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  • Dr. Ron Hoggan, Ed.D.

    A Changing Paradigm

    Dr. Ron Hoggan, Ed.D.
    3 3
    Reviewed and edited by a celiac disease expert.

      Journal of Gluten Sensitivity Spring 2008 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.


    Image: CC BY-SA 2.0--Helgi Halldórsson/Freddi
    Caption: Image: CC BY-SA 2.0--Helgi Halldórsson/Freddi

    Celiac.com 11/21/2020 - A light snow is falling and the air carries a December chill.  I am reminded of my brother's death on a similar day eleven short years ago.  During the preceding year, doctors refused to test my brother for celiac disease following his diagnosis with lymphoma.  Their stated reasons were that celiac disease is too rare to be considered, he showed none of the classic signs of celiac disease, and his lymphoma, a separate and more serious illness, needed to be addressed first.  One physician even stated that the gluten-free diet was nutritionally inadequate and it would deprive my brother of the meal-time pleasures of a regular diet "during the time he has left." Celiac disease, I was told, could be investigated after the lymphoma was resolved.  Concurrent and subsequent discussion revealed that my brother's death was the resolution they expected.  At that time, only a small pocket of researchers, along with a group of informed physicians (and others) who managed to stay current with the medical literature regarding celiac disease, were aware that it can be a large underlying contributor to lymphoma and other cancers, and institution of a gluten-free diet can provide some important benefits to those battling cancers in the context of celiac disease.  

    Aside from the obvious objections to claiming that Jack would enjoy food—any food—during multiple courses of chemo and radiation therapy is suspect, and that it might have been valuable to forestall prophesying his death until after these treatments were at least begun, a number of larger objections arise out of these physicians' confident disregard for the medical and scientific literature.  The pervasive attitude was one that trivialized celiac disease and dismissed any other form of gluten sensitivity.  Fortunately, an emerging paradigm is supplanting these outdated prejudices and the last decade has witnessed huge gains in physicians' and public awareness of celiac disease.



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    Students of celiac disease, dermatitis herpetiformis, and gluten syndrome (non-celiac gluten sensitivity) know that gluten induced illness is far from rare and can manifest in an enormously wide range of signs and symptoms.  Turn-of-the-century publication of multi-center research has established that celiac disease, far from being rare, is found in about one percent of the U.S.  population.  Most of these individuals also lacked the classic signs and symptoms of celiac disease.  Further, the rate of gluten syndrome is at least ten times that of celiac disease, and gluten antibodies are very frequently found among those with neurological disease.  The research team headed by Marios Hadjivassiliou at the Royal Hallamshire Hospital in Sheffield, England has shown that more than half of patients suffering from neurological ailments of unknown origin are gluten sensitive.  (Most neurological diseases are of unknown origin.) Another group working at the University of Alberta, led by B. Yacyshyn, reported leaky gut in twenty five percent of a group of twenty multiple sclerosis patients, so gluten is an important suspect in at least some cases of one neurological disease that is fairly well characterized.  Another report of just two patients shows that a gluten-free diet can abolish islet cell antibodies that destroy insulin producing cells in the pancreas.  These antibodies are the basis of type I diabetes.  Other reports show that obesity can be induced by gluten and mediated by a gluten-free diet.  Still others report amelioration of psychiatric illnesses, behavioral abnormalities, and/or learning disabilities as the result of a gluten-free diet.  Most students of the gluten syndrome are learning about this wide range of signs, symptoms, and associated illnesses.  Many of us have experienced improved general health along with subtle improvements across a range of modalities and perceptions.  Many of us suspect that these changes exceeded what could be expected to arise from improved general health.  When learning about the protean manifestations of gluten induced illness, those suspicions are affirmed.  

    It is through sharing this learning that celiac disease and gluten syndrome have begun a shift from the fringes of our culture to widespread, mainstream awareness of gluten induced illness in all its manifestations.  Much of the research community involved in celiac disease has led the way.  Increasingly informed (largely through the Internet) patients and their support groups have moved awareness of celiac disease from obscurity to mainstream in little over a decade.  Recognition of gluten syndrome lags far behind celiac disease, but is increasing rapidly.  The final, large step in this process of enlightenment is to assist those struggling, straggling, overworked general practitioners get up to speed on this most common illness.  These are the individuals who continue to ignore the literature on this topic.  They confidently dismiss the possibility of celiac disease or gluten syndrome on the basis of an out-dated, often prejudiced, largely erroneous understanding of gluten-induced illness as it was taught during their training.  

    The sadness of my brother's passing has abated to the point where I can now think and talk about it without the sense of emptiness and loss that comes of knowing that I won't see him again—and without the anger and frustration borne of the widespread medical ignorance at the general practitioner level.  Today, I can freely share my brother's painful, final journey in the hope that it will hasten the abolition of the medical ignorance and arrogance that helped speed his untimely death.  I still struggle with the memory that my brother's doctors complained to Jack about my badgering them to test him for celiac disease.  They complained to a dying man about my annoying letters, while they ignored my repeated pleas that he be tested for celiac disease.  I am still chagrined by their dismissal of research showing a substantial genetic component in celiac disease, knowing full well that I, his brother, had previously been diagnosed with celiac disease.

    During the eleven years since my brother's death, an emerging awareness of gluten mediated illness has blossomed throughout the industrialized world and has reached tentacles into the third world.  Although knowledge of the health hazards of gluten is spreading world-wide, recognition of gluten's threat to human health is still an emerging paradigm.  Another decade of dedicated effort on the part of support groups, researchers, and others, should have celiac disease appearing frequently in the differential diagnosis for an enormously wide range of signs and symptoms, with gluten syndrome following on its heels.  And perhaps a gluten-free, dairy-free diet will soon be standard fare for most cancer patients, freeing their immune systems to battle malignancies rather than gluten.

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    This hit home  for me.  Two of my first cousins died of Lymphoma in the same year. One was the son of my paternal aunt and the other was the son of my paternal uncle. Each of them was 50 years old at death.  I was 54 when they died and had just been diagnosed with celiac disease few months before they died.  I wondered if they had issues with gluten. 

    One of them had an autopsy because she died suddenly after supposedly being in remission.  Sure enough, she had celiac disease and it was listed as an underlying cause of death on her death certificate.  The other cousin battled the cancer for years to no avail in a different state and since he was in the hospital for cancer treatment, there was no autopsy, but I would bet he had it too.  We all suffered from migraines since childhood as did our paternal grandmother.  My parents got tested after my diagnosis.  My father was 82 when he was diagnosed.  The doctor said it explained the duodenol ulcer he had since the age of 15 and why he was only 5'7 when every other male was at least 6' tall on both sides of his family!

    Thankfully, my sons and grandsons were tested after my diagnosis.  One son and both of his children have Celiac disease, and the other son is gluten sensitive..  Thankfully, the grandkids were put on gluten-free diets at the age of 3 and 7 months.  The 3 year old had "unexplained failure to thrive."  He grew an inch and gained 6 pounds the first month he was gluten-free!  Hopefully, they will reach their full height, unlike either of my sons who are short like their Celiac grandfather was.

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    I think the number of people who have celiac disease is way higher than 1%, from what is always said by the media or doctors. I read a book, which talked about a study in Finland and other studies around Europe, and the number of people with the celiac gene markers, increased several times from 1950 to 2000. I read a while ago, an article or scientific paper, which stated that the number of people with celiac disease in Denver was 7.5%. Anyway, there's a study done at that city, see link below, which states that 3.1% of kids aged 15 years old, tested positive for celiac disease. 

    https://celiac.org/about-the-foundation/featured-news/2017/04/cumulative-incidence-celiac-disease-children-adolescents/

     

    If you get the people, who have celiac disease, allergic to wheat or sensitive to gluten, but don't have celiac disease, you might end up having a double digit percentage figure of people who can't eat anything with wheat. The reason why the real figure is never known is because doctors never test for celiac disease or underestimate the dangers of the different proteins in the wheat, which can provoke all sorts of health problems. There's also another protein in the wheat, which can cause neurological problems. 

     

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  • About Me

    As co-author of "Dangerous Grains" and "Cereal Killers", the study of the impact of gluten continues to be a driving passion in my life. I am fascinated by the way that gluten induces illness and impedes learning while it alters mood, behavior, and a host of other facets of our existence. Sure, the impact of gluten on health is an important issue, but that is only the most obvious area of impact. Mood disturbances, learning disabilities, and the loss of quality of life due to psychiatric and neurological illness are even more tragic than the plethora of physical ailments that are caused or worsened by gluten. The further I go down this rabbit hole, the more I realize that grains are a good food for ruminants - not people. I am a retired school teacher. Over the last decade, I have done some college and university level teaching, but the bulk of my teaching career was spent working with high school students. My Web page is: www.DangerousGrains.com


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