avoid gluten (wheat, rye, barley) to cure Celiac Disease and related
autoimmune diseases, Alessio Fasano, U Maryland SOM, Scientific American
2009.07.27 with 68 comments in plain text: Rich Murray 2009.08.03
http://rmforall.blogspot.com/2009_08_01_archive.htm
Monday, August 3, 2009
http://groups.yahoo.com/group/aspartameNM/message/1581
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http://www.scientificamerican.com/article.cfm?id=celiac-disease-insights
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Alessio Fasano is professor of pediatrics, medicine and physiology and
director of the Mucosal Biology Research Center and the Center for Celiac
Research at the University of Maryland School of Medicine. Much of his basic
and clinical research focuses on the role of intestinal permeability in the
development of celiac disease and other autoimmune disorders.
Scientific American Magazine - July 27, 2009
Celiac Disease Insights: Clues to Solving Autoimmunity
Study of a potentially fatal food-triggered disease has uncovered a process
that may contribute to many autoimmune disorders
By Alessio Fasano
My vote for the most important scientific revolution of all time would trace
back 10,000 years ago to the Middle East, when people first noticed that new
plants arise from seeds falling to the ground from other plants -- a
realization that led to the birth of agriculture. Before that observation,
the human race had based its diet on fruits, nuts, tubers and occasional
meats. People had to move to where their food happened to be, putting them
at the mercy of events and making long-term settlements impossible.
Once humans uncovered the secret of seeds, they quickly learned to
domesticate crops, ultimately crossbreeding different grass plants to create
such staple grains as wheat, rye and barley, which were nutritious,
versatile, storable, and valuable for trade. For the first time, people were
able to abandon the nomadic life and build cities. It is no coincidence that
the first agricultural areas also became "cradles of civilization."
This advancement, however, came at a dear price: the emergence of an illness
now known as celiac disease (CD), which is triggered by ingesting a protein
in wheat called gluten or eating similar proteins in rye and barley. Gluten
and its relatives had previously been absent from the human diet. But once
grains began fueling the growth of stable communities, the proteins
undoubtedly began killing people (often children) whose bodies reacted
abnormally to them. Eating such proteins repeatedly would have eventually
rendered sensitive individuals unable to properly absorb nutrients from
food. Victims would also have come to suffer from recurrent abdominal pain
and diarrhea and to display the emaciated bodies and swollen bellies of
starving people. Impaired nutrition and a spectrum of other complications
would have made their lives relatively short and miserable.
If these deaths were noticed at the time, the cause would have been a
mystery. Over the past 20 years, however, scientists have pieced together a
detailed understanding of CD. They now know that it is an autoimmune
disorder, in which the immune system attacks the body's own tissues. And
they know that the disease arises not only from exposure to gluten and its
ilk but from a combination of factors, including predisposing genes and
abnormalities in the structure of the small intestine.
What is more, CD provides an illuminating example of the way such a triad --
an environmental trigger, susceptibility genes and a gut abnormality -- may
play a role in many autoimmune disorders. Research into CD has thus
suggested new types of treatment not only for the disease itself but also
for various other autoimmune conditions, such as type 1 diabetes, multiple
sclerosis and rheumatoid arthritis.
Early Insights
After the advent of agriculture, thousands of years passed before instances
of seemingly well-fed but undernourished children were documented. CD
acquired a name in the first century A.D., when Aretaeus of Cappadocia, a
Greek physician, reported the first scientific description, calling it
koiliakos, after the Greek word for "abdomen," koelia. British physician
Samuel Gee is credited as the modern father of CD. In a 1887 lecture he
described it as "a kind of chronic indigestion which is met with in persons
of all ages, yet is especially apt to affect children between one and five
years old." He even correctly surmised that "errors in diet may perhaps be a
cause." As clever as Gee obviously was, the true nature of the disease
escaped even him, as was clear from his dietary prescription: he suggested
feeding these children thinly sliced bread, toasted on both sides.
Identification of gluten as the trigger occurred after World War II, when
Dutch pediatrician Willem-Karel Dicke noticed that a war-related shortage of
bread in the Netherlands led to a significant drop in the death rate among
children affected by CD -- from greater than 35 percent to essentially zero.
He also reported that once wheat was again available after the conflict, the
mortality rate soared to previous levels. Following up on Dicke's
observation, other scientists looked at the different components of wheat,
discovering that the major protein in that grain, gluten, was the culprit.
Turning to the biological effects of gluten, investigators learned that
repeated exposure in CD patients causes the villi, fingerlike structures in
the small intestine, to become chronically inflamed and damaged, so that
they are unable to carry out their normal function of breaking food down and
shunting nutrients across the intestinal wall to the bloodstream (for
delivery throughout the body). Fortunately, if the disease is diagnosed
early enough and patients stay on a gluten-free diet, the architecture of
the small intestine almost always returns to normal, or close to it, and
gastrointestinal symptoms disappear.
In a susceptible person, gluten causes this inflammation and intestinal
damage by eliciting activity by various cells of the immune system. These
cells in turn harm healthy tissue in an attempt to destroy what they
perceive to be an infectious agent.
A Diagnostic Discovery
Fuller details of the many mechanisms through which gluten affects immune
activity are still being studied, but one insight in particular has already
proved useful in the clinic: a hallmark of the aberrant immune response to
gluten is production of antibody molecules targeted to an enzyme called
tissue transglutaminase. This enzyme leaks out of damaged cells in inflamed
areas of the small intestine and attempts to help heal the surrounding
tissue.
Discovery that these antibodies are so common in CD added a new tool for
diagnosing the disorder and also allowed my team and other researchers to
assess the incidence of the disease in a new way -- by screening people for
the presence of this antibody in their blood. Before then, doctors had only
nonspecific tests, and thus the most reliable way to diagnose the disease
was to review the patient's symptoms, confirm the intestinal inflammation by
taking a biopsy of the gut, and assess whether a gluten-free diet relieved
symptoms. (Screening for antibodies against gluten is not decisive, because
they can also occur in people who do not have CD.)
For years CD was considered a rare disease outside of Europe. In North
America, for example, classic symptoms were recognized in fewer than one in
10,000 people. In 2003 we published the results of our study -- the largest
hunt for people with CD ever conducted in North America, involving more than
13,000 people. Astoundingly, we found that one in 133 apparently healthy
subjects was affected, meaning the disease was nearly 100 times more common
than had been thought. Work by other researchers has confirmed similar
levels in many countries, with no continent spared.
How did 99 percent of cases escape detection for so long? The classical
outward signs -- persistent indigestion and chronic diarrhea -- appear only
when large and crucial sections of the intestine are damaged. If a small
segment of the intestine is dysfunctional or if inflammation is fairly mild,
symptoms may be less dramatic or atypical.
It is also now clear that CD often manifests in a previously unappreciated
spectrum of symptoms driven by local disruptions of nutrient absorption from
the intestine. Disruption of iron absorption, for example, can cause anemia,
and poor folate uptake can lead to a variety of neurological problems. By
robbing the body of particular nutrients, CD can thus produce such symptoms
as osteoporosis, joint pain, chronic fatigue, short stature, skin lesions,
epilepsy, dementia, schizophrenia and seizure.
Because CD often presents in an atypical fashion, many cases still go
undiagnosed. This new ability to recognize the disease in all its forms at
an early stage allows gluten to be removed from the diet before more serious
complications develop.
From Gluten to Immune Dysfunction
Celiac disease provides an enormously valuable model for understanding
autoimmune disorders because it is the only example where the addition or
removal of a simple environmental component, gluten, can turn the disease
process on and off. (Although environmental factors are suspected of playing
a role in other autoimmune diseases, none has been positively identified.)
To see how gluten can have a devastating effect in some people, consider how
the body responds to it in most of the population. In those without CD, the
body does not react. The normal immune system jumps into action only when it
detects significant amounts of foreign proteins in the body, reacting
aggressively because the foreigners may signal the arrival of
disease-causing microorganisms, such as bacteria or viruses.
A major way we encounter foreign proteins and other substances is through
eating, and immune soldiers sit under the epithelial cells that line the
intestine (enterocytes), ready to pounce and call in reinforcements. One
reason our immune system typically is not incited by this thrice-daily
protein invasion is that before our defenses encounter anything that might
trouble them, our gastrointestinal system usually breaks down most ingested
proteins into standard amino acids-the building blocks from which all
proteins are constructed.
Gluten, however, has a peculiar structure: it is unusually rich in the amino
acids glutamine and proline. This property renders part of the molecule
impervious to our protein-chopping machinery, leaving small protein
fragments, or peptides, intact. Even so, in healthy people, most of these
peptides are kept within the gastrointestinal tract and are simply excreted
before the immune system even notices them. And any gluten that sneaks
across the gastrointestinal lining is usually too minimal to excite a
significant response from a normally functioning immune system.
CD patients, on the other hand, have inherited a mix of genes that
contribute to a heightened immune sensitivity to gluten. For example,
certain gene variants encoding proteins known as histocompatibility
leukocyte antigens (HLAs) play a role. Ninety-five percent of people with CD
possess the gene either for HLA-DQ2 or for HLA-DQ8, whereas just 30 to 40
percent of the general population have one of those versions. This finding
and others suggest that the HLA-DQ2 and HLA-DQ8 genes are not the sole cause
of immune hyperactivity but that the disease, nonetheless, is nearly
impossible to establish without one of them. The reason these genes are key
becomes obvious from studies of the function of the proteins they specify.
The HLA-DQ2 and HLA-DQ8 proteins are made by antigen-presenting cells. These
immune sentinels gobble up foreign organisms and proteins, chop them, fit
selected protein fragments into grooves on HLA molecules, and display the
resulting complexes on the cell surface for perusal by immune system cells
called helper T lymphocytes. T cells that can recognize and bind to the
displayed complexes then call in reinforcements.
In patients with CD, tissue transglutaminase released by intestinal
epithelial cells attaches to undigested gluten and modifies the peptides in
a way that enables them to bind extremely strongly to DQ2 and DQ8 proteins.
In consequence, when antigen-presenting cells under intestinal epithelial
cells take up the complexes of tissue transglutaminase and gluten, the cells
join the gluten to the HLAs and dispatch them to the cell surface, where
they activate T cells, inducing the T cells to release cytokines and
chemokines (chemicals that stimulate further immune activity). These
chemicals and enhancement of immune defenses would be valuable in the face
of a microbial attack, but in this instance they do no good and harm the
intestinal cells responsible for absorbing nutrients.
CD patients also tend to have other genetic predispositions, such as a
propensity for overproducing the immune stimulant IL-15 and for harboring
hyperactive immune cells that prime the immune system to attack the gut in
response to gluten.
Guilt by Association
What role might antibodies to tissue transglutaminase play in this
pathological response to gluten? The answer is still incomplete, but
scientists have some idea of what could happen. When intestinal epithelial
cells release tissue transglutaminase, B cells of the immune system ingest
it -- alone or complexed to gluten. They then release antibodies targeted to
the enzyme. If the antibodies home in on tissue transglutaminase sitting on
or near intestinal epithelial cells, the antibodies might damage the cells
directly or elicit other destructive processes. But no one yet knows whether
they, in fact, cause such harm.
In the past nine years my colleagues and I have learned that unusual
intestinal permeability also appears to participate in CD and other
autoimmune diseases. Indeed, a growing body of evidence suggests that
virtually the same trio of factors underpins most, and perhaps all,
autoimmune diseases: an environmental substance that is presented to the
body, a genetically based tendency of the immune system to overreact to the
substance, and an unusually permeable gut.
Finding the Leak
It is fair to say that the theory that a leaky gut contributes to CD and
autoimmunity in general was initially greeted with great skepticism, partly
because of the way scientists thought of the intestines. When I was a
medical student in the 1970s, the small intestine was described as a pipe
composed of a single layer of cells connected like tiles with an impermeable
"grout," known as tight junctions, between them. The tight junctions were
thought to keep all but the smallest molecules away from the immune system
components in the tissue underlying the tubes. This simple model of the
tight junctions as inert, impermeable filler did not inspire legions of
researchers to study their structure, and I was among the unenthused.
It was only an unexpected twist of fate, and one of the most disappointing
moments of my career, that drew me to study tight junctions. In the late
1980s I was working on a vaccine for cholera. At that time, the cholera
toxin was believed to be the sole cause of the devastating diarrhea
characteristic of that infection. To test this hypothesis, my team deleted
the gene encoding the cholera toxin from the bacterium Vibrio cholerae.
Conventional wisdom suggested that bacteria disarmed in this way would make
an ideal vaccine, because the remaining proteins on a living bacterial cell
would elicit a strong immune response that would protect against diarrhea.
But when we administered our attenuated bacteria to volunteers, the vaccine
provoked enough diarrhea to bar its use. I felt completely disheartened.
Years of hard work were literally down the toilet, and we were faced with
two unattractive options: giving up and moving on to another research
project or persevering and trying to understand what went wrong. Some
intuition that there was more to this story prompted us to choose the
latter path, and this decision led us to discover a new toxin that caused
diarrhea by a previously undescribed mechanism. It changed the permeability
of the small intestine by disassembling those supposedly inert tight
junctions, an effect that allowed fluid to seep from tissues into the gut.
This "grout" was interesting after all.
Indeed, at nearly the same time, a series of seminal discoveries clarified
that a sophisticated meshwork of proteins forms the tight junctions;
however, little information was available on how these structures were
controlled. Therefore, the discovery of our toxin, which we called the
"zonula occludens toxin," or Zot (zonula occludens is Latin for "tight
junction"), provided a valuable tool for clarifying the control process. It
revealed that a single molecule, Zot, could loosen the complex structure of
the tight junctions. We also realized that the control system that made this
loosening possible was too complicated to have evolved simply to cause
biological harm to the host. V. cholerae must cause diarreha by exploiting a
preexisting host pathway that regulates intestinal permeability.
Five years after the formulation of this hypothesis, we discovered zonulin,
the protein that in humans and other higher animals increases intestinal
permeability by the same mechanism as the bacterial Zot. How the body uses
zonulin to its advantage remains to be established. Most likely, though,
this molecule, which is secreted by intestinal epithelial tissue as well as
by cells in other organs (tight junctions have important roles in tissues
throughout the body), performs several jobs -- including regulating the
movement of fluid, large molecules and immune cells between body
compartments.
Discovery of zonulin prompted us to search the medical literature for human
disorders characterized by increased intestinal permeability. It was then
that we first learned, much to my surprise, that many autoimmune diseases --
among them, CD, type 1 diabetes, multiple sclerosis, rheumatoid arthritis
and inflammatory bowel diseases -- all have as a common denominator aberrant
intestinal permeability. In many of these diseases, the increased
permeability is caused by abnormally high levels of zonulin. And in CD, it
is now clear that gluten itself prompts exaggerated zonulin secretion
(perhaps because of the patient's genetic makeup).
This discovery led us to propose that it is the enhanced intestinal
permeability in CD patients that allows gluten, the environmental factor, to
seep out of the gut and to interact freely with genetically sensitized
elements of the immune system. That understanding, in turn, suggests that
removing any one factor of the autoimmunity-causing trinity -- the
environmental trigger, the heightened immune reactivity or the intestinal
permeability -- should be enough to stop the disease process.
Therapies to Topple the Trinity
As I mentioned before, and as this theory would predict, removing gluten
from the diet ends up healing the intestinal damage. Regrettably, a lifelong
adherence to a strict gluten-free diet is not easy. Gluten is a common and,
in many countries, unlabeled ingredient in the human diet. Further
complicating adherence, gluten-free products are not widely available and
are more expensive than their gluten-containing counterparts. In addition,
sticking perfectly over years to any diet for medical purposes is
notoriously challenging. For such reasons, diet therapy is an incomplete
solution.
Consequently, several alternative therapeutic strategies have been
considered that disrupt at least one element of the three-step process.
Alvine Pharmaceuticals in San Carlos, Calif., has developed oral
protein-enzyme therapies that completely break down gluten peptides normally
resistant to digestion and has an agent in clinical trials. Other
investigators are considering ways to inhibit tissue transglutaminase so
that it does not chemically modify undigested gluten fragments into the form
where they bind so effectively to HLA-DQ2 and HLA-DQ8 proteins.
No one has yet come up with safe and ethical ways to manipulate the genes
that make people susceptible to disease. But researchers are busy developing
therapies that might dampen some of the genetically controlled factors that
contribute to the immune system's oversensitivity. For example, the
Australian company Nexpep is working on a vaccine that would expose the
immune system to small amounts of strongly immunogenic forms of gluten, on
the theory that repeated small exposures would ultimately induce the immune
system to tolerate gluten.
With an eye toward blocking the intestinal barrier defect, I co-founded Alba
Therapeutics to explore the value of a zonulin inhibitor named Larazotide.
(I am now a scientific adviser for Alba and hold stock options, but I no
longer participate in making decisions for the company.) Larazotide has now
been tested in two human trials examining safety, tolerability and signs of
efficacy in celiac patients who ate gluten. These were gold-standard
trials -- randomized, placebo-controlled tests in which neither the drug
deliverers nor the patients know who receives treatment and who receives a
sham, until the trial is over.
Together the tests showed no excess of side effects in patients given
Larazotide rather than the placebo. More important, the first, smaller study
demonstrated that the agent reduced gluten-induced intestinal barrier
dysfunction, production of inflammatory molecules and gastrointestinal
symptoms in celiac patients. And the second, large study, reported at a
conference in April, showed that CD patients who received a placebo produced
antibodies against tissue transglutaminase but that the treated group did
not. As far as I know, this result marks the first time a drug has halted an
autoimmune process, interfering specifically with an immune response against
a particular molecule made by the body. Other drugs that suppress immune
activity act less specifically. Recently Alba received approval from the
U.S. Food and Drug Administration to expand studies of Larazotide to other
autoimmune disorders, including type 1 diabetes and Crohn's disease.
These new prospects for therapy do not mean that CD patients can abandon
dietary restrictions anytime soon. Diet could also be used in a new way.
Under the leadership of Carlo Catassi, my team at the University of Maryland
has begun a long-term clinical study to test whether having infants at high
risk eat nothing containing gluten until after their first year can delay
the onset of CD or, better yet, prevent it entirely. "High risk," in this
case, means infants possess susceptibility genes and their immediate family
has a history of the disorder.
We suspect the approach could work because the immune system matures
dramatically in the first 12 months of life and because research on
susceptible infants has implied that avoiding gluten during the first year
of life might essentially train that developing immune system to tolerate
gluten thereafter, as healthy people do, rather than being overstimulated by
it. So far we have enrolled more than 700 potentially genetically
susceptible infants in this study, and preliminary findings suggest that
delaying gluten exposure reduces by fourfold the likelihood that CD will
develop. It will be decades, however, until we know for certain whether this
strategy can stop the disease from ever occurring.
Given the apparently shared underpinning of autoimmune disorders in general,
researchers who investigate those conditions are eager to learn whether some
therapeutic strategies for CD might also ease other autoimmune conditions
that currently lack good treatments. And with several different approaches
in the pipeline to treat CD, we can begin to hope that this disease, which
has followed humanity from the dawn of civilization, is facing its last
century on earth.
A Clue to Delayed Onset
People with celiac disease are born with a genetic susceptibility to it. So
why do some individuals show no evidence of the disorder until late in life?
In the past, I would have said that the disease process was probably
occurring in early life, just too mildly to cause symptoms. But now it seems
that a different answer, having to do with the bacteria that live in the
digestive tract, may be more apt.
These microbes, collectively known as the microbiome, may differ from person
to person and from one population to another, even varying in the same
individual as life progresses. Apparently they can also influence which
genes in their hosts are active at any given time. Hence, a person whose
immune system has managed to tolerate gluten for many years might suddenly
lose tolerance if the microbiome changes in a way that causes formerly quiet
susceptibility genes to become active. If this idea is correct, celiac
disease might one day be prevented or treated by ingestion of selected
helpful microbes, or "probiotics."
Note: This article was originally printed with the title, "Surprises from
Celiac Disease."
Further Reading
Updates: Whatever Happened to Virus-Built Batteries?
What is histoplasmosis?
Autism and Antibodies
Infected with Insanity: Could Microbes Cause Mental Illness?
T Cell Turnoff
Fact or Fiction?: Stress Causes Gray Hair
A New "Designer" Treatment for Multiple Sclerosis
Can the Ravages of Dementia in HIV/AIDS Be Arrested?
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Lisa Kuntz at 09:34 AM on 07/21/09
I am excited that such a readable & thorough article has appeared in the
Scientific American. CD in my family was diagnosed with the assistance of
an Integrated Health Practitioner, not via a traditional medical practice.
I hope the article will raise the awareness of the both the medical
profession & general public. For my daughters & myself, having an accurate
diagnosis of the cause of nebulous symptoms has altered our lives.
elizllo@... at 09:38 AM on 07/21/09
The illustrations in this article delivered to my mailbox today, allow the
complexities of the science of gluten intolerance to be easily understood by
everyone.
For those of us with Irish, Scandinavian, or American Indian genetic
background, as well as others of us, gluten intolerance may very well be the
open door for many of the diseases of inflammation and aging.
Since eliminating the wheat family two years ago, my thyroid has calmed
down, my osteopenia hip pain has ended, my digestion is uneventful and
healthy, and my extra weight has become past history.
As I re-engineered my recipes for comfort foods like mac and cheese, pizza,
lasagna, chocolate chip cookies, brownies, and others, I decided to share my
work, in my book entitled, Gluten Freedom EveryWay Comfort Foods Cookbook.
I give presentations sharing my story and helping people understand that
illness and aging don't have to go together.
Could the secret to reducing health care costs, as well as balancing the
national debt, be hiding in eliminating the most common food in the American
diet from the plates of those affected? It's a simple question and one I ask
myself every day.
Elizabeth Lowe
Newport News. Virginia
Ellen in Maryland at 04:56 PM on 07/21/09
Thank you for publishing such a well-written and engaging article. I have
celiac disease and am extremely grateful for the author's important work on
this topic!
Karen2 at 04:59 PM on 07/21/09
If undiagnosed celiacs might cost $25,000 per consumer (~$75 billion) and
even much more money (possibly $ 50 billion) for medical treatment of
chronic conditions and types of health crisis caused by missed diagnosis of
celiac (such as colon cancer), and throw in another say, $50 billion for
odds and ends to deal with other types of effects - like self-medicating
(substance abuse), poor general functioning and productivity (driving and
other accidents) and restructuring of educational and social programs
(learning disability, behavioral disorders) - - -
Why is the medical professional community not mandating the re-education of
medical practitioners and the testing of patients to find those who might
have been overlooked? Do we need to spend another 6 years studying the
financial benefits of diagnosis ?
Why is it not a Standard to test patients who have symptoms of atypical
nature? When do these symptoms become "legitimate" celiac identifiers?
Why is there a home test for celiac in Canada and many other countries,
while the FDA has not approved it for sale to us?
kclancy at 05:01 PM on 07/21/09
This is far and away the best article I have read on gluten intolerance,
inflammation and disease. Kudos to Fasano for such an accessible article. I
am both gluten intolerant and a researcher in food intolerances, and am glad
to have something to give to my family to educate them.
JeanneTX at 06:32 PM on 07/21/09
I am one of the many people who used the testing provided by Dr. Fasano's
EnteroLab in Texas. Though I do not have a DQ2 or DQ8 gene, I have two DQ3
genes, which manifest in a strong gluten intolerance, along with a strong
intolerance for dairy, soy, and more. Without those tests, I would have
been a different person, trying to live with issues as far ranging as
inability to focus my eyes to extreme joint and ligament pain to my tailbone
moving out of place, and much more. I am extremely thankful for his
research.
Jeanne in Texas
pgs at 10:25 PM on 07/21/09
The following is a direct response to this comment.
Dr. Kenneth Fine is the director of Entero Lab. I, too, utilized his
services.
pgs at 10:26 PM on 07/21/09
Entero Lab is run by Dr. Kenneth Fine.
carlson1143 at 01:03 AM on 07/22/09
Dr Fine is a recovered Gluten Intolerant. I come from a huge family with
gluten intolerant problems. He by far is the most respectable expert for our
situation. I listen to him out of respect for his insight and wit. He humbly
figured it out for himself and now for me and dozens of my family. God Bless
Dt Fine.
nogluten4me at 09:00 AM on 07/22/09
The following is a direct response to this comment.
In response to Karen2's question as to why the medical community is not
mandating the re-education of MD's . I feel the answer was in the figures in
your post. There is no doubt that "billions" are spent each year treating
the symptoms of undiagnosed CD. For this reason there is too much money at
stake for the labs, drug companies and repeated visits to the doctor if
suddenly a trial gluten-free diet becomes the "first step" toward finding
out if the person is gluten intolerant. If you recall in the article the
part about the connection between grain shortages during WWII and the
decline of CD symptoms you can understand that it was not an expensive test
that produced this conclusion but simply the "process of elimination". The
same thing would occur if one were to do an elimination diet on their own.
Most of us however would not think to do this without the blessing of our
primary care MD. If the doctors were unwilling or unable to suggest this on
their own for whatever reason (money or lack of knowledge) I am afraid we
cannot expect much to change in the near future. This is a perfect example
of why healthcare is so expensive.
Ann D at 11:21 AM on 07/22/09
I am blown away at the potential medical revolution from addressing gluten.
As a 55-year old female chemist who first began a gluten, casein, and soy
free diet 8 months ago (first diagnosed 6 months ago), I know what "could
have been" if this had been diagnosed as a child with symptoms that would be
obvious today. I grew up having so many expensive tests and tx for symptoms
that included GI, infertility, spontaneous abortion (we are childless),
fibrocystic breasts, eczema, chronic bladder/vaginal infections, diarrhea,
migraines, sinusitus--surgeries & more CTs & MRIs than I can count.
No physician ever suggested gluten as a cause; even today many have never
heard about it. At age 30 I stopped eating most wheat after noticing that
this helped stop diarrhea and a sunburned-looking facial reddness right
after eating wheat, or upon exercising (family called it bread red. ) In
2005 a GI doctor, upon hearing this, did the intestinal biopsy, but told me
it was negative so I was not celiac and could still have gluten. I had been
eating a little wheat and hidden gluten until Dec. 2009 when I read more
research suggesting links to diabetes, cancer, dementia, etc. I began a
strict gluten free diet then and immediately began to feel better. Now 8
months later I feel better than I ever have in life, even as a youth. I
observed that avoiding dairy and soy helped much, too. Not having
digestive symptoms was a thrill; I now feel so alert, happy, energetic.
More surprisingly, an assortment of other pesky problems that I have lived
with much of my life went away; as a scientist this leaves me flabbergasted.
I list these here as evidence to maybe add puzzle pieces for researchers,
physicians, and those with shared symptoms: Since going gluten/casein/soy
free, no more: brain fog (feeling drugged), acne rosacea, itchy oozy
eczema, arthritis, hypertension, chronic tendinitis in elbows, tinnitus,
bladder incontinence (when sneezing, coughing, laughing, sometimes urgency),
toenail fungus (go figure!), chronic vaginal yeast/B. vaginitis infections,
sinusitis (can now wake up breathing through my nose), fatigue, and even
having 1 or 2 swollen taste buds every time I ate tangy fruits (tomatoes,
citrus, melons--now this doesnt happen). Whether these symptoms went due
to improved nutrient absorption or from toxin removal, I dont know. I just
know that researchers in this area are onto something very, very big. The
implications to healthy living, healthcare costs, and government and private
insurance are mind-boggling!
Jennifer in Novato at 03:27 PM on 07/22/09
I'm particularly interested in the late onset of celiac disease, which
happened to me. What caused the bacteria in my intestines to change? I'm
hopeful they can retrain my gut to accept gluten again some day.
GFMSMom at 08:42 PM on 07/22/09
I am the perfect example of linking intestinal permeability and Celiac
disease with other autoimmune diseases. I have Multiple Sclerosis, and
after much research and with the help of excellent alterntive practitioners,
I was tested for celiac disease. After testing positive for CD and
allergies to other food proteins (casein and egg), changing my diet
accordingly, and healing my digestive tract, I have eliminated all my
symptoms of course of CD, but also Multiple Sclerosis. It has been 3 years,
and the change in my health has been profound. So many people are skeptical
of using diet to treat MS, but for me it has been a miracle. I wish that
others seeking conventional treatment for MS, and other autoimmune diseases
would also get tested for CD. I will also add, that I was considered a
non-symptomatic celiac, for I had no digestive distress that others see as
the hallmark symptom. I was only diagnosed after I sought alternative
treatment for my newly diagnosed Multiple Sclerosis.
I will save this article for the naysayers.....
wordsworth at 09:20 PM on 07/22/09
I don't buy "nogluten4me's" conspiracy theory that says some remarkable
collusion (as if such a thing were possible) between doctors, labs and drug
companies is somehow keeping physicians from being educated about CD. The
reality is that many CD symptoms are common to many diseases and disorders.
It's not that most doctors don't know about CD - it's that it might not be
their "top of mind" thought when they see certain things. My wife was
diagnosed with CD not because of any intestinal symptoms, but because she
broke her foot twice for little obvious reason. The doctor sent her to a
metabolic specialist, who suspected and eventually confirmed CD.
Greater awareness would be great, but the lack of it is not the result of
some massive conspiracy or because drug companies (which get nothing from
CD), labs (which get very little) or physicians are milking it to make
another buck.
nogluten4me at 06:32 AM on 07/23/09
The following is a direct response to this comment.
After reading the post by wordsworth I must admit how silly my comments were
regarding a conspiracy. I agree that greater awareness is the key. Thanks
for the reply.
John from Concord at 11:21 AM on 07/23/09
I was treated for chronic depression, ADD, something not unlike chronic
fatigue syndrome that was attributed to the Addison's Disease I developed at
age 20, and chronic sinusitis for many years. All of those things (not the
Addison's itself, but that damned fatigue and "brain fog") went away within
days when I cut gluten out of my diet after receiving a Celiac diagnosis
three months ago, at age 42. Within days! My mother, a nurse, now believes
that I developed it at age 3. It is a profound and odd thing to be an adult,
in one's 40s, married, with a career one likes, and to find that one's
physical, mental, and emotional capabilities are -- suddenly -- much greater
than one had believed, with nothing more than a dietary modification to
credit.
Craig_S at 11:44 AM on 07/23/09
I hope this helps your study, my child who is now 6.5 years old has been
gluten free for 4.5 years. He was diagnosed 6 months after he stopped breast
feeding. He rapidly lost weight could not walk, climb, and at the end could
not hold up his head. He was emaciated, had a distended stomach. Once he
went gluten free after doctors suggested MD, brain cancer, cystic fibrosis
(during the six months of testing) he made a miraculous recovery in 2-4
weeks of diet change. The rest of the family was tested for CD and found
that my 8 yo son was also CD. I tested negative, however I had a bout with
lyme, and babesios, then traveled to India for work. I became very sick in
India and started going downhill after returning to the US. I underwent
massive amounts of antibiotics, both oral and IV. I displayed classic CD
and classic lyme, joints, skin lesions, and neuroborreliosis including
aphasia. When all else failed over an 18 month period of antibiotics, I
finally went gluten free. After 4 months of GF I feel great and all my
symptoms are gone, being horribly sick for nearly two years is no picnic,
particularly when it affected my thought process and ability to speak. I am
46 years old so you have some idea of how late in life dramatic symptoms can
appear. My children are thriving, thanks to GF and so am I. My sister was
diagnosed at 40, years after the family accused her of being bulimic all her
life due to her inability to gain weight and constant sickly appearance,
were we ever wrong.
LindainCA at 05:16 PM on 07/23/09
Thank you , SA for the wonderful article! As someone with Celiac's Disease
(my daughter and partner have it as well), I'm thankful that the disease and
its health repercussions are becoming more mainstream. In my teens, I was
misdiagnosed for about 7 years (which is common, from anectdoctal evidence
of others). I cannot say strongly enough; for those with Celiac's, avoiding
gluten is not a lifestyle choice, it is a necessity.
Re: Karen2's questions about testing...Kimball Genetics in the States has a
very convinient cheeek swab DNA kit available which confirms whether one is
positive for the DQ2 and DQ8 genes; their test also includes the alleles for
each gene. Some health insurance pays for it, others do not. In our case,
insurance did not pay, but we felt the cost was well worth it in order to
confirm our daughter's status before she entered school where we are not
able to control and monitor her food intake as closely.
Cheers, and thanks again, SA for a wonderful, well written, thorough and
enlightening article!!
Linda, CA
katyak at 09:07 AM on 07/24/09
As a medical student and gluten free diet adherent, I was fascinated by the
discovery of a possible drug to inhibit leaky gut. I'm also on the midst of
studying V. cholera and its toxins and I will never forget its action. Thank
you to the scientists who continue to study this disease. I hope to join
your ranks one day (in the near future!).
sunstruck1 at 01:35 PM on 07/24/09
The following is a direct response to this comment.
I did precisely that - an elimination diet on my own. My 3.5 year old son,
who couldn't hold food down and had "failure to thrive", on our second full
celiac-free day, asked for breakfast 3 times! He began recovery in 24 hours,
and I am (at 47) still recovering. Of course, I know now we may never be
properly diagnosed because we are eating right and no longer causing the
damage to our villi crucial for diagnosis (at this time, anyway). But we
feel better, and nothing can make me go back to gluten. I still have muscle
and joint pains, but I have no migraines, and the cramping I thought was
from fibroids is gone. There are other issues to be examined (I have thyroid
problem of low T3 that my primary care physician is treating and not
ignoring - the way the specialist she sent me to did!) but perhaps I'm on my
way to learning what autoimmune problems may be causing me to "prematurely
age" - or at least, that's what it felt like! I too appreciate this
article.
larkalt at 05:45 PM on 07/24/09
I probably have celiac disease, but I've kept on developing new food
intolerances even with a gluten-free diet. So I probably have a leaky gut
for some reason.
I sure hope that if Alba starts selling a drug to stop leaky gut, it won't
have allergens in the fillers!!! But it's my dismal expectation that it
will.
Stacie at 06:02 PM on 07/24/09
I was diagnosed with Celiac Desease when I was 2 years old - that was 43
years ago. Most of my life no one knew what was going on, not even doctors.
My parents suffered watching me go through the torture of CD. They still
tear up today when reflecting on this time. It is only in the last 10 years
or so have I felt "normal" in the sense that others could finally understand
what I was living, that I was not crazy and they need not give up on
treatment for other physical problems I have since encountered.
My CD was so misunderstood that I was separated while in kindergarten from
the other students at snack time - because they were eating graham crackers
and I could not.
My elder sister has since been diagnosed (when she was 28 years old) as well
as my mother - who thought all along she had it but had not been diagnosed.
AngelaE. at 04:45 AM on 07/25/09
My six year old son who was born weighing almost 9 pounds, developed failure
to thrive and dropped to the bottom 1 percentile of weight by 17 months of
age. He had a speech delay, behavioral problems, and sensory issues. His
doctor kept ignoring our concerns about his lack of weight gain and told us
to be happy he wasn't overweight. He was diagnosed with autism at age 4 1/2.
Fortunately, we took him to an autism specialist who told us to put him on a
gluten free and casein free (GFCF) diet. Within days his symptoms of autism
began to disappear. He does not have a formal diagnosis of CD, because his
blood tests came back negative after being GF for 4 months. He is doing very
well today and most people would never guess was diagnosed with autism.
I am 45 y/o and was diagnosed with celiac disease by intestinal biopsy one
month ago after several months of severe indigestion. After going on a
strict GF diet my digestive symptoms disappeared completely. I have a
history of anemia, unexplained miscarriages, and yeast infections.
Aside from preventing untold suffering, I am certain that routine screening
for CD would save our economy billions of dollars in unecessary tests and
medical procedures.
robert schmidt at 09:54 AM on 07/25/09
An excellent article; well written, easily understood, with solid science
backing up the conclusions as well as clearly defined "next steps". Articles
like this are why I read scientific american. Please, keep up the good work.
larkalt at 10:04 AM on 07/25/09
The following is a direct response to this comment.
I relate to what you said a lot. I'm also an analytical person, and I was
just so shocked to find the orthodox medical system, which we are taught to
trust, was so horribly wrong.
You may find after a year or so that it's not limited to gluten, dairy and
soy. Food sensitivities often surface in stages. That happened to me.
And now, the only foods I can eat that I ate regularly while eating gluten
are lettuce, radishes and vanilla beans.
The new diet reduced my anxiety, depression and anger a LOT. Also I stopped
being "hypoglycemic" - getting jittery after eating sweets. And much less
joint pain, "brain fog (feeling drugged)", and less sinus inflammation.
"I am blown away at the potential medical revolution from addressing
gluten. As a 55-year old female chemist who first began a gluten, casein,
and soy free diet 8 months ago (first diagnosed 6 months ago), I know what
"could have been" if this had been diagnosed as a child with symptoms that
would be obvious today. I grew up having so many expensive tests and tx for
symptoms that included GI, infertility, spontaneous abortion (we are
childless), fibrocystic breasts, eczema, chronic bladder/vaginal infections,
diarrhea, migraines, sinusitus--surgeries & more CTs & MRIs than I can
count. "
Jeff C. at 11:23 PM on 07/25/09
Fascinating article. The comments regarding the difficulties of lifetime
adherence to the gluten-free diet struck home with me. My sister, years
after a positive diagnosis, lapsed back into her old eating habits and ended
up in the ER malnourished, emaciated, and with severe neurological problems.
She is fine now, but denial almost killer her.
I am very surprised how a six page article discussing gluten intolerance,
dietary peptides and leaky gut could completely omit a single reference to
autism. So many autistic children have made remarkable recoveries with
gluten-free and/or casein-free diets specifically due to the elimination of
peptides in the bloodstream (from leaky gut). Wouldn't the treatment
advances described have huge implications in treating the rapidly expanding
ranks of autistic kids? Or does saying that risk the wrath of the American
Academy of Pediatricians?
royozanne at 06:04 PM on 07/26/09
This article shows that the medical establishment is slowly coming along,
however, still suggesting solutions based upon pharmaceutical intervention
rather than to correct mistakes in living.
The alternative medical community has long recognized this triad of
autoimmune disease stimulating factors and has been busy addressing it in
effective, wholistic approaches for many years.
The single most important step is to "break the vicious cycle by teaching
parents to become healthy before they conceive children, take the necessary
steps to give birth to healthy babies and continue to raise them in a
healthy manor until adulthood.
These children have intact, healthy intestinal tracts. They have no CD or
any other autoimmune diseases and they accomplish this without taking any
pharmaceutical drugs.
There are 3 main steps to raising children in this way, which should be
followed by every family.
Step 1: Eat nutrient rich foods following the principals of proper
nutrition used by healthy people the world over for thousands of years.
These principles have been largely discarded in the last 200 years in favor
of an industrialized food system.
These principles were carefully delineated by Dr Weston A Price in the
1930's and are taught today through the Weston A Price Foundation.
Step 2. Avoid toxins that are unnecessary and degrade your health as well
as contribute to a leaky gut and an overactive immune system. Examples are;
heavy metals like mercury (in amalgam dental restorations), petrochemicals
like the industrial PCB's, pesticides, fertilizers, most pharmaceutical
drugs and plastics, radioactivity and electromagnetic pollution coming from
improper wiring and filtering of our electrical equipment, cell phones,
microwave ovens and towers.
Step 3. Find a Healing Art that you can depend upon to build your health
over time. Well done healing arts build your bodies health, strengthening
immunity and resilience in many ways. This greatly aids in preventing any
type of chronic disease from gaining a foothold. Examples are Ayurveda,
Traditional Chinese and Homeopathic Medicine.
Parents that follow these 3 steps are rewarded with vibrant, robust, good
natured , healthy, children that grow into well balanced, healthy,
productive adults without chronic diseases or the need of expensive medical
treatments.
People following these guidelines, and there are thousands that do, have
health care costs that are often less than $500/year for entire families.
Roy Ozanne, MD, HMD
wholehealthprograms.net
Dr. Karen J. Krahl, D.C. at 06:51 PM on 07/26/09
I have probably been gluten intolerant my whole life and have had
malabsorption syndrome since I was a child, resulting in pica, and iron
deficiency anemia among other things. It wasn't until I started studying
with the Institute for Functional Medicine, and did the "physician health
thyself" thing, that I started connecting the many dots, that lead to
discovering my own undiagnosed problems. Laboratory testing and elimination
diets later, I realized I had the genetic propensity, a positive malfeasance
A test..which not all gluten intolerants will show positive for, + Anti-TPO
antibodies test, showing my immune system was attacking my thyroid, and
later the beginning of Hashimoto's Hypothryoiditis. Asthma, eczema and
number of other problems are also connected. Though I'm a practicing
chiropractor and have studied nutrition for years, even practiced
macrobiotics many years ago, it took me awhile to connect the multiple
effects that were being caused by gluten. Also more is being written about
this and studied as the years go by, and our science is getting more
refined. As to the above comment about MD's; in my experience doctors are
very slow to change their minds or habits in light of new information, and I
believe it's more part of human nature to cling to old beliefs and patterns
of behavior rather than change, that it is some kind of malfeasance or
sinister collaboration with the drug industry.
I do blood tests, genetic testing, and the elimination diet with my patients
with good success. I believe that several individuals in my family were
misdiagnosed with IBS, who were really gluten sensitive. Recent writings
about "zonulin", which may be what's making those with gluten sensitivity
more sensitive in the first place, i.e. having a more permeable gut to begin
with, makes a lot of sense. We must all keep open minds, read, and use a
systems biology model of diagnosis in use, which connects the multiplicity
of effects in different organs and physiologic processes simultaneously,
rather than coming up with one "name" or diagnosis, and medicating for it.
Rather than look at the broad reaching, holistic matrix of factors causing
symptoms and diseases, medicine has been using a reductionist model of
exclusionary diagnosis for too long, and it is now significantly outdated.
patriciagwheeler at 08:28 AM on 07/27/09
I'm convinced that the drug companies (to some degree) stand in the way of
more studies about gluten intolerance. They have nothing to gain when a
simple cure, such as change in diet, is the main remedy. I suspect that a
change in diet for many uninformed Americans would strongly reduce the
intake of prescription drugs throughout our society, while eliminating many
health issues. It saddens me that more emphasis is not put on diet when we
visit our health practitioners. What is truly unfortunate is that yesterday
I bought one tomato that cost as much as an entire meal at McDonalds!
hannahgreen at 08:51 AM on 07/27/09
Many of my family members have been diagnosed with CD including my mother, 2
brothers, my daughter and youngest son and recently myself. Some were
diagnosed by biopsy and some by change in diet. The authors suggests that
following a strict GF diet in infants until after age 1 may help prevent the
onset of CD. I can say from experience, it does not. My oldest child is
now 30 years old. Our pediatrician suggested with the family history that
we follow a strict diet of nursing only until 6 months, then slowly
introduce solid food with strictly GF foods until at least 12 months of age.
His logic was not that it would prevent CD, but that an older child might
not become so critically ill as quickly and would be easier to diagnose. We
followed this advice strictly, even to the point that they were not placed
in a day care setting or even with relatives until they were at least 18
months old. The 2 youngest children still developed CD.
Wendy Seidl at 10:40 AM on 07/27/09
I am a mother with CD of a 5 yr old and a 1 yr old. I kept both of my
children gluten-free for the first year for two reasons: CD is darned
difficult to diagnose in infants and I didn't want to risk any malnutrition
during such a critical developmental stage and it just seemed to make sense
to me to keep something that causes ME such problems away from them early
on. With my first child, my pediatrician sort of acted like I was a crazy,
overcautious 1st-time Mom, but went along with it. By the time we got
around to my 2nd son though, 4 years later, he agreed it might actually be a
good idea. My in-laws, however, thought I was crazy both times.
Besides the fact that this is a really nifty and informative article about
CD in general, I get to hold up the study with infants to everyone who
thought I was nuts and say, "SEE! I told you so!!!" By the way, both my
sons eat wheat/gluten now and so far, so good. I don't think I developed
the disease until later in life, though (I wasn't diagnosed until my 30's
when I had clearly been suffering from it for years, so I'm not sure of the
exact onset), so I'll continue to keep my fingers crossed.
I agree with previous posters about the medical community being slow to
adjust to new information and I think screening should be more common, given
the repetitive studies showing CD is far more widespread than initially
thought (1 in 133 people? Serriously? And yet the medical community is STILL
resistant to test people, even when they ask?) I went GF on my own after
being sick for years and told there was nothing wrong with me. Then when I
felt better, my doctor actually told me it was all in my head because, "what
you eat could not possibly affect an intestinal disorder". After I got
myself a new doctor (I mean, REALLY), I was finally diagnosed with CD.
Although I cope fairly well, I still hope I have given my children an edge
up with their GF first year so they can avoid all this.
digiterati at 11:20 AM on 07/27/09
My CD symptoms included a constant vibration in my foot and leg, ataxia,
chest pains, skin problems and to a much lesser degree, digestive problems.
Some with CD are "neuro dominant" and I suspect get diagnosed with MS as a
result, as my neurologist suggested I might be. My symptoms disappeared with
gluten elmination. The foot tingling reappears when ANY gluten is consumed.
This is in spite of the fact that I tested negative for CD. (The doctor told
me to resume eating wheat for a month so the results would be accurate. I
lasted 3 days before I couldn't stand it and took the test.) Even with a
negative result, you can't convince me to resume eating gluten.
As to why gluten intolerance is skyrocketing
(
http://www.celiac.com/articles/21859/1/Celiac-Disease-Rates-Skyrocket-Up-400-in-\
Last-50-Years/Page1.html )
,
I suspect several factors beyond the increase from 2% gluten in wheat in the
1950s to 18% today. Scientific American wrote about wheat fungus threatening
the world's wheat supply
(
http://www.scientificamerican.com/article.cfm?id=global-wheat-crop-threatened-by\
-fungus )
Meanwhile, fungicides have been applied, no doubt to the wheat many are
eating today for breakfast, lunch and dinner.
A friend told me that her children became gluten intolerant -- and highly
sensitive to many foods -- during a time when she lived in a house that had
mold in the attic insulation. A couple of years after moving, their health
dramatically improved and their food sensitivities disappeared.
Those of us with CD may be the canaries in the coal mines. Antibiotics,
pesticides, exposure to mold, fungicides in food, environmental pollution --
where's the tipping point for a person's health?
Hang in there, folks. Just yesterday I was in a deli, and the man next to me
was asking about the ingredients in a dish because he was "allergic to
wheat." As more people learn what is really wrong with them, the general
public and food purveyors will stop asking what gluten is and have
increasingly more choices for us.
Soccerdad at 11:43 AM on 07/27/09
The following is a direct response to this comment.
patriciagwheeler,
Enlighten us as to how the drug companies could possibly "stand in the way
of more studies about gluten intolerance". I feel this mistrust of drug
companies, while it may come naturally to some, is unfortunate.
These drug companies have done wonderful things over the past several
decades to develop cures and treatments for many previously debilitating and
crippling diseases. True that there hasn't been equal progress against all
diseases, but drug development is somewhat serendipitous. It's a big
universe of diseases so uneven progress is to be expected. I don't believe
it's intentional, and I believe the men and women who work for these
companies are doing their best on our behalf. Let's just hope our
government, in the name of containing costs, doesn't destroy this industry.
EMed at 12:30 PM on 07/27/09
The following is a direct response to this comment.
I currently work at Johns Hopkins in one of the two labs that test for
clinically diagnostic celiac antibodies. I can tell you that MDs are
required to participate in "Continuing Medical Education," at this hospital
at least. I attended a seminar on celiac last year, and I can say that
since I began working here (only 2 years ago) the number of physician test
requests for celiac (my lab tests for endomysial Ab, the other lab performs
many other related including tissue transglutaminase) has close to tripled,
and we find on average about 1 in 100 requests we receive are positive.
This is only slightly higher than the incidence reported in this article
which leads me to believe that physicians here are beginning to include
these tests for more people with milder or atypical symptoms.
EMed at 12:40 PM on 07/27/09
digiterati: the most common diagnostic test detects antibodies which
disappear pretty much as soon as you begin a gluten free diet, which is why
you may have tested negative. Also, these tests generally test for a
sub-type of antibody called IgA, but a very very small population of celiac
patients are IgA deficient, in which case IgG antibodies should be tested
for. Again though these only appear when you are consuming gluten in your
diet.
ecstatist at 02:01 PM on 07/27/09
Possibly many answers lie in the article's reference that humans had nomadic
diets. Adaptations evolved over tens (or hundreds) of thousands of years
to cope with this diet. It would perhaps be wise to keep as close as
possible to this as a base diet (especially in a diagnostic setting).
As I understand it (memories of The Ascent of Man by Bronowski) wheat was
a chance hybridization of two wild grasses which was then adopted by early
man because of its productivity and easier processibility. He probably ate
neither before this. Similar caveats lie with domesticated milk and meat
consumption. (Note the bred for characteristics of higher fats in both and
who knows what else considering the unnatural diet these animals are fed)
(The extreme example is pate de foeie where one consumes dis_eased (sic)
goose liver)
Processed food primarily adds value to the producer and retailer through
longer shelf life and cheaply manufactured taste enhancers. Simple guide
lines for diet follow.
Eat a wide variety of food. This dilutes any high level toxin that exists
in any particular food.
Eat (buy) unprocessed food that somebody's great grandmother would
recognize.
Do not keep high calorie food that is quickly and easily available.
Significant effort (exercise?) should be required before eating. This
ensures that one builds up a significant hunger before consumption.
Concerning the medical, pharmaceutical conspiracy .
This no doubt occurs to some degree (consciously and subconsciously)
(internal memos of tobacco companies). Note that the law ordains that
company directors' prime responsibility is to their companies' share
holders' profits. This would be a good policy (for all) in an evolved free
market where the LONG term profits are the aim. However because of natural
greed of directors'/role players' personal short term profits/reputations
and consequent political (and market) manipulation, this free market does
not exist. History has taught us that we cannot rely on self administered
ethics . Consumers need to be protected by checks and balances which are
being steadily eroded by political manipulation. Note budget allocations
(and appointments) for FTC (Federal Trade Commission) and FDA whose supposed
aim is to protect consumers from unfair trade practices.
Wake up, STOP, LOOK, THINK, ACT, REPEAT, DUH.
JD at 02:45 PM on 07/27/09
I found the article very informative, but lacking a few things I would like
to know. How does the gluten intolerance trigger bone loss and arthritis?
Is there any more info available on how the connection works? Is anyone
doing any research on reversing bone loss if wheat is eliminated?
thanks
royozanne at 04:18 PM on 07/27/09
For readers that want to have excellent, effective diet therapies and a very
complete explanation of the autoimmune triad of genetics, intestinal health
and diet, please see The Gut and Psychology Syndrome by Dr Natasia
Cambell-McBride.
This is a fabulous book be a doctor that has helped thousands of autistic
and CD childrren to an excellent recovery and includes the science that
makes the picture understandable.
We must come to understand our illnesses in a greater ecological context,
including the ecology of our gut and its interaction with our outer ecology
which includes all the farm chemicals, ecology disrupting antibiotics,
endocrine disrupting industrial chemicals, chlorinated water, GMO foods,
etc.
I am really not an extremist either. I have just been a practicing
physician for 44 years and have consistently seen that poisoning nature
poisons ourselves and by living in harmony with nature we restore harmony in
ourselves.
If we only focus on gluten, there will arise another set of illness to keep
reminding us!
Best wishes,
Roy Ozanne, MD,HMD
wholehealthprograms.net
josepheh at 06:17 PM on 07/27/09
The following is a direct response to this comment.
I would just like to note that not all problems people might have with wheat
in the diet are due to CD, and the person overheard saying they were
"allergic to wheat" may have been telling the simple truth and not
simplifying the complexities of CD for easy communications. I myself have
an allergy to wheat as well as to several other foods. I am reasonably well
informed about CD and am confident it doesn't lie at the root of my
particular dietary challenges. Just as there is such a thing as convergent
evolution, there are also convergent dietary nuisances.
Finally, kudos to the author and to SA for such a well written, well
informed and downright useful article. You have done a great service the
public's education about this important topic.
Yael3 at 10:19 PM on 07/27/09
My husband was first diagnosed with CD when he was less than a year old,
after months of illness. Because of his CD, avoided solids until our
children were 6 months old (exclusively breastfeeding) and off gluten for
the first year. I also continued nursing until they were at least 2 years
old. As others have written, we had friends and family members who thought
we were a little crazy and over-cautious. We don't expect that they are now
immune from developing CD - in fact whenever any of them has a stomach
problem or frequently other illnesses, the first thing our family doctor
does is test them for CD - but it is nice to see evidence that we did the
right thing as far as trying to protect them.
frgough at 10:46 AM on 07/28/09
The following is a direct response to this comment.
Good grief. The marxist conspiracists crawl out of the woodwork at the drop
of a hat.
Folks, it's the FDA that is not approving the home test. That's government.
The funny thing is, even though it's the government holding this back,
people will still blame corporations for somehow evilly influencing said
government.
As always, the state loves it when you think some business is the real
threat to your freedom and prosperity.
rronca at 02:27 PM on 07/28/09
My son has CD and he was exclusively breast-fed until he was over a year old
(he was not interested in food until then). He and I were simultaneously
diagnosed; he was age 8 and I was age 39. It was a great day because we are
so much healthier and happier.
I don't think avoiding gluten for the first year of life will help.
Martin Dubreuil at 04:01 PM on 07/28/09
J'aimerais saluer le courage de mon frere Simon qui a passe e travers de
difficiles moments alors que personne (les medecins) ne savaient ce qu'il
avait. Apres des recherches, il a compris qu'il avait le CD. Cet article
montre qu'enfin, les recherches montrent enfin la veracite de ce mal
complexe en depit des avis de certains medecins qui refusaient il y a
quelques annees de voir un lien entre le gluten et sa maladie.
Martin Dubreuil, Montreal, Canada
jcc at 04:20 PM on 07/28/09
The following is a direct response to this comment.
JD,
Here are some studies on bone loss/osteoporosis/gluten:
http://jccglutenfree.googlepages.com/osteoporosis
Also, some great overview articles which will explain more about nutritional
losses and consequences:
Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD
http://www.aafp.org/afp/980301ap/pruessn.html
Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by
David A. Nelson, JR, MD, MS (AAFP)
http://www.aafp.org/afp/20021215/2259.html
jcc at 04:20 PM on 07/28/09JD,
Here are some studies on bone loss/osteoporosis/gluten:
http://jccglutenfree.googlepages.com/osteoporosis
Also, some great overview articles which will explain more about nutritional
losses and consequences:
Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD
http://www.aafp.org/afp/980301ap/pruessn.html
Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by
David A. Nelson, JR, MD, MS (AAFP)
http://www.aafp.org/afp/20021215/2259.html
kidscoolmom at 04:21 PM on 07/28/09
I became celiac late in life with the disease on both sides of my family.
Two of my three children acquired it in their teenage years. Living w/out
gluten is easy once you get used to it, however, more expensive for any kind
of baked goods. In the last 8 years, I've seen a greatly increased
awareness of celiac and have found many bakeries and restaurants with
gluten-free menus. Word of mouth is a powerful weapon. We can't wait for
the "medical community" which works at a glacial pace and is in the fist of
big pharmaceutical and insurance companies.
geosources at 06:10 PM on 07/28/09
I would like to share my experience with diarrhea and an organic cure that
may help in your research. I skinned my knee with a sea shell of sorts and
ended up with Staphylococcus Aureus. The Doc gave me some antibiotics that
didn't work, so after some blood work I was given a different kind of
antibiotics, which cured the infection but gave me a severe case of
diarrhea. After about a month with diarrhea I spoke to a military doctor,
by chance, he suggested an extract from oregano and recommended the origins
of the oregano oil come from the Mediterranean (it containing 70 % of the
specific chemical). It contains a higher chemical compound than the oregano
from Spain or Mexico. I took four drops in my soup and was cured within
hours. I have suggested this treatment to two of my buddies who came back
from overseas with diarrhea and it worked for them also. I dont know what
it is that's in the oregano oil but it works. Maybe it will help in your
research. Good Luck
SG in Tennessee at 09:25 PM on 07/28/09
The following is a direct response to this comment.
You are so correct - have you written your politicians to support Obama's
health care reform? We need to stick together on this - I have suffered for
3 years with CD problems - and boy, have I gone to doctors and bought
prescription drugs as well as OTC medications. It is awful to think the
SPECIALISTS I went to see never mentioned this possibility nor tested me for
this problem. Finally, my family doctor tested me. What a shame that
AMERICANS have to suffer because of money & pressure from drug companies and
other lobbiests who won't change because of the almighty dollar. SPEAK UP -
support change - we can see how the system doesn't work as it is!
Lynne at 10:02 PM on 07/28/09
The following is a direct response to this comment.
Hi Karen;
There is a very good test that you can order online.My doctor
reccomended it. www.enterolab.com .If you have Celiac you are also
likely to have problems with dairy because the small villi that line your
gut are what secrete lactase that digests dairy.After several months of a no
gluten diet you can usually go back to dairy. Lynne/Scleroderma caused by
celiac
Lynne at 10:06 PM on 07/28/09
Karen,there is a very good test available online www.enterolab.com My
doctor had me take it to see if Celiac might be the reason I got Scleroderma
and my sister who got Lupus.Doc was dead on correct.We both have been on
antibiotics for the last decade and are now in remission.If you have any
questions about the test you can e-mail me and tell you more
lynneandsantos@...
Lynne at 10:11 PM on 07/28/09
The following is a direct response to this comment.
Karen,I forgot to tell you that there are several tests available. Usually
dairy intolorance goes along with Celiac because the tiny damaged villi that
should give you the lactase needed to digest are not working.After a year
totally gluten free I now can have dairy with no problem. Lynne
coryjurentkuff at 11:53 AM on 07/29/09
This article is so fascinating and informative. I was diagnosed with CD two
years ago after years of mysterious stomach issues, and my dad and sister
have Type 1 Diabetes. Seeing the connections between our conditions is
illuminating. I appreciate very much the thorough article you have prepared
on this topic. I learned more today about my disease than I've ever known.
coryjurentkuff at 11:54 AM on 07/29/09
This is a fascinating and informative article. I was diagnosed with CD two
years ago after years of mysterious stomach problems. I appreciate the
thorough article you have prepared on this topic. I learned more today about
my disease than I've ever known.
margebhutch at 01:03 PM on 07/29/09
The following is a direct response to this comment.
Dr. Fasano is not with Enterolab. I believe you are confusing him with Dr.
Fine.
ragaroiox at 01:39 PM on 07/29/09
I think that like lactose intolerance, CD is a vestige of our non
agricultural past. Maybe CD patients experience a gluten reaction stronger
than the average person, but perhaps its not the best for any of us to be
consuming it. Ive heard that across the board gluten tends to increase
inflammation and lower immune system response. Maybe what the wheat grass
proponents say is true, that it was never meant to be eaten as a grain, but
as a grass.
wcabelus at 09:32 PM on 07/29/09
Thank you Dr. Fassano for all your celiac research! I am a biopsy proven
celiac who participated in your 2003 epidemiological study with my young
children. Though my daughter was positively identified as celiac, my sickly
son's screening was found to be "inconclusive" due to his low IgA. Months
after we particpated in the study, I read about an experimental assay to
detect IgG tTG, instead of IgA tTg, in IgA deficient individuals. I asked
your lab assistant, Debby, if she could use my son's pre-gluten free blood
(still in your freezer) to run the assay. She did and he was found to be
very positive! Thank you and your team for going the extra mile for more
difficult cases and thanks for all your hard work and research to bring this
disease to the foreground. Not only did your study identify my son as a
celiac, you discovered his low IgA status. My youngest son, born after the
discovery, was also found to have very low IgA (among other immune
irregularities). Both boys have frequent infections and are seen by a
clinical immunologist. One is on IViG. I wouldn't have been tipped off to
their immune deficiencies/defects if not for your study. Celiac was just
the tip of the iceberg.
srgould at 02:44 AM on 07/30/09
The quote below triggered a memory from my post-grad Animal Science program
of 34 years ago.
"How the body uses zonulin to its advantage remains to be established. Most
likely, though, this molecule, which is secreted by intestinal epithelial
tissue as well as by cells in other organs (tight junctions have important
roles in tissues throughout the body), performs several jobs, including
regulating the movement of fluid, large molecules and immune cells between
body compartments."
In our Protein Nutrition course we learned that in neonatal calves, and I
suspect humans, the tight junctions remain relatively open for the first few
days after birth. We were told that this facilitates the absorption of the
large immumoglobulin molecules from the colostrum, so that the neonate can
obtain an immediate immune protection from the diseases that the mother has
been exposed to. This provides at least some immunity until the neonate's
own immune system begins to function.
Veterinarians have known this for over 30 years. It is the reason for their
recommendation that calves should receive colostrum within a few hours of
birth.
Green Cow
srgould at 02:55 AM on 07/30/09
The quote below brought back a memory of a Protein Nutrition course that I
took during my post-grad program in Animal Science over thirty years ago.
"How the body uses zonulin to its advantage remains to be established. Most
likely, though, this molecule, which is secreted by intestinal epithelial
tissue as well as by cells in other organs (tight junctions have important
roles in tissues throughout the body), performs several jobs-including
regulating the movement of fluid, large molecules and immune cells between
body compartments."
We learned that in neonatal calves - and I expect babies - the tight
junctions remain relatively open for a few days after birth. We were told
that the purpose was to facilitate the absorption of the large
immunoglobulin molecules in colostrum, that carried immune protection for
the diseases that the cow had been exposed to.
Veterinarians have known this for at least 30 years because they used it as
the basis for their recommendation that newborn calves need to receive
colostrum within the first few hours of birth or it would not give effective
immune protection.
R.G.
Sydarta at 12:47 PM on 07/30/09
The following is a direct response to this comment.
Hi Ann, do some research on eating RAW and see if you want to try it out...
I've gotten even better results with a balanced raw diet than just cutting
out the "problem" foods! - syd
leslie at 09:49 AM on 07/31/09 I was found to be "off the charts" when
diagnosed with Celiac through each of the three test - antibody, visual
intestinal inspection, and biopsy - despite the fact that my only "symptom"
was low bone density at a relatively early age (late forties). I will
always feel that my endocrinologist saved my life....
Factsareyourfriend at 03:59 PM on 07/31/09
The following is a direct response to this comment.
While I agree 100% that we as a collective society need to completely
overhaul our lifestyles for general health, let's not forget that lifestyle
alone is not the solution to autoimmunity cases. That is a typical response
made by people who truly do not understand autoimmune disease and/or refuse
to admit that they are useless to patients who have it as they can do
nothing for them.
Autoimmune disease is not new. Type 1 diabetes for example (the severe,
fatal without insulin, typically juvenile onset, unpreventable and
non-weight or lifestyle related kind) has been documented since Egyptian
times. So you can't only blame 'modern' pollution, chemicals, and
lifestyles.
I know MANY young children who have developed autoimmune disorders despite
their parents living 'healthy lifestyles'. They were breastfed, fed only
organic foods, parents avoided chemicals in the house, not allowed to use
plastic bottles, etc. And guess what, they still developed autoimmune
disease. I find it hard for a 'doctor' to say such sweeping statements when
the actual cause for most autoimmune disease is unknown.
Viruses have been linked strongly with autoimmunity in general. Vaccines may
play a role as well if you have 'unlucky' genes. People with autoimmunity
surviving to pass on their genes or preserving their childbearing capability
with modern medicine doesn't help either. So please consider that many
people could and can NOT prevent autoimmune disease in their children. If a
child has the 'right' genes, and encounters the 'right' viruses,
autoimmunity may appear.
I agree 100% that pollution, chemicals, and even magnetic fields may impact
our immune systems, but they are just tipping the scale. Autoimmunity can
happen without them, as evidenced by historical data. To blame the parents
or individuals for autoimmunity is just wrong.
If these substances can trigger autoimmunity in those with less of a genetic
disposition and/or in the absence of another trigger, it still isn't the
fault of the patients or parents. Just how can you avoid the toxic world we
live in today when our entire ecosystem is a garbage dump (air, water,
etc.)?
Let's start working with patients instead of playing the 'blame game', which
'doctors' (I'm not convinced that you are a medical doctor) love to do when
they can't help someone and feel helpless. I agree with some of what you
said, but your conclusion simply is not reality. If curing and preventing
autoimmunity was that simple, no one would have it.
cnelsondooley at 06:03 PM on 07/31/09
Even if your doctor doesn't recommend you get a celiac test, you, as an
educated patient can request your doctor run the test for you. Sometimes
patients have to teach doctors what is important.
There are other tests you might want to know about. I've explained this
here:
http://www.metametrixinstitute.org/post/2009/07/31/testing-for-celiac-disease-an\
d-gluten-sensitivity.aspx
kashby at 07:41 PM on 07/31/09
For those of you diagnosed with Celiac Disease (also Ulcerative Colitis,
Crohn's disease, and Irritable Bowel Syndrome) please go to Amazon and look
up reviews for the book "Breaking the Vicious Cycle: Intestinal Health
Through Diet." These digestive disorders have been successfully treated and
cured since the 1950's through diet - by encouraging growth of good bacteria
in the digestive system in order to heal the leaky gut. I also recommend
"Gut and Psychology Syndrome" for additional information and treatment
through diet (almost the same diet) for autism, schizophrenia, ADD, ADHD,
depression, dyslexia, and dyspraxia.
veggienft at 06:40 AM on 08/01/09
Great article! And the greatest part? ......."Recently Alba received
approval from the U.S. Food and Drug Administration to expand studies of
Larazotide to other autoimmune disorders, including type 1 diabetes and
Crohn's disease."
Using Larazotide to cure non-celiac autoimmunity has been a foregone
conclusion since its inception, because other immune diseases have a very
large cominality with celiac disease. Celiac patients who also have other
autoimmune disease are destined to have all their autoimmunity cured by
larazotide.
If larazotide proves safe and effective, doctors will start curing diseases
heretofore not even recognized as autoimmune diseases.
laranow at 10:20 AM on 08/01/09
after suffering with ulcerative colitis for years - allergy to aspirin
didn't help (as that is the preferred medication for UC) - I discovered,
accidently, that if I stayed away from wheat and wheat products I remained
in remission. I was teated for celiac disease and was told the result was
negative, but my doctor suggested I continue to keep wheat out of my diet
anyway as long as it had a positive effect - I have and for the last 7 years
I have been symptom free.
socwkr at 10:18 PM on 08/02/09
This article is so insightful. I wish to add, from my own experience, that
Dr. Fasano is right on target. For me, the "microbiome" changed when
underwent abdominal surgery to have my gallbladder removed. When I read a
study that concluded that supplemental use of cholostrum could prevent
bacterial dysbiosis prior to abdominal surgery, I was convinced that this is
what happend to me and why my Celiac Disease didn't appear until age 46.
rmforall at 12:55 AM on 08/04/09
Here are unexamined cofactors that impair research, prevention,
diagnosis,and treatment of CD and many other diseases:
formaldehyde in FEMA trailers and other sources (aspartame, dark wines and
liquors, tobacco smoke): Murray 2008.01.30: BM Kapur -- folic acid protects
most people from conversion of methanol into formaldehyde and then formic
acid 2009.07.01
http://rmforall.blogspot.com/2008_01_01_archive.htm
Wednesday, January 30, 2008
http://groups.yahoo.com/group/aspartameNM/message/1508
The FEMA trailers give about the same amount of formaldehyde
daily as from a quart of dark wine or liquor, or two quarts
(6 12-oz cans) of aspartame diet soda, from their over 1 tenth
gram methanol impurity (one part in 10,000),
which the body quickly makes into formaldehyde -- enough
to be the major cause of "morning after" alcohol hangovers.
Methanol and formaldehyde also result from many fruits and
vegetables, tobacco and wood smoke, heater and vehicle exhaust,
household chemicals and cleaners, cosmetics, and new cars,
drapes, carpets, furniture, particleboard, mobile homes, buildings,
leather ... so all these sources add up and interact with many other
toxic chemicals.
folic acid prevents neurotoxicity from formic acid, made by body from
methanol impurity in alcohol drinks [ also 11 % of aspartame ], BM Kapur, PL
Carlen, DC Lehotay, AC Vandenbroucke, Y Adamchik, U. of Toronto, 2007 Dec.,
Alcoholism Cl. Exp. Res.: Murray 2007.11.27 [ actually, a fairly complete
review of recent developments... ]
http://rmforall.blogspot.com/2007_11_01_archive.htm
Wednesday, November 27, 2007
http://groups.yahoo.com/group/aspartameNM/message/1495
formaldehyde, aspartame, and migraines, the first case series,
Sharon E Jacob-Soo, Sarah A Stechschulte, UCSD, Dermatitis
2008 May: Rich Murray 2008.07.18
http://rmforall.blogspot.com/2008_07_01_archive.htm
Friday, July 18, 2008
http://groups.yahoo.com/group/aspartameNM/message/1553
Dermatitis. 2008 May-Jun; 19(3): E10-1.
Formaldehyde, aspartame, and migraines: a possible connection.
Jacob SE, Stechschulte S.
Department of Dermatology and Cutaneous Surgery,
University of Miami, Miami, FL, USA.
Aspartame is a widely used artificial sweetener that has been
linked to pediatric and adolescent migraines.
Upon ingestion, aspartame is broken, converted, and oxidized into
formaldehyde in various tissues.
We present the first case series of aspartame-associated migraines
related to clinically relevant positive reactions to formaldehyde on
patch testing. PMID: 18627677
rmforall at 01:06 AM on 08/04/09
On May 22, my age 41 daughter, after getting weaker and paler since October,
had to rush to the hospital at 10 pm on a Friday night, when a blood test
found dangerously low red blood cell count. She got 3 units of blood and
was home in two days. After weeks of tests, the diagnosis was Celiac
Disease.
Reading the remarkably useful article and the 66 very helpful comments
raises questions in my mind about decades of symptoms in various members of
my family.
The largest support group I know of is GlutenFreeCaseinFreeKids, for
families whose kids have severe reactions to tiny amounts of gluten or
casein (milk protein):
http://groups.yahoo.com/group/gfcfkids/messages
13,891 members, 382,210 posts
Please visit our home website www.gfcfdiet.com which provides the largest
list of possible GFCF foods on the Internet and immediate help and answers
about dietary intervention.
This list, "GFCFKids" is unmoderated and unrestricted.
The principle aim of this list is to provide a discussion forum for parents
of children on the autism spectrum who are avoiding gluten and casein and
other substances in their children's diets.
We hope that the discussions will include practical information and tips on
following a GFCF(etc) diet; scientific research and opinion;
the latest developments in understanding GFCF(etc) diet-related health
problems;
your personal stories and experiences with relation to GFCF(etc) problems;
information on what food is GFCF(etc)and what is not;
tips on how to eat out of the house;
recipes and tips on how to cook and prepare GFCF(etc) food; what vitamins,
minerals, herbs and other supplements may be appropriate for a child with
autism;
how to cope with difficult diet demands, plus support for parents.
Appropriate topics for discussion on the list include anything at all
related to diet and autism spectrum disorders -- including GFCF but also
yeast, nitrates/nitrites, dyes, vitamins, minerals, supplements, dealing
with teachers, friends, schools, outings, siblings, testing, etc...
Please keep general off topic information off the list as much as possible
and clearly mark off-topic posts.
Thank you, Cara DeHart Lewis Listowner, GFCFKids
See also www.notmilk.com by Robert Cohen, a feisty father of four daughters
and gourmet vegan chef.
Also www.vegsource.com
And www.drmcdougall.com
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