Celiac.com 10/22/2008 - This article appeared in the Autumn 2007 edition of Celiac.com's Scott-Free Newsletter.
The Gluten Syndrome refers to the cluster of symptoms that you experience if you react to gluten. Gluten can affect your gut, your skin, and your brain. It applies to any reaction that is caused by gluten. It includes celiac disease, along with the myriad symptoms that can be experienced throughout your gastro-intestinal tract in response to gluten. It also includes many other symptoms that do not stem from your gut. These include brain and behavior disorders, irritability and tiredness, skin problems, muscular aches and pains and joint problems.
The effects of gluten are wide ranging and are now brought together under the term Gluten Syndrome. In most instances, a simple blood test (the IgG-gliadin antibody test) can identify those people who are affected.
10% Affected by Gluten
The Gluten Syndrome affects about one in ten people. However, most people who are affected are unaware that their life is being hindered by gluten. The gluten symptoms are most likely to be caused by damage to the nerves and brain. The earlier the problem is identified, the better the response to a gluten-free diet will be.
Tummy Pains and not Growing
Jonti is 3 years old. His gluten story is typical. His mother brought him to see me because she was concerned about his poor growth, and his distressing abdominal pains. His blood tests showed a high gluten test (His IgG gliadin was 94 units. This test result is usually less than 15 at this age). Other tests, including the gene test for celiacs, showed that he did not have celiac disease.
I suggested that he go on a gluten-free diet. Within days he began to eat better, and his tummy pains went. He is now growing again on a gluten-free diet. His mum wrote:
“I really haven’t found the gluten-free diet that difficult. I found people to be incredibly helpful actually, both in the supermarket and in restaurants. In the supermarket there is a lot of normal type food that is gluten-free and it is all clearly labeled that it is gluten-free. Even if you go to the delicatessen department they will tell you which luncheon sausage is gluten-free. There are gluten-free sausages all labeled and it’s normal food that tastes great.
For the baking mixes and bread mixes, you don’t even have to go to the specialist health food shops. I go to no other shops other than the supermarket to get food for him and I haven’t really found it that difficult.”
Amazed how Jonti has Adapted
I have been amazed, actually, by how easily Jonti has adapted to the gluten-free diet. I tell him it is special food for him and that it won’t hurt his tummy. We have got nice biscuits from a bakery and he is allowed to choose which one he wants for morning tea. He still has normal foods like chips and sweets. He is not missing out and the other biscuits he hasn’t even really asked for. The only thing is the bread! I have yet to perfect the making of the bread. Toast is about the only thing he asked for. You can get specialist cornflakes and cereals, porridge he loves, again, at the supermarket. It has been surprisingly easy actually
I’m so pleased that he is now well again. Gluten-free has made such a huge difference.”
The Main Points:
The Gluten Tests
Gluten is a protein that is found in wheat grains. This protein has a number of components, one of which is called gliadin. People who get sick from gluten are usually reacting to the gliadin component.
You are a Long Tube
To understand what the blood tests mean, first you need to know a little more about your immune system. It is the job of your immune system to protect you from the outside world. It protects you from the invasion of microbes (viruses and bacteria), and it also protects you from the toxins and poisons in the food that passes through your gut. Your gut is a long tube inside you that travels from your mouth to your anus. This is your gastrointestinal tract, also called your bowel. Even though it is inside your body, the contents of this tube are still on the ‘outside’ from your body’s point of view. Lots of your immune cells coat the skin (called the mucosa) of this tube and work hard to protect you from anything that might prove to be harmful.
Gluten (Gliadin) can be Toxic
Gliadin, the toxic component of the gluten protein, is one such harmful substance. Your immune system defends your body strongly against gliadin using weapons called antibodies and the gliadin is repelled. The outcome of your immune system’s fight against gliadin is the production of antibodies that are specifically targeted towards gliadin: these are called anti-gliadin antibodies.
Anti-gliadin Antibodies (commonly called the IgG-gliadin antibody) are weapons that have been made specifically to fight against gluten in the diet. Remember, gliadin is a component of the gluten protein. This antibody is very sensitive. It is made very specifically by your immune system to fight against gliadin. However, a high level of this antibody does not necessarily mean that you have any gut damage, so it is not very accurate in assisting the identification of patients with celiac gut damage. On the other hand, tests for this antibody are nearly always strongly positive in people with celiac disease who are not on a gluten-free diet. Once people are placed on a strict diet, these antibodies will fall to normal levels within a period ranging from few months to a year or two.
Gluten Tests Not Getting Done
There is a problem. Unfortunately, this gluten blood test (the IgG-gliadin antibody test) is no longer available from most community laboratories. This year many laboratories have decided to discontinue this test. Their opinion is that it is worthless (for detecting celiac disease).
I disagree with their decision. My latest data shows that huge numbers of people remain undiagnosed with serious symptoms because of the misinterpretation of this gluten test result. At the moment it is difficult to get the medical labs to do your gluten test. They are unwilling to consider that gluten causes a wide spectrum of illness that has been written up in the international medical literature. They have turned a blind eye to the problem. If you can’t test for gluten reactions, then you will not be able to make the diagnosis!
A Diagnosis at Last!
Mandy wrote this letter to me: “Hi Dr Rodney Ford, for many, many, years I have been to doctors complaining of a bloated tummy, extreme cramping pains, and diarrhea (to the point I had no time to get to the toilet). I have recently had some blood test for celiacs done by my GP. My results showed: the tTG was negative; and the IgG-Gliadin result strongly positive. He could not explain it to me, but he said that I did not have celiac disease.”
“I have no idea what these tests mean. Although I got no answers, I had to try something. I was at the end of my nerves! My bad health has always been upsetting my social and working life. I often have to rush home to the toilet.”
Amazing on a Gluten-free Diet
“So I decided to try a gluten-free diet! I have now been gluten-free for a month. It is amazing! Already I feel like a different person! No more bloating, just the odd stomach cramp. Also, all my headaches have gone. But I still feel really tired and not sure how to overcome this. Can you help me please by explaining my blood test results—and should I have anymore tests? What else I can do to help myself? I hope you can help me Dr Ford. Gluten, up to now, seems to have made my life a misery. Even though I feel so much better already, I want to get even better. Kind regards, Mandy.”
The Gluten Syndrome
I replied: “Thanks. I am glad that you are feeling a lot better off gluten. From your story and your blood test results, you have gluten-sensitivity. You do not have celiac disease (your low tTG level shows that you do not have any gut damage from gluten). But you are still getting sick from gluten (your high IgG-gliadin level shows that your body reacts to gluten). The good news is that it takes many months to get the full benefits of a gluten-free diet. I expect that you will continue to feel better over the next few months. You should be taking some additional iron and a multivitamin supplements because you will be relatively iron deficient—that will be making you tired.”
The Time has Come
The history of science and medicine is littered with vehement arguments against any new idea that runs contrary to traditional beliefs. Ironically however, it takes new ideas to make progress. It was George Bernard Shaw who said that “The reasonable man adapts himself to the world: the unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.”
Many people are joining the ranks of the gluten-free. There are thousands of people like you who have read this information and who are concerned about how gluten might be affecting them; there a millions of people who are sick and tired of being ignored and who are looking for more energy and vitality; there are the practitioners in the field of complementary medicine who are aware of the concept of gluten-sensitivity; there are the laboratories who have developed the gliadin antibody test and know that their tests are specific for gluten reactions; there are the gluten-free food manufacturers who have recognised that there is an ever-increasing demand for gluten-free products; there are the networks of people in the health food industry who appreciate the value of high-quality food and a gluten-free diet; and there are the supermarkets and grocery stores that are sensitive to the demands of their customers.
Who Might Oppose this Trend?
As previously discussed, medical practitioners are wary of overturning tradition. They do not want to be seen as alternative and want to avoid acting outside of the recommended clinical guidelines. In addition, there are the grain-growers and the bread-makers who make their living from gluten, and the pharmaceutical companies who make their living from the sick and unwell.
Bad Behavior on Gluten
Kimberley is 12 years old. She has The Gluten Syndrome and her behavior gets disturbed with gluten. She does not have celiac disease but she does have a high gluten test. (Her IgG-gliadin level was 55 units—It should be less than 20.)
Her mum said: “It is interesting about how behavior troubles are linked to gluten! Our youngest, Kimberley, is now 12 years old. She had her IgG-gliadin measured and it was high. She was clearly a lot better when she was off gluten. However then she decided to ‘try’ gluten again. Rodney suggested a small amount but she went for it—big time!”
By the end of a week, two other parents had asked what was wrong with her. Another parent asked “what on earth’s the matter with her” she seemed so different and stroppy. She admitted she felt “absolutely awful” but really didn’t want to admit it as she knew it meant she’d have to completely give up gluten.”
Anyway, after a lot of talking, she agreed it wasn’t in her best interests to eat gluten. From that day she has been gluten-free ever since, with the odd very long envious glance at French bread! With our support she’s very compliant with being GF now, which I think is remarkable for her age. Clearly she now understands and gets the benefits of GF. But I was really shocked at how affected her behavior was after a reintroduction of gluten.”
Could You Have The Gluten Syndrome?
One in every ten people is affected by gluten. If you have chronic symptom (feeling sick, tired and grumpy) then you should get checked for The Gluten Syndrome.