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Celiac.com 05/21/2022 - “My daughter has celiac disease. I do the best I can to provide her with gluten-free food, but I don’t know everything that has gluten in it. I give her these pills from the health food store, because they say they block gluten. I want to make sure she is healthy. Am I giving her enough of these pills?” What Is The Antidote To Questionable Information? We all know the saying, “if something sounds too good to be true, it probably is.” When this question was asked by a participant at one of our education presentations, we informed her that while research was underway, at this time no pill could block gluten. We said that if and when such a discovery was made, it would be scientifically validated and widely available. We offered her assistance with her questions about the gluten-free diet. Many people who live with more commonly known medical conditions like cancer, heart disease, and diabetes have numerous ways to verify the accuracy of the health information they acquire, including a simple call to their doctor’s office. So what happens when the patient knows more than the doctor? Many celiacs face this scenario, and are not always certain how to verify information they hear about celiac disease in a support group meeting, in a newsletter or even in the doctor’s office. How can celiacs learn if the medical or dietary information they’ve acquired is “too good to be true?” A healthy dose of skepticism is the antidote to the information about celiac disease that seems too good to be true. Awareness Is a Double-Edged Sword Awareness of celiac disease has led to a greater appreciation of the needs of people on a gluten-free diet, as well as the importance of correctly diagnosing the condition in a timely manner. This is a very positive development, as it will encourage physicians to become more knowledgeable and diagnose more people. However, the heightened interest in celiac disease has also lead to the increased dissemination of inaccurate information which could dissuade symptomatic people from receiving the highest standard of medical care for diagnosing celiac disease and the most up-to-date information on the gluten-free diet. Of course, we’d all prefer a world with a greater level of awareness about celiac disease. But it can be helpful to understand how this would bring about more opportunities for misinformation as well. Vital Signs: Evaluating Information about Celiac Disease We already understand how important it is to be skeptical about much information in our daily lives, and it is important to apply this skepticism to celiac disease as well. There are many questions you can ask about the information you’ve learned in order to authenticate its source and verify its content. Consider the Source: Speaker Who is delivering the information? What interests do they represent (who pays their salary)? Are they presenting information that is representative of their expertise? Do they share information about their conflicts of interest (an individual who works for a testing company that is speaking about testing for celiac disease, for example)? Is the person honest about what they know and don’t know? Does the individual presentation that has been scientifically valuated (evaluated and published in a peer-reviewed medical journal) or do they present information that is based on clinical experience and individual judgment? Are they telling you which are which? Consider the Source: Published Article/Website Where does the article appear—is it a support group newsletter, your local newspaper or the New England Journal of Medicine? Is it an editorial, which expresses an opinion or an article which presents factual information from a third party’s point of view? What type of review process did the article go through before it was published? Is the medical journal article a research study, a case report, or an editorial? A research study goes through the highest level of scrutiny. Was the study well designed— prospective, controlled for bias, and an adequate number of patients? Is the website a .com, representing a commercial interest, a .edu, representing a university, or a .org, representing a non-profit? Is the site sponsored by a commercial interest? Do they present information in a way that is consistent with the guidelines on evaluating an article or speaker? Is the information presented an interpretation of the original source material, or the original material itself? Consider the Source: Media Television and radio stories on any type of medical topic are usually to report some type of breakthrough or discovery. Interviews with patients will often depict extremes, either the most desperate situation or a “miracle” recovery. Accuracy, while important, is seldom achieved in a 30 second television story or a 60 second radio spot. Consider Content and Context Is there an established, credible resource you can use to verify the content of the information you’ve received? Is the resource unrelated to the source of your information? Was the information presented in a way that you felt less than capable, afraid or anxious? Was the information presented in the context of selling a product or a service, or to encourage you to take a particular course of action? Consider Uncertainty When a patient is evaluated or diagnosed with a medical condition, it is often difficult to realize that treatment decisions have to be made without perfect information. The level of uncertainty during this process can vary. For instance, a knowledgeable physician knows that there is a high degree of certainty when a patient has a negative tTG test that it is accurate and the patient requires no further evaluation for celiac disease. However, the same physician understands that a positive tTG test result does not bring that same high degree of certainty—that there is less than a 50% chance of the patient actually having celiac disease. However, this probability is high enough to suspect celiac disease and perform an endoscopy. For a person diagnosed with celiac disease, evaluating the gluten content of foods can be an uncertain process. While there are numerous resources available, and a new food labeling law that will take effect in a year, there is still uncertainty. Food lists change after they are printed, what happens in a restaurant kitchen may not be related to the in-depth instruction that a patron provided about his/her meal, and celiac legends about foods that are safe or unsafe abound on list servs and in support groups. Check, Check, Double Check Verifying the quality of the information you receive about celiac disease is not unlike verifying the gluten-free status of your meals; double checking ingredients, or information is always important. Most of the time, you’ll find that the people, companies and organizations that serve the celiac community are doing so with the highest level of professionalism and personal integrity. But it’s always good to make sure. A little bit of gluten, like a little bit of bad information, can be detrimental to your health.

Celiac.com 01/30/2012 - Over the last decade, many companies are adding labels to their products like: "gluten-free," "low gluten," "no gluten," "no gluten ingredients used," "naturally gluten-free" and "celiac friendly." To many celiacs and individuals with gluten intolerance, the idea of companies labeling products without gluten is refreshing. To experts on celiac disease and gluten intolerance, the gluten labeling currently happening in the United States is frightening. United States versus Other Countries' Gluten Free Labeling Laws Many countries diligently regulate gluten-free labeling. A few months ago, an exchange student from Italy stopped by our Gluten Free Specialty Market and told me that she was horrified by the gluten-free labeling laws in the United States. For the first time in her life, she was being contaminated by products that weren’t safe for her to eat. After purchasing bakery products that were manufactured in a non-dedicated gluten-free environment, she became deathly ill for more than a week and told me she was only just starting to feel like she could travel more than a few steps from the nearest restroom. “I’m afraid to eat anywhere,” she told me, “Every time I eat out in this country, I get sick. I can’t wait to be home where I don’t have to worry like this.” This is not the first or even the 100th time I’ve heard a story like this. For 4 years, I have heard story after story of individuals eating what appeared to be a ‘gluten-free’ product and getting violently ill. So what does gluten-free mean? What Does Gluten Free Mean? According to the FDA, as of September 2011, gluten-free labeled products should (a) not include ingredients from gluten or gluten derivatives and ( maintain a status of less than 20ppm of gluten for all gluten-free labeled products. For more information about the FDA’s Gluten Free Food Labeling Request, go to: Open Original Shared Link Though many companies try to follow the FDA's current gluten-free recommendation, mistakes are often made. In food manufacturing, companies are driven by supply and demand. Right now, the supply of gluten-free product options is low and the demand for gluten-free products is high. For this reason, companies are jumping on the band wagon trying to produce options to fill the demand. Some companies are started by an individual that is gluten intolerant, gluten allergic or has celiac disease. Other companies are producing gluten-free products solely for profit. While companies do their best to provide gluten-free products to the public, they often don’t understand what gluten-free actually means. Common Mistakes Made by Product Manufacturers While product manufacturers are trying to produce safe products, mistakes are often made. Most mistakes occur due to lack of education regarding what "gluten-free" really means and what it takes to prevent cross-contamination. The Product is Gluten Free Enough for Me Many gluten free products are created by individuals that have celiac disease, gluten intolerance or a gluten allergy. Many of these products are made to be safe enough for the individual that made the product. This is a problem because, experts like Dr. Alessio Fasano from the Stanford Celiac Center, estimate that only 1% of the population diagnosed with celiac disease is aware that they are being contaminated. In other words, contamination may be affecting the health of an individual with celiac, even when they are not experiencing blatant symptoms. Example 1: A brownie company produced their product in a facility that also produced regular gluten products. The company is asked if they test their products for gluten, and they answer, "no, we don’t need to. If the product wasn’t gluten-free someone would have let us know by now. We’ve been in business for 4 years." Example 2: A pie company reports that their product is "celiac safe," and the company reports that they use a flour that tests above the safe range of 20ppm and the pies are made in a facility that produces gluten. Research presented by the Celiac Sprue Association has shown that facilities that use gluten flours generally create products that contain gluten. Heterogeneous Mixtures Versus Homogeneous Mixtures This problem sometimes happens when gluten-free companies are trying to keep the price down on their products. Flours produced in facilities that produce gluten are often times cheaper than flours produced in dedicated facilities and tested on import and export. Companies often believe that when you mix one flour that’s above 20ppm with another flour that’s non-detectable at 5 or 10ppm, then the outcome of the flour blend will be below 20ppm. This is not true because flour mixtures are not homogenous, they are heterogenous. In other words, if you have a chocolate chip size morsel of gluten in one bag of flour, even if you mix it with a another flour that doesn’t have any gluten in it, the morsel of gluten still exists. Therefore, the flour is not gluten-free. Example 1: Customers were reporting contamination after consuming a specific product from a gluten-free bakery. The facility was visited and it was found that both flours and corn meal were being made in facilities that produce gluten. Additionally, those facilities had reported that their flours routinely test above the safety zone of 20ppm. When the bakery was questioned about the flours, it was reported that they knew that some of their flours were above 20ppm but they didn’t use very much of them in the flour blend so it shouldn’t matter. If a Product Contains Gluten, it Contains Gluten If you put gluten in a product, it contains gluten. If your tests show results below 20ppm, they (1) might be read or performed inaccurately, (2) multiple samples could result in discrepancies (in other words, some samples may show higher than 20ppm and others lower). Example: A barbecue sauce has gluten as an ingredient and states "gluten free*" on their product label. At the bottom of the label the product states: "*tested below 20ppm for gluten." Though the end product might test as non-detectable, the product still contains gluten and should not be labeled gluten free. Manufacturer Produces Gluten, but the Product has "No Gluten Ingredients Used" on the Label Many manufacturers produce both gluten-containing and non-gluten containing products in their facilities. When a product is produced on machinery that produces gluten or in a facility that has flour dust in the air, the product should be tested for its gluten status before it is labeled gluten-free. Example 1: A clam chowder company labels it’s product as gluten-free and reports that the soup is gluten-free. Then later reports that wheat flour is used in other soups they make and that there is no allergen sterilization that occurs between the soup with wheat flour and the clam chowder without wheat flour. The company does not test for gluten status, but decides to label their soups as gluten free anyway. It is very possible that the soup will not test below 20ppm. Example 2: A flour company produces flours that appear to be gluten-free, but the flours are made in a facility that produces gluten-containing flours and are produced on equipment with gluten and exposed to gluten flour dust from the air. To cut back on the amount of gluten in their product, the company throws away the initial batches of flour and only keeps later batches. The later batches on average test around 30-35ppm. The flour is not labeled as gluten-free, nor does it state on the label made in a facility that produces gluten. Labeling Mishaps Lawyers often recommend that products not be recalled even when a gluten-free labeled product is determined to contain gluten. Example 1: Wellshire Farms products were sold with a gluten-free label despite having tests showing a ppm reading far above 20ppm. Example 2: A chocolate fitness bar was certified to be below 20ppm. The ingredients changed and wheat starch was added instead of corn starch. The starch was listed on the ingredients as “starch” and the product was labeled as “gluten-free” and noted to be tested below 20ppm. The Product is "Naturally Gluten-Free" Oftentimes, companies report that their product is gluten-free, because they use naturally gluten-free ingredients. The problem with this statement is that even a naturally gluten-free ingredient can become contaminated with gluten through production, storage or shipment. Example 1: A chia beverage company reports on their label that their product is naturally gluten-free. When informed that chia is often cross-contaminated with gluten, the company stated that "our chia tests at 30ppm, but since chia is naturally gluten-free they can still place gluten-free on their label." Example 2: To protect their consumers, Kettle Cuisine soups tests "naturally gluten-free" ingredients before using them in their manufactured products. More than once their cumin and coriander tested above 20ppm, and Morjoram tested above 5ppm. As a side note the company reports that they have had no problems with their current supplier of organic spices. So far, the organic spices have been consistently testing below 5ppm. Like many companies attempting the safest standards possible for their customers, Kettle cuisine requires that both the ingredients going into their product and the final product test below 5ppm. This allows even the most sensitive of gluten reactors to feel safe consuming their products. Many gluten-free product manufacturers regularly test their ingredients for gluten status. Naturally gluten-free products that should always be double checked for their parts per million (ppm) status include: vinegar, chia seed, hemp seed, oats, buckwheat, spices, produce stored with flour, flours or grains made in a facility producing gluten, B vitamins, E vitamins, modified food starch (should be listed as wheat if from wheat, but this doesn’t always happen). Offering Safe Gluten-Free Options to the Community At the Gluten Free Specialty Market in Sacramento, California we work hard to educate the community and manufacturing companies regarding the need for safe products. Local companies often ask us for information on how to provide safe gluten-free options. Nachez, a dairy free and vegan Nacho cheese sauce, contacted us last year while setting up the manufacturing of their cheese sauce. After speaking with us, it was decided that the product would be produced by a company that regularly batch tests the product to be below 20ppm. It is very empowering to feel like we, as a market, are activists for the health and wellness of our customers. In the past four years we have learned vast amounts of information on the manufacturing of gluten-free products throughout the United States. In 2012, we hope to press local legislators to help us do this by creating a gluten-free labeling standard for California. We hope that if the FDA doesn’t pass a gluten-free labeling law in the next year, California will pass a state law to help protect us. In the meantime, we continue to drill gluten-free manufacturers on their products and do our best to provide the safest gluten-free options to our customers.