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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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    DID YOU KNOW? (AUTUMN 2014)


    Yvonne (Vonnie) Mostat


    • Journal of Gluten Sensitivity Autumn 2014 Issue


    Celiac.com 08/15/2016 - Let's celebrate the good news first, and leave the disappointments until the end, where they belong.


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    Did you know that we are powerful when united? 5/19/2014 - The NFCA's Kristin Voorhees, MA, Director of Healthcare Initiatives, explains how advancing research lies in the hands of people living with celiac disease. A quick e-mail to a company that claims to have gluten-free food and does not even know the meaning of "gluten-free" needs to be educated and may even appreciate a quick note from you.

    For instance, a fellow celiac sufferer recently telephoned a company that carried gluten-free muffins to tell them that the inserted package of blueberry filler contained wheat flour, and since there was no e-mail site listed she asked for a full refund on the product and payment of her telephone call. She had the nerve to do it and received full compensation plus the cost of her long distance telephone call. She also received several coupons for other products claiming to be gluten-free.

    I, too, returned something that listed "gluten-free, wheat free, and even listed itself as "celiac friendly". They did not list an e-mail address so I asked for a refund and the cost of the postage stamp. I could not believe it when I received the entire refund; even though I had to use the money to purchase another product in the same store, I felt I had won a small battle.

    Did You Know that a little advance work from you can get you a gluten-free Dairy Queen cake? I went in three years ago and explained my allergy to gluten, indicated that I could not even tolerate a cookie crumb coming into contact with my Dairy Queen cake, "Which I loved so much". It would have to be made separately and the person would have to wear gloves when preparing it. The whipped cream topping needed to be pure whipped cream.... and boldly I listed how deathly ill gluten can make me. They used frozen strawberries as the base, had the two types of ice cream and the fancy topping and I have never been sick eating the family Birthday cakes. Their ice cream has never contained gluten and I have tried this in the United States and Canada and have become well known in both stores.

    Did You Know that Campbell's three mushroom, cream of mushroom soup suddenly changed their recipe? We always bought the three mushroom cream soup. Thankfully, my husband now carries a magnifying glass with him when he shops. Without any notice, they added flour to the soup and I have written to them. I received an apology and numerous coupons.

    Did You Know that Catelli now had a "Pasta Freedom" line of pasta products? In the mail in May a small catalogue arrived listing their pastas, numerous recipes and a $1.00 coupon off any Catelli gluten-free pasta product. It is made in a dedicated gluten-free facility and has a web page to visit called catelliglutenfree.ca. There is also a U.S. web site; it took me two minutes at most to send a line to them essentially stating "Good on you Catelli". On June 2nd I received a further $1.00 savings coupon and was asked to tell my celiac friends about their certified site. That made my day!

    Did You Know that manufacturers such as Bob's Red Mill and Pamela's Products test for the presence of gluten as an extra layer of protection? They have websites such as BobsRedMill.com, and PamelasProducts.com, If you find a flour or mix you really like and want to buy it in bulk rather than the small packages, try searching it at Amazon.com.

    Did You Know that the NFCA declared May to be Celiac Disease Awareness Month through their "Our Heroes Within Us" campaign? Celiac disease is no longer a "rare" disease, and though there is still work to be done, we truly have come a long way. Who would have thought that Robin Hood Flour would produce a gluten-free flour in a large bags?

    Every time you talk to someone both in and out of the gluten-free community you are a Hero; we do not choose to follow this restrictive diet because of weight loss. Every week the NFCA will unveil a community member who is having an impact on the lives of those around them.

    DID YOU KNOW: I am still raving about the Allergy Free Restaurant Translation Cards? They really help communicate your special dietary needs in foreign countries. They offer basic phrases in various languages about your gluten concerns, specific ingredients, and preparation requests. They come in Arabic, Dutch, French, German, Greek, Italian, Korean, Latvian, Norwegian, Portuguese, Russian, Spanish, and Swedish. It comes in either paperback or e-book format. If you have a smart phone download the FREE Travel Checklist app to jump start your planning efforts detailing airlines, meals, snacks, hotels, cruises and foreign language considerations. Chef dining cards for gluten-free and celiac/coeliac travel will get you to their web site.

    Did You Know; the top SIX supplements for celiac disease and gluten sensitivity? Melinda Dennis, MS, RD,LDN, nutrition coordinator of the Celiac Center at Beth Israel Deaconess Medical Center and lead nutrition author for CeliacNow.org indicates that a family multivitamin/mineral supplement is a base-line protection for getting a lot of the key vitamins and trace minerals that are not present in your diet. Make sure your supplements are gluten-free bearing the gluten-free label indicating they contain under 20 ppm gluten. Natural does not always mean safe! Look for chelated minerals and gently absorbable formulations, like calcium citrate, minerals that come in oxides like magnesium oxide, are not the most easily absorbed formulations.

    Calcium is really important but it is also easy to overdose. Melinda Dennis says that she tries to get patients to reach their calcium goal through diet and then make up any difference with a calcium supplement. Calcium citrate is better absorbed than calcium carbonate, plus it does not cause as much gas or boating. It should also contain vitamin D and magnesium to help with absorption. Vitamin D: almost everyone needs vitamin D as it is so protective. It helps heal the small intestinal lining, helps with hormone regulation, and helps calcium absorption. It helps prevent colon cancer and is a mood enhancer. It is naturally produced by skin exposure to sunlight.

    B Complex or B12: B vitamins can help with flagging energy and fatigue, since they are important for metabolism, red blood cell production, and tissue repair. Also, when the stomach is damaged, the body cannot absorb vitamin B12 properly, sometimes leading to a B12 deficiency. The B's are water soluble so your body mostly gets rid of anything you don't need. They are good when you are travelling, have high stress, or when fatigued. Be careful though, as synthetic B6 (pyridoxine) taken for prolonged periods at high doses can cause nerve damage.

    Zinc: Many people newly diagnosed with celiac disease have low zinc. This trace mineral is involved in over 200 enzyme systems in the body and is responsible for growth and development, helping to heal wounds and protecting our immune system. It can also help with quality of our fingernails, skin, gums and hair.

    Did You Know That the pharmaceuticals associations in the U.S. and Canada make a directory sized book available to every pharmacy or drugstore in the country? Try going to the pharmacy that you deal with and asking them for their out-dated issue of the compendium and see if they will give you their out-dated copy. It contains the names of the companies producing the drugs and their e-mail or web pages. This is the perfect way to check whether the drug or vitamin you are taking is actually gluten-free. I was taking a drug that was in pill form and made on machinery with other pills containing gluten. Having dermatitis herpetiformis which restricts ingesting gluten I broke out in DH sores in some amazing places - in my ears, back of my knees and chest as well as the places considered normal for the IgA deposits. I itched and stung as I scratched the tops off the lesions and had to go on Prednisone for two weeks. Is there anyone else out there that has had to take Prednisone and found it made them irritable, and as my husband stated, "it makes you really weird and wired".

    Now the BAD NEWS: According to Jason Clevenger, PhD, research editor for Gluten-Free Living, who is a principal scientist with the consulting firm Exponent, Inc., and is the former editor of a Boston celiac support group, there is more evidence that ancient strains of wheat are as toxic to those with celiac disease as more modern types. Researchers harvested immune system cells from thirteen patients with biopsy proven celiac disease. They then tested the response of the cells to ancient and modern strains of wheat, including varieties known as spelt and kamut. All of the strains tested, regardless of being ancient or modern, triggered responses in the immune cells. The CONCLUSION; This report adds to the evidence that kamut, spelt and other wheat varieties should be avoided on a gluten-free diet. They provoke the same immune system response in those who have celiac disease as more modern strains of wheat. "Evaluation of the safety of ancient strains of wheat in celiac disease reveals heterogeneous small intestinal T cell response suggestive of celiac toxicity." That is from a report dated February 14, 2013 by Sulgo T.Gregoin.


    Image Caption: Photo: CC--Dennis Brekke
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    Yvonne (Vonnie) Mostat
    Celiac.com 01/05/2016 - Did you know that an important step for the celiac and gluten sensitive person occurred on September 30, 2014? Jennifer North, Vice-President of the National Foundation for Celiac Awareness (NFCA) delivered the following comments to the U.S. Food & Drug Administration (FDA), Food Advisory Committee on behalf of those living with gluten disorders:


    "My name is Jennifer North. I am the Vice President of the National Foundation for Celiac Awareness. I represent approximately 21 million people who require the gluten-free diet for health reasons including those with celiac disease, a genetic autoimmune disease that could lead to cancer, infertility and recurrent miscarriage and the onset of other autoimmune diseases if left undiagnosed or untreated.
    The NFCA is an evidence-based organization with an international, medical, and scientific advisory council. We just completed a FDA grant to research the impact of gluten in medication. We provide accredited gluten-free training to over 1000 learners from over 180 restaurants and colleges each year.
    Our media campaigns introduced the idea that the gluten-free diet is not a fad, but in fact a medical necessity for those with celiac disease and other gluten-related disorders to nearly a quarter of a billion people thus far in 2014.
    We secured the Associated Press' big story of the day on August 5, the compliance date of the gluten-free labeling rule. We also hosted two free webinars on the topic, one including Suzanne Walker, a representative of the FDA as a presenter. As a passive observer it may seem that life has never been better for people looking for gluten-free options. Despite the growth of the marketplace to over $20 billion dollars annually and the availability of gluten-free food in gas stations and convenience stores, the gluten-free diet is proving to be emotionally and logistically difficult to navigate.
    The gluten-free community lives in fear of food every day. Their concerns have a basis. Research from the Mayo Clinic shows that nearly 70 percent of people with celiac disease, who maintain a gluten-free diet, continue to have intestinal damage from inadvertent gluten exposure. Last week, the NFCA engaged 350,000 people in a social media dialogue about getting gluten in restaurants. Eating remains the most critical quality of life issue affecting the gluten-free community today. A recent study of disease treatment burden found that the gluten-free diet has an equivalent burden as those with end-stage renal failure rate dialysis. I hope you find that as shocking as we do and we find it unacceptable.
    We salute the FDA for finalizing the gluten-free labeling rule which was mandated as part of FALCA and protects consumers whose health is dependent on access to safe gluten-free food. I am here today to ask for your support in seeking clarity from the FDA about references to the obligations of restaurants and food service operators in meeting the requirements of the ruling in order to make a gluten-free menu claim.
    The health of those with celiac disease and nonceliac gluten sensitivity depends on food service operators being educated and transparent. We welcome the efforts of the FDA in acting to protect our interests.
    However, FALCA is designed for packed foods and was vetted by the packaged foods industry. The regulation not only centers around the prohibition of gluten-containing ingredients but also requires the validation that contamination of gluten-free products does not exceed 20 parts per million of gluten residue.
    The FDA's statements in its Q&A and its guidance documents state that while the ruling applies to packaged products, it does expect restaurants to comply. It also states that it may engage state and local bodies and enforcing the ruling in the food service setting. This is problematic because the restaurant setting is not typically closed and well-controlled and predictable system where testing of samples is representative of the overall risk. It is not cost effective for restaurants to test every dish between the kitchen and the table and effective testing for gluten residue requires advanced technical knowledge. With ambiguous language and lack of specific guidance for the food service sector many restaurant operators are holding back on labeling gluten-free items or are using terminology that confuses consumers like low gluten, gluten friendly or gluten-free ingredients.
    To back up what we are hearing anecdotally we launched a survey in which nearly 150 responses were received from a wide variety of operators representing all geographies in the US. The majority of respondents were individual owner/operators, but multi-unit regional chains, colleges and universities and K-12 school districts also responded.
    Our findings show that 89 percent of respondents either believe the ruling applies to them or are unsure whether or not it applies to them, 12 percent report that the gluten-free label rule will change their menu claims and more than a third are unsure what to do with their menu claims.
    While we certainly want to discourage restaurants who are unable to safely and consistently offer gluten-free dishes from doing so, our survey shows that even restaurants who have in-depth knowledge and training and strict controls in place are unclear about whether or not they are able to continue to identify gluten-free dishes to their own customers. We are concerned that this will limit
    accessibility of gluten-free friend and quash the great strides we have made in bringing gluten-free food safety to the forefront of the food service industry by working with the largest manufacturers and distributors in the space, a group of loyal chef ambassadors and partner organizations like the National Restaurant Association.
    Please stand with us as we seek formal guidance from the FDA that will provide a basis of understanding for how to expect food service operators to legally and responsibly serve those who must adhere to the gluten-free diet for medical reasons. "
    Exciting News! The NFCA also has a concise small "Dining Out Tips" card for the celiac that you can get on their web site NFCA Celiac Central. On the right side of the card there is a tear-off section to leave with the restaurant to recommend that they get gluten-free training for the management and staff. Or try their "10 Tips for Resilient Solutions". And while I am on a role regarding information cards, visit glutenfreeandmore.com to purchase Casein-Free Dining Cards, but remember casein-free diets may remove adequate calcium and vitamin D from your diet, and if you have not been diagnosed with autism spectrum disorders, have no further issues as long as you strictly follow your gluten-free diet the casein free diet may not be for you.
    The person who becomes lactose intolerant is the one still eating gluten, where after the villi and microvilli in the small intestine have become so damaged they are no longer capable of catching and breaking down the lactose molecule. The problem usually disappears when a celiac removes gluten totally from their diet thus enabling the damaged villi and microvilli to grow back. Remember that lactose intolerance symptoms can continue for a long time after a celiac has gone on a 100% gluten-free diet. (In some cases the villi and microvilli damage can take up to two years to heal completely—Scott Adams, founder and publisher of this Journal of Gluten Sensitivity.)
    The NFCA is a major advocate for the consumer with regards to better labeling, and regarding medications, "Legislation and regulation can provide the path for ensuring that consumers have the information they need to make healthy choices". Under the Federal Food, Drug, and Cosmetic Act (FFDCA), OTC medications must list inactive ingredients on the container, and prescription drugs must include a description of the medication, which includes inactive ingredients, in the package insert, but although the inactive ingredients must be disclosed, the source of the ingredients and the potential allergens in them do not need to be clearly named. Common food allergens (like peanuts, milk, eggs, soy, gelatin, and fish) can hide in a medication's excipients, which are inactive or filler ingredients used to provide shape or bulk and sometimes to aid in absorption. These allergens do not need to be specifically identified. For example, "starch" can be corn, potato, tapioca or wheat starch, according to Alice Bast, president of the National Foundation fort Celiac Awareness We are advised to stay with the same Pharmacy and work closely with your doctor and pharmacist. If your medication does not have a package insert ask for one, or an information sheet, and read it watching out for the word "starch".
    There are some free websites that can help you or your pharmacist track down details on your drugs. DailyMed (dailymed.nim.nih.gov) allows you access to manufacturers to see full prescribing information, Orange Book helps determine if two products, (a generically named drug vs. the officially prescribed drug name) are therapeutically equivalent (www.accessdata.fda.gov/scripts/cder/ob). GlutenFreeDrugs.com, a website maintained by pharmacist Steve Plogsted of Nationwide Children's Hospital in Columbus, Ohio, identifies which drugs should be safe for those avoiding gluten.
    I also contacted Health Canada, Media Relations Unit (613) 957-2983 with regard to food labeling, not only for pre-packaged foods but also to enquire if we are intending to follow the United States Gluten-free Labeling Rule Clarification. In Canada the Federal Government and Provincial Governments share the responsibility of consumer protection regarding food allergies (www.inspection.gc.ca/food-labelling/eng/1299879892810 - 613-957-2983). The drug safety e-mail and toll-free number is info@hc-sc.gc.ca and 1-866-225-0709. It is Eastern Standard Time so calling from the West Coast needs to be before 3:00 p.m. There is a Canadian Food Inspection Agency for B.C. at (604) 292-5700. They are responsible for enforcing regulations with regards to inspection and labeling of foods in the industry (gluten-free claims, allergen free claims, and policy updates: www.inspection.gc.ca/foodlabelling/cooflabelllingforindustry). The person I am dealing with to try to make sense out of our resolutions is andre.gagnon@hc.sc.ca, and he has promised to get back to me with regards to my numerous questions.
    It was December 2002 when Food & Drug Regulations were amended to make nutrition labeling mandatory on 'most' food labels. It became mandatory in December 2007 to comply with new regulations regarding pre-packaged foods, and that was for small businesses, who now NOTED the fact that Canada's list of priority food allergens differs from that of the U.S.A., Canada's largest trading partner. If you are planning to shop in Canada it is important to familiarize yourself with the differences regarding per-packaged gluten-free food, including wholesale foods.
    Restaurant regulations are provincially mandated in Canada,. That means if you are planning on stopping at an "eat and run" fast food restaurant in B.C. (chains or franchises) its regulations with regards to floured french fries vs. pure gluten-free fries, should be the same as Ontario regulations, as will the oil in which they are fried. You may not be able to find a gluten-free cookie or bar in every franchised store; that is their prerogative. I do not know if every Woods Coffee & Sandwich Shop in the U.S.A. carries gluten-free sandwiches, buns and cookies but they do in the Washington area. The old rule of "asking" and "Caveat emptor" applies. If you don't ask how the sandwiches are made you run the risk of being "glutened" at a health cost to you.
    The U.S. may also have concerns about packaged foods coming into the United States from other countries such as Mexico, India and China having their ingredients listed in the language of their native country, and your food choice "gets lost in translation". I did address that inquiry to our local bodies here in Canada and also to Claude Gagnon at the Ministry of food and agriculture in Ottawa, also listing training for restaurant staff, separate sites for preparation, precautions regarding cross-contamination and depending on how long their "leave a message" line was available to me I kept going.
    In 2012 detailed regulations officially mandated and greatly clarified the disclosure of priority food allergens in foods offered for sale in Canada. Any food ingredient sourced from a 'priority food allergen' must declare the allergen by its official name, either within the list of ingredients or in a "Contains" disclosure at the end of the ingredients list on the product label. This necessitates reading the list of ingredients with its declaration of the allergies and reading down to, or searching for, the disclosure at the end of the ingredient list on the product label. I have not found that all products list the "contains" disclosure at the end of the ingredients list, but do place it somewhere on the product label, which can, when speed shopping, cause errors.
    This is why you have to watch thickening agents, sauces, soy sauce (switch to Tamari) nearly everything needs to be carefully checked out. Corn starch is a great thickener for gravies or sauces. There is a product here in Canada called Veloutine, a sauce thickener, which comes in brown or white and is gluten-free. You are better off switching from sugar to honey whenever you can as sugar depresses the immune system and encourages the growth of candida and the unhealthy bacteria. Honey supports the immune system and the good bacteria but does not support the unhealthy bacteria and candida very well.
    Did you know that some anti-caking agents may contain wheat? Check your herbs and spices, especially if they come in a counter friendly rack. Watch the ground spices in particular and avoid the ones which state "Contain wheat products" warning. The Gluten-free Watchdog founded by Tricia Thompson (https://www.glutenfreewatchdog.org) has a new report on spices; it will also tell you the difference between the words 'spices' and 'seasonings' and how it might affect a celiac. Agriculture & Agri-Food Canada actually has a "Gluten-Free Claims in the Market Place" brochure which is free of charge (www.agr.gc.ca/food/glutenfree). Different statistics are as confusing to us as they are to you. Mother Earth News (www.motherearthnews.com) say as of September 2013 the gluten-free products in Canada were a $90 million dollar enterprise, and in the U.S.A. the market was valued at $4.2 billion and climbing. That is not very far from the Rockville, MD based Research Firm which projected $5.5 billion by 2015.
    Did you know that with regards to foods that contain casein not all celiac people need to go out and buy coconut milk or soy milk? Scott Adams, the founder of "Celiac.com," says "the fact that lactose intolerance is frequently a side effect of celiac disease. Celiac's who eat gluten become lactose intolerant after the villi and microvilli in their small intestine have become damaged, and are no longer capable of catching and breaking down the lactose molecule. He states that the problem usually disappears when celiacs remove gluten from their diet. Which allows the damaged villi and microvilli to grow back. Lactose intolerance however, can continue for a long time after a celiac has gone on a 100% gluten-free. It "can" in some cases up to two years to heal completely. In most cases it takes between six months and a year.
    Another site for people who are gluten-free and dairy free, other than our own web site, is About.com. Nancy Lapid explains the connection in language that you can understand. These two references contained the best descriptions of the celiac disease/lactose intolerance link. It is not something that you can diagnose and handle alone. Those of you who have been taking OTC "Lactaid" long before you were diagnosed with celiac disease need to be evaluated soon! Guidance from a qualified physician or nutritionist is strongly advised. You will either hear or read that casein is like a drug and can cause withdrawal symptoms and a list of complaints that will elevate your blood pressure! Get your facts straight before going on an elimination diet or adding dairy-free to your already difficult diet.
    Children with autism frequently seem addicted to wheat (gluten) and dairy (casein) products. Some people with autism and schizophrenia may be incompletely digesting wheat and dairy proteins. These incompletely digested peptides are then absorbed into the body and bind to opiate receptors altering behavior and other physiological reactions. Common symptoms of withdrawal toxification from gluten-derived opioid and brain neurochemical imbalances. The evidence suggests that about 70% of celiac patients will experience these symptoms when starting a strict gluten-free diet. There is the addictive nature of gluten which is often overlooked. There are common symptoms of withdrawal or detoxification from gluten-derived opiates and a brain neurochemical imbalance.

    Yvonne (Vonnie) Mostat
    Celiac.com 03/01/2016 - Did you know that even products all scientists agree to be safe may not be because when researchers experiment in a contained laboratory, they find the product to be safe...and we believe them don't we? The reality is, several of those products, like quinoa and buckwheat can often be cross-contaminated because they are processed and packaged in plants that also process regular wheat. If you visit one of these facilities and see the flour dust everywhere you will notice workers in white coats and masks to prevent dust inhalation. The employees look like they are walking around in astronaut suits, and it becomes clear that anything else processed in that plant could be contaminated with wheat.
    Whenever you have the choice to pick foods that come from facilities that are 100% dedicated gluten-free you should take it. Some foods, like Pamela's and Bob's Red Mill actually test their products twice for gluten. King Arthur Gluten Free Flour say that they test and re-test their entire line of gluten-free products, and have an on-line chat with the baker's hot line: 855-371-2253. Namaste Foods also have their gluten-free foods made in a dedicated facility that is free of gluten, wheat, soy, corn, potato, peanuts, tree nuts, dairy and casein. 1-2-3 Gluten-Free Products state "Made in a dedicated allergen-free facility (NO gluten, wheat, dairy, casein, peanuts, tree nuts, eggs and soy)." Don't just check whether an item is gluten or wheat-free, check whether it is made in a dedicated facility.
    It makes sense that companies that manufacture their products in a dedicated facility may price their products a little higher, and the cost will likely be passed on to the consumer. Pro-Cert indicates that while the expense to produce products under these dedicated protocols offers little versatility from year to year, because it is a closed loop system, but consumers shouldn't expect huge spikes in the price that never come down and only go up. I dream of the day when all gluten-free products will be made in dedicated facilities!
    Dedicated Facilities that Produce Gluten-free Oats
    Montana Mills
    Gluten-free purity protocol confirmed July 17, 2015. Oats are planted only on fields that have grown gluten-free grains for four years. Pure gluten-free seeds are planted. Fields are hand-rogued (You do know what roguing is don't you? Another grain flies in on the wind, or is trampled under foot from another field. Fairly easy to spot in the field of ripened wheat the farmers in my husband's family tell me.) to eliminate possible contamination. The grower is responsible for roguing, but is inspected by a Montana Mills inspector prior to harvest to ensure roguing was thorough and the fields are clean. Oats are transported in certified clean dedicated equipment to a dedicated facility. Redundant Elisa R5 testing is conducted before and after processing. Since 2012 Montana Mills uses the Elisa G12 approved testing.
    Avenin Foods
    Current gluten-free purity protocol confirmed July 21, 2015. They use only pedigree seeds. Growers attend workshops to learn requirements for gluten-free oats. Fields used to grow gluten-free are required to follow a specified crop rotation protocol. The fields are surrounded by isolated strips. All machinery and equipment is either cleaned or dedicated. All oats are processed in a dedicated gluten-free facility. Oats are tested using R5 Elisa 5 methadology.
    Ice Cream Slip Up
    I became very ill two weeks ago upon purchasing a soft ice cream, in a bowl of course, from a new store near our home. I should have realized that Wadden System Frozen Treats (www.icecreamflavors.com) coming from one machine but making over 20 flavors of ice cream, came from a flavor syrup that was added to the plain vanilla in the machine and that is how they got the flavored colors of ice cream. It contained wheat, and being a bit of a pig over ice cream I ordered a medium.
    The nausea came first, then the diarrhea. Within twenty-four hours my scalp was covered in dermatitis herpetiformis lesions, water filled blisters that beg to be itched, and when you comply the burning in your scalp and thighs makes you so miserable you wished you had never even thought of ice cream! I went back of course, and I e-mailed the Wadden Company and suggested they notify the franchise people of what the bottles of flavorings contain. This did not help my illness or itching though, but we learn, oh goodness I hope I learn!
    If a food allergen isn't labeled with all the proper food allergens and makes its
    way into the store shelves, the food may be subject to a recall according to FALCPA (Food Allergen Labeling and Consumer Protection Act of 2004) requirements, and you can report such foods. "Get the Facts", the USDA, U.S. Department of Agriculture, list the new allergen labeling laws that include the top eight food allergens.
    Double Check these Foods
    Imitation Sea Foods, such as imitation crab meat, imitation bacon bits, licorice, flavored coffees and teas, processed foods, some chocolates and bars, salad dressings, hot dogs, sausages, deli-meats, sauces, marinades, seasonings, and soy sauce.
    Medications
    Do what I did, take the form provided by the National Celiac Association for Pharmacists to your pharmacy and tell them you are either a celiac or gluten sensitive and ask them to find out if your medications contain gluten.
    Gluten-Free Oats
    The Gluten Free Watchdog supports the use of gluten-free oats by the celiac disease community that are produced under a purity protocol. At this time we do not support the use of regular oats that are cleaned at the "end" of production via mechanical and/or optical sorting to be "gluten free". Before we can support the use of oats "cleaned" in this manner to be gluten-free we must be provided with thorough testing data. We can then compare this data to the thorough testing data provided to us for oats grown under a purity protocol."
    The Gluten Free Watchdog, who work very hard to keep pushing companies with regards to the safety of oats, had a meeting with General Mills in July to discuss gluten-free Cheerios. Those involved with testing of the oats in Cheerios—Medallion Labs were also present. Marshall Gluten Free Milling and Pro-Cert, (Michael Marshall, President and CEO of Marshall Gluten Free Milling (www.glutenfreemilling.com) sent the Gluten Free Watchdog a letter indicating that they knew it was time to make a difference in a segment of the marketplace that needs some help. What does Marshall Gluten Free Milling do? They are the world's first company that provides ingredients to manufacturers that are produced on third party Certified Gluten Free FARMS by Pro-Cert a worldwide leader in third party organic certification.
    It is a program that closely mirrors organic certification. Each farm must be free from gluten-containing products for two full years and on the third year of production the crops can be marketed. No gluten-containing product can be stored, handled, transported or conveyed with any infrastructure or equipment on the farm. Marshall gluten-free Milling Staff then control the dedicated trucking to a gluten-free only certified cleaning facility where the product is cleaned and sized to maximize quality. The oats are then shipped in a dedicated gluten-free truck to a third party certified gluten-free mill (GFCO, Pro-Cert, etc.). So the mill, cleaner and farm are all certified. The crops available right now on this program are organic oats and flax. Interest has spread to non-organic producers as well. They are expanding their offerings to lentils, peas and possibly quinoa. They need a sustainable crop rotation for the producers in the program. Primarily right now the focus of their ingredient marketing is oats as this is where the 3rd party certification of the farm is most crucial to developing a sustainable gluten-free crop rotation.
    Michael Marshall was asked about General Mills announcing that five varieties of Cheerios were to be labeled gluten-free. The company is using regular oats cleaned at the "end" of production via mechanical separation. According to General Mills there are not enough oats grown under a purity protocol to produce Cheerios. He was asked, based on his industry experience, did he feel that mechanical/optical sorting was sufficient to ensure the gluten-free status of oats. He stated that General Mills was a trusted brand who value their name, and have done their homework on the process. But he also stated that mechanical and optical sorting equipment has been used for quality control for years as well as for food safety precautions. It is not new idea, has come a long way, but he thinks that even General Mills would have to agree it does not reduce the risk to zero. Michael Marshall is concerned about the dust control system used by General Mills. In his opinion, contaminated conventional low cost oats in gluten-free foods is risky.
    After Tricia Thompson of the Gluten Free Watchdog asked if his program guaranteed 100% pure gluten-free oats? He said, "Generally speaking, there are always going to be anomalies." However if you look at the protocols in our program there are standard operating procedures in place. These procedures include: Planting seeds that are verified pure. Using only gluten-free planting equipment. Using buffer strips around the field – At harvest, the crop within the buffer strip cannot be binned with the gluten-free product—this protects the gluten-free crop from outside contamination. Strip testing every load that comes off the field before it is binned. Sending a representing sample from every bin to the lab for testing using the R5ELISA R7001 assay (testing prior to the crop being shipped to the mill. Testing at the mill before the crop is unloaded. The bottom line being they are testing at various steps to find gluten through the entire production of the crop to mitigate or eliminate the risk of contamination before it even gets to the mill. Once at the mill hi-tech sorting or mechanical separation will be for quality versus the only fail-safe measure to assure removal of gluten. The farm will be required to be certified gluten-free by Pro-Cert. They have 25,000 acres of both organic and conventional farmland under the certification program that will be available for the market this October. There are farmers lining up to get on the program and they have not even marketed it yet. It is a big market to supply and I believe we can all benefit.
    Of course they want to follow safety guidelines! The celiac population is big business and I thank the Gluten Free Watchdog for working to develop a safety protocol for oats and working hard to obtain purity so that we can safely eat food without getting sick. But I know there will be a price to be paid for purity and safety, and it has to be passed on to the consumer, and I think there should be more tax breaks for the celiac population. AND, that is another place that the Gluten Free Watchdog and FALCPA (Food Allergen Labeling and Consumer Protection Act of 2004) can help us with keeping the costs down. No-one should have to be penalized out of their pocketbook for having a gluten sensitivity or severe gluten allergy.
    My goodness, in Great Britain tax breaks are considerable for anyone who has diabetes, celiac disease or many notable food allergies. They do not decide that you have to use a certain medication, a generic brand, because the brand prescribed by your doctor is not listed under Pharmacare like they do in British Columbia, and, in Great Britain, as soon as a woman becomes pregnant she receives free vitamins for her unborn baby and all costs during her pregnancy are covered by their Medical Insurance Coverage. Dental, glasses, and money for diapers and a clothing allowance for the first three months of the babies life are paid for. We in the United States and Canada are so far behind Europe and the Great Britain in our health coverage. I think as a celiac and somone who has multiple allergies that require severe diets, some assistance and tax adjustments should be available more than the paltry difficult to monitor cost adjustment program that is in place today in our two countries! I know, my "Bandwagon", but one you should get on board too, and so should the NFCA.

    Daniel Cojanu
    Celiac.com 05/10/2016 - As we all know, traveling with celiac disease can be somewhat challenging. Trying to avoid situations of contamination can be quite difficult, yet we accept this challenge so we can go about a normal routine which in my situation, includes traveling. My wife and I who travel quite often do enjoy a good cruise due to the relaxing atmosphere and great care we receive for my dietary issues. Our experiences on Princess Cruises has been very positive and clearly, they take dietary issues quite seriously.
    Unfortunately, not so much with Oceania Cruises. First of all, this experience is based solely on my recent trip. I suspect some other folks with celiac may have had a positive experience. That's great. This article is based solely on how I was treated by this cruise line in August of 2015.
    Oceania insists that any request for special diets be submitted by the travel agent. Not sure what happens if you book online.
    Once on board, the person in charge of special diet requests met us at dinner and explained we would get a menu in our mailbox every evening. We are to circle our choices and bring it to the desk by 8:30am. We made the mistake of going on a tour and not having it in until noon and guess what? Yup, you order off the menu.
    After this discussion, I was directed to dinner choices that could be prepared gluten-free. I was surprised to see my dinner entrée loaded with croutons. O.K., first day shakedown, let's see what happens. Strike 1.
    As we all know, buffets can be dangerous but I attempted to try and see if they had any gluten-free foods available. I selected a breakfast item that was clearly battered and asked the server if this was gluten-free. He looked somewhat quizzical and said "yes". Strike 2. I then asked for gluten-free toast. It took a full 15 minutes for them to toast 2 pieces of bread. Strike 3. Later in the cruise, we stopped for lunch at the poolside café where I ordered a sandwich with gluten-free bread. "We don't have gluten-free bread on board" was our waiters' response. After I indicated that was surprising since I have it at dinner nightly, he finally went off and secured my lunch. Strike 4 ?
    I could go on and on but I will spare you the rest. Oceania is a high end cruise company with prices to match. Princess on the other hand was exemplary. Once your request is in, you receive an email with a list of gluten-free menu items that will be available. If you want gluten-free beer, this is also offered albeit at a price. Every evening, the maître d comes by so you can order for the next evening. Clearly, they take people with dietary issues seriously.
    Why the disparity? I believe it's what I encounter as many restaurants. Since gluten-free dining has become the latest fad diet, I honestly believe that many establishments (and cruise lines) don't feel the need to take proper care. My suspicion is that they just look at gluten-free requests like "oh good, another one of them" and don't take it seriously. I guess my final advice before selecting a cruise would be to see what the initial reaction is to your request. If they respond like Princess, and I suspect other cruise lines, I would at least look carefully at booking a nice vacation. Would I go back to Oceania? I would not. I have put my concerns into writing to them and two months later, no response. My travel agent also followed up about this situation, again, no response.
    Traveling with celiac is difficult enough, and I hope that certain companies will begin to take us more seriously.

    Sarah  Curcio
    Celiac.com 05/24/2016 - How many of us have suffered from cross contamination? Most celiacs have felt the side effects of getting gluten in their food. If it is not your own kitchen, utensils, pots or pans it can be a bit nerve racking. It is not only extremely unpleasant, but unhealthy to our intestines as well. It can cause damage that can be very detrimental in the long run.
    This is exactly why the gluten-free label is particularly important. This gives celiacs a sense of safety, like a security blanket. However, how is that labeling decided upon? What certifications are really used? What standards are considered to ensure that it is 20 parts per million (ppm) or even less? Just think about the danger that can occur if something has to be recalled. For example, let's take a look at General Mills Cheerios versus Udi's Gluten-Free Foods.
    Now, Udi's is certified by the Gluten Free Certification Organization (GFCO), which is an industry program of the Gluten Intolerance Group (GIG.) Whereas Cheerios, takes the oats, used to make the cereal, and puts it through a proprietary, mechanical system. This is supposed to remove any cross-contamination from wheat, barley or rye, according to General Mills. How safe is this for individuals with celiac disease? This is why standards are very vital.
    Now, the GFCO requires that all finished products' ingredients, using their logo, contain 10ppm or even less of gluten. It requires a stringent review process, in order to gain approval. Plus, barley-based ingredients are absolutely not allowed, under any circumstances.
    Then, you look at Cheerios and the differences are as plain as day. Recently, there was a major recall of 1.8 million boxes due to an error where a gluten ingredient was accidentally added. General Mills issued a recall of some Original Cheerios and Honey Nut Cheerios cereal because some boxes were labeled as gluten-free but actually contained wheat.
    This is absolutely not safe for the celiac community. This improper labeling can be dangerous and there are no certifications or review processes like the GFCO. The thought of becoming ill from the cross-contamination is not on any celiac's to do list. Having certified oats versus regular oats is safer that simply having the wheat washed out. The oat fields are way too close to the wheat fields.
    In the end, which would you rather purchase? There is Certified Gluten Free Foods versus just gluten-free foods. Think about your villi because they really should be up and not down!
    References:
    Udi's Gluten Free - FAQs. Retrieved from: http://udisglutenfree.com/faq/ Gluten Intolerance Group - The Gluten-Free Certification Organization. Retrieved from http://www.gfco.org/ CNBC - General Mills recalls 1.8M Cheerios boxes for allergens. Retrieved from http://www.glutenfreeliving.com/gluten-free-foods/diet/gluten-free-cheerios/ Gluten Free Living - Gluten-Free Cheerios. Retrieved from http://www.cnbc.com/2015/10/05/general-mills-recalls-cheerios-for-allergen-issue.html

    Yvonne (Vonnie) Mostat
    Celiac.com 01/11/2017 - Did you know that Advertising has "Cottoned onto us?" In December all the magazines are about baking, foods, cakes and bakes, candies and calories. If you are not aware of what "Cottoned up" actually means, it means that even if we have celiac disease, gluten sensitivity or dermatitis herpetiformis, they know that in December, prior to Christmas, we are geared up to baking tasty, sweet, gluten-free treats. And in January we are into healthy eating, like natural soups, low calorie warm and nutritious eating, cost saving ideas, because we have just gone through Thanksgiving gluttony and Christmas eating.
    At one time we celiac people did not have the options that we have today. It was white rice bread from the freezer of the store, full of frosty tops, and vague cookies that cost $3.00 each. Now we have so many options we can get fat too, starting with Thanksgiving right up to New Year, when the new magazines come out with calorie cutting ideas, weight loss regimes, and a stringent diet!
    Did you know that celiac disease affects people differently? According to the The University of Chicago Celiac Disease Center: "There are more than 200 signs and symptoms of celiac disease, yet a significant percentage of people with celiac disease have no symptoms at all. However, people without symptoms are still at risk for some of the complications of celiac disease". For example, my 19 year old grandson's girlfriend has celiac disease, and she likely had it all her life. She was tested for celiac disease because she had "tummy aches before I write exams". That was it! Fortunately she had a bright mother who took her to the doctor and asked for the simple blood test for celiac disease. Sure enough, after doing the blood test and undergoing the biopsy of the jejunum, she had celiac disease.
    She was not skinny because she was 18 and growing, she was skinny because of malabsorption and eating her daily breakfast of cinnamon toast, and her usual lunch of peanut butter and jelly sandwiches. I am a little wary of the biopsy of the jejunum because as a nurse I found several discrepancies in the testing process. I have seen where a gastroenterologist who did failed to biopsy the correct area and told patients that they were negative for celiac disease. The patients became quite ill and the test was repeated by another gastroenterologist, and the test proved positive for celiac disease. In other words, the two patients did indeed have celiac disease.
    Did you know that the Head of dermatology at the University of British Columbia recommends Dapsone as the drug of choice for clearing up dermatitis herpetiformis? It is called the “Golden Standard” of treatment, which he teachers to all his students of dermatology. I had three biopsies of the lesions on three different places in my body. It was not until the fourth biopsy that they acquired a Positive for dermatitis herpetiformis. It is very difficult to obtain punch biopsies of the DH. But if they put you on Dapsone for four days the lesions begin to clear up almost immediately. It took longer for the lesions in my scalp to go away, around six month, and four days for those on the other parts of my body to disappear. And they were so itchy (as any of you with DH know) that I actually contemplated cutting all my hair off. I tried Quellada liquid thinking it might be fleas, bed bugs, or some other strange skin disorder. "A little learning is a dangerous thing", that is what they say to all nurses.
    Those of you who are newly diagnosed with DH and placed on Dapsone, please remind your doctor if he has not already told you that Dapsone can cause anemia. I was advised to take 2,000 Units of Vitamin C daily because it helps significantly with the anemia.
    According to an article by Lisa Fittterman in the Winter 2016 issue of Allergic Living magazine, a 28 year old California Mom was stymied by her child's reactions and celiac outbreaks because they are so vigilant about reading labels when shopping. The culprit was a new generic controller inhaler for her asthma. The Mom looked up the medication on the Internet and saw the word, "Starch". She says the drug turned out to contain gluten as an additive. She hit roadblocks at every turn.
    With celiac disease now affecting 1% of the people in North America, "drugs can present a distressing unknown". What is an excipient they ask? Inactive ingredients used as binding agents tent to give bulk and allow them to absorb water and disintegrate. They are derived from foods such as corn, potato or wheat starch. Independent investigations have shown that wheat starch is used less frequently than the other two because it doesn't bind well." When you ingest a new drug without knowing what it contains it is like walking down a road blindfolded says Sue Newell, the Canadian Celiac Association's manager of operations. "We teach people how to read labels and cut through jargon to identify every ingredient - but with prescription drugs they can't do that...they may need to take drugs, but they don't feel safe."
    The US. Based National Foundation for Celiac Awareness (NCA) released in the Fall of 2014, almost 25 percent of the 5,625 people with celiac disease and gluten sensitivity reported having experienced gluten-related symptoms to medication. Patients and health–care providers said this has led to anxiety and non-compliance in taking drugs. Both Canada and the U.S.A. Food and Drug Administration have national standards of less than 20 parts per million (ppm) of gluten for a packaged food to claim to be gluten-free, but the requirements for food labeling do not apply to prescription or over-the-counter drugs. In May 2015, the FDA denied the request of a citizen's petition to either ban gluten as an inactive drug ingredient or require that its presence be labeled. The FDA said that "No oral-drug product is expected to contain more gluten than the amounts potentially present in foods that can be labeled 'gluten-free' under the FDA's food-labeling regulations."
    It is far from an official requirement in Canada. The Canadian Food and Drugs Act sets the regulations for labeling gluten and allergens, but the focus has been far more on food. A Health Canada spokesperson says that the 2014 plain-language labeling initiative additionally makes it necessary for pill package inserts to list ingredients. But Newell of the CCA says these listings are not as transparent as they sound. Though the protein is not often present in our medications, the bad news is that finding out for certain may take the skill of a detective or a sleuthing pharmacist.
    It is time for the celiac and gluten sensitive community, to unite and fight, write letters, speak to their pharmacists and repeat the fact that the person ordering the drug is "A brittle celiac," and all drugs need to be researched by the pharmacist prior to filling prescriptions.
    Steve Plogsted, a pharmacist with a special interest in tracking gluten, suggests: "Watch for the word 'STARCH' as an excipient on a medicine, as it's the only likely culprit to contain gluten. If the word is there, try to drill down through the manufacturer as to what kind of starch. If it is wheat, you will need to avoid it."
    One man took a stand for gluten-free drugs. Michael Weber was diagnosed with celiac disease on 2004, and immediately adopted the gluten-free diet to protect his health. BUT, after taking a generic for only a few days, the resident of Eastchester, New York, was distressed to find he was again developing symptoms, such as the dermatitis herpetiformis skin rash he had incurred before the condition was discovered. It turned out the pills contained gluten as an inactive ingredient. Shocked to find this undeclared exposure after he had been so careful, Weber contacted the FDA, but he was informed that the manufacturer wasn't braking any rules by not stating gluten's presence overtly. In 2008, Weber filed a citizen's petition requesting that the FDA either ban gluten outright in medications, or require manufacturers to label for the protein. Then, for seven long years, he got politicians to write letters of support, and made follow-up inquiries, but he received no replies.
    Finally, in 2016 the U.S. consumer protection group Pullback Citizen filed a lawsuit to elicit a response from the FDA. Last May the agency issued a 21 page decision that denied the request for a ban and stated that manufacturers already needed to identify gluten as an intentionally added inactive ingredient to any drug that is taken orally. The FDA said it did, however, plan to issue "draft guidance" for industry regarding gluten in drug products, but no time-line was given. FDA spokesman Stephen King explained the decision in an interview saying that if people with celiac disease are doing well on a gluten-free diet, they "should" not be harmed by the very low amounts of gluten potentially present in oral drug products. Conversely, if they aren't doing well, "we would expect {them} to consult with [their] physician about ways to further reduce overall exposure to gluten. Such efforts might first focus on the diet as the most significant potential course for oral gluten exposure."
    But Katie Einspanier, Weber's lawyer through Public Citizen, criticized the ruling as nothing more than a super-technical reading of the petition since the FDA's response focused on the possibility of gluten itself being an inactive ingredient. "The most likely scenario for gluten in drugs is that gluten is simply a natural component of another inactive ingredient and not separately added as an inactive ingredient." Weber is considering whether to draft a new petition with more precise language. We will keep you informed regarding this one man's fight for gluten-free drugs. He needs to be cheered, and we all need to sit down at our computer and help by writing to pharmacists, the FDA, and the College of Pharmacy.

  • 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