Celiac.com 06/17/2017 - Hello, my name is Gerry. I am a certified Medical Technologist currently working as a Clinical Systems Analyst. I was diagnosed with celiac disease in 2006 by blood/biopsy. I have two wonderful children, 1 of whom has screened positive for a celiac gene pair. My strong background in Medical Technology assured a quick diagnosis once symptoms appeared. Since then, I have been living a strict gluten-free life. I have gone through nutritional counseling at Mayo Clinic and have an enhanced background with my understanding of the world of gluten. I use my experience and knowledge to accurately base my decisions on whether a product is safe for me. To prove my diet to be effective, I have had my TTG levels measured every 6 months since 2006—all were negative. Also, I have had 3 biopsies after beginning my gluten-free life and all were negative for villous atrophy. I do understand that my medical follow-ups do not prove that I am not ingesting small amounts of gluten; they simply indicate that I am not reacting. As for me, I view the gluten-free life to be much simpler and cheaper than it once was, and fear that strict gluten labeling guidelines have the potential to negatively shape the gluten-free life that I know and live today.

Within the last few years, I have been receiving emails to ask my support regarding the FDA's gluten-free labeling rule. At first, I was a supporter as I wanted to support the celiac community since I was part of it. However, after I sat down and really thought about it, I am questioning the benefits of a strict gluten labeling act. In fact, I am predicting a negative impact if gluten labeling guidelines are too strict.

When I started my gluten-free life in 2006, my grocery bill was atrocious. I was paying very high prices for the simplest of things. Tortilla chips $3.89 for a 6 oz bag. $3.99 for 8 oz of mustard. $5.99 for gluten-free mayonnaise. As the years moved on I noticed two changes that positively impacted my life as a celiac. The first is that many manufacturers have a list of their gluten-free products on their website along with explanations of how their company handles gluten. The second is the fact that many generic/in-store-brand companies are now labeling their products as "Gluten Free" or "Naturally Gluten free". Because of these two advancements, my life is so much easier and much more cost effective. This makes it easy to stick with my diet and keep my health safe and spirits up.

Currently, if a product is made without gluten, it can be labeled as "gluten-free". Many products are available at a fraction of the cost and they are safe. Now that my family eats gluten-free, I have noticed that in today's world my grocery bill seems much more normal and realistic: gluten-free mustard $1.29; gluten-free mayonnaise $1.59;20 oz bags of tortilla chips labeled gluten-free $2.59; 8 oz bag of gluten-free cheese $1.99. You see, living a gluten-free life with today's rules is easy and I believe it to be safe if we are careful and make educated decisions.

At this time we have many inexpensive non-brand/in-store brand name products that are widely available. I know of some stores that have 20+ pages of gluten-free items on an excel spreadsheet for their own brand of products, including medications. There are stores that update these lists quarterly, and most are listed by bar-code number. I can simply print the list and buy all of my products safely and inexpensively. I could easily make a phone call to clarify items that I may disagree with, or inquire about cross-contamination. Are these products that I speak of above tested for gluten? I don't believe so. Are these products free of gluten ingredients? I trust that they are. Is there cross-contamination? Maybe. It is easy for me to call and ask about their product lines. Are these products safe for me? I believe so, as I have the blood tests to prove they have been safe for me.

Phone calls to companies on products that are not labeled as "gluten-free" are still the norm even though they are getting less frequent. As an expert, I am able to screen who I am talking to and the company's knowledge about gluten. I have been able to make accurate judgments on these products as well as deciding whether I believe them to be safe. In many of the cases, the company claimed their product to be free of gluten and I felt comfortable consuming the product. Yes, there were companies that didn't have acceptable knowledge/quality control and I didn't feel these products were safe so I didn't consume them.

My first question to the celiac community is this. Do we need a strict gluten-free labeling act when we already have companies testing for gluten and providing safe products? If we want our products batch tested for gluten, we can simply purchase the ones that are currently available as there are many. If we want to know the threshold that the company considers as gluten-free, we can call them and they will tell us. Are there currently batch tested gluten-free products on the market? Absolutely. Many companies state on their packaging that they have been tested to under 20 or 40 ppm. If a company is testing, they make it known on the label and in the price of the product.

My next question is what will a strict gluten-free labeling act do for us? I believe that it will ensure that a product is safe for celiac patients defining what a product needs to be in order to be labeled as gluten-free. Simple-yes. How do we suppose a company is going to know if their product is gluten-free? Well, if you ask me, it will NEED to be tested. Who will pay for this testing? I believe that the celiac community (the consumers) will be paying for this in higher food prices. If a company has to test a product to label it gluten-free, the price will need to go up in order to pay the cost of the testing and the quality control program for the company. We know this to be true as these products are already accessible.

I see a possible negative impact of this labeling act if it were to be made too strict. I believe that manufacturers that do not test for gluten may need to pull their "gluten-free" labeling from the package. This could eliminate most of the inexpensive safe products that I currently purchase today. We know there are many manufacturers out there that label products as gluten-free as they simply do not use gluten ingredients. I believe these products may recede. I am not so sure a company will be able to label these products as gluten-free without first testing them. Even if they are allowed, I am not so sure they will take the risk. Therefore negatively impacting our pricing/availability.

Will Gluten free lists on websites go away too? I believe these could fade or be at risk as well. If there is a law/act that dictates the amount of gluten in a product, I would think that a company would not create gluten-free lists of products without proving them to be gluten-free by some form of testing in an attempt to avoid legal action against them.

What about our phone calls to companies asking if their products are gluten-free? Will they have a gluten-free list to review? I would tend to think that they may not be provided with a gluten-free list to reference. I have a hunch they may say, "We do not test any of our products for gluten and therefore are unable to tell you whether the product is gluten-free". I know that reply will complicate my life in many ways. The first thing that comes to my mind, in this regard, are the calls to pharmaceutical companies regarding medications.

I feel that there are better ways to change the labeling as we know it that would offer a more positive effect on the celiac community. Maybe just changing the package labeling to force companies to list wheat, oats, rye, and barley on the packaging. How about requiring mandatory labeling of products that share lines with "gluten" containing ingredients? When we look at the big picture, I think it is safe to theorize that the impact of strict gluten labeling guidelines goes far beyond just providing safe products. In conclusion, I ask these questions. Will a strict gluten labeling act have the potential to negatively impact the celiac community by increasing prices and decreasing availability? And lastly, have we looked at the possible outcomes from all angles?

Celiac.com 06/08/2017 - After thirty three years of a self indulgent relationship with food, my life hit rock bottom and took an unexpected turn, for what momentarily seems to be the worst. As spontaneous and adventurous as I am, I decided to challenge myself and make my already horrid situation, even worse. Or, as you will come to see, surprisingly better.

To start, when I say self indulgent, I mean I allowed myself to have whatever delicious and comforting food I wanted, whenever I wanted. This was never anywhere close to an eating disorder, but I most certainly had a seductive sweet tooth and I definitely experienced emotional eating. A bowl of ice cream always made a bad day turn good, despite my lactose intolerance issue.

When I was forced into this drastic change in my life and my world was flipped upside-down, it challenged me emotionally, physically, and spiritually. My health was crashing. I couldn't regulate my blood sugar. I was diagnosed with a stress induced hiatal hernia. I had constant and burning indigestion. My emotions were all over the place and my faith in who I was and what I believed in was tested.

Courage I never knew I had slowly came out of the depths of my soul and spilled over into all the areas of my life. I wanted to press on, conquer, and show how strong I am. I decided to challenge myself even further. I decided for the fun of it, to go refined sugar and gluten-free. I wanted to see if I had it in me to exhibit extreme self control under my extreme circumstances. I ultimately wanted to stretch my faith in God and the power residing within me; that which sustains me. Now to some that may sound silly or easy to eliminate a few ingredients, but to my fellow sweet tooth and carb lovers, you know the kind of uphill battle I was committed to taking on.

My way of eliminating these things was very simple. I just stopped eating them. I didn't wean myself off of them. To me that would be a tease. I can have a crumb but not the cake? Silly, right? To make matters worse, both sugar and gluten are challenging in themselves to eliminate, as they are in EVERYTHING, but putting them together to eliminate and trying to find something to eat seemed nearly impossible.

I had to get creative. I already knew all about eating healthy and the gluten-free diet because my six year old has been gluten-free for the past five years. I know what products to avoid. However, going gluten-free after eating gluten filled food for thirty three years was tough, and even though I knew better by raising my daughter gluten-free, I always found excuses for my own eating habits. I do believe taste buds get accustomed to unhealthy food. But I reasoned in my eye opening feat, that if taste buds can get accustomed to unhealthy food, then I guess taste buds can get accustomed to healthy food.

I have to say that the first and fourth weeks were the most difficult. Week one, I had to keep telling myself no! No one wants to hear the word "no" all day long. Weeks two and three were pretty easy. I was into my routine of making healthy meals, trying new recipes, and baking yummy things without sugar or gluten! I have to say, the cake I made the other day was seriously the best cake I ever ate! Week four was the true test of my willpower. I had rampant cravings. For some reason it seemed like everyone kept forgetting that I was now gluten and sugar free and kept offering me bad things! Smells drove me crazy. I couldn't really be around anyone who was eating things I couldn't. Since then, I have to admit, it's been pretty smooth sailing.

Despite the difficulty and temptations of week four, I began to notice something amazing. My hair and nails were longer than I can ever remember. For thirty three years I've been trying to grow my hair long and it was always thin and would never grow past my shoulders. Looking in the mirror at this long beautiful hair gave me some kind of warm smile inside and urgency to share my good news. I noticed other changes too. My bloating and stomach aches were gone. This was another chronic condition of mine that has been with me for so long that I actually came to accept it as "normal." Horray! I no longer feel like I'm ten pounds heavier than my scale says! Now mind you, I'm a very tiny and petite girl, and with the realization that gluten must have been stunting my hair and nails growth, I can only imagine what other things might have been stunted? You get the picture.

Going gluten and refined sugar free was one of the best decisions I have ever made. It changed me in ways I could never have imagined and it opened my eyes to a whole new way of living and optimizing my health. Experiencing firsthand the kind of care and dedication that I give to my daughter and her health makes me feel like a whole new woman!

Celiac.com 06/02/2017 - Though I tried to avoid eating with locals, it seemed to come up over and over again. Military duties frequently required me to work and meet with the locals to facilitate contracts we had in place and ensure work was done properly. At various times and locations, I traveled with a small group of other soldiers among a larger population of Afghans. Many of the Afghans carried weapons, such as the AK-47, and had them slung over their shoulders. We were able to strike a chord with the locals, creating an atmosphere of camaraderie. The U.S. government was paying them to do a job; they were collecting a wage, and everyone left satisfied. At times, this relationship felt like any manager/employee relationship, and at other times it felt like we were paying the mafia to keep them from doing harm. The situation could be tough and would get tougher as our relationship with the locals became strained due to regional politics.

An example of this strain occurred in February 2012, when a group of Afghan workers near Kabul (a few hundred miles away) were angered by the sight of Korans in a burn pile. The Koran is the religious text of Islam, which Muslims consider the word of God. An Arabic Koran is cared for in a special manner, and the sight of these sacred texts in a burn pit was enough to incite violence and riots throughout the country. Unlike the United States, where news travels instantly, news in Afghanistan travels slowly, mostly by word of mouth, and it took several days before Afghans in Kandahar heard about the incident. They began to protest, and we were all instructed to be on high alert with loaded weapons. Meanwhile, in Kabul, the riots took the lives of American soldiers. This included a friend of mine, a fellow Maryland Guardsmen and Army officer. He had been working with the Afghan National Army (ANA) in the Kabul region. Bob was a good man, and I will remember him fondly.

Work did not stop, even with the angry protests. Along with a small group of soldiers, I found myself at the local Kandahar Transshipment Yard, roughly two miles from the main post of KAF. The group of about twelve U.S. soldiers was there, mixed with over one hundred local Afghans and Pakistanis, most of whom were working as truck drivers delivering supplies. The atmosphere was abnormally quiet as we went about our business and talked with the Afghans. They stared at us but made no ill gestures as we walked up to them. Someone nearby started yelling. There was a scuffle. Silence followed. One of the locals stepped out from his group and walked over to me. He spoke no English but reached out his hand and offered me food. This seemed intended as a gesture of friendship. I could eat it and risk a variety of potential side effects to include a gluten reaction, or I could turn it down, which may have been considered an insult in what was already shaping up to be a tense situation.

What do you do? I did what any leader would do, and made the best of the situation in spite of my diet. I imagine anyone would. Why risk violence just to avoid eating gluten? Yet the ramifications are clear for anyone considering joining military service. They may be putting themselves in a compromising position. Those of us out there make the best of it and do not mind the selfless service when required.

Yet even at home in our day-to-day lives, where violence is not a factor, I see celiacs and gluten-free dieters compromising their dietary standards due to social pressures. Maybe they do it to fit in, or rub elbows with a supervisor at work, or maybe just to avoid seeming difficult. We may be given a salad with croutons and quietly brush them out of the way rather than be an inconvenience. And when we do this we are not only harming ourselves but each other. The more vocal celiacs are about their diet, the easier it will be for the next celiac who will follow in their footsteps, or are seated in the same restaurant later on.

While it may seem curt, or perhaps crass, I politely reject any food that I am not confident is gluten-free, while ensuring that the server knows I am concerned about gluten. It does not matter to me if it is at a social event, a work event, or just casual dining. While I do know some gluten-free dieters who will only eat food from their own kitchen, I am not quite so stringent and am willing to go out to eat. However, I am also known for bombarding servers and cooks with a host of questions until I'm reasonably assured that my meal will not be cross contaminated or contain gluten. Several of the vignettes I include in Gluten Free in Afghanistan tell my story of difficult times eating gluten-free, both at home and abroad.

While war-time scenarios do not unfold too often, and are probably far from your mind while eating at a restaurant, you may want to remember the above story when your gluten-free meal comes with wheat toast on top of it, or the crouton crumbs are scattered on top of your salad. Is it likely that the person who handed it to you is heavily armed and going to be offended? If they are, I would recommend you leave the area immediately for your safety and the safety of those around you. If they are likely not armed, politely explaining why this food is not healthy for gluten-free dieters will not only benefit you, it will benefit any celiac who is there after you. Stay safe out there.

An excerpt from his book Gluten Free in Afghanistan.

Celiac.com 05/25/2017 - No parent likes to see their child ill. This is most especially true of a newborn. The baby feels sick, perhaps has a fever, and often all they do is cry, look miserable and no one gets any sleep. So while we can all agree that it's no fun, could keeping your baby healthy actually prevent a lifetime of celiac disease?

The answer is quite possibly 'yes' based on a recent study published in BioMed Central Pediatrics. The title of the study is: "Early infections are associated with increased risk for celiac disease: an incident case-referent study". [A case referent study is simply one where people with the disease to be studied are identified and compared to people in a control group who do not have that disease but are similar in other respects.]

Specifically, the authors concentrated on the 'epidemic' of celiac disease present in Swedish children under two. Their goal was to discover any potential risk or protectant factors that could influence the expression of celiac disease.

Nine hundred and forty five children participated in this study, 373 of whom had celiac disease, with the remainder making up the control group. All of those with the disease were diagnosed with it prior to their second birthday.

The scientists discovered that if a child had 3 or more infections, regardless of type, during the first 6 months of life, their risk for contracting celiac disease was significantly increased. This risk remained stable after adjusting for variances in infants' feeding and socioeconomic status.

Additionally, the risk of celiac disease was further increased if, in addition to the infections, the infants were introduced to gluten in large amounts, compared to small or medium amounts, after breastfeeding was discontinued. The authors concluded that there was actually a synergistic effect between early infections and daily gluten intake. That effect was more pronounced when the infants who were ingesting gluten, did so after breastfeeding was discontinued.

So what is our take-away from this study? As a parent of a newborn, one certainly can control whether the infant is breastfed, and the benefits of doing so compared to any available formula seem irrefutable. Therefore, even if a mother is having some trouble nursing or with her milk production, it is well worth the effort to overcome whatever obstacles are present so her infant receives the benefits of nursing for at least 6 months. Personally I encourage a year, but 6 months would be the absolute minimum.

Controlling whether or not your child becomes ill is certainly more difficult than ensuring he or she is breastfed, but I would like to share an interesting correlation that we see here at the clinic. Breastfed babies seem, on the whole, to be much healthier than formula fed babies. There is certainly considerable support in the research to support our clinical experience. You may have more control than you would imagine, simply by ensuring that your infant is nursed for as long as possible.

The only further dietary recommendation I would suggest is that the infant's mother get checked for gluten intolerance during pregnancy or as soon as possible, and if she has any genetic markers for either celiac disease or gluten sensitivity, she should avoid all gluten (and dairy products) during the nursing months – both have been shown to lower the immune system.

Finally, from a lifestyle viewpoint, it would perhaps be prudent to make the first 6 months or so of life as stress-free as possible. I know that some infants gain a passport and international travel experience well before their first birthday due to relatives in foreign lands or from out of state. While all families are excited to greet a new infant into the family, consider having the infant stay at home while others make the journey to meet him or her. This might very well prove to have long-term benefits for the child's health.

I hope that you found this helpful. Unfortunately, celiac disease, much like so many other autoimmune diseases we are trying to avoid, continues to increase in frequency. Anything we can do to reduce the numbers of people suffering is well worth it.

If you have any questions, comments, or would like to improve your health. Please contact me – call 408-733-0400.

We are here to help!

Reference:

• BioMed Central Pediatrics. 2012 Dec 19;12(1):194. Early infections are associated with increased risk for celiac disease: an incident case-referent study. Myléus A, et al.

Celiac.com 04/15/2017 - Raw materials used by breweries include barley. A characteristic feature of this grain is the presence of gluten proteins which also includes hordein. This group of proteins are the trigger of celiac disease symptoms [Darewicz, Dziuba, Jaszczak: "Celiakia – aspekty molekularne, technologiczne, dietetyczne." PrzemysÅ‚ Spożywczy, styczeÅ„, 2011] . This issue raises the need to seek new methods of brewing that allow for the elimination of gluten proteins from the beer [swora E., Stankowiak-Kulpa H., Mazur M. 2009. Dieta bezglutenowa w chorobie trzewnej. Nowiny Lekarskie 78, 5-6, 324-329]. The biggest problem for coeliac patients is to identify permitted foods. Food manufacturers know about the above problem and are offering new products for people with celiac disease. [CichaÅ„ska B.A., 2009. Problemy z rozróżnianiem żywnoÅ›ci bezglutenowej. Pediatria WspóÅ‚czesna. Gastroenterologia, Hepatologia i Å»ywienie Dziecka 2009, 11, 3, 117-122.] The market offers access to a gluten-free beer. Beer of this type can be prepared in one of two ways, either by using materials that do not contain gluten or by removing gluten during the production of beer. Such products are, however, expensive. Traditional market beers are not tested for gluten content, which may differ from one brand to the next.

Barley, hops, yeast and water are the basic raw materials for conventional beer production. Gluten in beer is only in the barley or wheat, from which malt is produced. During malting, barley is subjected to the processes of soaking, germination and drying. At that time, amylolytic and proteolytic enzyme activity increases and grain composition is undergoing changes. Knowledge about the migration through various stages of beer production and the final level of these proteins or their "toxic" fractions is crucial to ensuring customers about the safety of the beverage they will consume. Therefore, it is important to conduct research to better understand the role and the amount of unwanted hordein and/or wheat prolamin in the production of beer. Malt has become a subject of research because of its harmful potential for patients with celiac disease.

In a study conducted by Czech scientists different species of barley, malt and beer were analyzed. Beers analyzed for gluten content were characterized by very different gluten contents. The level of gluten in raw cereals ranges from 18-68 g/kg. After comparing the different types of beers, in terms of the gluten concentration, the results were as follows:
non-alcoholic beer

Raw seed contained 50.4 ± 1.8 g per kg of gluten and comparing to it malt 68 ± 4 g per kg of gluten. Higher levels of gluten in malt have been confirmed in studies on other types of barley and other crops derived from a corresponding malt from which they were produced under similar conditions.

Malt barley grains are subjected to extraction during mashing. Gluten content was examined during the entire production process. The amount of protein decreases during the production process due to precipitation of proteins in the fermentation mash, at the adsorption stage, and during beer stabilization. Researchers say that the gluten content in beer is about three times lower than in the raw barley grain. The gluten content changes at each stage of the beer production as is shown below:
malt> sweet wort> wort after chop adding > beer> stabilized beer.

Most of the proteins in the sharps (milled barley) are extracted which is a remnant of the filtration process in the mash tun (the vessel where the wort is boiled). Only a small part of the gluten goes to sweet wort – 1.75%. A slight decrease was recorded after the boiling process with the addition of hops -1.7%. During the fermentation process the pH decreases, this causes the precipitation of the polypeptides and their adsorption on the surface of yeast cells. Only 0.21% of the initial gluten content remains in the beer. After the filtration process beer is subjected to colloidal stabilization with PVPP - polyvinylpolypyrrolidone and silico gel (kiesegel) and then they are removed. This process results in lowering gluten content to less than 0.11% of the initial gluten content of barley [immunochemical determination of gluten in Malts and Beers, Food Additives and Contaminants; TFAC-2005-365.R1, 29-Mar-2006; Dostálek, Pavel; Institute of Chemical Technology, Prague, Department of Fermentation and Bioengineering Chemistry].

The researchers used three methods to test the gluten content of beer. Their results differ from each other. Results show that to accurately estimate the amount of proteins and peptides dangerous to people with celiac disease, we must first develop a good methodology for the analysis. This will give the exact content of these harmful substances and provide real security to customers. If we use the method demonstrating the largest gluten protein content, only 30% of the samples were safe for patients. According to the authors there is no safe beer brewed from barley or wheat if we accept that the maximum tolerable daily intake of gluten is 10 mg. The law of the European Commission says that gluten-free food must contain less than 20 mg. per kg. Proteins present in the beers are removed during production through product stability and are hydrolysed by proteolytic enzymes present in the various stages of production. Partially hydrolyzed prolamines contained in beer are still "toxic peptides"- short protein fragments containing from a few to several amino acid residues. These fragments, rich in proline, trigger a series of reactions from the immune system, leading to celiac disease [Commission Regulation (European Communities) No 41/2009 of 20 January 2009, the Official Journal of the European Union, 21.1.2009, L 16 / 3].

The most obvious method for the production of gluten-free beer is to use only gluten-free raw materials. In the production of such a beer a lot of attention must be paid to remove unwanted components from the beer. Technologists involved in the production of beer specialize in the removal of proteins from beer and controlling their levels, as they can reduce colloidal stability of the beer flavor. Removing or reducing the amount of these proteins may be a way to achieve our goal.

Confounding factors in the production of gluten-free beer can be:

• Selection of barley varieties with a low content of protein and the corresponding enzymatic apparatus;
• Mashing process modified by deeper proteolysis, similar methods are used in the manufacture of gluten-free bread searching for enzymes capable of degrading specific proteins and peptides;
• Methods of striving for maximum distribution and precipitation of proteins with the use of adsorbents;
• The use of proteolytic enzymes in the production and stabilization of fermentation, such as amyloglucosidase is used to improve fermentation or β-glucanase to reduce viscosity. The enzyme used in the end may be proline endopeptidase;
• Implementation of the adsorbent during the stabilization phase of beer to remove residual proteins and peptides.

Conventional materials can be used, if the genetically modified seeds will be devoid of genes responsible for the production of gliadin. However, such seeds are not yet available and the use of transgenic food additives is prohibited in many countries.

Modification of the enzymes to reduce the gluten content can be achieved in two ways. Genetically modified yeast capable of expressing specific enzymes capable of degrading the protein can be used, or adding the enzyme - transglutaminase - directly during the production can also be done. These methods each have their own advantages, because with the right methodology a beer can be produced without loss of its natural taste.

Another method of manufacture of gluten-free beer is the use of cereals rich in carbohydrates that do not contain gluten. These include amaranth, buckwheat, quinoa, sorghum, millet, corn, and rice.
We can also add raw materials, the lack of native amylolytic enzymes must be compensated by the addition of external enzymes. However, this is a factor which increases costs. Colorants and flavorings also have to be added [Celiac Disease, Beer and Brewing, Michael J. Lewis, Emeritus Professor of Brewing Science Department of Food Science and Technology, University of California Davis].

Gluten-free raw materials
Cereals that are not taxonomically close to wheat, barley and rye are safe for people with celiac disease. Potential sources of gluten-free beer include: sorghum, corn, brown rice, millet, teff, buckwheat, and amaranth. At present, one of the best gluten-free beer production methods is to use gluten-free raw materials and avoid any cross-contamination. Gluten-free beer production technology is not a new technology. Some African tribes have produced beer based on sorghum and corn for 20 years. It turns out that buckwheat has a large potential for the production of gluten-free beer. Even unhulled seeds can be used. Husks can be used as the filtering material in the filter vat. The resulting malt is characterized by a taste reminiscent of toffee with a slightly nutty flavor.

One of the major problems with buckwheat beer production is very low enzyme activity. It is several times lower than in barley enzymes. In addition, the high content of polysaccharides increases the viscosity of the solution. However, through rheological tests scientists have developed optimal methods in pilot studies and demonstrated that it is possible to produce a gluten-free beer with buckwheat. [brewing New technologies, CW Bamforth Published by Woodhead Publishing Limited, Abington Hall, Abington, Cambridge CB1 6AH, England, First published 2006, Woodhead Publishing Limited and CRC Press LLC ß 2006, Woodhead Publishing Limited].

As the diagnostic methods for identifying celiac disease improve every year and more and more people are diagnosed with coeliac disease, the demand for this kind of drink will continue to grow. In addition, new types of beer can attract people who are interested in trying new tastes and making alternative choices.

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:

1. the massive ignorance of these people about the seriously harmful nature of gluten.
2. 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.
3. 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."