By Kerri Rivera, Kimberly Mcdaniel and Daniel Bender: Healing The Symptoms Known As Autism Second Edition
By Kerri Rivera, Kimberly Mcdaniel and Daniel Bender: Healing The Symptoms Known As Autism Second Edition
By Kerri Rivera, Kimberly Mcdaniel and Daniel Bender: Healing The Symptoms Known As Autism Second Edition
Olive Kaiser
Reprint with permission of an article that appeared in
Molecular Mimicry
Who am I?
I am a married stay at home mom, blessed with a wonderful husband and
seven fantastic kids. In 2003, after decades of searching, we learned about
gluten reactivity through our daughters nursing school training and eventually
confirmed that we are a gluten syndrome family. Our daughter and my
husband had the most obvious symptoms, but we all had manifestations and
antibodies. Additionally our oldest son reacted to his MMR vaccination and
probably other shots, which added high functioning ASD/ADD to the mix, and
he developed type 1 diabetes at age 19. Two other sons had various shades
of ADD/ADHD. My own school age vaccinations in the 1950s may have led
to repeated bouts of strep throat until I reacted to a strep antibiotic injection
about age 10. I developed PANDAS from that reaction (Pediatric Autoimmune
Neuropsychiatric Disorder Associated with Streptococcus). What a struggle!
Decades later it has responded somewhat to diet changes and now the CD/
parasite protocol. I give thanks to God for His guidance along the way.
How did I get into this community and this health project?
We tested for gluten syndrome (we called it celiac disease back then) using
standard tests recommended by celiac experts and received confusing results.
Then, our daughter had a troubling experience with a gluten challenge that did
not match the celiac story wed been taught. I delved into medical literature
and networked extensively with the gluten syndrome community looking for
help. In that desperate discovery and prayer process I found practitioners and
researchers who stepped outside the villi damaged celiac only box. They
were able to explain why we received, in the midst of obviously gluten-induced
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incidents, false negative results from our celiac blood tests and villi biopsy.
Those tests significantly led us astray and eventually I put up a website...
www.TheGlutenSyndrome.net
...to warn others of discrepancies we stumbled upon in the diagnostic process.
3
Dr. Vojdanis abstract in his editorial The Immunology of Gluten Sensitivity
Beyond the Intestinal Tract, supports that the villi are not always injured.
To quote his editorial abstract, Evidence has been accumulated in
literature demonstrating that gluten sensitivity or celiac disease can exist
even in the absence of enteropathy [gut/villi damage], but affecting many
organs.
3. I dont have damaged villi, and my tTG/gliadin tests were
negative, but I feel so much better gluten-free. Why?
The tests were likely false negative. That is very common. As gluten
digests, it breaks into more pieces than we have tests developed to check
them, and the immune system makes a separate antibody for each piece.
Standard tests only check 2-3 antibodies. You may have others (Cyrex
Labs tests 28 antibodies). Your villi may be fine, but you may be injured
somewhere elsefor example: thyroid, nerves, heart, etc.
4. Why do many gluten syndrome patients not only react to wheat,
barley, and rye but also at times to other foods, particularly oats,
milk, corn, soy, egg, yeast, coffee, sesame, rice, chocolate and others?
These foods look like gluten closely enough in their structure that the
immune system may mistake them for gluten. This situation may also
cause your gluten antibodies to run high after you go gluten-free. The
immune system may misrecognize other foods, such as yeast, corn or milk,
and others for gluten because they resemble gluten molecularly.
5. The diet seems excessively strict? Why does it take so little
gluten to start a reaction?
Our perspectives are skewed. We accept that miniscule amounts of venom
injected by a bee sting, or a tiny exposure to peanuts in allergic individuals
can set off immediate life threatening allergic reactions. Many medications
are contained in very TINY pills, but they have powerful effects in our
bodies. Immune gluten reactions are also that sensitive. Crumbs matter.
6. Why do many people react to gluten, proven by antibody tests,
but they have few or no warning symptoms for a long time and then
they crash with something serious, usually autoimmune?
Gluten is famous for slowly injuring nerves by molecular mimicry, and
in many cases, the nerves are silenced by that injury. The patient does
not realize there is a problem until the tissue or organ that those nerves
supply begins to fail.
7. Why do so many of us react to gluten today, when for centuries
most people appeared to be fine with wheat, barley, rye and oats?
After all, wheat and barley are mentioned positively in the Bible and
other historical documents.
4
Todays gluten is altered, violently, by nuclear radiation and chemical
mutation within the past 60 years*, plus our toxic and poorly nourished
bodies do not have optimal digestive capabilities to break it down. Weak,
toxic, leaky body barriers/membranes, particularly leaky gut, set the stage
for gluten induced molecular mimicry.
*Nina Federoff, Mendel in the Kitchen
8. Why do specialists and researchers insist that the gluten-free
diet must be life long? Cant we heal this problem and go back to
our beloved wheat bagels, croissants, and brownies?
Our scientists still insist that gluten-free is a strict lifelong commitment.
I agree. For me it is not worth playing with todays wheat. There is
something strange and unpredictable about it. The memory B cells in
the immune system never forget what the enemy looks like, and fresh
exposure retriggers antibodies.
9. Traditional peoples soaked and/or sprouted their wheat berries
and then made sourdough bread with them. Does that process
alter the gluten sufficiently for gluten syndrome patients to safely
consume this bread, particularly spelt or einkorn?
No. These processes and ancient wheat grains do make the bread more
digestible, but not glutenfree and still unsafe.
10. Should I substitute all the gluten foods I routinely eat with
gluten-free substitutes?
No, not routinely. The gluten-free community finds that they are still
mainly expensive high carb processed food (i.e., junk food).
11. What are gluten withdrawals?
Occasionally, gluten breaks into specific pieces in the gut that resemble
opiate drugs. When a person goes gluten-free, they may experience
temporary, but unpleasant, withdrawal symptoms for a few days as these
pieces disappear from the blood stream.
12. What are the risks of formal gluten challenges?
Many patients avoid these challenges. Occasionally a patient tries the
glutenfree diet for an extended period of time and then the patient or
doctor decides to run tests to confirm gluten reactivity. The standard
advice to restart the production of antibodies is to consume gluten
products 4 x per day for 4-6 weeks, and then run the standard blood
test, followed by a villi biopsy if the blood work is positive. This is called
a gluten challenge and has created some very dramatically unhappy
reactions, some of them neurological/psychological.
5
Please see Appendix 5 (page 449) and www.GlutenSyndrome.net for
more info and references. When we understand molecular mimicry our
understanding of the gluten syndrome comes into focus. It explains why
gluten-free diets and beyond are important tools to reduce inflammation
and promote healing. As time goes on, glutenfree diets are easier to
manage in public, tests are better and social awareness has grown. The
Just Eat Real Food movement and others play into healthy glutenfree
dining with wonderful recipes that avoid processed foods and incorporate
healthy fats and nutrient density. This is a happy, encouraging era as we
watch our children heal and adults find better stability in the midst of a
health crisis. Bon Appetit!!!
A I D
Appendix 5
MOLECULAR MIMICRY
What It Is
&
How it Relates to
The Gluten Syndrome
by Mrs. Olive Kaiser
fter reading the short answers in The Diet Chapter (page 64), we understand
(simply) the basics of how some of these departments of the immune
system function. It is easier to grasp how, through molecular mimicry, gluten
can damage so many different tissues in different people, and sometimes cause
other foods that look like gluten to also be reactive. Before we go any further,
I would like to thank the following professionals for their contributions to
our familys well-being and a wider understanding of the gluten syndrome
and other related topics. If you would like to conduct further research into
this topic, the body of work that the following professionals have contributed
would be a great place to start. There is so much more to learn.
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Dr.Aristo Vojdani, PhD., MsC, Immunologist, CEO owner of
Immunosciences Lab, Los Angeles, CA. Dr. Vojdani is also chief scientific
advisor of Cyrex Laboratories, Phoenix, AZ. Dr. Vojdani has published nearly
150 excellent research papers.2,3,4 They fit the community like a glove.
Dr. Rodney Ford, MD, pediatric gastroenterologist, NZ, grasped the extent
of neurological injury,5 and silenced nerves phenomenon.6 This compellingly
suggests why many of us do not recognize symptoms of gluten damage until
we are in deep trouble. This builds on the previous work of Dr. Marios
Hadjivassiliou, Professor of Neurology, Sheffield, UK.7
Dr. Kenneth Fine, MD, gastroenterologist, Dallas, Texas, owner of an
investigative research lab, Enterolab (www.Enterolab.com). His lab ran the
only accurate gluten antibody tests our family received back in 2004.
Without the courage of these astute researchers, we would still be wandering
in the dark. Thank you all, and other individuals who thought outside the box.
Kerri you are one of those thinkers. Thank you!
Lastly, special thanks to LuEllen Giera, my support group leader, for leading
me to Dr. OBryan and Dr.Vojdani.
1.What is Molecular Mimicry? How does gluten damage us?
The structure of gluten resembles the structure of many of our body
tissues. When the immune system attacks gluten or partly digested
pieces of gluten it may also attack body tissues that look like those
pieces of gluten. There may also be other processes that we do not yet
understand.
What is gluten? Gluten is a stretchy protein found in some bread
grains. The problematic types are found in wheat, barley, and rye, and now
early research suspects possibly rice, corn and oats (Dr. Peter Osborne,
DC, CCN, www.glutenfreesociety.org).
What are proteins? Proteins are a class of materials found in living
tissues, such as hair, nerves, enzymes, etc. Molecularly, all proteins
look like necklaces of beads strung into various color sequences. The
different sequences make the proteins different, and the colored beads
represent 22 separate amino acids. Our digestive system uses enzymes
to cut up these necklaces into single beads so they are small enough to
cross the gut wall properly and be restrung into new proteins. See image
on page 452.
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Unfortunately, many folks today are toxic and poorly nourished and do
not have strong digestion, so the gluten necklaces may never completely
break down. As weaker bonds between the beads break, pieces, called
peptides, of gluten are formed. Gliadin is a well known gluten piece and
there are many others.
Our immune system has departments to protect us in various
ways, including IgA, IgG, IgE, IgM, IgD and others. IgE can cause immediate
allergic reactions to bee stings or peanuts, etc. IgA, IgG and IgM may
react more slowly with less drama. They all manufacture workers or
soldiers, called antibodies, each custom designed to patrol our bodies,
looking for the bead sequence of one particular enemy. When they find
that bead sequence, they tag or stick onto it. Our killer white blood cells
interpret the antibody tag as a condemned sign and know to surround
and destroy that protein.
If an antibody test lists Gliadin IgA, Gliadin IgG, andGliadin IgM
it means the test checked for gliadin antibodies in the IgA, IgG and IgM
departments. If the antibodies are high it means the immune system is
does not like gliadin and is working to destroy it.
Weak, leaky barriers Our gut wall and other barrier membranes
such as the skin, lung, placental, and blood brain barriers are held together
with tight junction proteins that act like velcro. Inflammation, parasites,
gluten, medications, infections, electrosmog, etc, may damage the velcro
or open them up too much. Substances may slip through them into places
they should not be and cause trouble.
Unfortunately if the gut wall does not hold together well, i.e., is leaky,
pieces of incompletely digested gluten strings (and others) may slip
through and run into the immune systemour dutiful guard dog on
the other side. Due to their too-large size he may raise the alarm. The
invader strings are frisked out i.e., examined. If they are rejected, one
or more of the immune departments make matching antibodies to tag
them so the killer cells know to go after them.
It is at this point more problems may arise. A gluten antibody may run
by a natural body tissue, for example a nerve in the heart. It may see in
that innocent nerve tissue a sequence of beads that matches or partly
matches the gluten sequence it was designed to tag and stick to that
section of the nerve protein instead. This, unhappily, attracts killer cells to
the misidentified nerve, resulting in autoimmune injury to the nerve. This
is molecular mimicry.
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Other foods and proteins beside gluten may also initiate molecular mimicry
when they prematurely cross a leaky gut, and may prompt allergies (IgE)
or intolerances (IgA, IgM, or IgG). However specialists agree that glutens
particular bead (amino acid) sequences are uniquely guilty in their ability
to upset the immune system and instigate molecular mimicry between
their antibodies and our tissues.
Molecular mimicry can take place between non-food proteins and body
tissues also. Infectious microbe sequences such as strep, for example, are
believed to partially match, (in the case of strep), heart and joint proteins
and so injure the heart muscle or valves, and (rheumatic) joints. Ditto is
suspected for root canal and cavitation infections that may circulate and
injure specific tissues, including the heart. Flu microbe sequences can
resemble gluten and may trigger or surface gluten syndrome. There are
numerous other examples of mimicry between infections, foods and body
tissues.
Consider the image below. An antibody may be made to seek the shorter
bead sequence of a gluten piece that crossed the gut wall, but it might
also recognize a similar sequence, a partial match, in the longer nerve
protein sequence. The antibody tags or sticks to, the part of the nerve
tissue that matches the gluten piece that it seeks.
Gluten Peptide (and antibody) Sequence
Note: the different colors represent different amino acids.
pink
blue
white
red
red
green
Nerve Sequence
orange orange yellow green
red
red
blue
white
red
orange green
blue
yellow
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the invader gluten pieces. If gluten is removed, antibody manufacture
eventually stops, but any time the immune system sees even a tiny amount
of that protein sequence, antibody production is retriggered. This is why
specialists insist the gluten-free diet is strict and lifelong.
Gluten removal stops production of the initial antibody, which decreases
the inflammatory process significantly. Literature shows the gluten-free
diet may reverse or improve many serious conditions, but it may not
always arrest an advanced autoimmune disease. Prevention is key.
Example: Once a ball is pushed down a hill, further pushing will only
send it downhill faster, but it will roll on its own. To correlate, molecular
mimicry between the gluten antibody and victim tissue starts the ball
rolling. Removal of gluten stops pushing the process, and the sooner the
better. The longer the exposure8, and to other factors as well in a triad
of autoimmunity (a. environmental stress, toxins, infections, etc.; b. a faulty
blood brain barrier; and c. susceptible genetics), the higher the chance of
autoimmune disease.
Dr. Vojdani comments, If it is detected early enough and steps are taken
early enough the condition may be reversed. If any condition is advanced
enough you can reach a point when simple removal may not be enough.
Autistic children generally have autoimmune reactivity rather than fullblown autoimmune disease, which is why they show great improvement
upon the removal of gluten.
2. Does gluten always damage the villi of the small intestine as the
celiac story teaches? Many other tissues such as thyroid, pancreas,
blood vessels, joints, brain, nerves, liver, bone, etc. may be involved in
this disorder. Does all that other damage arise due to poor nutrient
absorption from injured gut villi?
No, according to published research many researchers and practitioners
now believe the villi are not always damaged in an autoimmune gluten
reaction.2 Where there is no villi damage, injury to other organs cannot
be due to nutrient deficiencies caused by villi damage. Molecular mimicry
provides a mechanism for direct autoimmune gluten injury to many
other tissues and organs when the villi are fine. It is also possible that
several tissues and organs, including villi, may be injured and then nutrient
deficiencies from poor villi absorption may affect other areas.
Dr. Vojdanis abstract in his editorial, The Immunology of Gluten Sensitivity
Beyond the Intestinal Tract,2 supports that the villi are not always injured. To
quote his editorial abstract, Evidence has been accumulated in literature
11
demonstrating that gluten sensitivity or celiac disease can exist even in the
absence of enteropathy [gut/villi damage], but affecting many organs.
3. I do not have damaged villi, and my tTG/gliadin blood tests were
negative, but I feel so much better gluten-free. Why?
The tests were likely false negative. That is very, very common. As gluten
is processed in the digestive system, it can break into more pieces than
we have tests developed to check them, and the immune system makes
an antibody for each separate piece. The test probably missed your
antibodies because they were different from the one or two the test
checked. Many patients have proven this because they received negative
results to the standard test, and then found a number of positive gluten
related antibodies when they ran a more comprehensive panel. Cyrex
Laboratories (www.cyrexlabs.com), runs 28 gluten related antibodies in 3
areas of the immune system.
Your properly performed* biopsy was probably negative because likely
your gut villi are fine.** Your gluten injury may have targeted other organs
or tissues, not the villi.*** For instance, if gluten has damaged the heart,
snipping intestinal villi will not help find the heart injury. Damage in either
place is not ok.
More detail on False Negative Tests
The blood and saliva tests Standard celiac blood and saliva tests only
check tissue transglutaminase IgA, (tTG IgA) as an initial screener. Most
doctors give up if that test is negative. However, the literature shows that
standard tTG-IgA tests are only elevated when the villi are completely
destroyed. Dr. Vojdani finds that form of tTG is often not found in other
gluten injured tissues. Therefore the standard tTG-IgA test is a poor
screener for most patients, and returns many false negatives. More forms
of tTG have now been discovered.
Doctors might also order a standard test for deamidated gliadin IgA
and possibly IgG. Unfortunately these tests also have a miserable failure
rate for picking up gluten syndrome because many patients have other
*
If there IS villi damage it is possible for the biopsy to miss it if the damage is patchy or further down
the duodenum than the villi samples are taken. Most good gluten aware gastroenterologists
take a number of samples to try to avoid this possibility.
** It is possible that very early villi damage may slowly accumulate long before it shows up
on a pathology report. An elevated IEL count, (intraepithelial lymphocyte, an early sign of
inflammation) of the villi tissue indicates this process is underway. Ask the gastroenterologist to
specify that the pathologist do an IEL count.
*** I am careful to specify the villi of the gut. There may actually be gut damage, but not to the
villi. There are many types of tissue in the gut, such as nerves, for instance. The villi may be fine,
but it is still possible that some other gut tissue may be damaged by molecular mimicry or other
processes we do not yet understand. For instance, if the nerves that control peristalsis (wave
like gut motion) are injured, it could result in chronic constipation.
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antibodies beside those two. The gluten string can break up into many
other pieces, plus other departments of the immune system may react.
Villi biopsy vs. positive antibodies for diagnosis? - To add insult to
injury, even if antibodies are discovered, many celiac, villi focused specialists
may still insist that the villi biopsy is the final word for celiac diagnosis
and they trust a negative villi biopsy over positive antibodies. Many folks
have positive antibodies and suspicious symptoms, including improvement
upon gluten removal, but no apparent villi damage. Their doctors assure
them they can eat gluten! This is a serious mistake for many patients.
More on the villi biopsy By now it is easy to understand why even
properly performed* villi biopsies are only useful for the relatively small
subset of patients in which the villi of the duodenum are injured. Most
patients do not happen to have damaged villi. Their damage is somewhere
else in their body, other organs, nerves, etc., or some enzyme or functional
item has been damaged by gluten antibodies. Scientists such as Dr.Aristo
Vojdani2,3,4, do NOT recommend villi biopsies for gluten syndrome
diagnosis (there may be other reasons to scope the gut, such as tumors,
etc). Dr.Vojdani explains that if there are elevated antibodies to gluten,
the immune system is screaming I do NOT want this substance! I am
manufacturing antibodies to tag and destroy it. That is sufficient reason
to remove gluten from the diet. It is less expensive to check an extensive
array of gluten antibodies than undergo an endoscopy anyway, and is much
less invasive.
4.Why do many gluten syndrome patients not only react to wheat,
barley, and rye but also sometimes to other foods, particularly oats,
milk, corn, soy, egg, coffee, sesame, yeast, chocolate and others.
These foods have similar amino acid sequences to gluten. Now that
we grasp molecular mimicry, this is logical. The immune system may
misrecognize them for gluten, causing cross reactions which may keep
the gluten antibodies running high even on a gluten-free diet. Happily,
this does not always occur. Cyrex labs, Array # 4, checks a list of cross
reactive and gluten substitute foods, IgA and IgG.
5.The diet seems excessively strict? Why does it take so little
gluten to start a reaction?
We understand that miniscule amounts of bee venom, or peanut, can
trigger emergency allergic reactions, and very tiny medication pills can
cause major effects on our bodies. This is also true of gluten reactions,
both immediate allergic IgE, and delayed IgA, IgG, and IgM.3 Crumbs
matter. The difference is that delayed reactions are not as obvious as the
allergic reaction. They may go unnoticed for hours to decades, but may
be a long, slow, serious process. Their lack of drama robs these reactions
of the compliance respect they deserve.
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6.The silent syndrome - Why do many people react to gluten,
proven by antibody tests, but they have few or no warning signs, or
seemingly unrelated symptoms they do not recognize or connect
with their diet for a long time. Then they crash with something
serious, often or usually autoimmune?
Gluten is famous for slowly injuring nerves5 by molecular mimicry, and
in many cases the nerves are silenced by that injury.6 The patient does
not realize there is a problem until the tissue or organ that those nerves
supply begins to fail. Furthermore some areas of the body do not contain
many pain nerves, so we may not feel the damage. Slow silent damage is
understood in other diseases. Heart damage, cancer, and aortal aneurysms
are examples of conditions that develop silently and then suddenly flare.
Prevention is best.
For years, celiac literature recognized 2 neurological conditions, peripheral
neuropathy and gluten ataxia. In the wider perspective of gluten syndrome,
nerve damage may be one of the most important areas of injury.5
Dr. Rodney Ford, MD, suggests in his book, The Gluten Syndrome: Is Wheat
Causing You Harm,6 that this is primarily a neurological disease5, injuring and
in some cases silencing nerves, compromising the health and function of
the tissues they serve. This idea was reinforced by an astute observation
made by Dr. Ford of one of his patients, an elementary school child who
had not achieved bowel control. After she went gluten-free, the problem
resolved. Dr. Ford realized the child now recognized the signal to visit
the toilet, and accidents were avoided. The nerves in the lower bowel
apparently woke up once the antibodies that injured them disappeared.
This is an interesting and logical theory to explain silent gluten injury,
and it fits the community. Here is an abstract of Dr. Fords published
paper which discusses a possible widespread neurological focus:5
The Gluten Syndrome: A Neurological Disease, by R.P. Ford
Hypothesis: gluten causes symptoms, in both celiac disease and non-celiac glutensensitivity, by its adverse actions on the nervous system. Many celiac patients
experience neurological symptoms, frequently associated with malfunction
of the autonomic nervous system. These neurological symptoms can present
in celiac patients who are well nourished. The crucial point, however, is that
gluten-sensitivity can also be associated with neurological symptoms in patients
who do not have any mucosal gut damage (that is, without celiac disease).
Gluten can cause neurological harm through a combination of cross reacting
antibodies, immune complex disease and direct toxicity. These nervous system
affects include: dysregulation of the autonomic nervous system, cerebella ataxia,
hypotonia, developmental delay, learning disorders, depression, migraine, and
headache. If gluten is the putative harmful agent, then there is no requirement
14
to invoke gut damage and nutritional deficiency to explain the myriad of the
symptoms experienced by sufferers of celiac disease and gluten-sensitivity. This
is called The Gluten Syndrome.5
7.Why do so many of us react now, when for centuries most people
appeared to be fine with wheat? After all, wheat is spoken of
positively in the Bible and many other historical documents.
There may or may not be a conclusive answer to this question, but a few
factors may play a role.
a. Many folks have higher toxin levels now, their nutritional status is
worse, and digestive strength is weaker.
b. Todays wheat is different. Gluten grains have been subjected to a
lot of changes, some genetically violent, according to Nina Federoff,
a pro GMO scientist. She asserts in her book, Mendel in the Kitchen,
that gluten grains were altered with nuclear radiation and chemical
mutation by the 1950s 1960s.9 Recently a stash of old blood samples
from that era, stored in a freezer by the military, were checked with
standard celiac antibody tests. The incidence of positive antibodies
was much less in those samples than is typically found in the general
public today.
c. Wheat seed is sometimes treated with mercury. Might this play into
unintended results?
8.Why do specialists and researchers insist that the gluten-free diet
must be life long? Cant we heal the gut and go back to our beloved
wheat bagels, croissants, and brownies?
Our scientists insist that gluten-free is a strict lifelong commitment.
Thememory B cells in the immune system never forget what the enemy
looks like. Todays gluten is a violently altered substance according to
the very scientists who defend genetic alterations.9 It is not worth playing
with todays wheat. There is something strange and unpredictable about
it. Even if a leaky gut has healed, future circumstances, toxins and stress
might injure it and retrigger the syndrome, perhaps silently. Researchers
say gluten creates leaky gut for a few hours in everyone.
Particularly since gluten appears to be the bad boy that predisposes
to other intolerances, I prefer to walk away for life and concentrate on
other nutrient dense foods. However, it is wise to consume whole foods
rich in B vitamins, (ex., liver or bee pollen), and silica (the herb horsetail,
equisetum hymale species, is a source,) as gluten grains contain those
nutrients.
15
9.Traditional peoples soaked and/or sprouted their wheat berries
and then made sourdough bread with it. Does that process alter the
gluten sufficiently for gluten syndrome patients to safely consume it
today, particularly organic spelt and einkorn?
No. These methods make bread more digestible, but the fermented
products and ancient gluten grains still contain gluten and can trigger
reactions in research trials. Even if there are no visible reactions, silent
injury cannot be ruled out without long term research. Additionally, the
preparation process before fermentation is completed is definitely gluten
based, so significant cross contamination issues come into play in the
kitchen. Healing the gut is a challenge. Other areas crop up that need
cleanup too, such as the parasite issues. Gluten specialists advise us to go
gluten-free, stay that way, and move on.
10.What are gluten withdrawals?
Rarely, a few days to a few weeks after going gluten-free, or after being
glutened, a patient may experience a few hours to a couple of weeks of
a parade of varied and unusual symptoms including dizziness, black pit
depression, crying, physical or emotional exhaustion, even as in difficulty
getting up to use the rest room, and other odd symptoms. In severe
cases they may experience an inability to socialize, make eye contact,
make decisions or hold a normal conversation. Children or teens may
act out in extreme ways during this situation. Often patients cannot bring
themselves to discuss this experience afterward. However, a patient
reluctantly described her experience 2 years later as encountering
an empty white board with nothing on it. The rest of life around her
seemed to be across the Grand Canyon. This appears to be a temporary
crisis that resolves anywhere from a few hours to a couple of weeks
or so according to folks who contact me about them. It is assumed
that this phenomenon is due to particular pieces of gluten strings called
gluteomorphins with amino acid sequences which resemble opiate drugs.
When these gluten pieces disappear from the blood stream the patient
may experience withdrawal, very much like a drug withdrawal. Another
theory for why this may happen involves changes in blood flow to the
brain that may create a temporary neurological crisis. Autistic children
may suffer these withdrawals and may take longer to stabilize, but they
usually make nice gains after the crisis passes. Happily, once withdrawal is
over the patients are usually much better, and they are VERY vigilant with
their diet.
In the rare event that this type of reaction might occur, family and friends
of the person do well to understand that the person may (or may not) be
able to prepare their own food, for instance, but not be able to verbally
communicate much, make eye contact, hold a conversation, answer
16
questions, and may be uncharacteristically snappy particularly if others
attempt to communicate with them. Family members may wish to be
quietly and unobtrusively nearby until the person passes through this
stage. If the patient has children to care for, help may be needed, and also
solitude, rest, and simply prepared real nourishing food that is glutenfree and easy to digest such as bone broth. Probiotics or old fashioned
fermented raw veggies or sauerkraut from the refrigerated section of the
health food store may be helpful. Family and friends should not take the
persons temporarily withdrawn personality personally.
For details on these unstudied rare reactions, or if you need support
during a crisis, see...
www.theglutensyndrome.net
/Adverse_reactions.htm
...or contact me at jka8168@sbcglobal.net. I collect testimonials, so feel
free to contribute if you have experienced this type of reaction. We hope
these reactions will eventually be studied.
11. Should I replace all the gluten foods I routinely eat with glutenfree substitutes?
No, most gluten-free substitutes are still mainly expensive processed
food (aka junk food). For the first few weeks it is normal for newbies
to look for substitutes to replace their old gluten friends and it helps
them make the very real emotional transition, but there are better, more
nutrient dense food choices. The substitutes are still high carb, (potato,
corn, tapioca, rice), and most contain sugar, processed gums, GMOs and
ingredients that do not help us get well. We may actually eat more of
them BECAUSE they are gluten-free. Additionally they are expensive and
not always easy to prepare at home.
Many experienced gluten-free folks gradually wean themselves off a
constant diet of the rather junky substitutes in favor of other real
unprocessed foods, such as meat, eggs, veggies, fruits, nuts, fermented
vegetables, bone broths, and so on according to their digestive abilities.
The gluten-free substitutes become the occasional treat, such as pizza
crust. Gluten free families are wise to find the healthiest GF versions of
just the items they miss the most, and skip the rest. For example, at our
house, I had served gluten spaghetti for years, but when I dropped that
habit, no one noticed. However, my husband wanted his breakfast toast,
so we found a gluten free brand he liked and continued that tradition.
Each family works out these adjustments for themselves.
17
Lettuce wraps are crunchy and yummy instead of sandwiches. Hamburger
patties without the bun but with onion for the onion lovers, are still tasty
and they feel better afterward. In our family we now use watermelon or a
watermelon basket for birthday cake, complete with candles and a bow
in the summer. Fruit pizza with a nut flour or nut/date crust, avocado
chocolate or other dairy-free or fruit based pudding for the sauce, and an
artistic fruit/coconut topping works for parties. There are lots of ways to
celebrate happy healthy gluten-free, junk free birthdays.
12.Warning! Formal gluten challenges for testing purposes risky!
A word of caution. Antibody tests must be performed while the patient
is still consuming gluten or shortly after going gluten-free. Sometimes
doctors advise patients who are already gluten-free to go back on gluten,
4 slices a day for 4-6 weeks to restart the antibodies for testing purposes.
Patient experience has shown that once the system is fairly clean of gluten,
going back to perform a formal gluten challenge for testing purposes may
be risky. The secondary reactions for some individuals can be significant,
particularly neurologically. Challenges have been known anecdotally to
trigger psychological black pit crashes, fibromyalgia, and other organ
injury. Autistic children may have a hard time when they just go glutenfree initially or consume gluten accidentally. A planned challenge for them
may be very unwise.
13. Intermittent infractions (aka cheats) are seriously unwise and
may increase injury.10
This is not a fad, or cheaters diet. The gluten-free diet is a medical diet to
treat or control serious autoimmune, inflammatory, and often neurological
diseases. There is no room for casual infractions. Research suggests
that repeated, intermittent cheats, even every few weeks, over time may
actually influence mortality rates.10 This is not a reason to avoid the diet,
but to take it seriously. Once the strictness of the diet is embraced the
patient or family adjusts and discovers that it is doable. Gluten-free food
bars, nuts, a packet of gluten-free soy sauce, and GlutenEaseTM or other
brands of DPP IV enzymes are good to keep in the glove compartment
or backpack to handle emergencies. NOTE: DPP IV (pronounced DPP
4) digestive enzymes help break down gluten but they do not stop a
reaction and are NOT a reason to cheat. However if there is a possibility
of exposure it makes sense to take them for whatever help they might
afford. In the case of a confirmed gluten exposure, take the enzymes, keep
the bowels moving, stay calm and deal with it. Worry and drama makes
everything worse.
14. Discrepancy The celiac focus uses villi biopsy for diagnosis. The
wider perspective relies on positive antibodies or improvement on
the diet. Question? How did villi damage become the gold standard?
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The first place the medical profession found conclusive damage by gluten
in the 1950s 60s was to the villi of the gut. After the endoscopy tool
was developed, villi damage and subsequent healing upon gluten removal
could be observed. They concluded that gluten damaged the villi. This
was true. The particular subset of cases they scoped had villi damage, but
their conclusion that the villi were the only target of damage for everyone
with gluten syndrome was too narrow according to research today.2 In
most patients the target damage was NOT the villi, but the bones, joint
lining, heart, thyroid, pancreas, liver, brain, almost any organ, blood vessel
walls, nerves almost anywhere in the body, and so on. The patients might
even have injury to multiple tissues, BUT NOT NECESSARILY ALWAYS
TO THE VILLI. When the villi biopsy was declared the gold standard for
gluten syndrome diagnosis, it cut out most of the patients who were
reacting to gluten. Snipping villi does no good if the damage is in the
thyroid or brain. For the next 60 years very few patients were prescribed
a gluten-free diet because most of them did not have damaged villi, (or
the doctor never thought to look at all). Their gluten-induced injury was
somewhere else in their body, so they were never diagnosed.
15. Discrepancy The villi damaged celiac disease story teaches
that celiac disease is autoimmune and much worse than non
autoimmune non-celiac gluten syndrome (NCGS). The wider
gluten syndrome perspective teaches that both are autoimmune
and serious.2,3,4
A significant disagreement exists over the autoimmunity of non-celiac
gluten syndrome (NCGS). In the beginning, antibodies to gluten could
not be found in NCGS patients, therefore it was assumed that NCGS
was not autoimmune. However, Dr.Vojdani insists NCGS IS autoimmune.
The NCGS patients have plenty of antibodies, just different ones than the
standard tests check. His tests, which check and find more antibodies,****
the illnesses these patients develop, and recoveries or improvements on
the diet all prove his point. He also asserts that NCGS can indicate a gut
wall in worse shape than the celiac villi damaged subset.2,3,4 The damage
is simply somewhere else, not to the villi. See the link below for diagrams
of these reactions, and compare the condition of the gut wall in the celiac
diagram with the gut wall in the gluten intolerance diagram.
www.TheGlutenSyndrome.net/
VojdaniDiagrams.htm
**** Dr. Vojdanis research found several more forms of both tTG, and gliadin antibodies, (alpha,
gamma, omega), gluteomorphins, glutinins, and others. His saliva and blood panels check 12
separate antibodies in 3 different immune departments and 2 mediums, totaling 28 gluten
related antibodies. The two panels, run together, nearly always find antibodies if they are present
in the patient, translating to far fewer false negatives.
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This disagreement fosters confusion among NCGS patients that villi
damaged celiac disease is the big bad boy to avoid (true, it is bad), but
that NCGS is less severe, not autoimmune. This translates in real life
to gluten birthday cake for the Friday night party and then back on the
gluten-free bandwagon Saturday morning, so I wont eventually develop
villi damaged celiac disease. Yes, that could happen also, particularly if
the person seesaws on the diet, but the notion that NCGS is not as
bad as villi damaged celiac disease is a misunderstanding according to
Dr. Vojdani.2,3,4 To repeatedly seesaw off and on gluten indiscriminately
is unwise according to medical literature,10 and community experience.
Gluten exposure needs to be an accident, which happens occasionally
even to the most vigilant. Casual cheats are a more risky mindset, usually
meaning more frequent.10 Take it seriously, nerves, blood vessels, and
organs are precious.
20
NOTE: If a patient has been ill for a very long time it is possible for the
immune system to be so worn out that few antibodies are manufactured.
Lower antibody counts might show a false negative but not prevent injury
to innocent tissues. Also, due to the wide variety of antibodies a patient
may happen to make, it is possible to run any antibody panel and miss those
particular antibodies. The more antibodies that are checked the less likely
this may occur, but should be considered in the event of a negative test that
the patient or practitioner questions. In this case a gene test may be helpful.
Enterolab - Stool and 1 part gene tests
For 10 years Enterolabs mail in home collection research stool test stood in
the gap for thousands of patients who received false negative standard tTG
and gliadin blood tests. It has saved many lives, and gave our family the social
confirmation we needed. This unpublished research test checks stool for
tTG-IgA and gliadin-IgA only. The use of stool as the testing medium appears
to pick up those antibodies most of the time, much much more often than
standard tTG or gliadin IgA blood tests. However, since only two antibodies
are checked, it may miss in some cases.
Dr. Fines lab also offers a one part gene test which he believes is adequate for
a reasonable price. Dr. Fine finds if a gene is present, nearly always so are the
antibodies, and two genes are worse. Villi damaged celiac specialists recognize
only HLA DQ 2 and 8 as gluten related, but Dr. Fine includes 1 and 3 and their
subsets 5, 6, 7 and 9. In fact according to Enterolab, HLA DQ 4 is the only
DQ gene that does NOT correlate with gluten syndrome. According to him,
a patient needs 2 copies of the HLA DQ 4 gene to miss the predisposition.
This translates to 81% of the Caucasian population with a predisposition to
trigger gluten syndrome at some point in their lifetime, including before they
are born.
Cyrex Labs Better blood and saliva tests
Cyrex Labs (www.CyrexLabs.com) opened their doors in 2010 in Phoenix,
Arizona. They run much more complete antibody panels designed by Dr.
Aristo Vojdani, PhD., their scientific advisor, an immunologist, and researcher.
Dr. Vojdani found a wider variety of gliadin antibodies, (alpha, gamma, omega)
and variations of tTG in other tissues, plus gluteomorphins, and several
others. He also checks an IgM antibody due to possible malfunctions in that
system. Cyrex blood and saliva panels, Array #1 and #3, combined, test for
28 gluten related antibodies between 3 immune departments, 2 mediums,
21
plus IgA insufficiency. They rarely miss a diagnosis because they look for
so many antibodies. (Note: Vojdani believes stress, toxins and infections, i.e.
environment, can trigger a gluten reaction without the genes.)
Gluten Free Society Two Part Gene Test
A third approach espoused by Dr. Peter Osborne, The Gluten Free Society,
Sugarland, Texas, (www.glutenfreesociety.org), is to run only the gene test,
since any antibody panel may theoretically miss the particular ones the patient
may have. He uses a 2 part test, the most complete method, and looks for
both celiac and gluten sensitivity genes. A positive gene test does not prove a
current immune response as do antibodies, but predisposition to it. Presence
of 2 genes indicates a more severe case. Gene tests have an advantage in that
they can be run anytime, gluten consumption is unnecessary, and depending
on the results, useful information can be gleaned for immediate and extended
family members.
Elimination Diet
The elimination diet is inexpensive. Often/usually it demonstrates improvement
upon removal of gluten, or worsening upon reintroduction. Many heads up
practitioners accept this as reason enough to go gluten-free.
There are occasional complications or interpretation issues for the elimination
diet as follows:
a. Reintroduction of gluten (gluten challenge) can trigger stronger,
sometimes risky reactions.10 Stop a challenge upon negative symptoms,
including depression and emotional instability, or best, dont challenge.
An accidental infraction may come up that provides insight.
b. Occasionally it takes several months to see the difference, or a silent
reaction may mask symptoms.6
c. If the patient later decides to test and is already clean on the glutenfree diet, blood tests will not work unless gluten is reintroduced for
many weeks.10 No! Stool/gene tests are safer.
d. There is no lab confirmation to silence naysayers.
Other Related Tests
Cyrex Labs Array # 2 - Intestinal Permeability Panel focuses on specific
causes of leaky gut. This helps strategize treatment, and is an improvement
over the old lactulose/mannitol test.
22
Cyrex Labs Cross Reactive Foods and Gluten Substitutes, Array #
4. - This specific list checks foods that commonly cross react with gluten
and also foods commonly used to replace gluten. It helps customize an antiinflammatory diet.
Cyrex Labs Predictive Antibody panels determine if or which tissues are
currently under antibody attack. This predicts autoimmunity years ahead of
time and gives the patient advance notice in order to address trouble spots.
Enterolab (www.Enterolab.com) offers several stool based food antibody
panels and gut related stool tests.
What are the lab instructions?
Do I need to consume gluten for testing?
Antibody tests, (blood, saliva, stool), prove a reaction and require recent
gluten consumption. Ideally, test first, then go gluten-free. If the patient is
off gluten, call the lab for advice on the time window before the test will not
work.
Cyrex Labs (www.CyrexLabs.com) tests require prescriptions and a saliva
specimen and/or blood draw. If a doctor is needed to write the script, check
www.thedr.com for a partial list of practitioners who are familiar with Cyrex
Labs. Results are sent to the prescribing doctor.
Enterolab stool specimens are ordered online, kits are sent, home collected
and mailed. No prescription is required. Results arrive on email. Enterolabs
test works for several months after going gluten-free.
Gene tests do not require gluten consumption or a script and can be run at
any time. Genes prove a predisposition to gluten reaction.
Enterolabs gene test is a relatively inexpensive one part test. It is a mail in
cheek swab and reports the patients actual genes.
Gluten Free Society (www.Glutenfreesociety.org) gene test is a two part
(more complete) mail in cheek swab and reports yes or no for both celiac and
gluten sensitivity genes.
For information on testing (I have no financial interests) see:
www.TheGlutenSyndrome.net