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    Celiac Disease Head to Toe


    Wendy Cohan, RN

    Celiac.com 10/19/2009 - Gluten intolerance in the form of celiac disease (a hereditary autoimmune disorder) or non-celiac gluten sensitivity, may affect virtually any part of the body. In it’s involvement in multiple health disorders, gluten intolerance is a major driver of health care delivery and associated costs.  While this may seem to be an outrageous claim to make, a discussion of the many ways in which gluten intolerance can negatively affect the body can illustrate this point. So, let’s work our way down from the top…

    Normal, healthy hair is usually glossy and thick.  An autoimmune disorder known as alopecia areata results in abnormal loss of hair, either in patches, or total body hair-loss, and is one of many autoimmune disorders associated with celiac disease. Malabsorption severe enough to cause malnutrition can also result in thin, sparse, fragile hair. One of the outward signs of hypothyroidism is thinning hair and a loss of the outer third of the eyebrow; hypothyroidism is strongly associated with celiac disease.

    Now let’s look at the brain.  There are, unfortunately, a large number of neurological disorders associated with gluten intolerance and celiac disease, including narcolepsy, depression, ADD/ADHD, Autism Spectrum Disorders, and schizophrenia. There are also movement and balance disorders associated with gluten intolerance, including ataxia - the inability to coordinate movements and balance (gluten ataxia, celiac ataxia, some cases of sporadic idiopathic ataxia). In some cases, when symptoms are severe, this disorder mimics other disorders such as Parkinson’s, Normal Pressure Hydrocephalus, and even Alzheimer’s disease.

    Headaches are a very common symptom of wheat allergy, as well as gluten intolerance.  Migraines are common in those with celiac disease and gluten intolerance, as are sinus headaches.  These symptoms often decline dramatically after excluding gluten grains from the diet. Sinus problems are common in those with celiac disease, gluten intolerance, and sensitivity to dairy products as well, and are often reversible by making dietary changes. Some people with celiac disease seem to have an altered, highly acute sense of smell – for unknown reasons.

    Night blindness associated with vitamin A deficiency is reversible when malabsorption is resolved and with the addition of a vitamin A supplement. Xeropthalmia, or chronic, often severe, dry eyes, is also related to severe vitamin A deficiency.  It is rare in developed countries, but can be found in some people with malnutrition due to celiac disease.

    Apthous stomatitis is the name for the mouth ulcers associated with food allergies and intolerances, and is strongly associated with celiac disease and gluten intolerance. Even people who do not have gluten sensitivity get these once in a while but in those with gluten intolerance they are more frequent and especially long-lasting.  Dental enamel defects are strongly associated with celiac disease.  While they are usually identified in childhood, they can continue to cause problems throughout life, because they often lead to more frequent dental cavities.  Halitosis, or bad breath, is a reflection of our internal environment and gastrointestinal health, and is often present in those with untreated celiac disease, gluten sensitivity, or gut dysbiosis – an upset in the balance of our internal microorganisms caused by poor diet and other factors. And, one of the autoimmune disorders strongly associated with celiac disease, and one of the most prevalent is Sjogren’s syndrome, which impairs the normal production of body fluids like tears, saliva, and vaginal secretions

    Following the path our food takes to the stomach, we can look for effects in the esophagus too.  Eosinophilic esophagitis is a rarely encountered inflammation in the tissue of the esophagus which makes swallowing painful and difficult and can result in bleeding ulcerations.  When doctors do see it, they sometimes test for celiac disease, since there is a strong correlation.  Fortunately, in cases where this condition is caused by gluten intolerance, this painful chronic disorder clears up on a gluten free diet, too.

    Now we’re getting to the area most people associate with gluten intolerance – the gastro-intestinal system. In the past, celiac disease was usually described as causing gas, diarrhea, bloating, discomfort, cramping, and malabsorption.  But as you’ve already seen above, there is a whole lot more to this disorder, and we’re only halfway to the toes.

    In addition to the above symptoms, the body’s reaction to gluten can cause inflammation anywhere, but a common location is in the illeo-cecal junction and the cecum. This can sometimes be confused with appendicitis, or ovarian pain or an ovarian cyst in women experiencing right-sided lower abdominal discomfort.  Irritable bowel syndrome is suspected to affect at least 10-15% of adults (estimates vary). It is differentiated from IBD, or inflammatory bowel disorders (which include Crohn’s disease and ulcerative colitis). But, taken together, there are an awful lot of people out there with uncomfortable gut issues.  One fact to consider is that many of those with celiac disease were previously, and wrongly, misdiagnosed with IBS before discovering they actually had celiac disease.

    Let’s take a look at the urological system.  Even though gluten from the food we eat isn’t directly processed here, can it still be affected?  The answer is yes. Kidney problems in association with celiac disease are well documented, including oxalate kidney stones. Bladder problems are increasingly shown to be responsive to a gluten-free diet. This is kind of my specialty and I would estimate that about a quarter of those with interstitial cystitis, and many people with recurrent urinary tract infections, have a sensitivity to gluten. Even prostate inflammation in some men can be triggered by eating gluten grains.

    Sitting just atop the kidneys are our adrenal glands.  They have a difficult job, helping to direct our stress response system, our immune system, and our hormone output, and controlling inflammation in the body. Every time we experience a reaction to gluten, and our adrenals respond by sending out a surge of cortisol to help control inflammation, we are depleting our adrenal reserve.  When this happens chronically, over time, our adrenal system cannot keep up and becomes fatigued.  Symptoms of adrenal fatigue have far-reaching consequences throughout the body, including, of course, feeling fatigued and run down. But, adrenal fatigue can also affect our hormones, our blood sugar regulation, our mental acuity, our temperature regulation, and our ability to cope with food allergies, environmental allergies, and infections.

    Can the liver, the body’s largest internal organ, be affected by gluten intolerance too?  One example is autoimmune hepatitis, in which can be untreated celiac disease can be found in large numbers. Early screening testing for celiac disease is now strongly recommended for patients diagnosed with autoimmune hepatitis.

    The pancreas, which is key in blood sugar regulation, is highly affected by gluten intolerance.  Autoimmune disease triggers the development of Type I DM, and is becoming more closely associated with celiac disease.  Testing for celiac disease is now becoming a routine part of examination when a child develops Type I DM, and now that physicians are looking for celiac disease in juvenile diabetes, they’re finding it with greater frequency. Blood sugar regulation problems are also associated with non-diabetes hypoglycemia in those affected by gluten intolerance and appear to resolve with a low-glycemic gluten free diet.

    So, we’ve covered most of the body’s major internal systems. Now, let’s look at the extremities, our upper and lower limbs, where gluten-associated problems are also found. Ehlers-Danlos Syndrome, a collagen disorder resulting in shoulder, elbow, and wrist joints that dislocate easily (and other characteristics) is a genetic disorder that may also be associated with celiac disease.  I had mild symptoms of this disorder as a child, but never knew it had a name until I ran across it recently.  With a child who has this disorder, a simple game of swinging a child by the arms, or swinging a child between two sets of their parent’s arms, can result in a trip to the emergency to put their joints back into proper alignment. This is not to say that a reaction to gluten causes this genetic disorder, but that if you have a personal or family history of Ehlers-Danlos Syndrome, and symptoms that may be related to celiac disease, you should consider being tested.

    Rheumatoid arthritis is another of the autoimmune disorders associated with celiac disease, and often affects the fingers with crippling joint deformation. Other joints in the body can also be affected. Scleroderma is another terribly disfiguring and sometimes fatal autoimmune disorder affecting every part of the body. It is often first identified in the extremities, particularly the fingers. In scleroderma, normal tissue loses it’s flexibility as the body’s autoimmune response produces inflammation and an overproduction of collagen.  Collagen is the tough fibrous protein that helps form connective tissues including tendons, bones, and ligaments. Excess collagen is deposited in the skin and body organs, eventually causing loss of function.  Scleroderma can be associated with celiac disease.

    The arms and legs are also common spots for yet another autoimmune disorder, psoriasis, to develop.  Some patients with psoriasis are responsive to a gluten-free diet, but unfortunately, not everyone. Another skin condition that often shows up on the arms is dermatitis herpetiformis (DH), although this itchy blistering skin rash can occur in other places as well.  Common sites are the backs of the elbows and the backs of the knees, or on the lower legs.

    Peripheral neuropathy is a disorder that results in numbness, tingling, and sometimes severe nerve pain in the extremities.  Finger, hands, toes, feet, and lower legs may all be affected. Although usually associated with diabetes, peripheral neuropathy shows up fairly frequently in those with celiac disease, and is fortunately reversible on a gluten free diet supplemented by B-vitamins and some specific amino acids.  Peripheral neuropathy is usually associated with older people, but some of the cases I’ve observed recently have been in very young children who had severe malabsorption issues.  Fortunately they healed quickly and their neuropathy symptoms resolved completely.

    There a few last symptoms related to malabsorption that tend to show up in those with celiac disease or gluten intolerance.  Easy bruising and bleeding, either due to a deficiency of Vitamin K, or to an autoimmune platelet disorder, is one. Rickets, or osteomalacia – a softening of the bones in the legs related to vitamin D deficiency – is another. As we said before, inflammation goes along with celiac disease and gluten intolerance, and a common site for inflammation is the lower extremities.  Sometimes this can be profound, and trigger doctors to think heart disease, but it’s often unresponsive to Lasix and other diuretics. This condition, too, may also clear up on a gluten-free diet.

    As for me, I’ll be happy to be gluten-free, from head to toe.


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    Guest Gloria Brown

    Posted

    Great overview of common responses to Celiac Disease! The hallmark of celiac disease is often seen in the inability of disease to respond from standard treatment and, for the astute Celiac, indicative gluten is still in their food and environs.

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    This is one of the best I've seen! It explains so much and helped me understand more. Thank you. I've forwarded this page to family and friends that I know will benefit from this information!

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    I thought you wrote this about me. There are so many symptoms you touched on that no one has been able to explain to me. I know now many of these symptoms are not a coincidence, but a fact that they do exist in a person of Celiac Disease. I thank you for all the information and education for our community.

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    I was diagnosed with Celiac Disease 2/13/09. After researching the disease, I am wondering how long I have been misdiagnosed! I have had a good number of symptoms for the last 30 yrs. My sister found out 5 yrs ago, that she had Celiac Disease, and she told me for at least 4 of those years to go in and be tested. She knew from the research that she had done, and knowing me so well, that I had it. She just had the leaky gut syndrome, but I have had at least a dozen symptoms, for 30 yrs! I feel better, but still have a long way to go. Gluten free is the only way I can keep my terrible headaches away. but I have yet to build up my strength and am always tired yet, but I'm sure it will take some time. I also haven't had one canker sore in my mouth since quitting gluten. My bones and joints still ache and get numb and tingle yet, but time will tell.

    I'm glad I know what has been wrong with me and doing whatever I can to feel better. It's taken its toll on me. My teeth are bad and are always rotting or breaking off. But thank you for all the information you can give me. Cindy

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    Guest Joan White

    Posted

    It is gratifying to continue learning how this disease affects our bodies. Staying informed may help identify problems early for better treatment and outcomes.

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    Extremely informative. Thanks for sharing this information.

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    Guest Sheila A Stewart RN

    Posted

    As one nurse to another, Thank You so much! I too am glad to be gluten free! My son and one out of three granddaughters are also celiac. A very informative article.

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    Guest Kimberly

    Posted

    Thank you so much for this information. My son has been having symptoms of some kind of food intolerance since 4th grade. First we thought it was fatty food, most recently we switched him off milk. Now at 13 he still has occasional stomach cramping, gas and headaches like you listed above. I am very eager to find find the solution. Thanks again.

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  • About Me

    An RN for 14 years, I have been following a strict gluten-free diet for six years of improving health! Now I help others as a Celiac Disease/Gluten Intolerance Educator. I work one on one with people on meal planning, shopping, cooking and dining out gluten-free. I will also work with children who have behavioral issues related to gluten or other food sensitivities.  My book "Gluten-Free PORTLAND" is a comprehensive resource guide to the gluten-free diet and is available on my website www.glutenfreechoice.com. My other websites are: www.WellBladder.com and www.neighborhoodnurse.net.

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    Scott Adams
    This article appeared in the Spring 2007 edition of Celiac.coms Scott-Free Newsletter.
    Celiac.com 08/29/2007 - The XII International Celiac Disease Symposium, proudly hosted by the Celiac Disease Center at Columbia University, featured presentations from researchers from all over the globe. The last session of the scientific portion of the symposium, entitled “Non-Dietary Therapies”, was full of controversy and fireworks. Talks given by Drs. Khosla, Gray, Paterson, Anderson and Mitea all revealed that potential alternatives to the gluten free diet are now being aggressively pursued. Several groups have even spun off from pharmaceutical companies to raise funds to test these alternatives in patient trials. However, several questions remain. How close are we to a “pill” or “vaccine” to treat or prevent celiac disease? And do we even need, or more importantly, WANT them, given that the diet is safe and effective?
    Any alternative therapy for celiac disease must be at least as safe as the gluten-free diet, which, if done correctly, has NO side-effects. So the bar is raised very high. An alternative must offer great medical benefit to celiac patients without causing any medical harm. It is also unclear how, exactly, these new therapies will be implemented. Can they treat existing celiac disease? Will they prevent those at increased risk for the disease (such as siblings) from having symptoms? Will these medications allow celiac patients to ingest as much gluten as they want, or will they just take away the fear of contamination when eating questionable foods? What follows is a summary of several important points raised by some of these speakers in regard to the research that their center is doing in this area of “alternative therapies for celiac disease.
    Two groups discussed their research on what has commonly become known as “the celiac pill”. The idea behind the “pill” is somewhat similar to the idea of taking a lactase enzyme supplement to digest the milk sugar lactose (if you are lactose intolerant). However, digesting the proteins that trigger the immune reaction in celiac disease is much more complex than digesting the simple sugar found in dairy products. The small fragments of the gluten proteins from wheat, rye and barley, which stimulate the immune system in someone with celiac disease, contain a large quantity of an amino acid called proline. The stomach and pancreatic enzymes in humans have difficulty digesting the fractions where these prolines are located, making the gluten highly resistant to complete digestion. The idea behind the “celiac pill” is to provide enzymes to break down the gluten into smaller fragments which will not be recognized by a celiac patient’s immune system. Therefore, theoretically, gluten would not cause an immune reaction and could be safely eaten.
    Dr. Gary Gray, an adult gastroenterologist working at Stanford University in California, addressed this issue in his presentation “Oral Enzyme Therapy”. Their study looked at 20 biopsy-proven celiacs in remission (without symptoms) who received orange juice with either gluten or gluten pre-treated with a special enzyme (abbreviated PEP, for prolyl endopeptidase). Each patient consumed a low dose of gluten daily, 5 grams, which is equivalent to one slice of bread. The patients completed a daily symptom questionnaire, and had urine and stool tests of to measure intestinal damage. The researchers concluded that pretreatment of gluten with PEP avoided the development of fat or carbohydrate malabsorption in the majority of those patients who, after a 2-week gluten challenge, developed fat or carbohydrate malabsorption. The PEP enzyme needs to be investigated further in larger trials of celiac patients.
    Cristina Mitea, working with Dr. Fritz Koning at Leiden University in The Netherlands, also presented some data using similar technology, entitled “Enzymatic degradation of gluten in a GI-tract model”. This group published in 2006 that the above described PEP enzyme may not work optimally in the celiac patient, since it is not active at low stomach pH. The PEP enzyme may also be broken down by pepsin, a digestive enzyme in the stomach, before it reaches the small bowel where gluten causes the most damage. Given these facts, this group of researchers characterized a prolyl endoprotease enzyme, derived from the fungus Aspergillus niger, abbreviated AN-PEP. The AN-PEP enzyme, according to some publications, has been shown to work at stomach pH while resisting pepsin digestion. In the lab, the AN-PEP was able to degrade intact gluten as well as small fragments of gluten, including those that stimulate the immune system in patients with celiac disease. It also appeared to act within minutes, which is 60 times faster than PEP. This is particularly important, as ingested gluten will leave the stomach to enter the small bowel within 1 to 4 hours after being eaten. These researchers state that this enzyme is very stable, and could be produced at low cost at food-grade quality in an industrial setting. However, it has not yet been tested in human clinical studies.
    In summary, some of these future potential treatments include:
    The development of genetically detoxified grains Oral or intranasal celiac vaccines to induce tolerance Inhibitors to the effects of zonulin on intestinal permeability Detoxification of immunogenic gliadin peptides (or gluten proteolysis) via oral peptidase supplementation Inhibitors of tissue transglutaminase Dr. Michelle Pietzak, “The Gluten Free MD” is an Assistant Professor of Clinical Pediatrics at the University of Southern California Keck School of Medicine. She sees patients at Childrens Hospital Los Angeles and Los Angeles County Women’s and Children’s Hospital. With New Era Productions, she has recently released an audio celiac disease set as well as a 2 disc DVD set about celiac disease and the gluten free diet, available at www.glutenfreemd.com.

    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 TestsThe 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. 


    Rivkah Roth D.O., D.N.M.
    The Celiac Disease Confusion
    Celiac.com 08/28/2012 - What's In A Name and When Does Celiac Predisposition Become A Disease?
    No doubt that global awareness about celiac disease and its possible involvement in a myriad of other (mostly autoimmune response related) conditions is growing. Growing, unfortunately, is confusion about terminologies and medical implications.


    The “Common” Understanding
    "Celiac disease" has become a generic blanket term not unlike how "Kleenex" today signifies no more than a box of tissue paper of any brand. So, in the public mind, "celiac disease" today stands for everything connected to a reaction to gluten.[1]
    Such an approach is highly imprecise and misses
    the need for distinction between non-celiac and/or celiac gluten sensitivity and the fact that a predisposition does not necessarily constitute disease.

    The 2012 Internationally Accepted Definition
    In an attempt to bring some clarity to the medical community, the world’s leading celiac minds earlier in 2012 met for an international convention in Oslo, Norway.[2]  During that convention, and after considering many of the most commonly used terms, they recognized

    …the presence of genetic, predisposing patterns…
    and called for a

    …distinction between "celiac disease" versus "gluten-related disorders"… [3]
    Let us be clear: This terminology refers solely to the underlying toxic effect of gluten rather than the possibly resulting disorders that may be based on other, additional triggers as well.


    Genotyping Tells Non-Celiac from Celiac Gluten Sensitivity
    Along with ever mounting genotype-related research, detailed HLA-DQ2/DQ8 human leukocyte antigen genotyping[4] today allows us to distinguish between predispositions to non-celiac and/or celiac gluten sensitivity (NCCGS) predisposition.
    Increasingly, research results link gluten issues to a considerable list of specific conditions and, therefore, allow for and promote a “natural” approach (i.e. gluten free diet and lifestyle) to resolve a complex panel of non-obvious signs and symptoms.
    Accordingly, "Celiac" is not (yet) a disease but a metabolic predisposition, i.e. the body’s inability to digest certain grain proteins, prolamines, etc.—much like a gasoline fueled car will sputter and eventually corrode on diesel fuel.


    Predisposition vs. Disease
    A genetic predisposition to celiac only becomes a disease (e.g. celiac disease or one of the non-celiac gluten sensitivity enabled conditions)[5] if the body’s inability to digest gluten and certain other grain proteins is ignored at the expense of the immune system.[6]
    In other words, an individual genetic predisposition to celiac only develops into full blown disease if that particular individual does not adhere to a gluten-free diet and lifestyle.
    An European Union et al commissioned research paper concluded:

    The environment clearly plays a crucial role in the development of celiac disease: No gluten, no disease!….
    …Because gluten is present in relatively large amounts in a variety of common food products, the daily gluten intake in a Western diet is high. In combination, we see that every HLA-DQ2– and/or -DQ8–positive individual is exposed to a large repertoire of immunogenic and abundant gluten peptides, and this may be an important factor determining disease development. There is, at present, no evidence linking additional environmental factors to celiac disease. [7]


    Big Business: Catering to a Gluten Free Diet
    The facts are everywhere and are illustrated further by these research abstract numbers posted on PubMed:
    18,565 on “celiac disease” (607 alone in 2012 – Jan. to Jly.) 9,689 on “gluten” (385 in 2012 – Jan. to Jly.) 3,447 on “glutenfree” (192 in 2012 – Jan. to Jly.) In addition, 38,878 abstracts deal with wheat research, whereof 1,862 in 2011, and 1,384 in 2012 to date (Jan. to Jly.).
    Clearly: $6.1bn spent 2011 on gluten-free foods in the USA—and a 30% growth from 2006 to 2010 in Canada to $2.64bn—indicate “Big Business” complete with the risk of missed, omitted, and mis-information for the goal of promoting greater consumption of gluten-free processed foods.
     
    The Challenge
    Our present naming confusion, therefore, may end up fuelling potential manipulation and mismanagement of the patient and consumer from the part of medical, pharmaceutical, supplement, and food industries.
    Even the above mentioned latest attempt at coordinating nomenclature and distinction between non-celiac and/or celiac gluten sensitivity brings with it several major flaws and challenges:
    It may take years for new naming conventions to become accepted throughout the international medical and dietary community. Recognizing a term such as "gluten-related disorders" or “non-celiac gluten sensitivity” calls for a total revamping of our medical and diagnostic systems in order for the large number (so far about 160) of autoimmune and other disorders to be recognized as gluten-related.   In addition, future questions will arise as research identifies and confirms more genetic links:
    Already, clinic practice shows that some of the "celiac" patients, previously diagnosed by positive intestinal biopsy[8] and serological findings now, on genotyping[9], turn out to carry "non-celiac" and not “celiac” gluten sensitivity alleles. Where does this leave such individuals on the traditionally used "celiac disease" versus "gluten-related disorder" specter?
    Clearly, despite good intention for a more precise naming distinction, it appears that additional work is needed in order to entrench new medical terminology and disease pictures.
     
    Conclusion
    Until then, whenever one of my patients receives a positive HLA gene test, I will adhere for clarity’s sake to the terms of “non-celiac” and/or “celiac gluten sensitivity” (NCCGS).
    This terminology refers solely to the underlying toxic effect of gluten and prevents a wrong implication of predisposition=disease diagnosis. Instead, “non-celiac and/or celiac gluten sensitivity” will simply point to the inherited underlying predisposition to specific additional triggers and complications if exposed to gluten.
    Most importantly, I will make sure to instill in my patients that disease is not the inevitable outcome of their genetic predisposition, and that a 100% gluten-free diet and lifestyle allows for avoidance, control, and perhaps even reversal of a complex web of interrelated autoimmune-based conditions and disorders, both for non-celiac and for celiac gluten sensitivity related disorders.

    [1] http://www.ncbi.nlm.nih.gov/pubmed/22351716  Ann Intern Med. 2012 Feb 21;156(4):309-11. Nonceliac gluten sensitivity: sense or sensibility?
    [2] http://www.ncbi.nlm.nih.gov/pubmed/22345659  Gut. 2012 Feb 16. [Epub ahead of print] The Oslo definitions for coeliac disease and related terms.
    [3] http://www.ncbi.nlm.nih.gov/pubmed/19940509  Int Arch Allergy Immunol. 2010;152(1):75-80. Epub 2009 Nov 24. Differential mucosal IL-17 expression in two gliadin-induced disorders: gluten sensitivity and the autoimmune enteropathy celiac disease.
    [4] http://www.ncbi.nlm.nih.gov/pubmed/22123644  Curr Opin Gastroenterol. 2012 Mar;28(2):104-12.  Advances in coeliac disease.
    [5] See future articles posted in these pages...  
    [6] http://www.ncbi.nlm.nih.gov/pubmed/21787225  Int Rev Immunol. 2011 Aug;30(4):197-206.  Important lessons derived from animal models of celiac disease.
    [7] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC209453/?tool=pmcentrez  J Clin Invest. 2001 November 1; 108(9): 1261–1266. doi:  10.1172/JCI14344  PMCID: PMC209453  Interplay between genetics and the environment in the development of celiac disease: perspectives for a healthy life.
    [8] http://www.ncbi.nlm.nih.gov/pubmed/22742547  Arch Pathol Lab Med. 2012 Jul;136(7):735-45.  An update on celiac disease histopathology and the road ahead.
    [9] http://www.ncbi.nlm.nih.gov/pubmed/21593645  J Pediatr Gastroenterol Nutr. 2011 Jun;52(6):729-33.  HLA-DQ genotyping combined with serological markers for the diagnosis of celiac disease: is intestinal biopsy still mandatory?