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    The Gluten Syndrome—Gut, Skin and Brain

    Dr. Rodney Ford M.D.

    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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    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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    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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    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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  • 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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