TheGlutenSyndrome.net.top Patient perspectives on Gluten Grain Intolerances and Sensitivities including Celiac Disease, and the risks of Gluten Challenges for Diagnostic Purposes (Formerly GlutenSensitivity.net)
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History of Gluten Grain Intolerance and other
important historical events
and trends in health.
The purpose of this page is not only to highlight the gluten story, but also other lesser known historical medical events, trends and research that may play into the gluten syndrome and/or health in general. As societal and particularly children's health becomes a puzzlingly disturbing issue in educated, technologically focused nations, some of these previously abandoned or ignored ideas have been dusted off and reexamined.
Interwoven are factors that some researchers believe may underlie or contribute to the gluten syndrome: Cellular vs Germ theory - Germ theory favored drugs and processed food over health and wholeness. Processed Food - Wheat and milk resemble each other molecularly and are significantly processed. Toxins - Toxins are fingered as the "big guns" in the gluten syndrome. Fat trends - Fats handle toxins, affect gut cell membrane, help digest grains, and carry fat soluble vitamins. Sugar/Carb/Yeast debate - Sugars and yeasts contribute to gut dysfunction and immune cross reactions.
they belong must be clicked open.
Ancient History Bible Times - Exodus 23: 25, 26 Aretaeus the Cappadocian - 100's AD
1800's Matthew Baillie - early 1800's Bechamp vs Pasteur (Cellular theory vs Germ theory) - 1850's - early 1900's
1900's - 1950's Hydrogenated fats (Crisco) are introduced - 1911 The carb vs protein debate (sugar/starch vs gluten) Drs. Emmett Holt and Christian Herter research carbohydrates and digestive ailments - early 1900's Willem Dicke observes correlation between gluten grains and celiac symptoms 1952 Margot Shiner develops the endoscopy tool Carbohydrate vs gluten (protein) debate - Gluten wins but few are dx'd. 1950's Increased use of food and agricultural chemicals and hydrogenated fats after WW 2 - 1950's on Elaine Gottschall returns to school to carry on the work of Dr. Sidney and Merrill Haas. - 1960's Celiac disease is considered rare and is virtually forgotten.
1960's - 2000
1970's Vegetable oils and low fat/no fat trend. Saturated fat is demonized - 1970's Vitamin E trend - late 70's (vitamin E is a fat soluble vitamin ie, found in fats) Europe catches on to celiac disease - 1970's
1980's
1990's Early 1990's - Increased vaccination schedule Autism increases exponentially - early 1990's Alesio Fasano challenges the US medical establishment on celiac disease - early 1990's Cell phone coverage and general levels of electrosmog rise rapidly from early 1990's until present. 1992 Food Pyramid replaces 4 food groups - 1992 (New recommendations call for grains as the largest food group) 1996 - Genetically engineered crops are first planted in the United States - 1996 1996 - Mario Hadjivassiliou begins publishing articles on neurological effects of gluten -1996
2000 Dr. Ken Fine opens Enterolab Dr. Fine
2003 Fasano celiac study hits the press - Celiac disease rapidly gains media attention. -2003 Jeffrey Smith publishes Seeds of Deception - a wake up call for genetically modified organisms
2004 Alba Therapeutics is formed to develop a drug to treat celiac disease.
2006 New allergen labeling laws - 2006 Transfats (partially hydrogenated vegetable oils) are banned in New York City Interesterification of vegetable oils replaces transfats with unknown consequences. 2007
2007 Many more antibodies to test and the more antibodies tested the more patients test positive Many more tissues to check for damage beside, not necessarily including, villi
2008 Dr. Thomas O'Bryan tours the US speaking on Gluten Sensitivity in the wider perspective and reaches 3000 professionals. - 2008
2009 Genetically modified beet sugar hits the market. - 2009
Celiac specialists in 2003 Fasano Green Levy Rudert Guandalini Murray Pietzak Zone Gluten syndrome advocates Marsh Hadjivassiliou Braly Hoggan Fine Vojdani O'Bryan Ford Wangen Peterson Lieberman Lewey
And "And ye shall serve the LORD your God, and he shall bless thy bread, and thy water; and I will take sickness away from the midst (ie middle or can be 'bowels') of thee. There shall nothing cast their young, nor be barren, in thy land: the number of thy days I will fulfill."
100's - 250? AD approximately - Aretaeus the Cappadocian - Secular medical literature alludes to descriptions that specifically resemble gluten or possibly other food intolerances in writings from 100 AD, when a Greek physician, Archaeus the Cappadocian described "The Coeliac Affection". Francis Adams translated his description from Greek to English in 1856 for the Syndenham Society of England and translated the Greek term "koiliakos" to the more accurate European term "coeliac". "Celiac" is the less specific American version. They simply mean "belly or abdominal". (Medical Meanings by William S. Haubrich p. 43) Below is an Aretaeus quote from Digital Hippocrates : The Extant works of Aretaeus the Cappadocian. (picture at left)
ON THE CŒLIAC AFFECTION.
300 AD - A Roman physician - described a diarrheal condition similar to celiac disease, for which he suggested plantain juice and fasting. Management of Celiac Disease - SV and MP Haas, JB Lippincott Co., Philadelphia (from Breaking the Vicious Cycle, Elaine Gottschall)
1745 - Prince Charles Young Pretender to the Enlish throne is reported to have suffered ulcerative colitis and recovered on a milk free diet. Cereals and Schizophrenia - data and hypothesis. Acta Psychiatry Scandinavia 42:125-152. (from Breaking the Vicious Cycle, Elaine Gottschall)
Matthew Baillie - In the early 19th century, a Dr. Mathew Baillie probably unaware of Aretaeus, published his observations of a "diarrheal disease of adults causing malnutrition and characterized by gas - distended abdomen. He even went on to suggest dietetic treatment, writing, "Some patients have appeared to derive considerable advantage form living almost entirely upon rice. His observations, however, went practically unnoticed.
Germ theory vs Cellular theory - By the mid 1800's the invention of stronger microscopes afforded researchers a new view of microbiology. Two well known French scientists, Louis Pasteur and Antoine Bechamp both saw the same images under their microscopes but interpreted what they saw differently. Their opposing ideas were a subject of debate in the French Medical Society for the rest of the century. They both passed away around the turn of the 20th century. The opposing camps of opinion held a "showdown" in which each presented proofs. It is believed by some cellular theorists today that the cellular (or soil) theory proofs were bungled and mainstream science adopted Pasteur's germ theory as the basis interpretation of research until the present. However, predictions of the cellular theorists have come true and some research today appears to support some of these ideas.
Samuel Gee, 1839 - 1911, London, England - and it was for the English doctor Samuel Gee, a leading authority in pediatric diseases, to take full credit for the modern description of celiac disease some 75 years later, when he gave a lecture to medical students on the "celiac affection," the milestone description of this disorder in modern times. Like Baillie, Gee sensed that "if the patient can be cured at all, it must be by means of diet." He added that "the allowance of farinaceous food must be small", and also described "a child who was fed upon a quart of the best Dutch mussels daily, throve wonderfully, but relapsed when the season for mussels was over; next season he could not be prevailed upon to take them." Thus he documents the improvement following the introduction of a gluten-free diet, and the relapse after reintroduction of gluten. His famous quote, "We must never forget that what the patient takes beyond his ability to digest does harm."
Samuel Gee's description of coeliac disease is as follows.
"There is a kind of
chronic indigestion which is met with in persons of all ages, yet is
especially apt to affect children between one a five years old. Signs of
the disease are yielded by the fæces; being loose, not formed, but not
watery; more bulky than the food taken would seem to account for; pale in
colour, as if devoid of bile; yeasty, frothy, an appearance probably due
to fermentation; stinking, stench often very great, the food having
undergone putrefaction rather than concoction." Quote Dr Guandalini As the decades passed, there was still no clue as to what could be causing celiac disease and no hint (in spite of autopsies frequently performed given the high mortality rate) of the damage to the intestinal mucosa. Yet some of the present-day findings, which we tend to consider as recent advances, were indeed well known long ago, including that celiac disease could be present without diarrhea, the protective role of breast-feeding in the development and severity of celiac disease, only recently documented, and the increased incidence in families, particularly twins.
Processed foods appear followed by widespread degeneration of societal health Professionals who practiced between 1900 and 1930 observed such a sharp decline in public health and a rise in digestive disorders, heart conditions and many others that some of them set out to find answers. They and also many missionaries and explorers were impressed by the contrast in health between peoples who still subsisted on centuries old dietary practices dictated by their local environments, and the deteriorating health of western civilizations. Modern societies had switched to “displacing foods of modern commerce”, mainly processed white flours and sugars, canned milk, meats and vegetables, and new hydrogenated vegetable oils such as the 1911 introduction of “Crisco.”
This research not specifically
gluten focused - but on the general
effects of processed food in societies around the world.
The carbohydrates vs gluten debate (sugar/starch vs protein)
As digestive disorders and many other health conditions increased, much excellent research was performed between 1900 and 1950. In the 1950's a debate among professionals arose over the role of carbs vs. protein (gluten) that exists to this day. Perhaps all sides are correct to some degree depending on the case. (Later, by the 1980's, "most carbohydrates and sugars" were fingered in overgrowth and treatment of candida/yeast issues.) Some researchers:
1. focused on permanent removal of certain grain proteins - Gluten Free Diet. 2. focused on temporary removal of specific carbohydrates (sugar, starch) - Specific Carbohydrate Diet 3. focused on temporary removal of all sugars and starches - Candida/Yeast Diets More candida diets
Carbohydrate research came first. Reference, Breaking the Vicious Cycle, Elaine Gottschall Between 1900 and 1950 several researchers and their assistants handed off their work from one to to the other as they passed on. They all focused on starches and sugars.
1908 - Drs. Emmett Holt Sr, Bellevue Hospital and Christian Herter, Columbia University published "On Infantilism from Chronic Intestinal Infection". Remarkably they proposed that the nervous system was a main target of the disease and that "the most frequent cause of relapses is the attempt to encourage growth by the use of increased amounts of carbohydrates."
1921 - Drs. John Howland and Sydney V. Haas. Dr. Howland and Haas were Dr. Holt's younger assistants at the Vanderbilt clinic and were inspired to carry on his work. Dr. Howland presented his paper "Prolonged Intolerance to Carbohydrates" in 1921 to the American Pediatric Society. Again, he focused on removal of carbohydrates.
Dr. Sidney Valentine Haas 1870 -1964 Dr. Haas agreed with his colleague Dr. Howland, but he searched for carbohydrates that agreed with his patients to increase their nutrition. He discovered bananas and banana flour worked well and he continued to develop a diet which included fruits and vegetables containing monosaccarides only (very simple sugar molecules that required no digestion).
Sidney Haas and his professional forebears all focused on problematic undigested starches and sugars in grains, starchy vegetables, refined sugars and other complex carbohydrates with claims of 600 cures. http://www.scdiet.org/7archives/scdceli1.html One year after Sidney Haas published his research on carb digestion, attention turned away from carbohydrates to focus on only the gluten (protein) in only certain grains. Soon after this debate arose, however, Herb and Elaine Gottschall appeared on the scene, Dr. Haas passed, and Elaine Gottschall continued Dr. Haas' work.
Herb and Elaine Gottschall, parents of 8 year old Judy, found Dr. Haas, age 92 in New York. Judy was scheduled for colon removal but his recommendations saved need for surgery and probably spared Judy's life. Herb sent Elaine back to school to discover why Dr. Haas' diet succeeded when all the other doctors failed. Elaine attended university 19 years, became a biochemist, and continued Dr. Haas' work. She formulated the Specific Carbohydrate Diet, (SCD), in it's present form, which removes not only all gluten grains, but all grains, and other foods which contain certain complex sugars. This or similar diets beyond the gluten free diet are increasingly used today by patients with ulcerative colitis, Crohn's disease, autistic children and other digestive and psyschiatric disorders. She claims, as did Dr. Haas, that this diet can in some cases completely cure patients to a degree that they can reintroduce healthy forms of grains and starches. Elaine made it clear that this diet helps many but not all patients.
Attention turns from carbs to protein (gluten) - World War 2 - 1950's
Dr. Willem Dicke,
1905 - 1962, Holland
a
Dutch pediatrician, had previously noted that some sick children in
his practice improved during World War 2 when gluten grains were
unavailable, and deteriorated when these grains
Here is another quote from Dr. Guandalini - "Dicke had noticed that during bread shortages in the Netherlands caused by World War II, children with celiac disease improved. He also saw that when Allied planes dropped bread into the Netherlands, they quickly deteriorated. A few years later, working with others, he produced a series of seminal papers, documenting for the first time the role that gluten from wheat and rye plays in celiac disease.
This quote thanks to the ww.csaceliac.org website Dr. Willem Karel Dicke, a Dutch pediatrician, recognized in 1952 that the disease is caused by the ingestion of wheat proteins. He wrote his doctoral thesis on the subject for the University of Utrecht in 1950. By 1954, Dicke, Charlotte Anderson and a number of their colleagues, working in Birmingham, England confirmed the treatment and described the histologic damage to the intestinal mucosa as being directly related to celiac disease.
Here is another quote from Dr. Guandalini- The next major breakthrough came in the mid-50s, when Margot Shiner described a new jejunal biopsy apparatus with which she successfully reached and biopsied the distal duodenum. This – and the development of the less cumbersome capsule developed shortly after by the American Lieutenant Colonel Crosby -- finally allowed doctors to link the disease with a specific, recognizable pattern of damage to the proximal small intestinal mucosa."
NOTE: The carb vs protein (gluten) debate is important! It is worth the time to read both sides and apply the information to one's own situation. Perhaps carbs and/or gluten are both problems depending on the case. Some patients begin with the Gluten Free Diet and later go further to the stricter Specific Carbohydrate Diet or a Candida/Yeast Diet or other similar carbohydrate based diets. Here are papers from both sides to compare:
The carbohydrate perspective by Elaine Gottschall The protein (gluten) perspective by Dr. Stephano Guandalini
(By the 1970's another even stricter diet appeared, the Candida/Yeast Diet and versions of it. ) The candida/yeast perspective - Dr. William Crook and Bee Wilder's Candida support program
Coming - More circa 1930's research Much fascinating research was performed between 1900 and 1950 which has been ignored or forgotten as corporate and industrial interests powered the direction of science, medicine and politics. This list does not include a number of these scientists passed over by mainstream medical history. They may have important contributions to a better understanding of our current health crisis. As time permits, short biographies of these researchers will be added to this page.
Later 1950's - Gluten focused, villi damage celiac is assumed "rare", and nearly forgotten The gluten centered perspective led to a 1950's diagnostic criteria for "celiac" disease, based on an autoimmune reaction limited to gluten based grains. Symptoms included diarrhea, short stature, failure to thrive, frothy pale stools, and general digestive troubles. At first diagnosis was symptom based, but soon endoscopes and blood tests appeared and diagnosis was further limited to only positive antibodies,villi damage and villi regrowth on the gluten free diet. Sometimes a gluten challenge was required document regression and villi regrowth a second time for final diagnosis.
Unfortunately, only a few of the many patients ill with digestive complaints fit the exceedingly narrow celiac criteria. Attention turned away from carbohydrates AND gluten for several decades. Paradoxically, digestive illness continued to rise, but "Celiac disease" was thought to be extremely rare in the United States. Medical students received minimal training (20 minutes), and were told they would probably never see a case in their practice. Therefore US doctors knew of celiac disease but rarely considered or tested for it. Patients waited an average of 11 years for diagnosis if they were ever diagnosed at all. Many of these unfortunate sufferers were labeled with a catch all term, "Irritable Bowel Syndrome", and advised to manage their particular symptoms with antidiarrheals, antacids and constipation aids. Non digestive ailments such as headaches, seizures, autoimmunity, inflammation or nutritional deficiencies were rarely connected at all. It was nearly the year 2000 before this situation changed in the US.
Chemical and toxin use in agriculture and processed food - After World War 2 and subsequent wars, left over chemical warfare products were put to use as agricultural insecticides. Chemicals and thousands of artificial substances in agriculture, the food supply and environment increased dramatically over the years. NOW they are fingered as relevant by segments of the gluten syndrome and autism communities and other health groups. Many researchers insist that while genes predispose and may explain the occasional case of gluten reactivity in previous centuries, perhaps still in combination with toxic exposures, TOXINS themselves are the "big guns" today. Toxins are now thought by many researchers to degrade the gut wall and expose a much higher percentage of the general population to an immune response to gluten.
1960's - Hippies demanded organics and unprocessed grains such as whole wheat during the "Back to the Earth" movement. Although the hippies realized food processing robbed them of nutrition they did not consider that their whole wheat had been harvested dry with modern equipment. It was not exposed to the elements as in the old days when shocks stayed out in weather and were built with a "cap" to "sweat" the grains. Thus the exposure to moisture and subsequent drying in the sun neutralized phytotoxins in the bran, and released enzymes inside the kernel that assist the body in digestion of the grain. The whole grain movement of the 1960's milled unsoaked grain with phytotoxins still in the bran, and then due to the 1970's lowfat trend, reduced the fats eaten with it that aid grain digestion. Furthermore hydrogenated margarine was often substituted for natural traditional butter. See Wheaty Indiscretions WAPF
1970's - Low Fat-No fat-Vegetable oils - Natural saturated animal and tropical fats were demonized, (butter animal fat, coconut oil and palm oil) and replaced with processed liquid and hydrogenated vegetable oils containing transfats. These were claimed more "heart healthy" even though huge research projects such as the Framing ham Heart Study showed otherwise. Some patients today trace their digestive problems back to when they jumped on the whole wheat, low fat bandwagon in the early '70's. Interestingly, after the low fat trend became established, the fat soluble Vitamin E awareness fad began. See The Oiling of America
1970's - European doctors caught on to protein/gluten based celiac disease in the 1970’s and diagnosis rates climbed accordingly. While an American patient waited on the average for 11 years for a celiac diagnosis, if they were fortunate enough to be diagnosed at all, eventually a European patient was identified in only a few weeks.
1980's - Interest in sugar, carbohydrates and yeast/candida related illnesses reappeared in the US with "Sugar Blues" 1975, by William Dufty, and "The Yeast Connection", 1986, by William G. Crook.
1990's - The Four Food Groups
were
replaced by the
replaced in 1992 by the Food Pyramid with o grains on the bottom and fats at the top.
History of US Dietary Recommendations
1990's - Early 1990's An expanded vaccination schedule for infants and children was put in place and enlarged upon in the ensuing years . A debate arose thereafter over Thimerosal (a mercury based disinfectant) and other additives as well as the safety of some of the vaccinations themselves, as the rates of autism in children rose dramatically.
1990's - Cell phone coverage and other forms of electrosmog such as wireless internet, cordless phones, microwaves, and other exposures grew steadily throughout the 1990's and until present until most of the United States is now exposed to cell phone radiation. Research on the health benefits/dangers of cell phone and electrosmog exposure brings deeply troubling issues to light including concerns that the gut and blood brain barriers may be altered by such radiation. This is of direct concern to the gluten syndrome and allergy/intolerant communities as disturbed tight junctions between gut and other barrier cells is a major instigator of gluten reactivities.
1996 - New organisms in the food supply - Genetically modified crops were first grown in the United States in 1996. These new foods entered the world market unlabeled. They attracted attention more quickly in the UK and Europe, and were labeled "Frankenfoods" in a storm of protest, but it was nearly 7 years before the US began to notice their presence.
1996 - Mario Hadjivassiliou - published an article of gluten and neurology Does cryptic gluten sensitivity play a part in neurological illness? Feb 1996
By the turn of the century, autoimmunity, degenerative disease, obesity, autism, ADD, diabetes, cancer digestive and mental illnesses were obviously on the rise. Children's health was an increasing concern. In response, the movement back to sustainable organic agriculture and Weston Price style traditional dietary habits began to gain ground rapidly. Local organic sources became more easily available and trendy. 2000 - Dr. Ken Fine opened Enterolab in Dallas Texas to research the gluten syndrome and make available to the public a home stool test by mail order. 2003 - Seeds of Deception was published, a call to arms regarding genetically modified crops. Jeffrey Smith, an employee at a genetics lab, spawned a wave of awareness and unease regarding gmo's and diet in general.
2003 - Prevalence of Celiac Disease in At- Risk and Not-At-Risk Groups in the United States was published in the Archives of Internal Medicine, Vol 163, February 10, 2003 286-292 Relief was finally on the way for many celiac sufferers in the United States, but as is often the case the story was not as simple as it first appeared. Confusion and disjointed dynamics often occurred as the media, medical community and general public were made aware of this disease simultaneously. Medical practitioners in many disciplines were forced to scramble for new information as patients approached them for tests and treatment. Understandably many doctors brushed off their patient's requests to be tested. Indeed many patients who were sure they would turn up positive tests, in fact did not, even patients who already suspected gluten was a problem. Laboratories that rarely ran celiac screens were deluged with sensitive tests that their operators were not experienced enough to run properly or interpret accurately. Much frustrating effort was expended by celiac specialists to educate their professional colleagues. Often they were initially ignored or worse, deprecated, by their peers. Doctors who responded and learned quickly were appreciatively dubbed by some support groups as "heads up doctors". All of our celiac and gluten syndrome specialists have worked very hard and taken a beating to bring this syndrome to our attention.
2004 - A drug for the gluten
syndrome? - Dr. Fasano and a team of scientists formed Alba
Therapeutics to develop a
genetically modified (recombinant) drug
which is
currently in testing
to begin to treat the gluten syndrome. The drug works by manipulating a
chemical they recently discovered and named "Zonulin". Zonulin controls the
opening and closing of "gateways" in the gut wall which allow certain
items to pass across the gut wall into the body. In the presence of
inflammation, high levels of zonulin change may cause these "gateways" to
malfunction and allow molecules such as undigested gluten to slip into
places they are not intended to be and then the immune system reacts.
The drug is currently being testing on real celiac patients, but it is not
ready for market at this time. It is not intended to replace the gluten
free diet but for occasional use in unusual situations. (Feb 2009) 2005 - The continuing carbohydrate story - Elaine Gottschall peacefully passed away September 5, 2005, age 84. Elaine is the courageous mom who went back to college at age 47 at her husband's urging after Dr. Sidney Haas' specific carbohydrate diet healed their 8 year old daughter Judy. Before her death she finally was afforded the recognition she well earned for her help to many many persons suffering from a range of disorders including autism, crohn's disease, ulcerative colitis and many many others. The Specific Carbohydrate Diet is gluten free but goes beyond and focuses instead on the types of sugars and carbohydrates in the diet. The SCD Diet is used extensively in biomedical autism circles. As with most other diets, it clearly helps many but not all patients. Personal tribute Obituary
2006 - New labeling laws aid patients with allergies and intolerances. - new labeling laws went into effect January 2006. They required the 8 top US allergens to be clearly labeled on all food items. This list included wheat, soy, milk, eggs, fish, shellfish, tree nuts and peanuts. This litigation helped gluten intolerant patients partly but not completely since barley, rye and oats were not included in the list. Further amendments are still in progress and the definition of "gluten free" was still undetermined. The general skeptical public was forced to take gluten more seriously when they saw gluten and wheat labeled on their food products.
Dec, 2006 - New York city banned transfats in unpackaged food. A major victory for Mary Enig and peers, who worked to document and raise awareness of transfat dangers since the 1960's. (The Rise and Fall of Crisco)
"Interesterification" quickly replaced transfats, unlabeled. Some researchers have expressed concern that interesterified fats do not contain transfats, but do still contain an artificially changed molecule that the body has never seen. These fats are found in vegetable oils that are processed into a partially hardened, soft spread state, ie no longer in their liquid state. Some researchers recommend that butter, virgin coconut or palm oil, or naturally raised animal fat be used in place of vegetable oils and soft tub fats or margarines. Articles that explain interesterified fats are sometimes noncommittal as to their effects.
Transfats are not required to be labeled if their weight per serving is under .5 gram. Therefore it is easier to check ingredients by looking for hydrogenated or partially hydrogenated vegetable oils. Interesterified fats are still hydrogenated but do not contain transfats. Almost all baked goods contain processed hardened or partially hardened vegetable oils.
2008 - Statistically about 30% of patients diagnosed with villi damage do not improve on the gluten free diet alone, or they may improve at first and then some of their issues return. They usually find they need to severely reduce their intake of gluten free substitutes. They are still mostly junk foods. Some folks remove all grains, or do the Specific Carbohydrate Diet, a Candida, or Body Ecology type diet and often they switch to organic, more raw foods, and a Weston Price based dietary lifestyle. Processed and fast foods gradually are abandoned for fresh farm products and more homemade meals. Toxic cleaners, personal care items, and often plastics, microwaves and wireless devices also are replaced with greener and healthier alternatives. Many patients find that going gluten free is the start of a lifestyle revamp, and once they go gluten free the other changes come easier. Many also find nutritionally oriented professionals to help them treat problems that the gluten damage triggered such as nutrient loss.
A celiac vaccine? Clinical trials were to start in 2008. Update here. Website: www.nexpep.com.au
2009 - The non celiac gluten syndrome hordes are out of the closet. "Self diagnosis" is no longer perceived as wishful thinking by most of the gluten syndrome community. Even the most staunch "celiac" specialists admit this huge group exists, although they still mostly teach that non celiac gluten reactivity is not autoimmune. Other researchers emphatically insist it IS often autoimmune, and clinically many in the gluten syndrome community fit this concept. There is published research on the non celiac gluten syndrome situation but it is not well known in the gluten syndrome community. The following section is devoted to that area of study and the researchers and educators behind it. As the "fog lifts" on this phenomenon, there is not perfect agreement, but it is exciting to watch this drama unfold as our scientists, practitioners and patients work together to put the pieces into the puzzle. 2007 update Return to top
Several labs now offer tests for additional antibodies (beyond gliadin and tTG). They also check more places in the immune system for these antibodies. Current testing shows that many patients have one antibody but not another depending on their situation. Therefore some researchers believe all the known antibodies should be checked in all possible places. Dr. Thomas O'Bryan DC, CCN, DACBN checked all the known antibodies, including wheat, gliadin, gluten, gluteomorphins, and ttG, all IgA, IgG, and IgM, in all his patients (350+ patients) over 3 years, and achieved a 77% positivity rate for some gluten related antibody. Research also indicates that there are known glutenins for which there are no tests at this time.
The more antibodies tested, the more patients test positive for immune response.
The more complete panels of antibodies include:
Gluten itself IgA, IgG, IgM - the whole gluten molecule Gliadin AGA IgA, IgG, IgM - a piece of gluten Gluteomorphins IgA, IgG, IgM - a molecule that forms when gluten breaks down incorrectly. Wheat - IgA, IgG, IgMthe whole kernel - This ensures that anything not discovered in wheat is tested. tTG IgA, IgG, IgM- an enzyme that elevates in some gluten syndrome reactions (the celiac villi process)
The additional places in the immune system include:
IgA - Some celiac tests check gliadin IgA, many don't. IgG - Some celiac tests check gliadin IgG, Many don't. IgM - Very few labs check any IgM antibodies.
At this time, these labs offer at least some of these additional tests in various combinations.
ALCAT - tests reactions of white blood cells to gliadin, gluten, wheat, others. A controversial test.. Elisa/ACT Biotechnologies - observes lymphocyte reaction and checks gluten, gliadin, wheat, etc Immunosciences Labs - panels of ALL known antibodies, currently reorganizing Optimum Health Resource - gliadin, wheat, gluten, and other substances, - IgG or IgA panels
Furthermore, Enterolab offers stool tests which do not test additional antibodies, but this test returns much higher rates of positives than the same tests in blood and claims a higher sensitivity.. This test is based on announced but unpublished research.
See Lab Charts page for current panels.
Dr. Vojdani, an immunologist researcher from Los Angeles, California, has published research showing gluten related damage to many tissues in the body, triggered by cellular mimicry between the gluten related antibodies and innocent "look alike" tissues all over the body. He finds the villi are just one of many possible locations of target damage. Some patients have villi damage, but in most patients the target damage is in some other organ or tissue. Full text here
Neurological tissue is very very susceptible to gluten related damage according to more and more researchers. Furthermore some say that if nerves are silenced by damage there may be little warning until there is organ or function failure. Check out these published quotes:
"The immune response triggered by sensitivity to gluten may find expression in organs other than the gut and the central and peripheral nervous systems are particularly susceptible." - M. Hadjivassiliou, 1997 see reference below - Neuromuscular Disorder as a Presenting Feature of Coeliac Disease
"Neurologic disorders or findings were found in 51.4% of patients with Celiac Disease" - Pediatrics Vol 113 No 6, June 2004 Nathanel Zelnik
"Two female patients presented with cognitive decline that was attributed to Alzheimer's dementia but ameliorated after the initition of gluten free diet. The third patient had peripheral neuropathy that completely resolved after initiation of the gluten free diet." Celiac Disease Diagnosed in the Elderly - J Clin Gastroenterol Vol 42, No. 1, Jan. 2008 Yoav Lurie MD, Dan-Avi Landau, MD, Jorge Pfeffer MD,and Ran Oran, MD Reprints: Yoav Lurie Gastroenterology Institute, Tel Aviv Sourasky Medical Center, Weizmann 6, Tel Aviv 64239, Israel (email dr-lurie@tasme.health.gov.il) Copyright 2008 by Lippincott Williams & Williams
"Patients with neurological disease of unknown etiology were found to have a much higher prevalence of circulating antigliadin antibodies (57%) in their blood than either healthy control subjects (12%) or those with neurological disorders of known etiology (5%)." M. Hadjivassiliou Gluten Sensitivity as a Neurological Illness. See full reference below
"Mean age of ataxial onset was 48 years old" Gluten Ataxia in Perspective - M. Hadjivassiliou, Brain (2003), 126, 685-691) See full reference below
PubMed research - Gluten related neurological damage is now recognized as extensive by a number of researchers. For an overview of published articles, go to www.pubmed.gov and type search term combinations such as "neurologic, or neurological, or brain, or CNS, or MBP, or cerebellar" and "gluten, or celiac, or coeliac".
1. Section of Immunology, Department of Pathology, University of Verona, Italy 2. Section of Internal Medicine, Department of Clinical and Experimental Medicine, University of of Verona, Verona, Italy 3. Section of Histology, Departmant of Experimental Medicine, University of Genova, Genova, Italy 4. Immunology Unit, Institute G. Gaslini, Genova, Italy, 5. Department of Pediatrics, University Hospital of Verona, Verona, Italy Click for abstract and full text
Journal of Neurology Neurosurgery and Psychiatry 2002;72:560-563 M Hadjivassiliou, R A Grunewald and G A B Davies-Jones Department of Neurology, The Royal Hallamshire Hospital, Glossop road, Sheffield, S10 2JF, UK Correspondence to Dr. M Hadjivassiliou, Department of Neurology, The Royal Hallamshire Hospital, Glossop Road, Sheffield, S10 2JF, UK BMJ 1999; 318:1710-1 M Hadjivassiliou, R. A. Grunewald, G A B Davies-Jones Department of Neurology, The Royal Hallamshire Hospital, Glossop road, Sheffield, S10 2JF, UK (m.hadjivassiliou@sheffield.ac.uk
M Hadjivassiliou, A K Chattopadhyay, R. A. Grunewald, G A B Davies-Jones, A J Lobo J Neurol Neurosurg Psychiatry 1997;63:770-775 Department of Neurology, The Royal Hallamshire Hospital, Glossop road, Sheffield, S10 2JF, UK
Department of Neurology, The Royal Hallamshire Hospital, Glossop road, Sheffield, S10 2JF, UK (m.hadjivassiliou@sheffield.ac.uk)
2009 - GMO beet sugar has hit the market.
These few Celiac specialists worked hard to spread the word among their peers and treat a deluge of newly informed patients. Several of them identified celiac disease many years ahead of the 2003 research. These experts are mainly focused on celiac villi damage. Some have moved beyond to accept non celiac gluten syndrome. At this time most believe it is not autoimmune, and still recommend the tTG screener and villi or skin biopsy for dx of celiac disease.
They are all heroes and deserve our deep appreciation and respect.
Dr. Fasano's insistence that indeed celiac disease is here in the United States and his persistance in proving his case paid off for thousands of Americans suffering the consequences of undiagnosed gluten related ills. Dr. Fasano originally moved from Naples, Italy to Baltimore, Maryland in the early 1990's to research children's diarrheal diseases. That research led to discovery of zonulin, a tight junction regulator that influences permeability of various mucosal and tissue barriers including the gut and brain barriers. Building upon this discovery he is now involved in development of a drug (AT 1001) that may be useful in various autoimmune disorders such as celiac disease, rheumatoid arthritis and diabetes. Dr. Fasano recognizes that a large number of the patients he sees react to gluten. Celiac Disease update, Dec 2008, by Dr. Fasano.
Dr. Green is one of the few specialists in the country who treated celiac disease before Dr. Fasano's research project brought the disorder to public attention. He was diagnosing patients in 1981, established and directed the Celiac Disease Center at Columbia University in 2001. Dr. Green's book, "Celiac Disease: a Hidden Epidemic 2006 is a "friendly" guide to the many aspects of this disorder and is recommended reading. Dr. Green acknowledges non celiac gluten sensitivity in his book and in practice.
Dr. Joseph Levy MD - Children's Digestive Health Center - New York Contact here
Dr Levy is Director of the Children's Digestive Health Center at the Children's Hospital of New York-Presbyterian in New York. He is a Professor of Clinical Pediatrics at Columbia University College of Physicians and Surgeons. He is on staff at the Celiac Disease Center at Columbia University.
Dr. Rudert is a gastroenterologist in private practice in Altanta, Georgia. She graduated University of Louisville, University of Louisville School of Medicine, Louisville, KY in 1979 with postgraduate Gastroenterology training at Emory University Hospital. Dr. Rudert is a tireless supporter of the gluten syndrome/celiac cause, and popular speaker at conferences and support groups. She maintains a sympathetic and supportive stance to her non celiac gluten syndrome patients.
nnn Dr. Guandalini, pediatrician, is a former professor to Dr. Alesio Fasano in Italy, and founder and director of the University of Chicago Celiac Disease Program. He is a rock solid supporter of celiac disease and works diligently to gain the ear of his American colleagues. He participated in the prevalence study published in 2003 and in establishment of international diagnostic criteria for celiac disease. He is a respected expert specifically on villi damaged celiac disease and helped hundreds of villi damaged patients. He has published or contributed to over 100 articles.
Dr. Murray was born and schooled in Ireland, and then moved to University of Iowa, and is now at Mayo Clinic. He was one of the few specialists who diagnosed celiac disease in the US in the late 1980's. *"Dr. Murray of the Mayo Clinic recalls that when he was a medical student in Galway, Ireland, in the late 1970s and early 1980s, diagnoses of celiac disease were so common they were "part of the medical wallpaper." After he moved to a job at the University of Iowa in 1988, Dr. Murray once diagnosed a celiac alongside a senior professor. "This will be the last such case you see, since we never see this in America," Dr. Murray remembers the professor saying." Quote from East Florida Celiac Group, Mike Martin He published a review on the Widening Spectrum of Celiac Disease in 1999, and later Dr. Murray expressed further surprise in 2006 at a link found between celiac disease and neurological issues, specifically dementia, observed in a Mayo study in 2006.
Dr. Pietzak, pediatric gasteroenterologist at Children's Hospital, Los Angeles, CA, and Director of Center of Celiac Research West and medical advisor to the Celiac Disease Foundation has produced 2 celiac based resources, The Gluten Free MD 2006, an audio educational CD, and Understanding Celiac Disease and Gluten Intolerance, an educational DVD, 2007, coproduced with Dr. Alesio Fasano and Dr. Peter Green. To hear radio programs of Dr. Pietzak's explanations of celiac disease and demos of the DVD visit her informative website, www.theglutenfreemd.com contains. Dr. Pietzak differentiates celiac disease vs. non celiac gluten intolerance as "autoimmune with possible accompanying nutritional and other secondary effects", and "non autoimmune", respectively. Biography here Radio talk here
Dr. Zone, schooled at University of Notre Dame, NY, and Upstate Medical School, Syracuse, NY, has contributed impressively to the celiac disease cause, and diagnosed and treated patients for over 25 years. He also codeveloped a special immunofluorescence staining process for blood and skin specimens. This aided diagnosis and management of celiac disease. Here are images of specimens so stained. Dr. Zone's specialty in the celiac disease arena is dermatitis herpetiformis. Dr. Zone became head of Dermatology at the University of Utah in 1987and he is a staunch supporter and educator of the celiac community. His curriculum vitae is extensive.
often serious and often autoimmune.
Dr. Michael N. Marsh and late Professor Anne Ferguson, UK
Dr. Michael N. Marsh, UK
- Retired author of
Celiac Disease: Methods and Protocols
printed in 2000 (see
sample pages on Amazon reader) . Dr.
Marsh is respected as a giant in the field of the Gluten Syndrome, called
"coeliac disease" when he practiced. In his day, all research was
focused on villi damage and he designed the Marsh Classification System
for
Villi Damage, which Professor Anne Ferguson, BSc, MB, ChB, PhD (Glas), FRCPG, FRCP, FRCPE, FRCPath - Scotland Anne Ferguson (Anne Collee) a well loved and extremely accomplished gastroenterologist, professor, researcher, and educator in a number of medical fields shared Dr. Michael Marsh's final coeliac stool focused study. The research project came to an unfinished and unvalidated halt when the funding grant was withdrawn. Other researchers were unable to duplicate their work. Professor Ferguson passed away after a short illness in 1998 and Dr. Marsh retired. Their work was later continued by Dr. Ken Fine, see below. Anne Ferguson's biography and obituary reveal Anne's remarkable and compassionate legacy. A research article by Anne is here
Dr. Mario Hadjivassiliou, Sheffield England
Special thanks to annelb of Gluten Free and Beyond Forums for this comment and research list Dr. Hadjivassiliou, a neurologist in the UK, has been a leader in connecting central and peripheral neurological damage to gluten. He contends that gluten directly attacks the nervous system. According to Dr. H, gluten sensitivity, without the damage to the small intestine as seen in celiac disease, is all that is needed for the nervous system to be damaged. Contact here: Dr. M Hadjivassiliou, Dept. of Neurology, The Royal Hallamshire Hospital, Glossop Road, Sheffield, S10 2JF, UK
mSpecial thanks to annelb of Gluten Free and Beyond Forums for the above comment and compilation of this research list
Correspondence: Dr. M Hadjivassiliou, Dept. of Neurology, The Royal Hallamshire Hospital, Glossop Road, Sheffield, S10 2JF, UK
Autoantibodies in gluten ataxia recognize a novel
neuronal transglutaminase. Sept 2008
Dr. James Braly, MD. and Dr. Ron Hoggan ED.D Contact Dr Braly Dr. Braly MD and Dr. Ron Hoggan Ed.D collaborated in 2002 on their courageous book, "Dangerous Grains" which clearly and convincingly discussed non celiac gluten reactivity at a time when it was not acknowledged by celiac "villi focused" authorities. Dr. Braly, MD, is an experienced and personally gluten sensitive allergist.
Ron Hoggan Ed.D. Contact Ron Hoggan
Ron Hoggan Ed.D. holds a PhD in education and is a high school teacher. He
is dx celiac and has written an impressive number of articles on the
gluten syndrome. Check out the
Dangerous Grains website. A long list of
Ron's articles is here. Ron fought an uphill battle to encourage many
confused patients and parents to respect non celiac gluten syndrome and
finally is receiving the respect he richly deserves. Ron recently wrote
"Get
the Iron Edge", which highlights the particular
challenges of gluten syndrome patients to maintain iron levels. His
insightful and very worthwhile DVD "Smarten up" is a compilation of 3
talks on the effect of the gluten syndrome for children and students from
his qualified and compassionate perspective as a personally celiac
affected educator.
"Smarten Up" is an invaluable and highly
recommended resource for parents, grandparents and teachers. (This
website has no financial interest in products or services mentioned here.)
Dr. Kenneth Fine, MD Gastroenterologist Contact Dr. Fine
Dr. Fine, MD, is a respected
gastroenterologist from Dallas, TX. Formerly associated with Baylor
University, he is involved in announced but unpublished stool testing
research and owns an independent lab for internet based, home collection
gluten sensitivity stool tests.
Dr. Fine proposes the following modifications to dx criteria for recommendation of the gluten free diet.
Patients are confused by conflicting opinions of Dr. Fine's ideas and his test. In the absence of published peer reviewed data at this time they wonder who he is and why he has not published his work.
Dr. Fine is well qualified as a gastroenterologist, a fact acknowledged even by is critics. Upon inquiry among those who have known him in his local medical arena and knowledgeable folks in the gluten syndrome field I learned that he appears to have 3 interests; his gastroenterology research, his music, and helping people. He prefers to invest in research than easy living., He loves to play his guitar and sing under the stars in the desert with kids and their families to society life, and is also an accomplished musician. He has struggled with his own gastrointestinal issues for years and is on the gluten free diet.
Dr. Fine has published other research articles in the past. He announced his research 3 years ago in 2006 shortly after a patent was obtained for the test. It is the opinion of some that Dr. Fine has further delayed publishing his work for specific study related reasons.
This work is not peer reviewed, duplicated or validated. Only one parallel study has been performed which claims not to find stool tests of value. Drl. Fine takes issue with the methods used in that study. Other professionals claim to have tried to duplicate Dr. Fine's test without success. However, over the past 5 years, public and in many cases professional confidence has risen very significantly as more and more patient's experiences match his test results. (This website has no financial interest in products or services mentioned here.) Return to top
Dr. Aristo Vojdani, PhD, Immunology, MT Contact here
Dr. Aristo Vojdani is a respected immunologist/researcher from Los Angeles, formerly Beverly Hills. He is well known in the biomedical autism circuit. He owns Immunosciences Laboratories, a specialty lab currently under reorganization. They plan to reopen Spring of 2009 to concentrate on very detailed and progressive gastrointestinal and autoimmune testing panels. Dr. Vojdani has published numerous times on the effects of toxins, gluten and other cross reactive foods and substances on the brain and neurological system and many other body tissues. His lab plans to offer detailed and progressive test panels for the gluten syndrome starting spring, 2009. The test goals include all possible known antibodies for which tests are available and a progressive system of testing until a positive is obtained, which controls cost for the patient. Be sure to visit his website when it is reposted to check out his array of excellent articles.
1. Section of Immunology, Department of Pathology, University of Verona, Italy 2. Section of Internal Medicine, Department of Clinical and Experimental Medicine, University of Verona, Verona, Italy 3. Section of Histology, Departmant of Experimental Medicine, University of Genova, Genova, Italy 4. Immunology Unit, Institute G. Gaslini, Genova, Italy, 5. Department of Pediatrics, University Hospital of Verona, Verona, Italy Click for abstract and full text
Dr. Thomas O'Bryan Contact here
Dr. O'Bryan
is a functional medicine practitioner in Chicago area. His excellent
research reviews on various aspects of the gluten syndrome are incredibly
clear and well presented. Dr. O'Bryan works with Dr. Aristo Vojdani in
research and test development. He has produced detailed testing protocols
that produce impressive rates of positivity that match most patient's
experience. (The secret? He tests as many gluten related antibodies as
possible! Over 4 years he ran a detailed panel of gluten related
antibodies (12-15 tests) on all patients in his practice with a 77%
positivity rate. Many of those patients tested positive for antibodies
other than gliadin and tTG and IgA, IgG, and IgMs were all checked for
each antibody. He also ran cross reactive foods and a panel of antibodies
to tissues known to be particularly susceptible to gluten damage. Dr.
O'Bryan completed an outstanding and highly appreciated speaking circuit in
the USA in 2008 in which he addressed 3000 medical doctors and
practitioners on the wider scope of the gluten syndrome. His planned 2009
circuit focuses on food allergies in general. Often he speaks to patient
support groups the evening before the main presentation to professionals.
If he comes to your area BE SURE to arrange a special event for your group
to hear these incredibly well presented and informative lectures. Watch
for a post of his schedule soon.
Dr. Rodney Ford, MD, MB FRACP, ASM Professor, "Dr. Gluten" New Zealand Contact here
Dr. Ford is an experienced
pediatrician with a specialty in food allergies and particularly the
gluten syndrome. Dr. Ford coined the term, "The Gluten Syndrome".
Coming:
Dr. Scott Lewey - Colorado Dr.Shari Lieberman - Author The Gluten Connection Dr. Steve Wangen - Author Healthier Without Wheat Drs. Richard and Vikki Peterson - Authors The Gluten Effect
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