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I am a patient, not
a medical expert, but share with others information
that I have personally found helpful.
Always consult with well informed healthcare professionals for medical
advice regarding your situation. Always
verify the gluten free status of products you consume
as ingredients change.
Be
aware
that knowledge in these areas is rapidly changing and some information
contained on this website may become obsolete.
Please continue to stay in touch with well informed healthcare
professionals and remain abreast of current research in order to make
well informed decisions regarding your own health care.
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Explanations and references
for "9 Crucial Points" we wish we had understood" on the Home Page.
This page is not updated.
Coming soon
1) There are several medical viewpoints of understanding of gluten grain
reactivity versus celiac disease. These important differences were not obvious to us as new inquirers, but understanding them is vital.
1) There are several
medical viewpoints
of understanding of
gluten grain reactivity versus celiac disease. These important differences
were not obvious to us as new inquirers, but understanding them is vital.
These
differences have arisen mainly from:
a. Communication issues as the entire US medical profession,
media and public are informed or reeducated regarding gluten grain
reactivity
and celiac disease at the same time.
.Inadequate
testing methods
b.
Medical research processes that are unfinished, still in
the validation process, or that have not been performed at all.
c.
Varying opinions
including inadequate diagnosis criteria and the possibility that different processes involving gluten grains may be taking
place for different patients.
d.
New developments in the
patient community as
the word spreads about celiac disease. Many patients have "come out of
the woodwork" whose symptoms, history, genes and even dramatic response to
the gluten free diet resemble celiac disease. However they test
negatively according to standard validated diagnostic criteria.
Reasons vary with each patient. The following is a list of
possible explanations.
.4. There
may be other subsets of gluten intolerance11-14 beside celiac disease.top
1. Test methods may
be inaccurate/inadequate6,7.
Laboratory
pathologists must be experienced and practitioners well informed.
Incorrect tests may be
ordered or operator handling or interpretation of tests may be
inadequate.
Inadequate celiac biopsy techniques - too few samples
may be obtained or damage may be further down the intestinal tract than
the site of biopsy.
Laboratories' and
professional's blood panels differ and prevalence of antibodies found upon
testing varies greatly depending on the detail of the panel and medium
tested.
The following 2 labs both find a high prevalence of specimens to be
positive for antibodies to gluten grains.
Immunosciences Laboratories
offers a highly detailed Celiac/Neuroimmune panel that includes
IgM and gluteomorphin testing, and several other
variations.
Enterolab announced research
March 2006 and offers stool
testing
for early antibody markers in the gut. (See
Gluten Sensitivity Primer, page 11 for lab information.)
2. Patients may have have
something
else, or something else in addition including other food intolerances,
toxic exposures, or infections that produce similar symptoms and
cross reactions (cellular mimicry) . Patients may download
the following full text research articles and bring them
to
well informed professionals to
investigate these cross reactions and/or other conditions.
**
Cross Reactions
with foods , toxins, infections, and other
tissues?
1.
Immune response to dietary proteins, gliadin and
cerebellar peptides in children with autism.
Nutr Neurosci.
2004 Jun;7(3):151-61.Vojdani
A,
O'Bryan T,
Green JA,
Mccandless J,
Woeller KN,
Vojdani E,
Nourian AA,
Cooper EL.
Section of Neuroimmunology, Immunosciences Lab., Inc., 8693
Wilshire Blvd., Ste. 200, Beverly Hills, California 90211, USA. drari@msn.com
Download
Full Text here
2.
Infections, toxic chemicals and dietary peptides
binding to lymphocyte receptors and tissue enzymes are major instigators
of autoimmunity in autism.
Int
J Immunopathol Pharmacol. 2003
Sep-Dec;16(3):189-99
Vojdani A,
Pangborn JB,
Vojdani E,
Cooper EL
Lab. Comparative Immunology, Dept. Neurobiology,
UCLA Medical Center, Los Angeles, CA, USA.
DrAri@msn.com
Download
Full
Text here
3. In Celiac Disease, A Subst of Autoantibodies against Transglutaminase Binds
Toll-Like Receptor 4 and Induces Activation of Monocytes Published
Sept 19, 2006
Giovanna Zonomi1, Niccardo Navone2, Claudio
Lunardi2, Giuseppe Tidente1, Carerina Bason2,
Simona Sivori3, Buggero Beri2 Marzia Dolcino4,
Enrico Valletta5, Roberto Corrocher2, Antonio Puccetti3,4
Download abstract here
Download Full Text here
1. Section of Immunology, Department of Pathology, Universtiy of Verona,
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
4.
Immunological cross reactivity between Candida
albicans and human tissue. J
Clin Lab Immunol.
1996;48(1):1-15.
Vojdani A,
Rahimian P,
Kalhor H,
Mordechai E.,
Immunsciences Lab Inc., Beverley Hills, CA
90211, USA
Download Full
text here
3.
Other yet unidentified parts,
not the gluten,
of these same grains wheat, barley, rye and oats may be
the culprit(s) in some cases. This is a guess on the part of some
professionals including alternative practitioners who find that some
patients test as reactive to gluten grains but not to gluten in
alternative medicine tests such as kinesiology. i
4.
There may be other subsets of gluten reactivity11-14
beside celiac disease.
5.
In some cases,
damage may be to areas or
body functions other than the intestinal villi11.
6.
Farming or
grain preparation methods may be inadequate
for some people's digestion.
7.
Other grains may also be involved. Anecdotally, it appears that many
people have problems with
corn and
high fructose corn syrup and
soy.
8. Some
patients, (not all), with various intestinal challenges respond well to
the
Specific Carbohydrate Diet, a diet that
focuses removal of the complex sugars and starches in food. This
includes all table sugars, starchy vegetables such as carrots or potatoes,
and all grains, at least until healing has occurred.
Caution:
if a patient is gluten reactive and also unable to process these complex
sugars, their gluten reactivity should be treated with diet for life
according to almost all gluten reactivity specialists.
9.
Yeast
overgrowth in the digestive tract, (Candidiasis or other yeast
and fungal infections) may be present
with or without gluten grain reactivity. Some researchers believe
these infections cross react with gluten grain and other antibodies.
Download Full Text here
10.
Fats and/or
enzymes needed for
digestion may be missing. There is a growing concern that
the fats
in this country are out of balance. Some patients
choose to eliminate all transfats and improperly processed grains and
seed oils and return
to use of butter
and the
fats of naturally pastured animals,
their organ meats, eggs from pastured poultry, uncontaminated fish and
cod liver oil, and
unprocessed coconut and palm oils
11.
There may be many other unknown factors not listed here. Negative
celiac tested patients who respond to the gluten free diet and so closely
resemble celiac patients comprise a very large but little studied group.
These resources address
varying medical viewpoints of
Gluten Grain Reactivities.
This chart is
patient compiled and reviewed by experienced members of the Gluten
Intolerance Support community. Be sure to check both sides. This
chart is offered in 2 type size versions for both LEGAL and LETTER size
printing.
This 32 page
reviewed primer is mainly large print, and complete with resources and
references. It is patient compiled and reviewed by experienced
members of the gluten reactive support community.
Hide:
1) There are several medical viewpoints of understanding of gluten grain
reactivities versus celiac disease. These important differences were not obvious to us as new inquirers, but understanding them is vital.
2) Some professionals and many patients believe there may be other subsets or types of gluten grain
reactivity besides celiac disease (this also includes wheat allergy)
defined by today's standard tests.
2) Some professionals and many patients believe there may be other
subsets or types of
gluten grain reactivity besides celiac disease (this also includes wheat
allergy) defined by today's standard tests.
Some professionals, particularly local practitioners, a few
specialists, and many patients have concluded from anecdotal evidence that celiac
disease as currently defined by positive blood antibodies and positive
villi biopsy, is an autoimmune SUBSET of gluten grain reactivity. This
concern is also addressed in the explanation immediately above.
3) Other health conditions may appear confusingly similar to gluten grain
reactivities. Gluten and other food intolerances may be only part
of the picture.
Research shows that stress, infections and toxins (dietary, environmental,
drugs, etc) trigger food intolerances .
3)
Other health conditions may appear confusingly similar to gluten
grain reactivities.
See
www.celiac.com >Site Index > Celiac
Disease Research: Associated Diseases and Disorders > Lists of Diseases
and Disorders Associated with Celiac Disease > A List of Diseases/Disorders Whose Symptoms
Resemble Celiac Disease
A possible relationship or not between many similar conditions and
gluten grain or related food reactivities is unclear. More research is
needed. Consult knowledgeable professional practitioners to
rule out unrelated conditions. Other food reactivities may have similar
symptoms and cross reactions with gluten grains.
There are general
guides or
matrixes (see symptoms matrix link at
page bottom) available that may help pinpoint some food
reactivities
such as
yeast overgrowth (candidiasis),
soy, milk (particularly pasteurized
processed milk), gluten, high fructose corn syrup, etc.
Hide:
3) Other health conditions may appear confusingly similar to gluten grain
reactivities.
.
More 2 Other subsets
.Psychiatric
consequences top
4) A "gluten challenge" often may not provide the celiac diagnosis that the patient very confidently expects,
even if he has previously experienced dramatic improvement on the gluten
free diet. Some patients have experienced serious side effects from gluten challenges.
New developments
NEW!
May, 2007
Medical Diagrams with audio presentation
"Dietary
Proteins and Peptides from Gastrointestinal to Neuroautoimmune Disorders"
Presented March , 2007,
Pan American Allergy Society
Dr. Aristo
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, 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.
Posted June, 2006
Some researchers identify more antibodies and more genes than standard conservative test panels currently include.
Some researchers identify
more antibodies and more genes than standard conservative test panels
currently include.
Immunosciences Laboratories now
tests
additional gluten reactivity related antibodies beside AGA (antigliadin),
tTG (tissue transglutaminase) and EMA (antiendomesial) antibodies.
This lab now tests for "gluteomorphin" antibodies, and
several others. Some patients produce several types of antibodies and others
only one. Therefore a gluten reactive patient may
receive a negative AGA, EMA or tTG test and still be positive for "gluteomorphin" antibodies.
This panel also checks more places in the immune system for each
antibody (IgA, IgG, IgM) See Immunosciences Laboratories panel on
the "testing
page" in the alphabetical lab chart list.
A recent
Enterolab announcement
and earlier published literature
identify additional gluten reactive genes beside HLA DQ 2 and 8.
These genes may predispose for damage in areas other than intestinal
villi, and include many subsets of HLA DQ 1 and 3, and possibly others.
Some laboratories report
which HLA DQ alleles (genes) are possessed by the patient rather than only
the presence or absence of only HLA DQ 2 and 8.
See the "testing" link on the
intro page for details.
References
Gluteomorphin Antibodies
Immune response to dietary proteins, gliadin and
cerebellar peptides in children with autism.
Nutr Neurosci.
2004 Jun;7(3):151- 61.Vojdani
A,
O'Bryan T,
Green JA,
Mccandless J,
Woeller KN,
Vojdani E,
Nourian AA,
Cooper EL.
Section of Neuroimmunology, Immunosciences Lab., Inc., 8693
Wilshire Blvd., Ste. 200, Beverly Hills, California 90211, USA.
drari@msn.com
Genes
Brain. 2003 Sep;126(Pt 9):E4; 685-691
Gluten ataxia in perspective: epidemiology, genetic susceptibility and
clinical characteristics.
Hadjivassiliou M, Grunewald R, Sharrack B, Sanders D, Lobo A, Williamson
C, Woodroofe N, Wood N, Davies-Jones A. Department of Neurology, The
Royal Hallamshire Hospital, Sheffield, UK.
m.hadjivassiliou@sheffield.ac.uk
Am J Gastroenterol
2000;95:1974-1982.
High prevalence of celiac sprue-like HLA-DQ genes and enteropathy in
patients with the microscopic colitis syndrome.
Fine KD, Do K, Schulte K, Ogunji F, Guerra R, Osowski L, McCormack J.
Intestinal Health Institute, Dallas, Texas, USA.
I nt Immunol. 2000
Aug;12(8):1157-66
Structure of celiac disease-associated HLA-DQ8 and non-associated HLA-DQ9
alleles in complex with two disease-specific epitopes. Moustakas AK,
van de Wal Y, Routsias J, Kooy YM, van Veelen P, Drijfhout JW,
Koning F, Papadopoulos GK. Laboratory of Biochemistry and Biophysics,
Faculty of Agricultural Technology, Technological Educational Institute of
Epirus, 47100 Arta,
Greece.
Here are links to
announced, but unpublished research by Dr. Ken Fine, Intestinal Health
Institute, Dallas, Texas
Close: Some researchers identify more antibodies and more genes than standard conservative test panels currently include.
**********
.Back
to Inadequate Testin
References
6. Seronegative celiac
disease: increased prevalence with lesser degrees of villous atrophy.
Dig Dis Sci. 2004 Apr;49(4):546-50 Abrams JA, Diamond B, Rotterdam H,
Green PH. Department of Medicine, Columbia University College of
Physicians and Surgeons, New York, New York, USA
http://www.cdrc.org.uk/common/cdrc/assets/pdf/The_CF_Issue_15_Final171104
115157.pdf (scroll down)
7. Antibody to Tissue Transglutaminase May Fall Short for Accurate
Triage of Celiac Disease Peggy Peck Medscape Medical News 2004. © 2004
Medscape ACG 69th Annual Scientific Meeting: Abstract 4. Presented Nov. 1,
2004. Reviewed by Gary D. Vogin, MD
Back to
Inadequate Testing .References
30. Research -
Mortality in patients with celiac disease and their relatives: a cohort
study. Giovanni Corrao et al, The Lancet, Vol 358 p. 356
August 4, 2001
.30
Mortality research
Return to discussion of cheating and mortality rates
.11-14
reference
11.
www.enterolab.com
including Early Diagnosis,
Before the Villi are Gone,
Transcript of a talk
given by Kenneth Fine, M.D. to the Greater Louisville Celiac Sprue Support
Group, June 2003. FAQ’s, Result Interpretation,
Curriculum Vitae
12.
Gluten Sensitivity as a Neurological Illness; From Gut to Brain
Journal of Neurology Neurosurgery and Psychiatry 2002;72:560-563
M
Hadjivassiliou,
A Grünewald 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;
13.
Dangerous Grains James Braly, MD, and Ron Hoggan, MA
Introduction page 5. Also one day challenge pages 72-74.
14. Gluten
Sensitivity a Many Headed Hydra
M Hadjivassiliou, R A Grünewald and G A
B Davies-Jones
BMJ 1999; 318; 17 112. Gluten
Sensitivity as a Neurological Illness; From Gut to Brain Journal of
Neurology Neurosurgery and Psychiatry 2002;72:560-563
M Hadjivassiliou, R
0-1711
Marsh's "modern" definition of gluten sensitivity is
to be recommended: "a state of heightened immunological responsiveness
to ingested gluten in genetically susceptible individuals."10
Such responsiveness may find expression in organs other than the
gut. Gastroenterologists, dermatologists, neurologists, and other
physicians need to be aware of these developments if the diagnosis
and treatment of the diverse manifestations of gluten sensitivity
are advanced. The aetiology of such diverse manifestations
presents the next challenge.
(10) Marsh MN.
The natural history of gluten sensitivity: defining, refining and
re-defining. Q J Med 1995; 85: 9-13.)
.References
for 11-14Back
to
"There
may be other subsets of gluten intolerance
3. Prevalence
of Celiac Disease in At-Risk and Not-at-Risk Groups in the United States
Archives of Internal Medicine, Feb, 2003
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&li
st_uids=12578508&dopt=Citation
Alessio Fasano, MD; Irene
Berti, MD; Tania Gerarduzzi, MD; Tarcisio Not, MD; Richard B. Colletti,
MD; Sandro Drago, MS; Yoram Elitsur, MD; Peter H. R. Green, MD; Stefano
Guandalini, MD; Ivor D. Hill, MD; Michelle Pietzak, MD; Alessandro
Ventura, MD; Mary Thorpe, MS; Debbie Kryszak, BS; Fabiola Fornaroli, MD;
Steven S. Wasserman, PhD, Joseph A. Murray, MD, Karoly Horvath, MD, PhD
.Specialists'
comments on gluten challenges bottom
Back to top
Celiac Specialist comments on gluten
challenges
Note: These doctors' comments are all over 2 years old. We
invite professionals from various medical viewpoints to comment on
their current opinions of gluten challenges for celiac disease/gluten
grain intolerance diagnosis
purposes. As more patients are tested, new information may surface.
1. Several comments by
Dr. Cynthia Rudert, Atlanta, GA on the
www.clanthompson.com site > Celiac Disease > Ask the Experts >
Ask the Doctor > Tests and their results
2. Celiac Disease: The Great
Mimic Robert Dahl, MD http://www.csaceliacs.org/GreatMimic.php
3. Source of the
following quote, Dr. Kenneth Fine, MD,
www.enterolab.com >frequently asked questions>
If I am already on a
gluten-free diet, do I have to return to eating gluten to be accurately
tested for gluten sensitivity using the stool test? Here is the
actual link
http://www.enterolab.com/Who_Should_Be_Screened/#already
"Thus, it is better to test
on the current diet before adding the unreliable variable of a one to two
week gluten challenge. It varies in different people how they or their
immune system will react to gluten, and how long it would be required to
eat gluten to make tests positive (as they once may have been before
starting the diet). There are no guarantees that a truly gluten sensitive
person will have positive tests after a short 1-2 week gluten challenge
anyway, even if they get symptoms from it...Alternatively, if you choose
to do a gluten challenge at the outset (again which we do not recommend)
and the test is negative, it may be so because damage and antibody
production has not yet been initiated. And you do not get the benefit of a
comparison of what your antibody levels were when gluten was out of the
diet. The comparison itself before and after gluten can be helpful, and is
definitely more meaningful than testing after a short time on gluten after
being gluten-free for an extended period.
Thus, I recommend testing in
the stable gluten-free condition first then in the variable
gluten-challenge condition only if necessary.
.test
first
One final note. Sometimes
people experience dramatic improvement of symptoms and feeling of
well-being after beginning a gluten-free diet. If the improvement to
health was dramatic following removal of gluten from the diet, then this
in and of itself is a positive diagnostic test (and perhaps the ultimate
test). " (Emphasis added)
Back to top
Return to
gluten challenge discussion
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