we wish we'd understood
when we first learned about
gluten and celiac disease.
1) There are researched
points of view with a wider scope than the celiac story.
These concepts were not obvious to us as new inquirers, but some of them fit our situation and
the overall gluten syndrome community like a glove.
2) Some researchers believe gluten most often damages other tissues, organs, nerves or even nerves in the gut, beside the villi, meaning NOT NECESSARILY including the villi. In these cases villi biopsy is negative.
Some researchers, professionals and patients find there are
many serious manifestations of The Gluten Syndrome other than "villi
damaged celiac disease" and IgE "wheat allergy". Damage is believed in many cases to focus in other organs or
systems beside, meaning not necessarily including, intestinal villi, Therefore villi biopsy
may be negative but damage may be to other tissues, organs, nerves,
These researchers believe the mere presence of gluten related antibodies indicate the immune
system has reacted to gluten and the gluten free diet is
recommended. They also say cellular mimicry between the gluten
related antibodies and many innocent body tissues is often the
mechanism of damage. (This means the body tissues "look
like" gluten enough to attract and bind with the gluten related
antibodies which in turns attracts killer cells to that tissue and
instigates autoimmune damage.) See
3) Published literature proposes that many gluten syndrome patients do NOT have elevated tTG (a commonly used screener), AND there are many
significant gluten related antibodies that are not checked in
today's standard tests, including gluten itself. More...
4) Some researchers say other foods may cross react with gluten
Practitioners suspect these other cross reactive foods may keep
gluten antibodies running high even on a strict gluten free diet,
or they may react on their own and produce symptoms similar to the
gluten free diet. Foods believed to cross react
include wheat, barley, rye, corn, soy, milk, eggs, yeast, coffee, sesame
and chocolate, and in some cases, oats. Even some non gluten
grain substitutes may rarely trigger reactions in a few people, including
buckwheat, quinoa and millet. "Leaky gut"
are thought to play a role in the gluten syndrome and multiple food
sensitivities. *Zonulin is a chemical discovered by a medical team headed
by Dr. Alesio Fasano which regulates permeability of the gut wall and also
the blood brain barrier.
5) A gluten challenge for "villi damaged celiac" subset
diagnosis may be futile and risky even if the patient already knows
gluten gives him problems. More...
gluten challenge often does NOT provide the "celiac disease subset" diagnosis that the patient
confidently expects, even if he has previously experienced dramatic
improvement on the gluten free diet.
including severe depression and psychiatric symptoms appear to have
been associated with some gluten challenges. Many patients report gluten
challenges to be "miserable" or "horrible" experiences even though
standard celiac testing/biopsy at the conclusion is negative. Such patients
might have shown up positive in testing if a more sensitive, or
detailed test panel had been used, they may have antibodies
for which no tests have yet been developed, or tissue or function damage in places other
than intestinal villi. If symptoms present, many patients
choose to listen to their own bodies' message and are thankful the
body was able to tell them something is not right, even in the face
of inadequate negative testing.
6) Indiscriminate, repeated gluten
indiscretions may eventually cause serious physical and neurological damage/psychiatric
symptoms and study indicates higher mortality rates. More...
cheating patterns" on the gluten free diet, i.e., consistant occasional consumption of
gluten on an otherwise gluten free diet, (pizza, birthday cake,
croutons), may immediately or eventually trigger stronger physical or neurological/depression/psychiatric
reactions than were experienced before the patient began the gluten free
7. Some researchers and professionals believe the brain and nervous system are particularly susceptible to gluten damage and that nerves may be silenced by this damage. More...
Dr. Rodney Ford
of New Zealand points out
that if the nerves in an organ or system are damaged in some cases
there may be little discomfort or few symptoms until there is
serious dysfunction or organ failure. The very nerves that
give warning are themselves damaged/silenced. But slowly
dysfunctional nerves in an organ, for instance, affect the health
and function of that organ or system. This phenomenon of
silenced nerves may be
partly why many folks who still think they are fine discover they have the
gluten syndrome only after a relative is diagnosed.
Dr. Ford cites a case
in his practice of an encopretic school aged child (the child experienced soiling
accidents long past potty training age). After the gluten free
diet was introduced, this distressing problem resolved. The
nerves in that section of the digestive tract healed and the child
knew when it was time to visit the toilet.
8. Rarely a patient may experience temporary symptoms that resemble
"withdrawal" near the start of a gluten free diet. More...
This reaction is very uncommon, but a
few patients (adults) have experienced depression or crying spells
at the start of the gluten free diet, or shortly into the diet
(often around 14 days to a month).
The reaction has been severe in a few cases. In the case of
children, behavior may significantly worsen for a time. This
reaction is more frequently seen in autism circles. Firsthand
accounts indicate that this appears to resolve eventually and the
patient usually does well once this initial reaction is over.
It is speculated that the "withdrawal"
type symptoms are due to the removal of certain types of gluten
or milk "pieces" that have an drug like "opiod" structure, similar to
opiates. They affect the brain in such a way that their removal
triggers an apparently temporary
reaction that resembles drug
or alcohol withdrawal. The pieces of gluten (or milk) are
gluteomorphins (or sometimes called
gliadorphins) and casomorphins (milk).
Speculation regarding reduced blood
flow when gluten is consumed and increased "normalized" blood flow
when gluten is removed is another phenomenon some professionals
suggest. It is known that in some situations such as
hypothermia or heart events, tissue damage may be inflicted when
previously constricted blood flow returns to normal. At this time there are no researched answers.
This phenomenon is not well known or well studied.
There is one such reaction in which a
senior in frail health unsuccessfully attempted suicide.
The patient continued the diet and once the reaction abated, the
patient improved dramatically compared to his condition before the
diet was implemented.
Another case is on record in which
a number of factors muddy the picture somewhat. A positive
patient removed several foods that are cross reactive with gluten.
months later she also removed gluten. At some point she also
discontinued an antidepressant possibly too quickly. A month
after going gluten free, in the autumn, a crying spell reaction
occurred which also coincided with the seasonal
affective disorder season. Two weeks into the the crying spell
the patient resumed daily consumption of gluten
and attempted to control
the situation with medications. The patient's already fragile
mental and emotional condition appeared to
dramatically worsen after gluten was reintroduced. After a
number of weeks of trials of various medications, she stabilized
somewhat and over several more months gradually improved enough to
able to ease back into her job. However she continues to cycle
periodically and is now diagnosed with bipolar illness.
This website encourages further
research on this rare phenomenon and how to manage it.
Other reactions may occur if diabetic
routines, thyroid medications or other treatments need adjustment once the gluten free
diet is established.
Professional care from practitioners
who understand the gluten syndrome is strongly advised in these
While these reactions are quite rare,
this website is looking for firsthand accounts of significant
adverse reactions to the gluten free diet, both initial reactions
and gluten challenge or serious "cheating " reactions in order to
present the information to the research community. Email
email@example.com or call 630-628-9126.
A collection of these reactions is
found on the
Adverse Reaction page of this site.
Here are links to
several searches of
forum posts ,
The Standard American Processed Gluten Free Diet
often NOT a magic bullet in the long run. More...
The standard gluten free
diet alone is often NOT a magic bullet in the long run
over several years, BUT it often appears to be an excellent,
necessary, and permanent first aid step toward building better health.
This diet style uses a lot of gluten free substitutes that in
themselves are still junk food, and best used sparingly for
According to some researchers, the underlying cause of gluten syndrome usually focuses on
barriers that are not holding together well, such as the gut wall, blood brain barrier, and others. This allows molecular
substances such as undigested gluten to slip into places they should not be and cause trouble
all over the body.
It is crucial to heal these body barriers with unprocessed,
properly raised nutrient dense foods and extra nutrition, and avoid toxins
that contribute to body barrier tissue deterioration and other
deficiency issues. This addresses the deeper causes of
gluten syndrome and possible development of multiple food sensitivities
and their unhappy consequences.
See Dr. Vojdani's
audio talk on "The
Role of Mucosal Immunity in Complex Diseases", also on
Medical Diagrams page.
Also often the immune
system is thought to be in a hypersensitive mode and needs to be
"quieted down" so it does not overreact to normal life exposures.
For more info Dr. Thomas O'Bryan's audio download above is a
helpful resource and his audio
Secrets of Gluten Sensitivity.
Also his latest
audio which is posted on
www.thedr.com along with other vital
More details and references here for "9 Crucial
Points we wish we had understood".
Best Gluten Syndrome
Resources and Updates
These resources are particularly important
for negative celiac testers and persons investigating gluten
reactivity, now aptly named
"The Gluten Syndrome".
These are the resources
a wider perspective of the gluten syndrome beyond "villi
This website has no
financial interest in the products or services featured anywhere on
Cyrex Labs offers detailed
gluten related antibody panels, intestinal permeability panels and
cross reactive foods panels. More information and details
If you have no knowlegeable practitioner to prescribe these tests,
they can be ordered through
www.thedr.com Dr. Thomas
O'Bryan offers these these with prescription, local lab services and
mailing expenses included. Look for links to Dr. Tom's Gluten
World and Gluten Sensitivity testing on the home page.
January, 2010 - Dr
Thomas O'Bryan talk - "Inflammation" with intro by Sueson Vess on
"Cancer and Sugar"
Given for the Wheaton,
IL Gluten Free Support Group. If you are having problems
cutting out sugar Sueson will set you on the "straight and narrow".
Sueson pulled no punches, and Dr. O'Bryan followed up with why. No
and Cancer" mp3
"Sugar and Cancer" wav
Note on sugar
honey, (ie not above about 93
degrees, as opposed to the "raw" standard, 160 degrees), used in
moderation, provides many beneficial and even medicinal properties.
However, some folks with yeast overgrowth limit or avoid even
unheated honey until the overgrowth clears. (Some researchers
theorize that heavy metals may trigger yeast overgrowth.)
September 19, 2009
- Latest O'Bryan
audio with Dr. John Wycoff
June 13, 2009
DC, CCN, DABCN audio
Secrets of Gluten Sensitivity
(Click to download MP3)
110 minute update was given November 21, 2008 to a support group
in Minneapolis, Minnesota. Thanks to Greg Petersen (Nutrition
Dynamics www.nut-dyn.com) for recording
For the best
understanding of this talk, access to the presentation slides is
recommended. Many of the these slides are shown on the
"Unlocking the Mystery of Wheat and Gluten
Sensitivity. This basic DVD is highly recommended
as well worth the $24 price, in addition to the audio downloads above
which is are excellent updates of the DVD.
reviews and updates are required for proper understanding of
the significance of the gluten syndrome. The DVD is also a good
visual foundation for spouses and friends.
(Correction: Kamut is a
member of the wheat family and NOT OK on a gluten free diet.
The saliva test mentioned is not yet available. Note: ANY
negative gluten antibody test is always inconclusive as there are many
gluten related antibodies now in
the process of discovery than there are tests developed at this
website has no financial interest in ANY product or service
mentioned on this site.
- New book, new DVD, and new O'Bryan speaking schedule
The Gluten Effect
by Drs. Richard and Vikki Petersen
HealthNow Medical Center
practitioners perceive the Gluten Syndrome in a wider sense, far
beyond the celiac perspective. They meet the gluten syndrome
community realistically, and explain in simple terms the sinister
interplay of the gluten effect on
astonishing number of body tissues and systems.
Petersens clarify important nutritional issues, and help
the reader transition into the gluten free diet. Their
teaching is personalized with real life stories of HealthNow patient
recoveries from a myriad of gluten related maladies. This book
uncovers in detail many unsuspected, and ominous aspects of a food
we took for granted as the "staff of life" and is one of the most
progressive gluten syndrome resources available today. The
Gluten Effect will illuminate a path to better health for countless
patients who grapple with chronic and perplexing health challenges.
Order here www.thegluteneffect.com
DVD available - 2008
Higher Truth of Health Conference by Dr. Ken Fine, Enterolab.
This is the April 2008
Taos, New Mexico conference. Speakers include latest research
from Dr. Ken Fine, Dr. Rodney Ford, Dr. Ron Hoggan, and many others.
Order by phone, 972-686-6869
Dr. O'Bryan speaking schedules for professionals and patients- 2009
Nutrigenomic Therapies for Autoimmune Disease AND OTHER TOPICS
This day seminar covers
food allergies, sensitivities, genetics & autoimmunity.
miss it! Patients get your practitioner to attend!
Patients - Dr. O'Bryan
often speaks to local support groups the evening before his lecture
to professionals. Be sure to engage him for your local group. Topic for this year:
Why Don't I Feel Better on a Gluten Free Diet?
January, 2009 -
New book and new
New Book! -
A New Understanding of
Non Celiac Gluten
Dr. Stephen Wangen,
The Gluten-Free Doctor,
also author of
Bowel Syndrome Solution
This heavily referenced
handbook is a welcome support for patients suffering the many silent
and subtle or overt and often debilitating effects of the gluten
syndrome. Dr. Wangen is one of very few courageous authors who
recognize and present the gluten syndrome in it's wider referenced
context, beyond the celiac subset. Additionally he offers treatment
suggestions for complications beyond the gluten free diet, and
includes helpful food and vendor lists, disease lists, and other
informational resources. Healthier Without Wheat is a gift to the
gluten syndrome community which will positively redirect many
confused and suffering non celiac gluten syndrome patients back to
the help they seek in the face of false negative tests.
New Audio - Dr. Thomas O'Bryan, DC, CCN DACBN,
Click to download
"Why Don't I feel Better
on a Gluten Free diet?"*
Approx: 90 min - includes Sueson Vess intro
January, 2009, Wheaton, IL
Patients with the gluten syndrome may have years of malnutrition and
damage to address. The disease process may have taken on a "life of
it's own" beyond treatment with the gluten free diet only. Dr. Tom
tackles these issues and practical steps toward rebuilding health.
30% of biopsy diagnosed celiacs need more than the the gluten free
diet before they improve.
November, 2008 -
New saliva home screener
- 96% sensitive for 4 antibodies - $125
This test is temporarily unavailable! Coming back soon.
This saliva test checks
Deamidated Gliadin (AGA) - IgA, IgM
tTG - IgA, IgM
Includes script from Dr. O'Bryan
96% sensitivity means that this
inexpensive test will pick up 96 out of 100 patients who have antigliadin or tTG antibodies. NOTE: Some patients may have other gluten related antibodies such as
gluteomorphins or other glutenins, but NOT gliadin or tTG.
Therefore as with all other antibody tests, a positive is
definitive, a negative is necessarily inconclusive for the gluten
This test was developed by Dr.
Aristo Vojdani, Immunosciences Laboratories, CA (A
Patients - contact Dr. Thomas
(test includes script)
page or bottom of
page for contact instructions.
This website has no financial
interest in products or services mentioned here.
- Fall seminar schedule for healthcare practitioners,
Unlocking the Secrets of Gluten Sensitivity
by Dr. Thomas
8 hour day seminar for healthcare practitioners
November 1, 2008 Seattle,
November 2, 2008
Long Beach, California
November 8, 2008
New York, NY
November 9, 2008
November 16, 2008
November 22, 2008
December 6, 2008
Hide: 8 hour day seminar for healthcare practitioners
2 hour seminar for patients
(free 110 minute audio
reviews and updates are required for perspective of the
significance of the gluten syndrome. This audio is featured above
under June 13 also.
(Correction: kamut is a
member of the wheat family and NOT OK on a gluten free diet.
Saliva test mentioned is not yet available. Note: ANY
negative gluten antibody test is inconclusive as there are many
gluten related antibodies now in
the process of discovery than there are tests developed at this
Dr. Thomas O'Bryan
DON'T MISS THIS - IT WILL CHANGE YOUR
Sponsored by Metagenics, this
vital and popular day seminar for healthcare practitioners is a
startling gluten syndrome research review. It contains
incredible, vital and little known research and information and will put you on the
cutting edge. This information fits the patient community like a
glove. Both of these seminars are worth the drive for both patients and
JUNE, 2008 - New audio
presentation and research articles by Dr. Aristo Vojdani,
Los Angeles, CA
The Role of Mucosal Immunity in Complex
Presented at the Pan American Allergy
Woodlands, Texas, March, 2008
Dr. Vojdani discusses the role of
mucosal barriers in The Gluten Syndrome and related food
reactivities. He also explains the consequences of cooking and
processing on these foods and our reactions to them.
New Research Articles
The Immunology of
Immediate and Delayed Hypersensitivity to Gluten - Aristo Vojdani,
PH.D, M.T., Thomas O'Bryan, D.C., C.C.N., DACBN.
European Journal of Inflammation,
Full text here
The Immunology of
Gluten Sensitivity Beyond the Intestinal Tract - Aristo Vojdani,
PH.D, M.T., Thomas O'Bryan, D.C., C.C.N., DACBN
Full text here
JANUARY, 2008 -
Health Institute Conference, Taos, New Mexico, April 3-6, 2008
Kenneth Fine, owner of Enterolab, Dallas, Texas, and other speakers
including Dr. Ron Hoggan, Educator, and Dr. Rodney Ford, Australia,
bring their collective wisdom and important, highly relevant
research reports to this informative and entertaining event.
Don't miss it!
A Health Conference
to Educate, Entertain, and Enlighten You
NEW DVD! Relevant, worthwhile!
Smarten Up! by Ron Hoggan, ED D
Dangerous Grains by Dr. James Braly, MD
and Ron Hoggan, Ed D
is a 3 lecture compilation presented to teachers at
educational conferences in Canada. Ron explains the neurology of
the gluten syndrome and it's impact on children and adults. The
referenced information is very helpful and in tune with
research by Dr. Mario Hadjivassiliou and Dr. Aristo Vojdani
Dr. James Braly, MD and Ron Hoggan
also wrote Dangerous Grains, the book that pioneered the concept that
gluten affects far more than the gut, most particularly the brain and
nervous system. Ron Hoggan is an educator and has the gluten
Grains and Smarten Up are available from
Book - The Gluten
Connection by Shari Lieberman, PhD., CNS, FACN
The Gluten Connection
is a forward thinking treatment of gluten reactivity and
brings the wider scope of "the gluten connection" into sharper
focus. Shari addresses the non celiac gluten syndrome
phenomenon head on and her treatment of the
issues fits the gluten reactive community. This referenced
book lays out the basics of "the gluten connection", many related
diseases including neurological disorders, pets and gluten, and the
business of adjusting to a new lifestyle, going gluten free. A
generous section of recipes are included to set the newbie on a
delicious path to better health.
This perspective of
the gluten syndrome meshes well with information presented by Dr. Aristo Vojdani, Dr. Thomas O'Bryan, Dr. Ken Fine, Ron Hoggan
and Mario Hadjivassiliou.
www.glutenfreemall.com and www.amazon.com
Animations of tight junctions and the role of
zonulin in intestinal wall cells.
This process is sometimes
referred to as "leaky gut" and is thought to be involved in a number of
adverse health conditions including allergies and intolerances.
These animations describe the process shown in the
Medical Diagrams mentioned below. Special
thanks to Alba Therapeutics
for these animations.
Diagrams with audio presentation
"Dietary Proteins and
Peptides from Gastrointestinal to Neuroautoimmune Disorders"
Presented March , 2007, Pan American Allergy Society
Vojdani Ph.D., M.T.- Immunosciences Laboratories,
Beverly Hills, CA
Dr. Vojdani explains his
diagrams of celiac disease, gluten intolerance and gluten sensitivity and
compares them to the normal healthy gut. He also discusses his
highly detailed Celiac Neuroautoimmune Test panel, (available
Neuroimmunology Labs, WI), which includes the
additional antibodies discussed below in the next link. This is the
same panel mentioned in the
DVD "Unlocking the Mystery of Wheat and Gluten Intolerance".
These diagrams and audio presentation may be downloaded for use at Dr.
visits and other educational purposes.
antibody tests &
tests beyond the villi biopsy. These include
gluteomorphins, wheat (the whole kernel),
tests for all gluten related antibodies,
plus cross reactive food antibody tests, and target organ damage
More antibody tests and
other tests for gluten reactivity
Some researchers identify
additional gluten reactivity antibodies*
and related markers not
included in most standard celiac blood tests. This may explain why some
patients receive negative standard tests that they question. This highly
detailed test panel is available from Neuroimmunology Labs,
Wisconsin. It is featured in the "lab charts" list on
Medical Diagrams pages of this
These additional tests are
blood tests. The antibodies and markers are noted in published
Additional gluten reactivity antibodies and other markers
Stool antibody & general intestinal function
gluten reactivity genes
More genes for
announced prior to publishing studies that they identify
additional HLA DQ genes
for non celiac gluten sensitivity
than the usual HLA DQ 2 and 8
These HLA 1 and 3 genes and their subsets are also mentioned in published
More genes for gluten reactivity
Details and references? See "4
Crucial Points Explanation and References" and the
page, both also found on the next page.
Crucial current gluten reactivity research overviews
Intestinal Health and Beyond Conference
Fine, MD -
March 2006 Enterolab stool testing research
announcement with additional speakers and features.
A long awaited perspective sought by the gluten sensitive community. Associated tests are
without Dr. script.
Unlocking the Mystery of Wheat and Gluten
Dr. Thomas O'Bryan, DC, CCN, DABCN,
Naperville, Il (Chicago area)
professional chef - June 17, 2006 seminar.
This heavily referenced, easy to follow
overview is crucial to an understanding of
the scope and
severity of gluten sensitivity.
DVD available at:
website has no financial interest in products or services mentioned on