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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 - This article appeared in the Autumn 2007 edition of Celiac.com's Scott-Free Newsletter.

    The Gluten Syndrome refers to the cluster ofsymptoms that you experience if you react to gluten.  Gluten can affectyour gut, your skin, and your brain.  It applies to any reaction thatis caused by gluten.  It includes celiac disease, along with the myriadsymptoms that can be experienced throughout your gastro-intestinaltract in response to gluten.  It also includes many other symptoms thatdo not stem from your gut.  These include brain and behavior disorders,irritability and tiredness, skin problems, muscular aches and pains andjoint problems.

    The effects of gluten are wide ranging and arenow brought together under the term Gluten Syndrome.  In mostinstances, a simple blood test (the IgG-gliadin antibody test) canidentify those people who are affected.  

    10% Affected by Gluten
    TheGluten Syndrome affects about one in ten people.  However, most peoplewho are affected are unaware that their life is being hindered bygluten.  The gluten symptoms are most likely to be caused by damage tothe nerves and brain.  The earlier the problem is identified, thebetter the response to a gluten-free diet will be.

    Tummy Pains and not Growing
    Jontiis 3 years old.  His gluten story is typical.  His mother brought himto see me because she was concerned about his poor growth, and hisdistressing 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 hego on a gluten-free diet.  Within days he began to eat better, and histummy pains went.  He is now growing again on a gluten-free diet.  Hismum wrote:

    “I really haven’t found the gluten-free diet thatdifficult.  I found people to be incredibly helpful actually, both inthe supermarket and in restaurants.  In the supermarket there is a lotof normal type food that is gluten-free and it is all clearly labeledthat it is gluten-free.  Even if you go to the delicatessen departmentthey will tell you which luncheon sausage is gluten-free.  There aregluten-free sausages all labeled and it’s normal food that tastes great.

    Forthe baking mixes and bread mixes, you don’t even have to go to thespecialist health food shops.  I go to no other shops other than thesupermarket to get food for him and I haven’t really found it thatdifficult.”

    Amazed how Jonti has Adapted
    Ihave been amazed, actually, by how easily Jonti has adapted to thegluten-free diet.  I tell him it is special food for him and that itwon’t hurt his tummy.  We have got nice biscuits from a bakery and heis allowed to choose which one he wants for morning tea.  He still hasnormal foods like chips and sweets.  He is not missing out and theother biscuits he hasn’t even really asked for.  The only thing is thebread!  I have yet to perfect the making of the bread.  Toast is aboutthe only thing he asked for.  You can get specialist cornflakes andcereals, porridge he loves, again, at the supermarket.  It has beensurprisingly 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 youexperience if you react to gluten.  It can affect your gut, skin andnerves.
    • Medical practitioners accept that gluten causes celiac disease(gut damage) but often resist the notion that gluten can cause a widerspectrum of illness.
    • Celiac disease, gluten intolerance and gluten sensitivity are all part of The Gluten Syndrome.
    • Rapidly accumulating medical evidence shows that gluten is nowcreating a massive health problem throughout the Western world. However, woefully few people are aware of the catalogue of harm thatgluten is causing.  About one in ten people—that is millions ofpeople—are affected by The Gluten Syndrome.
    • Gluten could be responsible for one-third of all cases of chronicillness and fatigue.  People suffering from these conditions arecurrently just tolerating their symptoms, unaware that gluten is theculprit.  This is because the link to gluten is not yet recognized bythe medical community.
    • Gluten-containing products are being added to our food chain inincreasing amounts.  Our wheat is being engineered to have even highergluten content.  This gluten overload is occurring without ourcommunities being unaware of the harm that this is causing.
    • Gluten can cause malfunctions of the brain and neural networks ofsusceptible people.  The incidence of mental, neurological and braindisorders is on the rise.  However, the diagnosis of gluten-sensitivityis seldom made.
    • The community is already embracing the notion ofgluten-sensitivity.  More and more people are opting for a gluten-freelifestyle.  These people are looking for a term to identify theirillness.  Their search is over.  They have been affected by The GlutenSyndrome.
    • A strong gluten-free movement is developing globally in responseto the knowledge that going gluten-free can be so beneficial to so manypeople.  What has been missing up until now is a name that captures thegluten problem.  The missing name is The Gluten Syndrome.

    Get Your Blood Tests

    The Gluten Tests
    Glutenis a protein that is found in wheat grains.  This protein has a numberof components, one of which is called gliadin.  People who get sickfrom gluten are usually reacting to the gliadin component.  

    You are a Long Tube
    Tounderstand what the blood tests mean, first you need to know a littlemore about your immune system.  It is the job of your immune system toprotect you from the outside world.  It protects you from the invasionof microbes (viruses and bacteria), and it also protects you from thetoxins and poisons in the food that passes through your gut.  Your gutis a long tube inside you that travels from your mouth to your anus. This is your gastrointestinal tract, also called your bowel.  Eventhough it is inside your body, the contents of this tube are still onthe ‘outside’ from your body’s point of view.  Lots of your immunecells coat the skin (called the mucosa) of this tube and work hard toprotect 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 harmfulsubstance.  Your immune system defends your body strongly againstgliadin using weapons called antibodies and the gliadin is repelled. The outcome of your immune system’s fight against gliadin is theproduction of antibodies that are specifically targeted towardsgliadin: these are called anti-gliadin antibodies.

    Gliadin Antibodies
    Anti-gliadinAntibodies (commonly called the IgG-gliadin antibody) are weapons thathave been made specifically to fight against gluten in the diet. Remember, gliadin is a component of the gluten protein.  This antibodyis very sensitive.  It is made very specifically by your immune systemto fight against gliadin.  However, a high level of this antibody doesnot necessarily mean that you have any gut damage, so it is not veryaccurate in assisting the identification of patients with celiac gutdamage.  On the other hand, tests for this antibody are nearly alwaysstrongly positive in people with celiac disease who are not on agluten-free diet.  Once people are placed on a strict diet, theseantibodies will fall to normal levels within a period ranging from fewmonths to a year or two.

    Gluten Tests Not Getting Done
    Thereis a problem.  Unfortunately, this gluten blood test (the IgG-gliadinantibody test) is no longer available from most communitylaboratories.  This year many laboratories have decided to discontinuethis test.  Their opinion is that it is worthless (for detecting celiacdisease).
    I disagree with their decision.  My latest data shows thathuge numbers of people remain undiagnosed with serious symptoms becauseof the misinterpretation of this gluten test result.  At the moment itis difficult to get the medical labs to do your gluten test.  They areunwilling to consider that gluten causes a wide spectrum of illnessthat has been written up in the international medical literature.  Theyhave turned a blind eye to the problem.  If you can’t test for glutenreactions, then you will not be able to make the diagnosis!

    A Diagnosis at Last!
    Mandywrote this letter to me: “Hi Dr Rodney Ford, for many, many, years Ihave been to doctors complaining of a bloated tummy, extreme crampingpains, 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.  Myresults showed: the tTG was negative; and the IgG-Gliadin resultstrongly positive.  He could not explain it to me, but he said that Idid not have celiac disease.”

    “I have no idea what these testsmean.  Although I got no answers, I had to try something.  I was at theend of my nerves!  My bad health has always been upsetting my socialand working life.  I often have to rush home to the toilet.”

    Amazing on a Gluten-free Diet
    “SoI decided to try a gluten-free diet!  I have now been gluten-free for amonth.  It is amazing! Already I feel like a different person!  No morebloating, just the odd stomach cramp.  Also, all my headaches havegone.  But I still feel really tired and not sure how to overcomethis.  Can you help me please by explaining my blood test results—andshould I have anymore tests?  What else I can do to help myself?   Ihope you can help me Dr Ford.  Gluten, up to now, seems to have made mylife a misery.  Even though I feel so much better already, I want toget even better.  Kind regards, Mandy.”

    The Gluten Syndrome
    Ireplied: “Thanks.  I am glad that you are feeling a lot better offgluten.  From your story and your blood test results, you havegluten-sensitivity.  You do not have celiac disease (your low tTG levelshows that you do not have any gut damage from gluten).  But you arestill getting sick from gluten (your high IgG-gliadin level shows thatyour body reacts to gluten).  The good news is that it takes manymonths to get the full benefits of a gluten-free diet.  I expect thatyou will continue to feel better over the next few months.  You shouldbe taking some additional iron and a multivitamin supplements becauseyou will be relatively iron deficient—that will be making you tired.”

    The Time has Come
    Thehistory of science and medicine is littered with vehement argumentsagainst any new idea that runs contrary to traditional beliefs. Ironically however, it takes new ideas to make progress.  It was GeorgeBernard Shaw who said that “The reasonable man adapts himself to theworld: the unreasonable one persists in trying to adapt the world tohimself.  Therefore, all progress depends on the unreasonable man.”

    Thousands Convinced
    Manypeople are joining the ranks of the gluten-free.  There are thousandsof people like you who have read this information and who are concernedabout how gluten might be affecting them; there a millions of peoplewho are sick and tired of being ignored and who are looking for moreenergy and vitality; there are the practitioners in the field ofcomplementary medicine who are aware of the concept ofgluten-sensitivity; there are the laboratories who have developed thegliadin antibody test and know that their tests are specific for glutenreactions; there are the gluten-free food manufacturers who haverecognised that there is an ever-increasing demand for gluten-freeproducts; there are the networks of people in the health food industrywho appreciate the value of high-quality food and a gluten-free diet;and there are the supermarkets and grocery stores that are sensitive tothe demands of their customers.

    Who Might Oppose this Trend?
    Aspreviously discussed, medical practitioners are wary of overturningtradition.  They do not want to be seen as alternative and want toavoid acting outside of the recommended clinical guidelines.  Inaddition, there are the grain-growers and the bread-makers who maketheir living from gluten, and the pharmaceutical companies who maketheir living from the sick and unwell.  

    Bad Behavior on Gluten
    Kimberleyis 12 years old.  She has The Gluten Syndrome and her behavior getsdisturbed with gluten.  She does not have celiac disease but she doeshave a high gluten test.  (Her IgG-gliadin level was 55 units—It shouldbe less than 20.)

    Her mum said: “It is interesting about howbehavior troubles are linked to gluten!  Our youngest, Kimberley, isnow 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 shedecided to ‘try’ gluten again.  Rodney suggested a small amount but shewent for it—big time!”

    By the end of a week, two other parentshad asked what was wrong with her.  Another parent asked “what onearth’s the matter with her” she seemed so different and stroppy.  Sheadmitted she felt “absolutely awful” but really didn’t want to admit itas 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 toeat gluten.  From that day she has been gluten-free ever since, withthe odd very long envious glance at French bread!  With our supportshe’s very compliant with being gluten-free now, which I think is remarkable forher age.  Clearly she now understands and gets the benefits of gluten-free.  ButI was really shocked at how affected her behavior was after areintroduction of gluten.”

    Could You Have The Gluten Syndrome?
    Onein every ten people is affected by gluten.  If you have chronic symptom(feeling sick, tired and grumpy) then you should get checked for TheGluten Syndrome. 


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    Recommended Comments



    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.

    Hello, I have had epilepsy for more then 20 years and I read where a gluten free diet will help me get my seizures under control because I have tried everything vns, brain surgery, aed's and nothing has helped me so I am praying that the gluten free diet will help me. And I just started taking fish oil with omeg 3 fatty acids,vit. B12,vit.D3. And I will start taking iron pills or calcium if I need to. I hope that helps me to.

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    Guest Shirley Boberg

    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.

    I was not obese but it has been tough to keep the weight off. I have had joint pain (which docs attributed to all the lifting I do), breathing issues, allergies, and skin troubles as well as cankers. I have been on the gluten-free diet after being tested with genetic testing for nearly a year and most of my symptoms have gone away. It is still hard to lose weight, but I am so much healthier. Oh and my hair was breaking off and looking horrid. Now it is almost back to normal.

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    I am confused. My endocronologist had me have an endoscopy due to an almost absent level of iga in my blood. Then she told me me that meant it was probably a false negative in spite of negative results from the endoscopy. What should I believe? Due to my fatigue which caused extreme deconditioning, I have been to fibro specialist (had it for 40 years), heart and neurologist specializing in autonomic disorders with no relief. Now I remember I was very fit when I did not eat any grains, but it could be that I was able to exercise and get fit because I was not eating grains? I am confused.

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    I had an endoscopy to determine the cause of my stomach and heartburn issues. It was discovered that I have an hiatal hernia but due to other symptoms I was told to follow a gluten-free diet. My liver enzymes are elevated also. Does gluten cause this? If so, will following a gluten-free diet help?

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    I was always one person that thought this whole gluten thing was in peoples heads until I had surgery on my feet 2 years ago and broke out in this terrible itchy burning blistery rash over my whole body...I had been to my doctor ER doctors allergists dermatologists and tested negative to all sorts of things so I was through with doctors I figured it was psoriasis and started to tan which helped keep it down to some point. In the mean time I had been having terrible pains in my stomach and diarrhea all the time after I ate so my surgeon decided to take my gallbladder out...after I had that done i thought I couldn't eat certain foods because they made me sick which I was told was normal so I just stayed away from those types of food.. Well 2 years have gone by and now just recently after talking to a friend who put herself and child on a gluten free diet because her little boy had excema so bad she told me after going on a gluten free diet he hadn't had a breakout. I was amazed so I was chatting a little more about it and told her all my issues I had been having especially the stupid constant rash/itching. She told me to look up celiacs I was astonished all the symptoms fit me to a T and when I seen the pictures of the rash it was exactly like mine. So immediately I started my gluten free diet including switching shampoos because mine had gluten in it..After less than a week I haven't had that terrible itching except a lil still on my scalp probably from open wounds before and I can eat without feeling sick and drink without waking up so achy I feel like I got ran over ,my bones hurt so bad. So I want to apologize to all those gluten free people this is a serious terrible substance and more people should consider going on a gluten free diet. I know this last week has been absolutely wonderful for me!!

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    I'm 57,diagnosed coeliac 3 years ago. At first I didn't really understand the importance of or take the celiac disease diet too seriously. But with worsening severe chronic neuropathy, painful joints and muscles and a myriad other problem have basically kept me homebound and bedridden. I'm now on very strict diet (3 months) but have no improvement. I had blood tests yesterday and am keen to see if my TsH level is high (thyroid). I'm beyond desperate for pain relief and life function normalization.

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  • About Me

    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 (www.DrRodneyFord.com). 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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