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Celiac.com 04/08/2017 - "Do not fear to be eccentric in opinion, for every opinion now accepted was once eccentric" – Bertrand Russell. I would like to introduce the term "zero" when we talk about eliminating gluten. Precise language leads to precise action. Zero means none, not some. Yes, my recommendation is to change the gluten-language that we have been using. The meaning of the phrase 'gluten-free' has been diluted, so it almost has the connotation of 'not-much-gluten'. It suggests that 'a-little-gluten-does-not-matter' or 'you-are-free-to-give-up-gluten-if-you-want-to'. A much stronger expression is needed. I am changing the term 'gluten-free diet' to 'gluten-zero-diet'. This should change how people think about gluten. I am a paediatrician, so I see lots of sick children, and many of them are gluten-affected. Happily, they get better much more quickly, after going off gluten, than gluten-affected adults. I am a strong believer in putting these children on a gluten-free diet well before they end up with substantial gluten-related harm, and to spare them from years or even decades of gluten- induced symptoms. This means making an early diagnosis. It also means putting them on a gluten-zero-diet before they get the severe gut damage of celiac disease. The big question for the children, their parents, and me is "how gluten-free does he need to be?" and "for how long does he have to be gluten-free?" If you read my early books, I talk about eating gluten to tolerance. But I have completely changed my mind about that. My stance now is firmly zero-gluten. This might seem a radical position to take in the face of the FDA and other groups talking about 20 ppm as the okay level of gluten contamination. So, how can I justify my gluten-zero-diet opinion? I'll explain a little background information first. Do I have to go gluten-free? I am often asked if a gluten-free diet is the only way to manage celiac disease. Many of my families are initially resistant to the idea. This is no surprise because gluten-foods are all they know about. Actually, all they know about gluten is that they are just living like everyone else, mostly on wheat-derived foods. They have a food habit. They do not think much about what they are eating. They just eat what is cheap and convenient - that means wheat. But the simplistic answer to this question is "Yes! a zero-gluten diet is the answer." However, this is a complex question. So to broaden the question I have included all gluten-related disorders. I repeat, "Yes! A gluten-free diet is the central management strategy for celiac disease and gluten-related disorders." But what does a 'gluten-free diet' mean? How free-of-gluten do you have to be? To me, a gluten-free diet means zero-gluten for life – with no exemptions. Certainly there are many who suggest that people can eat gluten to tolerance. (I used to say this as well.) But now I strongly disagree. Any gluten has the potential to cause you harm. Get your gluten antibodies down Going on a gluten-free diet is more than just the eradication of gluten from your diet. Surprisingly, it is also about reducing the gluten antibodies that your immune system is churning out. Gluten can harm you in more ways than by a direct, or an immune effect, in your gut. Did you know that gluten can also cause you harm through the gluten antibodies that your body produces? (See the chapter on neurological harm.) There is growing evidence that the gluten antibodies (AGA – anti-gluten-antibody) are damaging to us, particularly to our neurological system. The research work done by Hadjivassiliou (2012) needs to be heeded. Think about why you get vaccinated. Vaccination is to keep you protected from bacteria and virus throughout your life. For this purpose, once you have stimulated antibody production by your immune system, whenever your body comes in contact with the identical stimulant again, your immune system begins to produce much more of this same antibody again. Most people get vaccinated against illnesses. For instance, most people have had their tetanus shot. This comprises a tiny amount of tetanus protein (the allergen), which stimulates your body to produce antibodies against the tetanus bacteria. This then protects you from tetanus infection for years to come. The vaccine is intended to stimulate your body to produce the anti-tetanus-antibodies, lifelong. To ensure this happens you will need to get a couple of booster shots during your lifetime. This also happens in gluten sensitization. So when you think about gluten, and the antibodies against gluten that your body is continually making, you can now understand that every time you eat gluten, by error or design, this will stimulate more gluten antibody production. And that is a very bad thing for you. It is crucial to reduce gluten antibody levels. Even a tiny amount of gluten is enough to stimulate ongoing antibody production, which is potentially harmful for your nerves and brain. The goal should be to get and keep your gluten antibodies down. Antibody reduction rather than just the elimination of gluten Hadjivassiliou, in his 1998, paper says, "These results strengthen our contention that eliminating these antibodies through strict adherence to a gluten-free diet may have important therapeutic implications for patients with gluten ataxia." Here the focus is on antibody reduction rather than just the elimination of gluten. Surely there is a strong case for investigating for gluten-sensitivity in all people with the likelihood of gluten-related disorders. Is 20 ppm really okay? Does a gluten-zero-diet literally mean no-gluten-at-all? Definitely, "Yes!" But the question everyone is asking is, "what does a gluten-zero-diet mean in terms of every-day practicality?" There is ongoing debate about how many parts per million (ppm) of gluten is acceptable in food. Pragmatically, because it is so difficult to get rid of cross-contamination in food production and processing, the number of 20 ppm is now surfacing as a 'reasonable' level of gluten to be consumed (some countries have 200 ppm, and the FDA is recommending 20 ppm). When you first hear about this number, it seems to be a negligible amount. However, there are still concerns for some people who seem to be exquisitely sensitive to gluten. For me, a gluten-zero-diet means 'no-gluten-at-all'. This can be achieved if you eat fresh fruits and vegetables, unprocessed meat and fish, uncontaminated rice, corn and other alternate grains, eggs, nuts and unprocessed dairy foods. This means no packet or processed foods – I have called this the no-packet-food-diet. Gluten-free is more than removing gluten It is a lot more than 'just' going gluten-free. Yes, there are many more things to do when healing someone with celiac disease/ gluten-related disorders. The longer you have had gluten-symptoms, the worse your body will be. More healing will be required. You may need additional minerals, vitamins and probiotics. There are many routine health checks to take. You should also ensure that your gut has healed (via blood test and, maybe, a repeat endoscopy). Advocating ZERO gluten Yes! I am a zero-gluten man. I advocate a gluten-zero-diet. This is based on the concern that tiny amounts of gluten in your food are enough to stimulate your immune system. Even if you are not feeling unwell from this apparently trivial exposure, your body could be getting sick. What seems trivial to you may not be trivial to your highly tuned and sensitized immune system. By definition, 'zero gluten' means ZERO! In other words – it is undetectable gluten (say less than 1 ppm – gluten detection is now getting down to these very low levels). Consequently, any food in which gluten can be detected (between 5–20 ppm should not be labeled gluten-free. This is because it is NOT gluten-free. It does contain (an apparently) trivial amount of gluten. These foods that contain 5–20 ppm need to be labelled 'contains gluten at levels 5–20 ppm'. We need to know exactly what is in our food. We need this information to make informed, healthy food choices. The main opposition to zero-gluten labeling comes from the food manufacturing and processing industries – not from the gluten-free community. Food companies say it is not practical or economic to make zero-gluten products. They claim that a 20 ppm is a realistic compromise. They say that 20 ppm is close enough. But this is not what the gluten-free community want: we demand "no-gluten-at-all". That is zero-gluten. The gluten-contaminated food chain needs to be entirely cleaned up. The zero-gluten market is growing. The gluten-free community does not want any gluten traces in their food. Gluten labeling: a two-tier approach In New Zealand, "Coeliac New Zealand" runs a gluten-logo program to give "consumers a quick reference point when shopping and faced with uncertainty about the genuine gluten-free status of a product." They have, very sensibly, adopted a two-tier system of certification. Products carrying the 'Crossed-Grain-symbol' in addition to the words 'GLUTEN-FREE' adhere to the FSANZ standard of "No detectable gluten". Products carrying the Crossed-Grain-symbol without any other words (that is, not displaying the wording 'GLUTEN-FREE') adhere to the international Codex standard for 'gluten-free tested' and they have gluten levels of less than 20 ppm ( which is considered suitable as per the Codex standard for gluten content). This two-tier system: undetectable-gluten; and less-that-20-ppm-gluten, is simple. We know just what we are getting. How hard is this? Everyone is satisfied. So why does the FDA just want a single definition? If we, the gluten-free consumers, refuse to buy gluten-contaminated products, then food makers will have to change – or some may decide not to chase the gluten-free market. Refractory celiacs still gluten contaminated Another argument for zero-gluten is that not all celiac sufferers heal on an apparently gluten-free diet. Celiac disease does not heal when you are constantly exposed to gluten. Dewar and co-workers investigated 100 patients who had non-responsive celiac disease. They found the following: 45 (45%) of these patients were not adequately adhering to a strict gluten-free diet, of whom 24 (53%) were inadvertently ingesting gluten, and the remaining 21 (47%) admitted non-compliance. http://www.ncbi.nlm.nih.gov/pubmed/22493548. Cross-contamination I suggest that you look at the "Gluten-Free Certification Organization (GFCO)" website for detailed information on testing for gluten and gluten cross-contamination. gfco.org The GFCO is a program of The "Gluten Intolerance Group" (GIG). GFCO inspects products specifically for gluten. They say "Unless food is grown in your own garden in an airtight bubble, it is impossible to guarantee a 100% pure product." Measuring gluten contamination is difficult as there are so many factors to consider. For example: the raw materials and the possibility they were cross-contaminated; the process used in production (such as the movement of raw materials and equipment) that could increase cross contamination; cleaning and packaging processes. Also their testing procedures need to be robust but affordable. They have to take into account: what is being tested (raw materials, equipment or finished products); the type of laboratory technology that is appropriate; the appropriate frequency for testing samples. Companies rely on "their Good Manufacturing Practices (GMP), Hazard Analysis Critical Control Point (HACCP) programs, and standard operating processes and procedures to determine a corrective action plan." Living with cross contamination Terri says about cross contamination at school, "We have to be so careful. So we go with home lunches, because food preparation can be an issue. Just one spoon in the wrong dish, and then back again, contaminates everything … and have you ever seen the cloud of flour that emits when you turn on a food mixer? We deal with celiac disease for my girls and for me. It is just not worth the risk of cross contamination. We prepare homemade gluten-free pasta salads, make homemade gluten-free "Lunchables" with far healthier ingredients, homemade minestrone, gluten-free sandwiches, chili, and a thousand other foods. We make gluten-free granola and trail mix for snacks. It gets easier. The best thing you can do is to find some awesome recipes and make sure whoever has celiac disease learns how to cook! My daughters are 7 and 9, and both know how to read labels and search for hidden gluten. They can prepare several easy foods and snacks, and do not feel like they are missing out. It really does get better!" How much easier it would be if there was no gluten in the food chain! Yes, cross contamination is the big on-going issue that few gluten-outsiders understand. At a recent hotel breakfast, I asked if they offered gluten-free options. She said, "yes, we have gluten-free bread". This was sitting among the ordinary gluten-breads, and shared the same toaster – covered in crumbs. The staff had no understanding of the concept of cross contamination. Should the whole family go gluten-free? Yes, there is a huge benefit for the entire household when all adopt a gluten-free lifestyle. But there is always resistance due to the cost and the "inconvenience" – and dads who do not want not give up their beer. However, if there is gluten in the house, there will be cross-contamination. Also, it is poor role modelling when the parents eat gluten (a forbidden food for the child) but their child is denied foods that (from their child's perspective) might seem like a punishment or an arbitrary rule. (Children often do not understand the reason they were put onto a gluten-free diet.) Having said that, at least having their child on a gluten-free diet is a great start, and many children seem to manage with low levels of cross-contamination. By the way, the parents can eat gluten outside the house if they are prepared to play gluten-roulette. However, for their own health they should adopt the gluten-zero policy. If gluten is in the house, there is cross-contamination. A Day in the Life: Living in a Mixed House If you want to know how to avoid cross contamination on a day-to day basis, I recommend that you read this article by Al Klapperich (GIG, East Central WI). http://www.gigofecw.org/news/files/living_in_a_mixed_house.php Al says "This document draws upon my knowledge and experience I have acquired since going gluten-free in 2003. I have given you, the reader, a glimpse into how I personally carry out a gluten-free diet in a mixed house. I am not suggesting this is the only way or the best way; it's simply my way. My only intent is to help others that may be struggling with the gluten-free lifestyle. Not only do we have to be concerned about gluten ingredients that make up our food – we also have to be concerned about any gluten that may come into contact with our gluten-free food." Do you put gluten on your skin? Cosmetics, should they be gluten-free? Nancy asks: "Doctors in the USA state there is no need to avoid gluten-containing cosmetics & topical medications for those with celiac. What is your viewpoint on this?" This is a great question. I tell my patients to avoid any gluten on their skin. However, the answer depends upon where your focus is. If your focus is only on gut damage (that is, celiac disease), then the tiny amounts of gluten in these skin products is trivial and not enough to cause intestinal damage. But, if your focus is on the person and symptoms, then gluten on the skin often causes itch and irritability. For example, people complain of itchy hair if using a gluten-containing shampoo. Children using play-dough can develop a contact rash and become irritable. Swallowing gluten in lipstick causes some people a sore tummy. I recommend gluten-free cosmetics and topical medications. Gluten-free food not always healthy There is a not-so-subtle message promoted by many food-manufacturers, that gluten-free foods are, as of by right, healthy foods. This is definitely not true. Have you seen all those advertisements for gluten-free cookies and sweet treats? They are empty calories, full of fat and sugar, and lacking micronutrients. I was recently sent a message that was advertising the gluten-free benefits of a "Natural alternative healthy energy drink". This was misleading and dishonest. This drink was just a sugar (sucrose) water, with a few added vitamins. It is a terrible product. It cannot even be called a food. It would be much healthier to eat fruit and vegetables than drink this. It would be much better value to buy and eat healthy whole foods and drink water. Carrying the label "gluten-free" does not automatically mean that the product is either healthy or good for you. Often it is not. For example, Coca-Cola is both gluten-free and fat-free, however, few health professionals would recommend it. Lots of specialized gluten-free products are full of sugar and fat. They might taste great, and they are okay for a treat, but should not be eaten as a regular every-day food. When first confronted with the need to go on a gluten-free diet, most people feel overwhelmed. They also want to reject the whole notion of being gluten-free. They might be angry. They feel as though they are giving up a cherished food, and they certainly are. They have been used to eating gluten-foods for their whole lives. Suddenly, they have to start paying attention to what they are eating. This is very difficult. No wonder there is resistance to a gluten-free diet from so many people. Is gluten-free food safe to eat for everyone? Anna asks me by email: "Hi Dr Ford, I would like to know if people who are not gluten-free should eat gluten-free food? Can you provide any information of this topic please for me as to the pro's and con's of this? Many thanks." This is an interesting question, as it insinuates that gluten-free foods could be unhealthy for some people. Except for the gluten-grains of wheat rye and barley, all foods are naturally gluten-free. Gluten free foods are naturally healthy. It is only over the last 100 years that wheat has been added to more and more of our foods. There is nothing harmful about eating gluten-free foods. Can you live without gluten? Arthur wrote: "Your article about gluten causing nerve problems has touched a nerve, as you could see from the general round of applause and approval it received. Bravo! I have consulted dozens of doctors over 30 years (in USA and France) but not one had ever suggested gluten could be the culprit for my problems. Now, I wonder if more education is needed in the medical community on this problem. I've been gluten-free for nearly three months now, and all my symptoms have disappeared and I feel great." My question is 'Can humans get along without gluten?' and what role does gluten play in nutrition. Thanks. Best wishes, Art." Who needs gluten? Here is the dilemma. The world still needs gluten grains to feed the population. But this is creating ill health in at least 10% of the population. If so many people are getting ill from the foods that they are eating, then surely it would be better to shift to other food types to improve the health of the population. It turns out that gluten is not a necessary protein. The gluten grains are convenient and demanded - but they are not biologically essential. In fact, for perhaps a third of the population, gluten is biologically undesirable. (This is a controversial statement and needs a lot more research to back it up.) Are there risks when going gluten-free? It is my experience that for most families who go gluten-free, the quality of their diet actually improves. As they no longer rely on the easy-filling cheap breads, they are forced to branch out into vegetables, fruits, meats and other non-gluten grains. This greatly enhances their food variety, which, in turn, improves their health. Gluten is unnecessary for a well-rounded diet. Is the gluten habit easy to kick? Unfortunately, gluten has an addictive quality because one of its breakdown products has a morphine-like activity. As you know, foods crammed with gluten such as cakes, dumplings, steamed puddings and big hunks of bread are often referred to as "comfort foods". For some, this comfort is derived from this morphine-like sedation of gluten on the brain. Consequently, when gluten is suddenly removed from the diet, some people experience a withdrawal effect. This is one of the reasons a gluten-free diet is viewed as a horror story by so many people. Indeed, withdrawal effects from gluten during the first week of a gluten-free diet are not uncommon. Although this usually passes after a week or so, it can be difficult for children during the first few days. It is sensible to gradually go gluten-free over a week or so to avoid this reaction. To sum up, yes! You can you live a healthy life without gluten! Absolutely! Overall, your diet without gluten is a much more healthy, wholesome and packed with goodness. This will be good news to people who have embarked on their gluten-free journey. High-fat high-sugar. When deprived of gluten, people often feel that they deserve something to replace it. This yearning for some sort of compensation for being on a strict gluten-free diet leads to people over-indulging in these high-fat, high-sugar gluten-free specialty products. Although these foods are gluten-free, they are not disease-free. They have a high glycemic index, and you can eat too much. They are unhealthy. Weight gain, obesity and insulin resistance may catch up to you. Many people are also addicted to gluten. Therefore, as they go through the withdrawal phase, the pleasure of eating sweet-food can provide some compensation to them for being denied gluten. Going gluten-free is not an easy thing for most people. Gluten-free reluctance You would think that being diagnosed with celiac disease would be a big motivation factor to go onto a gluten-zero-diet. But a study in England (2011) found that over 40% of patients with celiac disease were dissatisfied with a gluten-free diet (jgld.ro). They said that they were keen to go back onto gluten if they could get some sort of vaccine or pill to change the way their gut processes gluten. They were willing to make unknown changes to their immune system just so that they could go on eating a toxic food. To me this shows: the massive ignorance of these people about the seriously harmful nature of gluten. the low level of family and community support for these people. Going gluten-free should be easy, healthy and enjoyable. Gluten-free does need assistance initially. the lack of knowledge about the neurological and autoimmune harm caused by gluten. This is a chapter from Dr Rodney Ford's new book "Gluten: ZERO Global."