Gluten-Related Disorder: Sick? Tired? Grumpy? by Rodney Ford by Rodney Ford - Read Online

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Gluten-Related Disorder - Rodney Ford

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Chapter 1. Why another book?

We do not choose to be sick

Asleep at the wheel

Sick? Tired? Grumpy?

So what is new?

Why should you read this book?

How is the book structured?

"Our lives begin to end the day we become silent about things that matter" - Martin Luther King Jr.

I will not remain silent! With over 35 years of experience as a pediatrician, looking after sick children, I have come to the conclusion that much of this sickness stems from their food, and especially from eating gluten. Every day in my Clinic I see babies, children, teenagers and exhausted parents who are suffering from a wide range of illness. Of course, not all of this illness is caused by gluten. But gluten-illness turns out to be a major contributor to chronic ill health. So, this book is devoted to explain all about gluten and the harm it can cause you, your family and your community.

This book was assembled to give you the opportunity to read the stories of people who were needlessly suffering; who were sick and tired; who had mood and behavior disturbances; and who were desperate to feel better. My hope is that this book will also help health professionals, who are investigating sick people, to get a better handle on the sorts of problems that gluten can cause, and how to interpret their test results.

Children need help urgently

In our everyday world, we rely upon the professional people who surround us. But unfortunately the world that we live in is both complex and contradictory. It is often difficult to get accurate and relevant information. We are bombarded by advertisements telling us to buy foods that we know are bad for us. Regrettably, greed for money has distorted our food chain. Sadly, commercially-orientated health insurance and medical organizations have interfered with our healthcare. Disturbingly, profit-centered pharmaceutical companies promote pills and medicines rather than good nutrition.

As Martin Luther King Jr. said: Our lives begin to end the day we become silent about things that matter. It is my belief that gluten-harm matters a lot. Therefore, I continue to speak out about it. I have already written many books about the issues surrounding Gluten Syndrome. My goal is to increase global gluten consciousness.

Become gluten conscious

By this I mean that every medical practitioner, every specialist, every chef, every food server, every café owner, every food manufacturer, every supermarket owner, and every farmer needs to have knowledge about gluten. I want them to know which of the grains are safe, I want them all to be aware of gluten cross-contamination, about appropriate food substitution, and about the serious harm that gluten causes to so many of us. Yes, I feel that if something matters, then surely I need to speak out about it. This is the reason for writing another book.

We do not choose to be sick

The families who come to my clinic do not choose to be ill. They would rather be healthy and be at home or at work (or at play). However, they come to see me because I am seen as the Clinic-of-last-resort. Perhaps they have heard on the grapevine that Dr. Ford can make a difference. That Dr. Ford will not just treat the symptoms. That Dr. Ford will take you seriously and there is a good chance that he can help you get better. Perhaps he will listen to you and not just give you a band-aid or a pill.

So why have I got this reputation? Some of my medical colleagues think of me as a maverick or revolutionist, because I am interested in food-related disorders. My background is in gastroenterology and food allergy. Over my practicing lifetime I have recognized that good food (in fact I should say excellent food), is essential for excellent health. I have seen many sick people who are sick because of the foods they are eating. This seems so obvious to me!

However, it came to my notice about 30 years ago that gluten could frequently disturb good health. At that time, in 1983, I was a Research Fellow working with Prof. John Walker-Smith in London, at the Queen Elizabeth Hospital for Sick Children, Hackney, UK. He had a deep interest in small bowel disease, and of course he was investigating children who might have celiac disease (remember, this was a long time ago when the blood tests to diagnose celiac disease were only just being developed). It was at that time when a gluten-free diet was prescribed only for celiac disease. It was at a time when celiac disease was considered rare and was thought to occur in only one in a few thousand people. It was at a time when the only physicians who were looking for this disease were pediatric gastroenterologists.

Asleep at the wheel

"Predictions are difficult, especially about the future" Danish proverb

Do you get the feeling that most of the medical community has been asleep at the wheel, blindly driving down the celiac road, whilst failing to notice those people who are suffering from the broader effects of gluten? Although the scientific knowledge about gluten has drastically increased, the clinical behavior of most health professional has remained unchanged. This has created a huge gulf between knowledge and action. The purpose of this book is to wake up these drivers (and passengers) and explain what has been going on. A lot is happening, so it is difficult to keep up.

Huge gap in gluten knowledge

Detractors of gluten-illness say that you need the certification of a ‘qualified physician’ to make the diagnosis. However, most physicians remain unaware of the spectrum of gluten-related disorders. Did you know that the majority of people with celiac disease (more than 80%) remain undiagnosed because of the reluctance of their physicians to do the relevant blood tests? The research knowledge of gluten-illness has out-stripped physician knowledge. Hence, the urgent need for community action.

Communities know more

Obviously, we all know that gluten is not the cause of all sickness. But gluten does have an important part to play in chronic ill-health and disease. It is my belief that, when the gluten problem becomes more fully understood, there will be a revolution in the health, the food and the farming industries.

Sick? Tired? Grumpy?

This book is about healing the sick, the tired and the grumpy! We learn best from stories, so I have collected the stories of children and parents who have been diagnosed as being gluten-sensitive/intolerant. They tell, in their own words, about their experiences, how they finally got a diagnosis, and what going gluten-free has meant to their children and their families.

The good news is that most of these children are happy again. These people tell how it is for them. They tell about their illnesses and pain, about their anguish on changing their diet and about their triumphs on being well again.

Listen to the voices of our children

Parents recount how they struggled to get a diagnosis, how they were fobbed off, and how they were so relieved to eventually have their children diagnosed with gluten-sensitivity. How they were desperate to find an answer for their sick and grumpy children. How they overcame the difficulties of the gluten-free diet and how their children, at long last, had got better. They were sick and tired of being sick and tired.

In medical terminology, these stories are called anecdotes, or case studies. If a single person tells a story, it is regarded with scepticism. When several people tell the same story, it is dismissed as coincidence. But when fifty people tell their stories, then it becomes a phenomenon that needs attention. However, the medical skeptics then invoke the explanation of the placebo effect and demand a double-blind randomized placebo-controlled trial. But to me, a parent telling me that their child is remarkable better on a gluten-free diet, after years and years of sickness, is compelling.

I see a continuous stream of children (and adults) who have been needlessly suffering because of the damaging harmful effects of gluten on their health. I have asked these people to write down their personal experiences. They have willingly done this so that they can let others know.

Reading can seriously damage your ignorance

So what is new?

There needs to be something new to make this book worthwhile for you. Here are ten new points.

1) Gluten causes a wide spectrum of ill health

The concept that gluten causes so much sickness to so many people is new. To date, the problem of gluten-sensitivity has not been widely documented. However, the concept of a range of Gluten-related disorders has now been put forward and this idea is gaining momentum. The prime reason for the lack of awareness of gluten-harm is because the range of symptoms caused by gluten is so wide. It is a condition that most of the medical world has been unaware of. These people are often sick, tired and grumpy! They are tired and lack energy.

2) One in ten of the population is gluten-sensitive

Up until recently, a gluten-free diet had been medically restricted to people who have been given the diagnosis of celiac disease (also previously known as gluten-sensitive enteropathy). However, celiac disease is now recognized to be just a small part of the spectrum of gluten disorders. Celiac disease is estimated to affect about 1-in-100 people. By contrast, accumulating data indicates that gluten-sensitivity affects at least ten times this number. Alarmingly, this means that 1-in-10 adults and children are being harmed by gluten. If all of these people can be identified and put on a gluten-free diet, then their wellbeing would be hugely improved.

3) Diagnosis by Anti-gliadin antibodies (AGA)

The spectrum of illness and disease that gluten can cause is so wide that it is hard to believe. I think that this is the main reason for scepticism. Also, gluten is such an integral part of our western diet that few people are willing to give a gluten-free diet a go. Therefore, until reliable blood tests are available, it will be impossible to confirm that all of these symptoms could be a consequence of adverse reactions to gluten.

However, the Anti-Gliadin Antibody (AGA) test, also called the IgG-gliadin antibody test, is a specific test for gluten-sensitivity. But it has a low sensitivity (meaning that if you have a negative test, then it does not rule out gluten health problems). Other more accurate tests are currently under development, but it will take many years for widespread adoption and confidence in these new tests.

4) Evidence that going gluten-free helps so many people

This book has been written by the children and parents, who have been adversely affected by gluten. They tell about their experiences in their own words. Their stories have not been modified in any way (other than minor editorial changes). This is a book full of hope and amazing life changes. By telling their stories, these children were excited to be given the chance to make a difference to someone else who was also experiencing their problems. This evidence is new.

5) Whole families can be affected

Are you sick and tired of being sick and tired? Are you irritable and grumpy? There are a number of stories about whole families. Gluten might affect every family member, but in different ways. Any ongoing health problems should be investigated to see if gluten is the culprit. Gluten-sensitivity is a gigantic health problem.

6) You can’t tell unless you test

The idea of testing everyone with chronic symptoms for gluten intolerance/celiac disease is new. Symptoms from gluten-sensitivity are wide-ranging. From my work, it seems that almost any chronic symptoms can be caused by gluten. This means that it is difficult for you to know if your symptoms are caused by gluten until you get tested for it. So, it is very important to get tested. It is also very important that any previously underlying celiac disease is discovered. A strong recommendation is do not go gluten-free until you get your blood tests.

7) Elimination and challenge

Despite the availability of blood tests for gluten sensitivity, the only real way to find out if gluten is causing you symptoms is to completely eliminate gluten from your diet for three months or more, and see if you get better. And then reintroduce it back into your diet to see if you relapse. The problem with this approach is that it is difficult to be committed to a strict gluten-free diet without the evidence of an abnormal test result.

8) The importance of ZERO gluten

How strict should your gluten free diet be? I recommend gluten ZERO. Even tiny amounts of gluten can trigger illness. It is also likely that the antibodies that your immune system generates against gluten are harmful, particularly to the brain and nerves. Currently, commercial enterprises are accepting a definition of gluten-free of less than 20 ppm. This is a commercial compromise, which will not serve the community well in the long run.

9) It is not normal to be sick

We are so often told that our symptoms are within normal limits. The parents telling about their experiences say they felt fobbed off. They felt that their concerns were not being taken seriously. Unfortunately, many medical practitioners consider grumpy, rundown children, who have tummy pains, to be normal. These people had often struggled for years for an answer. Calling sick children normal is not helpful. Categorizing a whole list of common childhood ailments as normal denies them any treatment. The labelling of children’s behavior disturbances and their learning problems as normal behavior is a disservice to their family.

10) New nomenclature

The concept of being gluten-sensitive is still a new idea. This is also the view of group who wrote the paper Spectrum of gluten-related disorders: consensus of new nomenclature and classification. Although this nomenclature is new, the disease is old. One of the problems is to coin an adequate description for gluten sensitivity. To adequately investigate this problem in the medical research arena, a tight definition is needed. However, in day-to-day medical practice, all that is needed is an awareness that gluten can cause significant harm to your health, and after appropriate testing, a trial of gluten-free can be offered.

Why should you read this book?

Do you have a lingering health issue? This book has been put together for people and families who want to experience full health, yet who seem to always have some lingering health problem that is causing them distress. Do you have any chronic symptoms? If so, you also could be gluten-sensitive. You need a blood test. It might be your answer. By reading some of these stories, you may recognise similarities between you and your family with what these people who have so willingly written down. Their objective is to help you. If you do get help from their stories, then they will be overjoyed. These sick, tired or grumpy people are now completely well again. These children are proud to be known as gluten-free kids. If you recognise some of these health issues in your wider circle of friends, then do pass this book around. The goal of this book is to help hundreds of thousands of people. We hope that we can help you and your family.

How is the book structured?

To help you navigate through this book, their stories have been put in the sequence of their main symptoms that these children were experiencing. Of course, there is a big overlap as most of these children had many symptoms. However, some symptoms were more troublesome and distressing than others. The stories are grouped by ‘gluten-sensitive target organs’. We asked many of our children and parents to write down their story. They were then sent this letter:

"Dear (name) Thank you very much for agreeing to contribute to the ‘Sick, tired and grumpy’ book. If you could write a story about your