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    Dr. Rodney Ford M.D.
    Dr. Rodney Ford M.D.

    The Gluten Syndrome—Gut, Skin and Brain

    Reviewed and edited by a celiac disease expert.

    Celiac.com 10/22/2008 - 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.  

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    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 than15 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 Syndrome refers to the cluster of symptoms that you experience if you react to gluten.  It can affect your gut, skin and nerves.
    • Medical practitioners accept that gluten causes celiac disease(gut damage) but often resist the notion that gluten can cause a wider spectrum of illness.
    • Celiac disease, gluten intolerance and gluten sensitivity are all part of The Gluten Syndrome.
    • Rapidly accumulating medical evidence shows that gluten is now creating a massive health problem throughout the Western world. However, woefully few people are aware of the catalogue of harm that gluten is causing.  About one in ten people—that is millions of people—are affected by The Gluten Syndrome.
    • Gluten could be responsible for one-third of all cases of chronic illness and fatigue.  People suffering from these conditions are currently just tolerating their symptoms, unaware that gluten is the culprit.  This is because the link to gluten is not yet recognized by the medical community.
    • Gluten-containing products are being added to our food chain in increasing amounts.  Our wheat is being engineered to have even higher gluten content.  This gluten overload is occurring without our communities being unaware of the harm that this is causing.
    • Gluten can cause malfunctions of the brain and neural networks of susceptible people.  The incidence of mental, neurological and brain disorders is on the rise.  However, the diagnosis of gluten-sensitivity is seldom made.
    • The community is already embracing the notion of gluten-sensitivity.  More and more people are opting for a gluten-free lifestyle.  These people are looking for a term to identify their illness.  Their search is over.  They have been affected by The Gluten Syndrome.
    • A strong gluten-free movement is developing globally in response to the knowledge that going gluten-free can be so beneficial to so many people.  What has been missing up until now is a name that captures the gluten problem.  The missing name is The Gluten Syndrome.


    Get Your Blood Tests

    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.

    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 Idid 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.”

    Thousands Convinced
    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 gluten-free now, which I think is remarkable for her age.  Clearly she now understands and gets the benefits of gluten-free.  But I was really shocked at how affected her behavior was after are introduction 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. 



    User Feedback

    Recommended Comments



    Guest Ann Nicosia

    Posted

    Excellent article. I have 10 members with celiac disease and 7 or 8 with gluten sensitivity. Some Doctors don't recognize this and I would like a printed version of this article. Great Job!

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    Guest A. Sommer

    Posted

    Very well written article about problems that people can experience from Celiac Disease. T.You!

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    Guest Paulette Feher

    Posted

    This is an excellent, direct, and very informative article. It makes it easier for a Celiac or Gluten Intolerant individual to help family members and friends understand how important it is for them to completely abstain from gluten in their diet. It also heightens awareness as to how common this Gluten Intolerance is becoming in the western world.

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    Guest L. Yankow, RN

    Posted

    Enjoyed the article. Elaborating on adult symptoms would also be helpful as I also tested negative for celiac disease - I have many health issues including muscle and joint pains that improve when I fast and when I avoid gluten in my diet. I am 59 and when I was younger did not have chronic health issues, I guess my immune system was able to handle the toxins, but now it has caught up with me and I have had problems for the last 10 years. As an older adult celiac manifests itself in different ways than children who are affected at an early stage of life. Many adults refuse to believe they have a problem with gluten and do not see that they might. Opening their eyes to adult symptoms may shed new light on correct diet. Thanks for the great article.

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    Guest Pauline Kelly

    Posted

    I have celiac disease. I have constipation instead of diarrhea. I have been gluten free but still have the constipation. Can you make a suggestion in regard to possible help with it?

    Thanks, Pauline

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    Guest Kirt K

    I've been having GI issues along with additional aches and pains, mood swings for some time (more frequently and severe for the past 6-8 months). Had my first migraine ever maybe 5 months ago (never want another one). A co-worker and real close friend mentioned gluten. I began delving into it and noticed a lot of the symptoms were similar to what I've been experiencing. Not being keen on doctors and hospitals in general, I thought what is the harm in going gluten free for a while and monitor what happens. A lot of the symptoms diminished and was actually somewhat better.

     

    The GI symptoms quickly diminished and decided it was time for a test. I tried a grilled burger (not a fast food meal either) for lunch and for the remainder of the afternoon and throughout the evening I had searing pains across my abdomen.

     

    Upon returning home, I just laid on the sofa and went to bed early. The next day there was minor discomfort across the abdomen, but not serious. For lunch I went home and ate a gluten free lasagna frozen entrée, munching on gluten free pretzels and plan on eating a gluten free pizza for supper when I return home. I plan on purchasing more gluten-free foods after work and going back on it. Also planning on being tested for gluten intolerance (knowing full well that for the test to be accurate, I will have to indulge in meals containing gluten).

     

    Whether coincidence or not, going gluten-free (even for a short time) has made me feel better. I'm sure a longer duration would be much more conclusive.

     

    Fabulous article as are many that I've read along with many recipes I've accumulated and plan to start implementing.

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    Guest elisia

    Helpful and insightful article.

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    Guest Dar

    I have suffered from all of the symptoms of celiac disease and never knew what it was. I had an upper and lower GI and was found fine. After discovering celiac and its symptoms I went gluten free. I feel so much better. Thank you for these articles. The only thing I don't understand is why didn't my Gastroenterologist do a simple blood test to see if I had Celiac. I still had the same problems after getting the GI come back good. You would think they would check if you are allergic to gluten.

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    Guest Joan McKeown

    Posted

    My 81 year old husband was diagnosed with celiac after being miserably sick after Easter. We thought it was food poisoning, but someone in the family ate everything he did and weren't sick.After emergency tests we were told no gluten. What a difference. His 20 year long itchy back is cured, his eyes are better, his appetite is back [he was down to 118lbs.] Life is much better even though I'm learning to cook a different way.

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    Guest Linda Ward

    Posted

    I suffered with so called "fibromyalgia" for 12 years only to find out that I have celiac disease. I am on a gluten free diet now and feel 99% better. Years of not knowing has left my muscles weak but I have now started using weight machines and increasing my muscle strength. By the way, my symptoms were not with my digestive tract. I had muscle pain and weakness, joint pain, could not sleep, brain fog, extreme fatigue, etc. I requested that my previous doctors test for celiac before making a fibromyalgia diagnosis. I could go on and on. I thank God every day that I finally found the answer to my problem. I am glad that you are linking other problems besides just intestinal problems to celiac.

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    Guest Jackie MacIlroy

    Posted

    I have suffered for years oddities of health issues, some stories although not funny at the time, I can laugh at it now. However, over the last 10 years I have been treating my own symptoms of irritable bowl syndrom, fatigue, fibroblast, irritability, joint pain and much more. Although I had managed to treat them symptoms to a degree as the years passed my symptoms became more disruptive. By the grace of a great gastric intestinal specialist it was discovered that I tested blood positive for celiac and I am going for the biopsy this week. After reading these articles, which I might add that I have avoided reading until now, I am looking forward to a gluten free diet to start feeling better.

     

    When first told I had celiac or gluten intolerance I didn't believe the doctors because I am obese and I have never met an obese celiac person, they have all been skinny and struggling with their health. Even though I struggle with health issue, skinny has never been my problem. But something I have not read anywhere here is my gastric intestinal specialist said to me: You just might find that the weight will resolve itself with a gluten free diet. That would be nice, but what would be nicer is feeling healthy. So I am looking forward to feeling better and getting better, as for the weight, well I have 70lbs off so far I am hoping that gluten free will only add to that number.

     

    Reading these articles have been eye opening. Thank you.

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    Guest Aria

    I have been gluten-free for 2 years now and am feeling much better now. Every once in a while I have an urge to eat something with gluten but stay away. I have epilepsy and calcium deficiency and think they are due to my gluten syndrome. Since I have gone gluten-free I no longer have pains in my skull and I don't have the achy joints. It is worth it.

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  • About Me

    Dr. Rodney Ford M.D.

    Dr. Rodney Ford is a Pediatric Gastroenterologist. He was Professor of Pediatrics at the Christchurch School of Medicine. He runs the Children's Gastroenterology and Allergy Clinic in New Zealand. He has written a series of 7 books on gluten. His main theory is that symptoms from gluten reactions arise from brain and nerve damage. His latest book is "The Gluten Syndrome" which encapsulates current ideas and concepts of gluten and the harm that it does.


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