Gluten: worth the risk?
any one, any symptom, any time.
Gluten can strike you (or anyone else), at almost any time in your life, with almost any symptoms. Gluten cannot be digested by any one, and causes gut inflammation in everyone. Gluten can also trigger irreversible autoimmune disease.
Once gluten-damage has become established, it might remain permanent.
The question: Is eating gluten worth the risk?
Dr Rodney Ford
MD MBBS FRACP
Dr Rodney Ford is a pediatrician with 35 years of experience working with children with food allergy and gluten-sensitivity. Author of The Gluten Syndrome.
Copyright 2016 Dr Rodney Ford
Published by Dr Rodney Ford at Shakespir
This book is available in print.
Dedication – to all of the children and parents who have come to my Clinic who have made this book possible. We learn together.
“[You can’t wake a person who is pretending to be asleep.”
Shakespir Edition, License Notes
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Shakespir.com and purchase your own copy. Thank you for respecting the hard work of this author.
Disclaimer – the contents of this book are Dr Rodney Ford’s own personal viewpoint on the gluten-related disorder/ gluten syndrome problem.
This book is the foundation of the TEDx talk presented by Dr Rodney Ford, July 2014, Tauranga, New Zealand. You can see it and listen to it on this link:
Head Organiser Sheldon Nesdale writes “This was the talk that got the standing ovation and changed everyone’s eating habits for the rest of evening.”
“Gluten – friend or foe? Over the course of 15 minutes Dr. Rodney Ford, MB. BS. MD. FRACP, and a pioneer in the field of paediatric food allergies, convinced an audience of 500 that nobody is equipped to digest gluten. How did he do it? By using legos! He showed us what the indigestible gluten protein, represented by the lego, is chased by the antibodies that our systems create to combat the gluten. High antibodies in the bloodstream show how our bodies attempt to attack the radical gluten molecules. The protein damages the lining of the intestines, and causes nerve and brain damage. His proof was in his stories of children and patients, his own life and family, and the research on children and people that has produced results. Once called the crazy doctor for his stance on gluten, he is now being heard and listened to by experts around the globe.”
“But, it is up to us, to make the choices for our children our own health and, Dr. Ford believes that abundant health can be achieved by anyone who eats the appropriate foods. So, why take the risk of eating this protein that is not meant for our bodies, states Dr. Rodney Ford. I know I was convinced!”
This ‘Gluten Risk’ book introduces you to the topic of “Gluten-related disorder”. If you would like to read a lot more about this subject, I have written a much more in-depth book. Just go to the link:
You can Look at the TEDx talk
Gluten-Related Disorder: sick? tired? grumpy?
Worth the risk?
1. What did your mother know?
So, what is gluten?
How can gluten make you unwell?
Gluten is found in processed foods
Gluten is addictive
2. My gluten-illness story
My first gluten-free customer
Dr Ford – “it’s a miracle”
What else could I do?
3. Are you at risk?
None of us can digest gluten
All of us get gut inflammation from gluten
Gluten can damage your nerve cells
4. Gluten zero family?
Dabbling with gluten
Ten steps to ZERO
Get your blood tests
Worth your risk?
5. Resources and Dr Rodney Ford
Suggested additional reading and websites:
Ebooks by Dr Rodney Ford available on these links
Medical reports by Dr Rodney Ford
Personal details on Dr Rodney Ford
Personal invitation to visit the Food Allergy eClinic
Heidi says about the eClinic on Facebook
Connect with Dr Rodney Ford Online:
[“Our lives begin to end the day we become silent about things that matter”
– Martin Luther King Jr.]
I will not remain silent!
This book asks the question: “Is it worth taking the risk of eating gluten?”
Gluten! By now you will have heard about this strange substance that is found in wheat, rye and barley grains. You also might think that this gluten-thing relates to other people – but not to you. Disturbingly, the evidence is mounting that eating gluten is bad for us all. Yes bad for us all: for you, for me and for everyone else. The point of this book is to reveal to you the unsettling information that we all would best totally avoid gluten.
I argue this is in “Gluten-ZERO-Global” ().
Your response might be, “How can this be true? Surely this is complete exaggeration!” You may have heard people claim that this gluten-free-movement is just a fad, or a craze, and that it will soon fade away. Nonetheless, the adoption of a gluten-free diet is a persistent trend, which has been steadily growing over the last ten years, with no sign of stopping. So, how come this is so? Well it turns out that once someone has adopted a gluten-free diet, they usually feel so much better that they never return to eating gluten again. They choose to stay on their gluten-free path. Food manufacturers, now acknowledging this phenomenon, contribute to this rapid growth by providing increasingly acceptable gluten replacement foods (but please note: these foods are not necessarily a healthy option).
With the recent recognition of such widespread gluten-illness, much more research is being carried out. The more that gluten-harm is researched, the worse gluten appears to be. It is now up to you to make up your own mind up about what you eat. This is the question I pose to you: “Eating gluten – is it worth the risk?”
You were a once baby, just like me. You were born and nourished by your mother. You were given food, love and shelter the best she could. So, what did your mother know about nutrition? I don’t know about your mum, but my mum didn’t know much about it. She was born in Australia, in Tenterfield, New South Wales, and learned her cooking and food handling skills from her mother, who in turn learned from her mother, and so on back through the generations. Consequently, I got nourished by my mum the best she knew. There were no food labels or allergen warnings in those days. Mum just followed the traditional ways to feed me. And it worked.
My dad was nuclear physicist, very intellectual. Like mum, he didn’t know much about nutrition either. Simply, he was given food and he ate it. I don’t think that he ever studied a food label seriously. However, that was sixty years ago, when the food supply-chain could be trusted. In those days, foods were the individual ingredients. The food was simple and much less processed. It was not laden with the fats, salt and sugar of today’s foods. There were not as many packet foods, and meals were made from their basic ingredients: fresh fruits, vegetables, meats, fish, eggs and grains. So, copying from what your ancestors did was the logical and sensible thing to do. My parents had never heard of the word “gluten”.
But nowadays, our food chain has become adulterated. The book by Michael Moss, “Salt, Sugar, Fat – how the food giants hooked us” (http://michaelmossbooks.com/books/salt-sugar-fat/) is a must-read for everyone who wants to know how the giant food corporations have drastically changed what most people are putting in their mouths. He documents the pressure-marketing of sugar, fat and salt to our children – with absolutely no regard to their long-term health. Wealth, not health, is the creed of these breakfast-candy manufacturers (it can’t be called real food) and convenience-food giants. My emotional response to this serious distortion of our food is horrific, unethical and evil.
My parents were always keen for me to go into medicine, and so they were very proud of me when I graduated with honors in medicine (MB BS), and later was awarded my doctorate in medicine (MD) with my thesis on “Food hypersensitivity: diagnostic approaches to cow’s milk and egg allergy”. I also achieved my FRACP (Fellow of the Royal Australasian College of Physicians, Paediatrics). I have continued the study of adverse food reactions throughout my career, becoming a specialist in gastroenterology and food allergy.
So, what about my diet? Well initially I just followed tradition like everyone else and ate how my mother had shown me. Next, I became conscious of eating too much fat, salt and sugar. Food labelling became more extensive and food allergen warnings became mandatory in 2002, just over ten years ago. At that time, with the mounting concerns about gluten, I adopted a gluten-zero diet.
Fortunately, one of the ‘gifts-of-gluten-free’ is that changing your diet to eliminate gluten also gives you the perfect opportunity to drastically reduce your intake of salt, sugar and fat. You can start by discarding packaged convenient foods.
Ten years ago, most people had never heard of the word ‘gluten’. But most of us now recognize the word, but do not understand its implications for our health. Most people remain mystified as to its relevance to them. I see five increasing levels of awareness:
1) Never heard of gluten.
2) Know the word, but assume it has nothing to do with me.
3) Wonder if gluten could be upsetting me?
4) Trying out some gluten-free products (dabbling) to see if they are okay.
5) Learning about it and adopting a gluten-free diet.
Once aware of gluten, the next thing to do is to find out how gluten can make us all so sick.
Can eating bread really make you ill? Well, yes it can. Wheat contains gluten – and gluten is a potentially toxic substance to everyone. One of the problems with gluten is that we do not break it down in our intestines. Your gut is unable to digest it. Therefore, fragments of unchanged-gluten can easily get absorbed into your body. In turn, this sets up an adverse immune reaction. Your body makes its antibody-weapons against gluten, and this process can go on to damage your body’s organs and, worryingly, your brain and nerve pathways can also be affected.
Gluten currently dominates our food chain. When you start to look for it, you find gluten everywhere in packaged foods. You can find it in most of your processed foods, in your body-care products, and in your medications and toothpaste. In our wheat-based societies most children, most adults and most of the elderly consume large amounts of wheat-based products at every meal; on every day; and throughout their lives. This means that most people never experience a gluten-free period in their lives (other than during their first six months of life, although gluten-fragments do come through the mother’s breast-milk). Therefore, it’s impossible for people to know if gluten could be causing them harm. Tens of millions of people have been putting up with various symptoms all of their lives, and have simply just got used to them. Even though these people are perpetually unwell, they are unable to recognize that they are unwell. They think that they are ‘normal’, because being sick is the only experience that they know. They have never known the joy of good health.
Of concern, the amount of gluten in the Western diet continues to increase. Bread has become a staple food, and is seen as the foundation of the ‘healthy eating food pyramid’ (United States Department of Agriculture: http://www.mypyramid.gov). The left-hand side of this pyramid consists of grains and breads, with the recommendation that we eat the highest proportion of our food from gluten-based-grains (wheat, rye and barley).
Fast-food outlets serve up meals on buns, on breads and on pizza bases: all made from gluten-laden flour. Extra gluten is added to bread-mixes to increase air and moisture content – to make it more spongy and fluffy. In addition, we are eating ever-bigger servings of gluten-laden foods – supersize! Wheat-based gluten foods are also relatively cheap, which makes these foods more attractive to people on low incomes. Globalization of the food industry and aggressive advertising is narrowing the range of foods that people have to choose from. The pressure is towards eating more foods that contain gluten, with a lower consumption of fresh fruits and vegetables.
Finally, gluten has been shown to be addictive. Gluten can behave in a similar way to morphine. We humans produce a morphine-like substance naturally in our own brains – these chemicals are called ‘endorphins’. These endorphins are released in our brains to give us a sense of pleasure. They are also released in our brain as part of our body’s natural mechanism to help numb pain. We can crave for the pleasure of this sensation. Research now indicates that gluten can generate some of these pleasurable effects. This means that eating gluten can give you a real sense of pleasure, through stimulation of the morphine-like receptors in your brain. This explains why so many people seem to be addicted to wheat-based products. Cakes, dumplings, steamed puddings and big hunks of bread are often referred to as ‘comfort foods’. For some people, the comfort is being derived from the morphine-like effect that the gluten is having on their brains. The extra fats and sugars added to these gluten-foods (such as doughnuts) also contribute to their addictive nature.
I have coined the term “The Gluten Syndrome” to bring together the wide array of symptoms that can be caused by gluten. Gluten commonly affects your gut, you skin and you nerves. People often ask me, “If gluten-illness is so common, then why is this syndrome new? Why have these adverse reactions to gluten been overlooked for so long?” The reason is that there is no single recognizable illness that is caused by gluten. Also, the gluten/celiac blood tests were only developed in the late 1990s, and it has taken all of this time to uncover the extent of the problem.
Gluten reactions trigger a wide range of symptoms and illnesses. Of course, gluten is not the cause of all our ailments, but it is responsible for many of the chronic aches and pains, and persistent mood and behavior problems, and constant bowel issues, that just won’t go away. Most people with ‘Gluten Syndrome’ have repeatedly sought help and advice from their medical services, but have not come away with a satisfactory answer.
There are a great many symptoms that can be provoked by gluten. But, because these symptoms are so common, they usually get overlooked. Worse, the symptoms are usually attributed to “virus infections”, or “teething”, or “behavior disturbance”, or “being naughty”, or “in your head”: whilst gluten, which is often the culprit, goes unrecognized. If you can answer ‘yes’ to any of these symptoms, you could be suffering from the affects of gluten:
Gut/ bowel problems
Bloating and gas troubles
Gastric reflux or heartburn
Diarrhea or constipation
Unhappy with your weight
Not growing well
Itchy or bad skin
Brain and nerves problems
Lack energy, weakness
Tired and exhausted
Headaches or migraine
Heel depressed or moody or grumpy
Find it hard to think clearly
Hyperactive or cranky
Attention Deficit Hyperactivity Disorder (ADHD)
Mental health problems
Runny nose and sinus problems
Chronic iron deficiency
“We[* *]live in a time of phenomenal transformation”
Over 50 years ago it was thought that the only gluten-illness was celiac disease and that it was rare: occurring in about 1 in 5000 people. But evidence is now accumulating that gluten is bad for us all. I would like to tell you how this gluten story has come about.
Around the time of my birth, over sixty years ago, Professor Willem Dicke was professor of medicine in the Netherlands, working in his children’s clinic. He was very concerned about a group of very sick children who were not growing well, who had bloated tummies and constant diarrhea. Their mothers were saying that they thought that it was wheat that was making them sick. He listened, he researched, and he had a breakthrough. He was the first person in the world to link the eating of gluten to this strange illness called “celiac disease”. In his research papers and thesis (1950) he called this condition “gluten sensitivity”. The title of his thesis was “Coeliac Disease: Investigation of the harmful effects of certain types of cereal on patients suffering from coeliac disease.”
The mothers of Professor Dicke’s patients, in Holland, did the best they could do to feed their children healthy nourishing food. But their children didn’t grow. They remained short, thin and sick, with bloated tummies, thin arms and legs, and pale runny poops. They got sick because their intestines were being constantly damaged by gluten. They could not absorb the apparently healthy food that their mothers were feeding them. Initially, this disease was diagnosed by removing wheat from the diet, seeing the child get better, and then re-feeding with wheat and seeing them get sick again.
The next step of the process was the development of the intestinal biopsy. A technique that was developed in the 1960s to put a thin tube down into the upper intestine, to fish-up a piece of gut tissue, and then look at it under a microscope to examine the damaged (called villous atrophy). At this time, 50 years ago, there were no useful blood tests to detect this disease.
It was logical to think that if gluten was causing poor absorption of nutrients in a severely damaged gut, then celiac disease must be a gastrointestinal disease. Therefore, celiac disease entered into the realm of the gastroenterologist. Initially, this disease was thought to be rare, occurring in about 1-in-5000 people. But over the last 50 years it has been shown to be a much more common illness, occurring in about 1-in-80 people (and in some communities even higher).
Interestingly, this all started in 1950, at the same time as the first information linking smoking tobacco smoke to lung-cancer was emerging. Over the last 60 years both tobacco and gluten have been shown harmful to us all.
I would like to introduce Elizabeth to you. She was my first gluten-illness customer who did not have celiac disease. This was 25 year ago.
I first met Elizabeth when she was six-years old, when her mother brought her my gastroenterology pediatric clinic, in 1989. She was thin, short, and when you turned her side-on she had a big belly. She had been unwell for years. Two other pediatricians (both professors) had investigated her for celiac disease, but her tests had been negative.
So when she arrived in my clinic with her mother, this was challenging for me. You see, I was just a junior consultant pediatrician, running my newly-setup gastroenterology outpatient clinic, and Elizabeth had already previously seen two professors, one in Dunedin and one in Wellington, New Zealand. Both professors thought she had celiac disease. Both professors had organized a gut-biopsy test (the test where you put the tube-thing down in the small intestines and pull it up a piece of tissue). On both occasions her tests were normal, and they both declared that she did not have celiac disease. But they couldn’t work out what was wrong with her. Elizabeth remained unwell and unresponsive to the anti-gastric-acid treatments. She was miserable, she wasn’t growing, she had tummy pains, she was vomiting, she smelled of acid, she didn’t sleep well at night, and she was on medications that didn’t help.
I was in a predicament: a junior consultant, wondering what on earth am I could do to help her. I thought she had celiac disease as well, and so I repeated her bowel biopsy tests – and they were yet again negative. What was I to do?
But, Elizabeth was lucky. She was lucky, because she came to my clinic and I had an interest in food allergy and food intolerances (remember I completed a doctorate thesis in food allergy). She was also lucky because this was the year that anti-gliadin antibodies (AGA) were discovered. Anti-gliadin antibodies are created by your immune system when your body reacts against gluten.
I measured this gluten-antibody in Elizabeth’s blood and to my surprise, her level of AGA was extremely high. Being junior, I went to my senior colleagues to discuss it and said, “Hey, I know what’s wrong with Elizabeth, she’s got a gluten problem”. They countered: “She hasn’t got celiac disease, so she can’t have a gluten problem. Celiac disease is diagnosed by an abnormal bowel biopsy and all of her three tests have been normal.” End of story!
After pondering this abnormal AGA result for a few months, I acted. Without telling my colleagues, I recommended to mum that she put Elizabeth on a gluten-free diet. She did, and she got better! When mum came back to my clinic a month later she said: “Doctor Ford, it’s a miracle, she’s getting better”. And I wrote in my notes, “At last we are getting somewhere.”
I declared that she had a gluten-illness. This was a landmark for me. Within a couple of years Elizabeth had completely recovered and was in top nutritional condition. She is still gluten-free and gets symptoms even with the smallest amount of gluten.
But I was disturbed. My formal teaching about gluten, and my experience with Elizabeth were out of kilter – discordant – conflicting. When I experienced Elizabeth’s remarkable recovery, I began to think … if Elizabeth has a gluten-illness, and as I had been in pediatrics for many years, surely there must have been other children I had seen in the past who also had this same problem. I wondered how common this was.
I started to get to work. I tested everyone in my clinic for anti-gliadin antibodies (AGA). If they had high levels, even if they did not have celiac disease, I suggested a gluten free diet. I put hundreds of children who high AGA results on gluten-free diets, with great success.
After a few years I had collected enough data to make some medical presentations. In 2004 I presented a group of 28 gluten-illness case studies of children to a big medical conference. I also presented a study of another 190 children who had biopsy tests, but did not have celiac disease, of whom the majority responded to a gluten free diet. I finally presented a group of nearly 1000 children of whom most got better by going gluten free (links to this research can be found at the end of the book).
I was not prepared for the response of my medical colleagues. They said that the only true illness caused by gluten is celiac! And that these children were having a placebo response. I felt that I was banging my head on a brick wall.
I then realized that although I had been describing these children, who were getting sick with gluten, that this condition did not yet have a name. Their diseases (such as eczema, gastric reflux, diarrhea, constipation and behavior disturbances) were just a jumble of illnesses that nobody had yet gathered together. So I coined the phrase “Gluten Syndrome” and wrote the book describing it. (?)
Consequently, this concept been widely taken up. Over the next few years, with more research, I realized that the mechanism for many of these gluten-illnesses was likely to be nerve and brain harm. I proposed that gluten can adversely affects the nerves, so that gluten could harm your brain tissue. ( )
Over the last 10 years many concerned health professionals, like me, have written books about the gluten syndrome. Professor Alessio Fasano – a leading light in celiac disease and gluten research in America (Director, Center for Celiac Research, Boston, Massachusetts, USA) – has written the book “Gluten Related Disorders” and he says, most of us are potentially at risk from gluten. He writes, “While in the past it was believed that celiac disease was the only clinical condition instigated by gluten ingestion, now it is appreciated that there is a spectrum of gluten-related disorders.”
‘‘We did things in 1969 because we wanted to do them. Today, we’ve got risk managers who are paid to tell us why we can’t do them.’‘ Neil Armstrong, first astronaut on moon
You might be thinking that the children from my clinic have little to do with you or your family. You might be feeling sorry for Elizabeth with her severe illness, but pass it off as just an interesting story. You might be thinking that the writings of gluten-sensitivity-authors are not relevant to you. But Fasano asks this question in his ‘Gluten related disorders’ book, “Why is gluten harmful to so many people?” He continues, “All individuals potentially prone, even those with a low degree of susceptibility, are therefore likely to be affected by some form of gluten reaction during their lifespan.” He is saying that we are all at risk.
So let me tell you about Catherine Tilley. She was working in the baking department of a big wheat flour mill. Her job was to measure how good the gluten was in their flour. This led her to research the structure of this gluten. Surprisingly, she discovered that gluten is indigestible. Yes, that’s right – she found out that nobody can digest gluten. We humans do not have the ability to break it down with our gut enzymes. And Catherine showed that during the bread baking process (dough making, proving and cooking) the gluten molecule becomes so wound-up in itself that it becomes totally indigestible. None of us can digest this protein.
Unfortunately for Catherine, she got progressively sick whilst doing this work, immersed in flour, and ended up getting celiac disease. She had to quit her job due to the massive gluten contamination that she was exposed to every day. Alessio Fasano’s team (Fasano A. Surprises from Celiac Disease. Scientific American 2009: 301, 54-61) have also demonstrated our inability to breakdown gluten. The implication is that these highly immunogenic gluten fragments stimulate our immune systems in deleterious ways.
Worse, Fasano’s group has also shown that everybody who eats gluten gets gut inflammation. This is due to the zonulin substance that gets stimulated and released by gluten. Zonulin is a gut protein that makes your gut leaky. The indigestible fragments of gluten induce our enterocytes (the intestinal lining cells) to release the protein zonulin, which loosens the tight-junctions (the spaces between these cells). This is what causes the “leakiness” of your gut wall. This can in turn precipitate autoimmune disease and other food sensitivities. It is also part of the mechanism that contributes to celiac disease and gluten-sensitivity.
It seems that our bodies respond against gluten more like attacking a toxic bacteria, rather than recognizing it as a food. This means that we all have to develop ‘immune tolerance’ to gluten, unlike any other food. So it is not surprising that so many of us succumb to this constant immune attack going on inside our gut.
Even worse, a neurologist in Sheffield, UK, (Dr. Marios Hadjivassiliou) has shown that any person who has any undiagnosed neurological condition is likely to have a gluten problem. He has described hundreds of patients suffering from what he calls ‘gluten-neuropathy’ and ‘gluten-ataxia’ (Gluten sensitivity: from gut to brain – ).
Interestingly, he uses the same blood test to diagnose his patients that I had used to diagnosed Elizabeth, 25 years ago: the AGA test. His research team has shown that the AGA can attach to, and cause damage to your nerves and brain. The problem is that once this nerve damage has become established, going gluten-free might not be able to undo the damage. It is often too late. The damage might be permanent. Currently, we do not know who is susceptible to this neurological gluten-damage. Gluten has also been associated with mental illness such as depression and schizophrenia. Early awareness of these neurological problems and psychiatric symptoms might trigger the early adoption a gluten-free. However, the only sure way to avoid gluten-nerve-damage it to totally remove gluten from your diet right now.
Hadjivassiliou in his latest paper writes: “Patients with non-coeliac gluten sensitivity (NCGS) can experience a range of gastrointestinal and extra-intestinal symptoms. A study has now demonstrated that gluten is independently associated with depression in patients with NCGS. NCGS-associated depression might share similar pathophysiological mechanisms to other neurological manifestations observed in gluten-related disorders, such as ataxia and encephalopathy.”
We are all susceptible to autoimmune disease. The relationship between gluten and autoimmune disease has been evaluated in detail by Fasano (2006) in his paper “Systemic Autoimmune Disorders in Celiac Disease: Celiac Disease Comorbidity with Other Autoimmune Diseases.”
He states: “The co-morbidity between celiac disease and other autoimmune disorders has been clearly established. Celiac disease is an immune-mediated disorder clinically characterized by a multitude of symptoms and complications”.
He goes on to suggest that autoimmune disease is more than molecular mimicry. It is likely that the continuous stimulation by non-self antigens (environmental triggers) appears necessary to perpetuate the process. The ingestion of gluten is of course is one such “continuous stimulation by non-self antigens”.
Prof Yehuda Shoenfeld, global autoimmune expert says, “When the gluten–autoimmune link is looked for, it is found. The speculation is that gluten is an important trigger/adjuvant in the autoimmune process. However, the magnitude of the gluten effect is unknown. Perhaps 10% of autoimmune disease is instigated by gluten – this is likely to be a gross underestimate.
defines the autoimmune problem in these words:
“Your body’s immune system protects you from disease and infection. But if you have an autoimmune disease, your immune system attacks healthy cells in your body by mistake. Autoimmune diseases can affect many parts of the body.”
“There are more than 80 types of autoimmune diseases, and some have similar symptoms. This makes it hard for your health care provider to know if you really have one of these diseases, and if so, which one. Getting diagnosed can be frustrating and stressful. In many people, the first symptoms are being tired, muscle aches and low fever.”
“The diseases do not usually go away, but symptoms can be treated.”
Here is a list of the more common autoimmune diseases, and many of these have been associated with celiac disease.
Insulin Dependent Diabetes (Type I)
Over a century ago, Arthur Schopenhauer said: “All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.”
Currently, the gluten-related disorder concept is being violently opposed by many sectors. And especially from the wheat-growing groups and still by many gastroenterologists. Most medical professionals remain skeptical about gluten-harm. There has been no lack of critics of this gluten story. The medical profession is rightly very conservative and demands a high standard of proof before changing medical guidelines. But how much proof is necessary? There is now a large amount of medical research supporting gluten-related illnesses. However, this is a relatively new concept and it will take a generation of newly educated professionals until there is widespread confidence of its diagnosis and management.
There has been an entrenched position on celiac disease for decades. The currently held general ‘medical’ belief is that celiac disease is exclusively a gut disease and that the only role for a gluten-free diet is for the treatment of a person with the biopsy-proven histological damage of celiac disease. This historical stance is clearly obsolete and harmful. Guidelines are now changing to include gluten-sensitivity. But it will take a long time for this new information to percolate through the medical establishment. Surely a change of diet is much less harmful than taking medications to suppress the symptoms.
One of the main objections doctors have against people trialing a gluten-free diet is that it will “mask developing celiac illness”. This is a crazy notion to me. If gluten is making someone sick, then surely it is best to remove gluten from the diet, immediately, rather than wait until there is established severe gut and other tissue damage, from which you might not fully recover.
In the year 2025, Smokefree New Zealand is working towards the reality of New Zealand becoming a smoke-free country. Anybody with any common sense would not smoke tobacco. In 1950 when I was born, that was the first year that smoking was shown to be deleterious to our health and cause cancer. It took until 1964 before the Royal College of Physicians and Surgeons, in the USA, released its first report on smoking and health. As you know, tobacco companies denied this vehemently. But things do eventually change.
Now the evidence is mounting against gluten. It affects us all. It affects your gut, your skin and your brain. I believe that in 2025, as well as being a smoke-free nation, we will be well on the way towards a gluten conscious nation.
“All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident” – Arthur Schopenhauer
Ridicule, opposition and acceptance is the standard path of progress. This path can be a long one (a lifetime). The slow adoption of new scientific concepts in physics, so frustrated Max Planck that he wrote: “A scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it.”
Should your whole family go gluten-free? That is a huge question – and one that I would like to avoid answering! This is because I encounter a lot of resistance to the idea that we should all entirely avoid gluten in our homes. Currently, most people would consider this to be an extreme point of view.
However, to me it seems, there is a huge benefit for households to adopt a gluten-zero lifestyle. The resistance comes from the ‘cost’, the ‘inconvenience’, and the ‘social disruption’ that changing your diet will generate. Also, many dads do not want not give up their beer. One of the problems is that if there is gluten in the house, then there will be cross-contamination in the kitchen. Also, it is a weak role-model for the parents to be eating forbidden gluten foods in front of their children. When a child is denied previously allowed gluten-foods, it might seem to them like a punishment or an arbitrary rule: children often do not understand the reasons for them being put onto a gluten-free diet (By the way – the parents can eat gluten outside the house if they are prepared to play gluten-roulette).
Having said all of that, your first steps of taking your gluten-affected-child off gluten is a great start, and many children seem to manage with a low level of cross-contamination.
Yes, there are lots of issues to think about. These illnesses, related to gluten, are complicated and tricky. My prediction is that increasing numbers of people will continue to move to a gluten-zero diet. It is also likely that that are other toxic/harmful wheat proteins, in addition to gluten (read the book Wheat Belly by William Davis). It will take a long time to unravel all of these strings. Most people are after an easy answer. But I’m sure that it is going to become even more complicated as we learn more.
A mum asked me, “Should I dabble with a gluten-free diet?”
Well that got me thinking. The answer is, “Yes! And no!” Experimentation is part of learning and living. We have to start somewhere. So dabbling is a good start – but you need to have a plan, otherwise you will get nowhere and end up feeling confused.
Can you swim? If so, then is is likely that you have been in a swimming pool. Can you remember dipping your toe into the water for the first time to test the water? Next you paddle. With increasing confidence, you wade up to your waist. But it is only once you immerse yourself fully in the water that you can actually swim. Only then can you experience the freedom of the water. Simply: without immersion you cannot swim.
So how is this swimming metaphor related to gluten? Can you just put your toe into gluten-free world and just lower your gluten intake a little bit, and hope to miraculously feel better? Or do you need gluten-free immersion? In my experience most people who are gluten-sensitive need to avoid gluten totally – I call this gluten-zero. We all have to travel this road: from dabbling to immersion.
Let’s return to first experiences. The word “gluten” is such a new word to most people, that it takes quite a long time understand its intricacies. To make any progress, we need answers to lots of questions: What is gluten? Why does it make us sick? What foods is it found in? What symptoms can it cause? What tests are needed? Are you affected by gluten? Do you have celiac disease? How strict do you have to be? How long before you will feel better? How long would you need to stay gluten-free? What about the rest of your family? What do you ask for when you go out for a meal? Can you eat take-outs? The answers to these questions will help you feel competent with gluten-free foods.
We all start our gluten-free knowledge from naught – when we know nothing about it. We then become conscious that there is something called “gluten” in lots of our everyday foods, and people are saying that it might not be good for us to eat. This is when our dabbling begins, when you dip your toe into the gluten-free waters and start to learn about the gluten-health issues. You wonder if this gluten-free thing is a sensible thing to adopt, if it something that you should take notice of. Or should you just dismiss it as a fad.
In my experience, once you have worked out that you might be gluten-sensitive, there are a number of steps to go through. I call this ‘Ten steps to zero’.
1) Naive to gluten. Initially, you know nothing about gluten.
2) Awareness. Then you hear about gluten and gluten-related-illness.
3) Gluten conscious. Next you wonder if gluten might be affecting you and if you should stop eating gluten.
4) Get tests. At this stage I recommend that you get some blood tests – it is important to make the distinction between celiac disease and non-celiac gluten sensitivity (however, the border between these entities is blurred (see “the blurred line” below). For my recommendation for blood tests see http://drrodneyford.com/faq/bloods-tests/gluten-blood-tests.html
5) Get diagnosed. If celiac disease is diagnosed by your tests (which may include endoscopy) you will need to go gluten-free, lifelong. If blood tests are negative to for celiac disease but positive to anti-gliadin-antibody (AGA) or positive to Cyrex, or Enterolab gluten results, then trial a strict gluten-free diet for the next 6 months (be totally committed to gluten zero). If all of your tests are negative, that still does not rule out gluten/wheat protein intolerances.
6) Be committed. Make a commitment to change your food to totally gluten-free (I call this gluten-zero). Start learning about buying and preparing gluten-free food, and reading food labels and food allergen lists.
7) Gluten challenge. If you do not have celiac disease, and if you remain unsure if gluten is harmful to you, then eat gluten again and see if you get sick again (this gluten challenge can takes days or months to turn positive).
8) Cross-contamination minimization. Some people are extremely sensitive to gluten, that even a few gluten-crumbs can upset them.
(To understand all the issues see the link:
9) Eating out. Trusting other people to prepare and serve gluten-zero food requires learning and teaching of wait-staff, food handlers and chefs. Including your families.
10) Gluten zero. You are now immersed in the gluten-free world: what I call living gluten-zero. You are now ready to teach others.
In summary – at the start we all dabble as we learn. However, to get the most benefit of being gluten-free, you need to be immersed in zero gluten, lifelong. Without gluten-zero, you will not fully heal.
(See link: ).
Celiac disease and gluten sensitivity are part of the spectrum of gluten-related disorders.
Disagreements still exist between Celiac Disease Groups and Gluten-Intolerance Groups. I think that these disputes are usually generated by factual errors and lack of knowledge. There are a number of clarifications that I suggest. The line is blurred.
1) From my observations in my Pediatric Clinic over the last 30 years, I have found that most people who are gluten sensitive produce antibodies against gluten, called Anti-Gliadin-Antibodies (AGA). There is a large literature on this. AGA are also recommended in the Fasano paper the “spectrum of gluten related disorders”, for the celiac and gluten sensitivity work-up. I use them on a daily basis. It is likely that gluten-sensitivity is an immune-mediated condition. However, all of the putative proteins have yet to be identified.
2) The group of people who have celiac disease, and the people who have gluten-sensitivity, have identical symptom lists. They can also be equally harmed by gluten. My recommendation is that everyone who has adverse reactions to gluten should be gluten-zero, as the problems of cross-contamination are important for everyone.
3) Although celiac disease and gluten-sensitivity superficially appear to be two distinct conditions, I think that it would be more accurate to say that the only difference between the two conditions is that the people with celiac disease have the capacity to develop intestinal damage (villous atrophy), which is the end stage of the celiac disease process. Celiac disease is a progressive illness: early on in the development of celiac disease, the person may have significant symptoms, they may have elevated AGA antibodies, but they may not yet have evidence of intestinal damage. At this stage these two conditions are indistinguishable.
4) How early can you diagnose celiac disease? Do you have to wait until there is substantial intestinal damage so that you can make the classic diagnosis with villous atrophy (by endoscopy)? Do you keep on eating gluten until the gut damage has become fully established, or do you go gluten-zero before the damage has occurred? (and consequently you will not know if you are gluten sensitive or had early celiac disease). The HLA gene (DQ2/DQ8) cannot be used as a casting vote in these circumstances. It is my recommendation to abandon eating gluten as early as possible, and not wait until you have substantial intestinal damage, which may never heal.
5) Not only is the gluten-intolerant community (this includes celiac) confused about gluten. Also, the medical fraternity is confused. The science and clinical issues are rapidly developing, whilst most medical practitioners are still only looking for the classic celiac with weight loss, malabsorption, and a bloated tummy (this explains the fact that an amazing 80% of current celiac sufferers have yet to be diagnosed). Many people request celiac tests of their Health Practitioners but are denied this test because they are not judged to be sick enough. The community is now much more aware of gluten-related-disorder than medical practitioners.
It is my goal to ensure that there are no undiagnosed celiac patients in my Clinic. How is this possible? It can be achieved by organizing blood tests on every single patient who could conceivably have celiac disease or gluten sensitivity. In my experience, most symptoms that can be attributed to gluten are simply dismissed as childhood ailments or behavior problems by most health professionals. They have not yet linked in their heads the relationship between gluten and common symptoms. These illnesses have now been given the label “gluten related disorders”.
I recommend that everyone, before going onto a gluten-free diet, should get the relevant blood tests looking for celiac disease and gluten sensitivity.
Now it is back to you. Have you had enough information to understand how dangerous gluten is for us all? I have told you that gluten can annoy everyone’s guts, skin and brains. The big question is “Who warrants a gluten-free diet?”
My mum died 10 years ago. She had Alzheimer’s. She had autoimmune disease. She was thin. She probably was gluten affected. She might have even had celiac disease – she was never tested.
My dad died last year. He had ongoing eczema, and ended up with dementia. He was interested in my work on gluten, but didn’t want this knowledge to interfere with what he was eating. He knew intellectually that he should go gluten-free, but he didn’t want change in his life – he was never tested.
And what is going to happen to me? I have been gluten zero for the last ten years. I have got the genetic predisposition for coeliac disease (I carry the gene).
But more importantly – what about you? Have you had a good look at what you are eating every day? Are your food choices serving you well? Could your health be improved? If you have any chronic health issues, then you could be gluten-affected.
So what can you do today? The first step is to get a blood test and see if you are in the group of people who have undiagnosed celiac disease. Also, the AGA test is useful, but not available in all medical laboratories (you have to ask your health practitioner to specifically order this test – it is not usually part of the ‘celiac screen’). If you have any chronic illnesses, then consider a gluten-free trial.
Remember, once gluten damage gets established, it is not necessarily reversible.
Written in the spirit of cooperation and knowledge sharing.
If you have enjoyed this book, then I ask you to please write your review so others can be helped.
Dr Rodney Ford
Professor Rodney Ford
Pediatric gastroenterologist and allergist
Dr Rodney Ford is a Pediatric Gastroenterologist, Allergist and Nutrition Consultant. Former Associate Professor of Pediatrics at the Christchurch School of Medicine, University of Otago. He has an international reputation on food allergy and gluten disorders. His major area of interest is the relationship between what you eat and what that food can subsequently do to your overall health: good or bad. He has been helping people with their food problems for over thirty years.
He graduated with Honors from the University of New South Wales in 1974 (MB BS). He went on to study food allergy and intolerance problems in New Zealand, Australia and the United Kingdom. He was admitted as Fellow of the Royal Australasian College of Physicians in Paediatrics (FRACP) in 1981. He was awarded his Doctorate of Medicine (MD) by the University of New South Wales in 1982 with his thesis titled: “Food Hypersensitivity in Children: diagnostic approaches to milk and egg hypersensitivity”. It was a major work about the diagnosis of food allergy in children.
He now runs the ‘Children’s Clinic and Allergy Centre’, an allergy, gastroenterology and nutrition clinic. He has written over a hundred scientific papers including book chapters.
In this book he asks the question: “Is eating gluten worth the risk?”
His mission is to increase global gluten consciousness.
Spectrum of gluten-related disorders: Consensus on new nomenclature and classification.
Sapone, A.; Bai, J.C.; Ciacci, C.; Dolinsek, J.; Green, P.H.; Hadjivassiliou, M.; Kaukinen, K.; Rostami, K.; Sanders, D.S.; Schumann, M.; et al. BMC Medicine. _]2012, [_10, 13.
Coeliac disease: Noncoeliac gluten sensitivity—food for thought
Imran Aziz & Marios Hadjivassiliou
Gluten sensitivity: from gut to brain
Marios Hadjivassiliou, David S Sanders, Richard A Grünewald, Nicola Woodroofe, Sabrina Boscolo, Daniel Aeschlimann
The Lancet Neurology, Volume 9, Pages 318 – 330, March 2010
Surprises from Celiac Disease.
Scientific American 2009: 301, 54-61
Zonulin – how it works
Zonulin and its regulation of intestinal barrier function: the biological door to inflammation, autoimmunity, and cancer.
Physiol Rev. 2011 Jan;91(1):151-75. doi: 10.1152/physrev.00003.2008.
The Gluten Syndrome: is wheat causing you harm?”
Gluten brains: the grain-brain connection
Gluten: ZERO global
Eczema! Cure It!
Gluten (related) Disorder: Sick? Tired? Grumpy?
Gluten: worth the risk?
Dermatitis Eczema: Wheat Gluten – solving the eczema puzzle.
The gluten syndrome: a neurological disease.
doi: 10.1016/j.mehy.2009.03.037. Epub 2009 Apr 29.
Abstract: Who warrants a gluten free diet?
Abstract: Gluten reactions: ten times the celiac problem
Dr Rodney Ford Photos on flickr
[Dr Rodney Ford personal background
**]An interview with Dr Rodney Ford – his insights into gluten harm
[Dr Rodney Ford TEDx presentation
Gluten: worth the risk? any one, any symptom, any time.]
Daily Bread: Can ANY human body handle gluten?
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“Dr. Ford: Your eClinic is absolutely wonderful! I used it over the summer for my 3 year old (after 2 years of visits with various specialists, dozens of tests, too many prescriptions to count and no answers) ... after 15 minutes on your eClinic, I had a list of things go over with his pediatrician, including the printed letters from you and that is when we finally discovered his egg allergy and casein intolerance. Just 2 weeks off of those foods and his severe eczema and cradle cap were 100% gone! You are blessing and I thank you from the bottom of my heart for everything you do.
Gluten can make any one ill, at almost any time in their life, with almost any symptoms. Gluten cannot be digested by any of us, and causes gut inflammation in everyone. Gluten can trigger irreversible autoimmune disease and causes celiac disease. Once gluten-damage become established, it can remain permanently. Is eating gluten worth the risk? Find out now! This book was the basis of his TEDx talk. Dr Rodney Ford has over 35 years of experience of helping people with food allergy and gluten-sensitivity. Author of The Gluten Syndrome. Contents of the book: Introduction Worth the risk? -- 1. What did your mother know? So, what is gluten? How can gluten make you unwell? Gluten is found in processed foods Gluten overload Gluten is addictive Gluten symptoms -- 2. The gluten-illness story My first gluten-free customer Dr Ford – “it’s a miracle” What else could I do? -- 3. Are you at risk? None of us can digest gluten All of us get gut inflammation from gluten Gluten can damage your nerve cells Auto-immune trigger The critics -- 4. Gluten zero family? Dabbling with gluten Blurred lines Worth your risk? -- Suggested additional reading and websites: Ebooks by Dr Rodney Ford available on these links Medical reports by Dr Rodney Ford Personal details on Dr Rodney Ford