For the 2% of the population diagnosed with celiac disease, a gluten-free diet is required to avoid significant intestinal inflammation. However, for the remaining 98 percent - do they all need to go gluten free in order to be healthy?
What is gluten and gluten intolerance is a question patients have asked me a hundred times or more. I wrote this page for those who want to know a lot more about this topic; it contains a significant amount of detailed information.
Consumer interest in gluten-free (GF) eating in the USA, UK, Australia and New Zealand is on the rise, and almost one in four today consider going GF. But what is gluten, and why should you go gluten-free, will it really “fix or cure” all of your health problems? These questions and many more I will answer in this article on a topic which sure to interest many who are interested in this dietary approach.
It may be hard for some to understand, but “going GF” was very fringe in the 80s and considered right out wacky by mainstream doctors. The GF diet went from being a bizarre food cult to becoming a true cultural craze, and now, in 2022, it has become a virtual nutritional punchline. In my opinion, it’s just another health fad, and I’ve seen plenty over the years.
Remember when butter was the enemy? Now it’s good for you. You may have lived through times when the Atkins Diet was good, then bad, then good again; you may have wondered why all your friends cut down on salt or went Paleo; and you might even think about cutting out wheat products from your own diet. Do we all need to go GF in order to have great health? Nonsense.
Around 1 percent of people suffer from celiac disease, an autoimmune disease that damages the lining of the small intestine when gluten is consumed and digested. But the gluten-free movement has gone far beyond those who suffer from celiac, becoming a pervasive part of how many people in the West now eat. I believe that there is a growing sense that people (those who don’t suffer from celiac disease) are being a little ridiculous about avoiding every tiny bit of wheat protein.
Is there a scientific basis for all the gluten fear-mongering? Is it wrong to avoid gluten if avoiding it makes you feel better? Alan Levinovitz PhD spent years pursuing answers to them. The result is a newly published book, “The Gluten Lie,” which explores the origins, appeal and dangers of this latest food fad.
Our clinic recommending gluten-free diets almost thirty years ago, but we certainly didn’t make it an ironclad rule that every patient would need to follow a strict GF policy if they wanted to recover their gut function and their health. I call this nonsense. I still feel this way in 2022 and have witnessed first-hand the recovery of many people in my clinic who remained on a diet that included some foods containing gluten. It’s all about how much gluten you consume and the state of your gut. It’s not about treating gluten like it’s some kind of nuclear waste substance that destroys your gut the moment it hits your small intestine.
But I’ve also seen some who didn’t recover unless they went GF, especially those patients treated by their GP with antibiotics from time to time. These were the chronically unwell patients that needed a complete gut reset, and my recommendations in those cases were (that still stand today) quite different for the average unwell person.
The eighties were the days when those who approached their supermarket to ask for GF foods were told to: “go to the health-food shop”. What you got offered in the health food shop was a loaf of bread, which literally resembled a “brick”, a lot more expensive and almost unfit for human consumption back then.
We mostly had many bulk food bins in health food shops and pre-packaged health foods were just coming in. There was no Google to tell you how to make and bake GF bread, only the library containing books, including how to bake white bread.
This brick had to be ordered from the manufacturer for that one customer, and the choice was very limited. You either got the plain brick or the birdseed brick. I was working in a health food shop as a student and remember dropping a loaf onto the ground. It sounded like a rock. I forgot to mention the horrendous cost of purchasing these edible bricks.
Today you can get gluten-free bread, foods, snacks and more almost anywhere you shop. I can still remember visiting a restaurant many years ago with a group of naturopathic student friends. When one student asked the server for any GF food options, they informed her they didn’t specialise in “health foods” and only served regular meals that most customers ordered. Today, virtually all cafes and restaurants have extensive gluten-free menus and even supermarkets sell a good deal of gluten-free items.
Gluten is a protein found mainly in wheat, rye, spelt, triticale and barley. Gluten causes those who have celiac disease, an auto-immune disorder, serious health problems. Celiac disease affects nearly one in every 133 people, but far more people explore gluten-free diets and gluten avoidance today than just celiac disease patients.
An survey conducted in America revealed that only 5% of gluten-free foods were purchased by those with celiac disease, those who wanted to improve their digestive health however, purchased 39% of gluten-free products.
The fundamental property of gluten is its stickiness. Do you doubt the stickiness of gluten? Just get some white flour and mix it with water and voila, you have just created a sticky glue-like substance of gluing paper to wood, metal or many other substances. It is also a great wallpaper glue! Dough is quite “gluey” because of the gluten it contains. It is this property of stickiness that makes gluten so valuable in baking. It helps stick the food together and gives a pleasing texture to the baked items. Wheat gluten is unique in its ability to form sticky dough and thus produce a loaf of bread.
Absolutely, and for some, it can mean dire straits. Recent research has found that gluten is a potentially toxic substance*, especially to the gut, brain and to a person’s nervous system. Many people will have no issue through life with gluten until they develop a condition known as Leaky Gut Syndrome which can occur after antibiotics or other similar event which causes a major stress to the digestive, immune and nervous system.
One problem with gluten is that we do not break it down very well in your intestinal tract. Your digestive system cannot fully digest it, therefore fragments of gluten may easily be absorbed into your body in an unchanged form, which challenges the immune system.
This can then start an immune reaction with your body making antibodies against gluten, which can cause damage to your body’s organs such as your brain and nervous system. Even if your body does not produce antibodies to gluten, unmetabolised gluten can cause damage to your organs. To more fully understand this mechanism, please read our page on Leaky Gut Syndrome. There are also various 5 Tests To Determine Digestive Function.
There are foods that cause inflammation in the body (red meats, alcohol, and sugar for example) and there are foods that can reduce inflammation (like turmeric or omega 3 fatty acids). Gluten is considered an inflammatory food, and inflammation is today considered the root cause of many chronic diseases. Gluten activates the immune system, and anytime the immune system is activated there is most always inflammation produced, so it is imperative that we try to reduce our consumption of pro-inflammatory foods if we want to reduce our risk of chronic ill health like heart disease or cancer.
I’m not saying for one moment that “wheat and bread cause cancer and heart disease”, but what I am saying is that the protein called gluten is a pro-inflammatory food and this inflammatory potential can lead to a continual long-term low grade inflammatory action in the body. And this action (when coupled with nutritional deficiencies, stress, alcohol, pharmaceutical drugs, toxins, etc) can lead to premature and unnecessary disease.
Inflammation is part of the complex biological response of vascular tissues to a harmful stimulus, such as bacteria, viruses, parasites, damaged cells, or different cellular irritants. Inflammation is not “bad’. It is a protective attempt by the body to remove the injurious stimuli and to initiate a powerful healing process. However, chronic and uncontrolled inflammation can cause damage to cells, tissue and organs and result in a range of diseases from autoimmune diseases like Celiac Disease and Rheumatoid Arthritis, to obesity and heart disease.
Chronic inflammation can have many effects on our bodies. One effect is that it triggers our bodies to produce the stress hormone called cortisol. Since cortisol is also one of the major modulators of our immune function, this excess cortisol effectively suppresses our immune response. When cortisol production becomes abnormally high, our hormonal and immune systems are adversely affected. While elevated cortisol suppresses our immune response, it also causes a catabolic/breakdown state to exist in our body and symptoms of adrenal fatigue will eventually appear: fatigue, depression, anxiety, loss of libido, insomnia, multiple allergies, accelerated ageing, and frequent illness. We can trace another result of chronic inflammation to destructive cell-signalling chemicals known as cytokines that contribute to many degenerative diseases. You may like to read the article on immunity called Your Immune System.
* the definition of a toxic substance: any substance that can cause acute or chronic injury to the human body. or which is suspected of being able to cause diseases or injury under some conditions.
Reasons for Buying Gluten-Free*
Digestive health 39%
Nutritional value 33%
To help me lose weight 25%
Other health reasons 21%
Desire for healthy skin 20%
Alleviate joint pain 18%
Mental or emotional health 13%
Alleviate stress 12%
Asthma 6% Celiac 5%
* Hartman Group Survey 1,730 US adults July 2009
But How Gluten Free are They?
When people say they are gluten-free, how strict do they really adhere to eating gluten-free? The results of an American survey conducted in July 2009 may surprise you, and I have no reason to believe that the statistics in Australia and NZ would be any different. This tells me that most people who follow a gluten-free diet do it to improve their health, especially to improve their digestive health, and not because they are celiac.
61% adhered to a gluten-free diet up to 25% of the time.
18% adhered to a gluten-free diet from 26% to 50% of the time.
10% adhered to a gluten-free diet from 51% to 75% of the time.
11% adhered to a gluten-free diet from 75% to 100% of the time.
Dr. Rodney Ford
The gluten syndrome is a term which was originally coined by New Zealand Dr. Rodney Ford, who is known as “the gluten expert”. Dr. Ford is the director of The Children’s Clinic, in Christchurch, New Zealand. He spent his clinical career investigating and helping families who have food intolerances and allergies, especially gluten.
After he conceived the concept, Ford wrote a book about it. He uses the name “gluten syndrome” to describe the serious effects of gluten on the brain, the gut and the skin and asserts that gluten causes us symptoms through its damage to the nerves and brain. Ford has written over a hundred scientific papers, and ten books, including “The Gluten Syndrome”. Dr Ford has been involved in ground-breaking work in the areas of Sudden Infant Death Syndrome (SIDS), breastfeeding, infant caffeine exposure, food allergy and gluten-sensitivity.
Are you sensitive to gluten? Dr. Ford mentions it is important to do these three things:
1. Did you get a gluten antibody test? (IgG-gliadin antibody) That helps with the diagnosis.
2. If you feel better gluten-free, and get sick/unwell when you eat gluten: then you are gluten sensitive. Your own experience makes the diagnosis (that is made by elimination & challenge). It is not only a blood test diagnosis.
3. The blood tests help with diagnosis (checking for gut damage [celiac disease], confirming gluten antibody responses, checking nutritional status). But if you have “normal” tests, this does not rule out gluten-sensitivity, this is known as The Gluten Syndrome.
The Gluten Syndrome
The Gluten Syndrome is a rather broad term which includes all kinds of sensitivities to the protein called gluten, ranging from very mild and hardly noticeable right through to very severe. This syndrome is a cluster of symptoms that are experienced by people who react to eating foods or drinks containing gluten. About one in ten people are affected by gluten syndrome, but unfortunately only a few know that they even have an issue with gluten.
Mainstream medicine is slowly coming around, and for too many years those who presented to their doctors with “funny tummies” were either sent away after having been diagnosed with terms as irritable bowel syndrome, reflux, “stomach migraines” or appendix or gallbladder dysfunction.
Gluten intolerance is a rather broad term which includes all kinds of sensitivities to gluten, ranging from mild to severe. Only a small amount of people will actually test positive to the celiac disease test, and are true celiacs (less than 1% of the population). True celiacs find out early in life as they are at the severe end of the gluten intolerance spectrum. I have found that many people, however, are not at this extreme level of intolerance, and can suffer from years because tests are inconclusive.
Gluten Intolerance or Celiac Disease?
Celiac disease (CD) is an auto-immune condition, meaning it is a condition in which a person’s immune system recognises parts of its digestive system as foreign and attacks it. CD occurs when the proteins in gluten trigger your immune system to overreact, producing antibodies to the protein.
Over time, these immune reactions through the antibodies can cause major wear and tear affecting the tiny microscopic finger-like projections in the small bowel (particularly the duodenum, the first part of the small bowel) in a process called villous atrophy.
These microscopic villi are vital to good health, because it is here that the digestive process really occurs, it is here where the “rubber meets the road” and the absorption of dietary proteins, carbohydrates and fats occur. The villi trap food particles as they pass through the digestion. As CD slowly destroys these micro-villi, you become less and less able to fully process any nutrition from your foods.
Over time, this process causes malabsorption, leading to a myriad of health disorders such as delayed development and failure to thrive in children, and even conditions such as anaemia and osteoporosis in those who are older. If left undiagnosed, CD can have serious consequences for a person’s health.
The Link Between Celiac Disease, Gluten Sensitivity and Irritable Bowel Syndrome
This diagram is very interesting as it shows a connection between celiac disease, gluten sensitivity and irritable bowel syndrome. A paper was published in the American Journal of Gastroenterology* regarding this topic. An article published last year in the same journal reported on the need to perform genetic testing in all patients with IBS to determine if gluten sensitivity is part of the disease equation I have often seen a connection with IBS and gluten sensitivity in many patients over the years in my clinic, and when I suggested that the patient follow a strict no-gluten approach have been amazed at how many improve. The hardest part is getting the patient to understand that it is necessary to at least give this approach a good try (4 – 6 weeks) before deciding that gluten is not really an issue with their IBS. * Source: Is Gluten Sensitivity a “No Man’s Land” or a “Fertile Crescent” for Research? Alex J Ball, Marios Hadjivassiliou and David S Sanders Am J Gastroenterol 2010; 105:222–223.
Gluten intolerance is more difficult to diagnose in a patient, it has a slower onset than CD and may be much more difficult to pick up because of the vague and broad range of symptoms some patients present with. What you will find is that their blood tests will come back negative to CD, as there are no antibodies to gluten produced, making a practitioner believe that gluten is not the issue here.
These people are often poorly diagnosed and wander from one doctor to another naturopath looking for an answer to the poor health question which has plagued them, sometimes for many years. I have always found that the most accurate way to identify if a person has a gluten intolerance is to place them on a strict food elimination diet.
The incidence of gluten intolerance may be as high as 1 in 10, some studies have estimated, and with celiac disease the ratio is as high as 1 in 133 of the population. Emotional stress, infections, surgery, pregnancy and childbirth can exacerbate both gluten intolerance and celiac disease symptoms.
There is no doubt in my mind that all people who experience gluten intolerance will experience a slightly unique set of symptoms, and with no clear-cut pattern of dysfunction, patients are often misdiagnosed or labelled as having irritable bowel syndrome.
The Signs and Symptoms of Gluten Intolerance
It is important to remember that the signs and symptoms in those with gluten intolerance can vary widely, but here is a list (certainly not complete, just my experiences in the clinic)
Behavioural Changes, Mood Swings
Bloating and Flatulence
Chronic Iron Deficiency or Anaemia
Cramps, Tingling or Numbness
Difficulty in Thinking Clearly
Exhaustion, Lethargy or Fatigue
Eczema, Skin Rashes, Dermatitis
Gastric Reflux or Abdominal Cramps
Irregular Menstrual Cycle
Insomnia, Restless sleep
Loss of Feeling in Hands or Feet
Low Immune Function
Malnutrition, Stunted Growth in Children
Mouth Ulcers Recurring
Reduced Sensation of Feeling in either Face or Entire Body
Runny Nose, Nasal Congestion
Weakness – Muscles or Joints
As you can see, there are many and varied symptoms and illnesses triggered by gluten reactions, which is why Gluten Intolerance is so hard to diagnose. Of course gluten is not always the cause of these symptoms and illnesses but most people with Gluten Intolerance have repeatedly sought help and advice from medical professionals, but have found no relief from or solutions to the cause of their ill-health.
How To Diagnose Gluten Intolerance
Since the 1960s the normal method of testing for Celiac Disease is to perform a small biopsy of the intestinal wall to see if there is damage to the villi of the lining. If there was no damage, a negative result for Celiac Disease was given. Recently, researchers discovered that people with Celiac Disease have higher than normal levels of certain autoantibodies in their blood, and to confirm CD you really want the bowel biopsy and the blood test to be positive.
Antibodies are protective proteins produced by your immune system in response to substances that the body perceives to be threatening. And auto-antibodies are highly specific immune proteins that react against the body’s own molecules or tissues. These form the basis for an auto-immune disease like CD.
To diagnose Celiac Disease, physicians will usually test blood to measure levels of:
Immunoglobulin A (IgA)
anti-tissue transglutaminase (tTGA)
IgA anti-endomysium antibodies (AEA)
If the tests and symptoms suggest Celiac Disease, the doctor will perform a small bowel biopsy. During the biopsy, the doctor removes a tiny piece of tissue from the small intestine to check for damage to the villi. They usually perform this test through endoscopy. Then if they find damage, a diagnosis of Celiac Disease is given. There is only one problem here.
These methods of testing have one fundamental problem; they miss those people who have Non-Celiac Gluten Intolerance (NCGI) because there will be no real problems with the small villi in the small intestine, and the patient will be seen as NOT having any real issues with gluten, when in fact they can still be sensitive even with a negative biopsy.
Gluten intolerance sufferers rarely have damage to their villi of their intestinal lining and can often have normal or only slightly raised antibodies levels. Another problem with this method of diagnosis is that up to 50% of people with gluten intolerance have no digestive signs or symptoms.
Some sufferers only have neurological, brain or skin symptoms, so often gluten is not considered as a potential cause of their problems. Gluten sensitivity is therefore likely to be a missed diagnosis without high suspicion by the treating physician. I have seen such patients labelled as “hypochondriac” or as having irritable bowel syndrome (a very common diagnosis for the gluten intolerant patient).
There most effective and least invasive method of finding if there is gluten intolerance is through an elimination diet. This is when gluten is excluded from the diet, and it makes perfectly good sense to me. The patient avoids all forms of gluten entirely, and sometimes (but certainly not every time) the results can be very dramatic, with an improvement being noted after a mere 24 hours. Improvement in symptoms and overall well-being is in most cases however noticed within a couple of days to a week, but certainly not always. It may take several weeks for the accumulated gluten to be cleared from the body.
The Treatment of Gluten Intolerance
The only real and effective treatment for Gluten Intolerance is totally elimination of gluten from the diet. This is not always as easy as it sounds, as gluten hides in many processed products such as soy sauce, gravies, soup mixes, sauces, ice-cream and even bacon and sausages.
Learning to read food labels and being aware of possible gluten additions to food is vital if you really want to go gluten free. Special care is necessary when checking product ingredient lists, since gluten comes in many forms; vegetable proteins and starch, modified food starch (when derived from wheat instead of maize), malt flavouring, and even glucose syrup.
Many ingredients contain wheat or barley derivatives and although many foods contain gluten, it is not always included in ingredients lists. This lack of inclusion is often because they do not use gluten in the actual formulation of the product, but in the preparation (or manufacturing) of listed ingredients.
One example is the dusting of the conveyor belts in the production facilities with gluten products to prevent the foods from sticking during processing. You must be very careful with processed or mixed foods for this reason. You can read a lot more about the importance regarding foods that are labelled “may contain” in our Celiac Disease article.
The main thing I’d like you to remember is this: everybody who is intolerant to gluten will be on a scale from low to very high on the reactivity side. Some folk can tolerate a piece of bread here or there, but for others, even minuscule amounts can cause a major reaction. So even having it in the house for others can cause contamination with, for example, cutting boards, plates, etc. In extreme cases, you may even need to replace your toaster, for example, to clear the house of all traces of gluten, even breadcrumbs.
Also, be aware that you may suffer withdrawal symptoms, as we are often addicted to the foods we are allergic to. These can range from fairly mild to severe – flu like feelings, headaches, etc. This should pass within 3-6 days and you should start feeling better.
Once you understand where gluten is found, it becomes much easier. With time, identifying sources of gluten will become second nature to you. Despite the restriction of a gluten-free diet, you can still eat a healthy, well-balanced diet that has plenty of variety. There are many substitutes that can be used and delicious alternatives and as gluten is not biologically necessary for good health, a gluten-free diet is a healthier one with an expanded variety of foods in it.
How Did I Develop Gluten Intolerance?
Gluten intolerance – both NCGI and Celiac Disease is ‘in the family’, or genetically inherited. Indicators are European or Anglo-Celtic ancestry. If you are gluten intolerant, then up to 10% of the immediate family may also be affected., even if they don’t have any symptoms. They identify some gluten intolerance in children. But for others, it is not until much later in life that gluten intolerance is suspected. Frequently it is triggered by some life event like divorce, job loss or serious illness. Another reason gluten intolerance is more prevalent in today’s society is the increased use of gluten in all forms of food manufacturing. The amount of gluten in the Western diet continues to increase as bread has become a staple food and is even at the base of ‘the food pyramid’. Using gluten as an additive in food processing to get the desired texture and consistency has also raised the amount of hidden gluten we consume in our diet.
(1). Gastroenterology, Volume 128, Issue 4, Supplement l , Pages S57-S67, April 2005 The prevalence of celiac disease in average-risk and at-risk Western European populations: A systematic review
(2). Journal of Paediatric Gastroenterology & Nutrition: October 2006 – Volume 43 – Issue 4 – pp E65-E66 Gluten Reactions: Ten Times the Celiac Problem. Ford, Rodney P.
(4). International Journal of Obesity (2003) 27, S29-S34. doi: 10. 1038/sj.ijo.0802497
(5). Gastroenterology, Volume 115, Issue 6, Pages 1317-1321, December 1998