Journal of Gastroenterology, 2010 Jun; 105(6):1412-20.  The article was entitled “Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet”.  The research team hailed from the Division of Gastroenterology and Hepatology at Mayo Clinic College of Medicine.
    They stated that while a positive clinical response is typically observed in most adults with celiac disease after treatment with a gluten-free diet, the rate of small intestine recovery is less certain.  Their aims were to estimate the rate of intestinal recovery after a gluten free diet in a cohort [a group of people with statistical similarities] of adults with celiac disease, and to assess the clinical implications of persistent intestinal damage after a gluten-free diet. 
    Of 381 adults with biopsy-proven celiac disease, 241 had both a diagnostic and follow-up biopsy.  Among these 241, the confirmed mucosal recovery at 2 years following diagnosis was 34% and at 5 years was 66%.  Most patients (82%) had some positive clinical response to the gluten-free diet, but it did not prove a reliable marker of intestinal recovery. 
     Poor compliance to the gluten-free diet, severe celiac disease as defined by diarrhea and weight loss, and total villous atrophy at diagnosis were strongly associated with persistent intestinal damage. 
    There was a trend toward an association between mucosal recovery and a reduced rate of all-causes of death, adjusted for gender and age. 
    The conclusions were that intestinal recovery was absent in a substantial portion of adults with celiac disease despite treatment with a gluten-free diet, and that there was an association between confirmed intestinal recovery (vs. persistent damage) and reduced mortality independent of age and gender. 
    So what can we learn from this?

    Eating gluten-free when you are sensitive will cause you to feel better.  Going on a gluten-free diet is not enough to ensure that your intestines will heal. Failing to heal your intestines puts you at increased risk for disease and death. Successfully healing your intestines reduces your incidence of death from disease.
    While you likely knew the first point, 2, 3, and 4 are perhaps less well known.  Where I see that we are failing the gluten intolerant population is in the narrow focus of eliminating gluten as the only needed treatment.  What the above research proves is that, unfortunately, for over 30% of those diagnosed simply eliminating gluten is insufficient to ensure intestinal healing. 
    If patients were educated that healing their intestine would make the difference between contracting disease or not and extending their life expectancy or not, I think they’d be more interested in ensuring that it occurs.
    I am not a researcher but my clinic sees hundreds of patients who align with the results of this study completely.  Patients come to see us who have been told that they shouldn’t consume gluten and for the most part they follow that recommendation.  They know that they feel better when they are gluten-free so that is an impetus to not cheat.  When they do cheat they know that they’ll “pay” for it but they still do so fairly regularly. 
    Why do they cheat?  Because they believe that the diarrhea, headache, bloating, etc is temporary and that when it goes away they are “fine” again.  Their thought process is not unreasonable, it’s just wrong!
    If each patient was educated that cheating created intestinal destruction that in turn put them on a fast track towards disease and early death, I believe that cheating would take on a whole new perspective.
    Patients need this education and they need it often.  Our book “The Gluten Effect” was written with this intention—our patients actually requested it.   They asked for a written reminder of why they should maintain their gluten-free lifestyle.  Later I began taping Youtube videos because other patients preferred a reminder in a video form. 
    I’m trying to say this in a few different ways because it is terribly upsetting to meet patients, as I so often do, who have been diagnosed celiac or gluten sensitive and do not follow their diet solely due to ignorance.
    After almost 25 years of clinical experience I also know that some people “hear what they want to hear” and doctors with the best of intentions cannot get through to everyone.  But I strongly believe that we could be doing a much better job at enlightenment.
    Further, we also need to educate patients about the secondary effects associated with gluten.  When the immune system of the intestine is suppressed, as is the case in the presence of gluten pathology, inhospitable and pathogenic organisms can gain entry into the intestine and remain there.  These organisms may be in the form of bacteria, parasites, amoebas or worms and if they are not identified and eradicated, complete healing of the intestines is all but impossible. 
    The good bacteria that are housed in the gut, known as the microbiome or probiotics, make up much of the intestinal immune system.  In gluten intolerant patients this important population of organisms is often insufficient due to the onslaught from gluten and pathogenic organisms.  If the population of these probiotics is not restored to a healthy, robust balance, any attempt to achieve a healthy intestine will be unsuccessful.
    Lastly, it is an interesting catch-22 that in order to digest our food we need enzymes and enzymes are made from the nutrients we digest.  This circular pattern is dramatically interrupted in the gluten intolerant patient.  Celiacs in particular suffer from very poor absorption.  It shouldn’t then come as a surprise that augmenting with proper enzymes may be critical for “priming the pump” until proper digestion of nutrients is restored.
    Unfortunately I find that few, if any, of these points are made clear to patients who are gluten intolerant.  Most believe they are doing all they need to do simply by maintaining a mostly gluten-free diet.  Nothing could be further from the truth.
    To review we need to do the following:

    Maintain a “perfect” avoidance  of gluten Test for the presence of pathogenic organisms Test for any imbalance of the probiotic organisms Evaluate the need for enzymes Evaluate for the presence of any other food sensitivities, e.g.  dairy Educate the patient until they have a full understanding of the above Test to ensure that the intestine is healed

    Jefferson Adams
    Celiac.com 05/08/2015 - While it's true that all people with celiac disease are intolerant to gluten, not all people who are intolerant to gluten have celiac disease.
    Several studies have confirmed the existence of non-celiac gluten sensitivity (NCGS), a hypersensitivity or form of gluten intolerance that causes numerous symptoms similar to those of celiac disease.
    There are several key differences between celiac disease and NCGS. NCGS is distinguished from celiac disease by the following factors:
    No Hereditary Link
    Unlike celiac disease, NCGS is not hereditary, and shows no genetic component.
      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 Immumological or Serological Markers
    Researchers have, as yet, identified no immunologic mechanisms 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, and an IgE-mediated allergy to wheat, and by the continued presence of adverse symptoms associated with gluten consumption. Diagnosing celiac disease can be challenging. Misdiagnosis is common, and final and accurate diagnosis can take years and visits to numerous doctors.
    Because of these key differences, non-celiac gluten sensitivity is often even more slippery and difficult to confirm than celiac disease, itself.
    How about you? Do you or someone you know have celiac disease or NCGS? Share your story in our comments section below.
    Source:
    US Pharmacist. 2014;39(12):44-48.

  • Recent Articles

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764