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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 
(references in progress.)


Digestive and related medical problems are mentioned in very ancient documents such as the book of Exodus and throughout the Holy Scriptures. Secular medical literature alludes to descriptions that resemble gluten or possibly food intolerance conditions in writings from 100 AD, 300 AD, and other medical writings particularly from the 18th century until present. The term “coeliac affliction” meaning “abdominal” was the general term applied to these conditions. (References in progress.)

• After the invention of stronger microscopes, Louis Pasteur, a French government scientist, publicized the new field of microbiology and his development of immunizations or “biologicals” starting around 1850-1900. Another well respected and very capable researcher, Antonie Bechamp, a peer of Pasteur, disagreed with many of Pasteur’s theories. He and others predicted that these theories would send the medical sciences on a wrong turn. Nevertheless, medicine in general turned to the study of bacteriology and the use of vaccinations to find answers for many illnesses. Pasteur’s ideas gained sway and has greatly influenced the direction of medical research including the field of immunology since his time. This is interesting information as at least the celiac subset of gluten intolerance is believed to be an autoimmune reaction. Now, research still in progress is calling in question some of the conclusions and practices these tenets regarding immunology have produced.


• Professional practicing between 1900 and 1930 observed such a sharp decline in public health that some of them set out to find answers to the dilemma. Many of them and also many missionaries and explorers were conversely impressed by the contrast in health between peoples who were subsisting on centuries old dietary practices dictated by their local food supplies, and the health of modern societies consuming the “displacing foods of modern commerce”, mainly processed whilte flours and sugars, canned milk and other foods, and the new inexpensive hydrogenated vegetable oils such as “Crisco” type products. One careful researcher, a Cleveland based dentist, Dr. Weston A. Price, spent nearly 10 years traveling to many isolated cultures to observe these peoples, their dietary practices and food preparation methods, and their overall health. He lined up villages, counted cavities, made notes on general health, and took saliva samples and samples of their foods back to his laboratory. He found 11 consistent major basic diet component variations between these isolated peoples around the world and the “modernized” world. He also found excellent general health and fine, straight teeth set in wide faces with dental arches that had plenty of room for wisdom teeth, and very low incidences of cavities. He also observed a heartbreaking decline in overall health, susceptibility to illness, and “dental deformities” meaning narrowed dental arches, other skeletal degradations, and many other degenerational health issues once these peoples came in contact with civilization and adopted modern foods. Other researchers of his era performing parallel research had similar findings.

• Much research was performed between 1900 and 1950 on a rather loosely defined set of symptoms called “celiac disease”, as many professionals became alarmed by a noticeable increase in digestive disorders and other degenerative health problems in the general public during this time period. Some of those researchers focused on undigested starches and sugars in grains, starchy vegetables and other complex carbohydrates. Later, researchers turned their attention from these sugars to focus more narrowly on only the gluten in certain grains as the source of this constellation of symptoms. Diagnostic criteria was established in the 1950’s, and at that time a few patients with a correspondingly more narrow presentation of symptoms began to be identified as “gluten intolerant or celiac”. The prevalence of this particular presentation was considered to be extremely rare in the United States. Medical students received minimal training (20 minutes) regarding this disorder, and were told they would probably never see a case in their practice. Therefore US doctors rarely ever even thought of it when diagnosing their patients.

European doctors researched celiac disease much more thoroughly from the 1970’s and diagnosis rates climbed accordingly. While an American patient waited on the average for 11 years for a celiac diagnosis, eventually a European patient was often identified in only a few weeks.

In the early 1990’s a young specialist from Naples, Italy, Dr. Alesio Fasano, joined the University of Maryland research team and as a matter of course ran a check in the University of Maryland hospital computer for the number of celiacs diagnosed in the past 10 years. To his astonishment, the search returned one diagnosis. His reaction, “Where are the American Celiacs?” prompted a 5 year study involving over 13,000 patients across 32 states, seeking to establish prevalence rates of celiac disease in the United States. At the end of the study, Dr. Fasano was right. New figures showed that 1 in 133 Americans sampled from the healthy population, and 1 in 56 in the symptomatic population had celiac disease, and they were 97% undiagnosed! The study was published in the Archives of Internal Medicine, February, 2003. Other studies have since been conducted that validate these figures.

This new information has brought relief to many celiac sufferers in the United States, and also some confusion and disjointed dynamics as the media, medical community and general public is made aware of this disease at the same time. Much more research is now being conducted making it difficult for professionals to keep abreast of the newest developments on a confusing, complicated disease they barely knew existed a couple of years ago.

Meanwhile, to complicate matters, as the word spreads among celiac patients, many symptomatic family members and friends realize they also fit the profile of celiac disease very closely. However many of them test negatively for the antibodies or villi damage required by diagnostic criterion. Some of them try the diet and may discover that indeed they do improve on the gluten free diet. Others, confused by their negative tests, and give up without trying investigating the diet. Still others who knew already that they can’t eat gluten may intentionally go back on gluten for a period of weeks or months in order to be tested so they can finally have their “magic diagnosis”, confirming their need for this “funny diet”. Unfortunately, these patients may find the “gluten challenge” very very miserable and some may actually be damaged by it, as their bodies are now much more sensitized to its effects. Unfortunately , many of these patients who have already proved by positive diet response that they should avoid gluten, do not receive a positive diagnosis either, despite their obvious misery during and after their gluten challenge.

It appears anecdotally that celiac disease as defined by positive blood tests and positive biopsy is in fact only a relatively small subset of gluten intolerance. Many other seemingly truly gluten intolerant people appear to not be in the celiac subset.

The negative testing but seemingly gluten sensitive patients comprise a large segment of the gluten intolerant community. Unfortunately, research has never been done on this group of patients, and at present, none is in process. All research on gluten intolerance has been performed on biopsy diagnosed celiacs. Many doctors recognize that their negative testing patients have previously improved on a gluten free diet, but they still hesitate to recommend a strict gluten free diet when they have no proven research to back up their diagnosis. This leaves most gluten intolerant patients in a medical “No Man’s Land”, forced to make their own decisions as best they can determine.

 

September 2007 update

 

Several labs now offer tests for additional antibodies believed to be involved in the gluten reactivity process.  They also check more places in the immune system for these antibodies.  Apparently some patients may have one antibody but not others, so some researchers believe all the known antibodies should be checked in all possible places.

 

The additional antibodies include:

 

Gluteomorphins - (antibodies to the gluten molecule, not just gliadin, a piece inside wheat gluten).  

Wheat - the whole kernel  This ensures that anything not yet discovered in wheat is also tested.

        

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 antibodies in the IgM system. 

 

At this time, there are four labs that offer at least some of these additional tests in various combinations. 

 

ALCAT Laboratories - This lab does not check antibodies.  It tests the reaction of white blood cells to   

                                the substance in question, gluten and wheat are included in their options.

Neuroimmunology Labs - (based on study performed at Immunosciences Laboratories, a research lab)

Optimum Health Resources - Offers home collection without prescription

 

Enterolab offers stool tests which do not test additional antibodies, but this test often appears to be more sensitive than blood tests.  This test is based on announced but unpublished research.

 

See Lab Charts page for panels offered.

 

 

 

 

 

 

 

Disclaimer                         Text Ó2006 - Gluten Challenge