<<Disclaimer: Verify this information before applying it to your situation.>>
After 12 days - here is a summary of reactions to the initial message
about connections between gluten and personality problems, including
ADD, ADHD, and anti-social behavior, which read - in part:
"When I first attended a CSA/USA conference (in 1982), I asked the
leadership, before the conference, about the possibility of a
lecture about the connection between gluten and psychotic behavior.
In our family there was an obvious connection...
I never had a reply, and there was never a speaker who even mentioned
the subject. When asked, the speakers at the conferences usually
looked blank and confused, as though the possibility had never
occurred to them - and it probably had not...
Surely there are others on this LIST who also feel this need. I'm
willing to bet that at least a few of those people have wondered
whether or not gluten had any part in the anti-social behavior of the
students with guns in their hands. I would be happy to hear from you
and get your suggestions of ways we, as a group, might approach this
question...
Perhaps others of you have better ideas of ways to approach this
serious and, in many cases, society-threatening problem. Does
anyone know of a doctor who is aware of this connection and working
on the problem?"
The responses have been long and thoughtful.
[log in to unmask]:
Getting one of those schools etc. to try gluten free sounds like an
interesting approach. Who knows someone in authority at one of those places
who might consider it?
[log in to unmask]:
I know the depression and horrible mood swings made me a borderline
"aggressive" teenager and I had thoughts that weren't dangerous towards
others, but towards myself, until I went gluten free about 2 yrs ago
(I'm 31 now). I don't know how I survived those thoughts, I can remember
them clearly, but now feel that is was "chemical" not "real" and I think
that is what I kept telling myself about those feelings all those years
-- they weren't real and that it was a part of growing up and it would go
away. I thank God for having to go GF due to how sick I got, I'm am a totally
different, and better person. I wish for all those years back, but I will
"make them up." And I wish I could cram real evidence down all the doctors
who thought I had psychological problems, and all the medications that made
it worse... ;-) the only hostile thoughts I have left.... unless I slip and
get some gluten -- then I put the worst PMS to shame and have to hide from my
family so I don't say mean things because I feel so bad. Maybe we can find
some way to "induce" gluten immunological (spell) responses into some doctors
for research, see how they feel. ;-) I guess I'm "feisty" today ;-)
[log in to unmask]:
CD as you know leads to malabsorption of nutrients.
Malabsorption of Iron leads to deficient nervous system
and psychomotive development.
I suggest you look up the effects of Iron shortfall on
children.
A person who gets CD as an adult is unaffected by this.
[log in to unmask]:
... the rep from Kinnikinnick come to our support
group in Columbia, SC the other day. He told us that the founder of KK
worked in Germany (I think) in a prison where they did conduct an
experiment. They put their "psychos" on a GF diet and did notice an
improvement - that's what got this guy (and I don't remember his name)
interested in Celiac in the first place.
[log in to unmask]:
Credibility is the issue, not whether there is "something to it."
That credibility has been eroded by the noise made by what the MD's
refer (perhaps accurately) to as the "true believers" who preach food
gospels not backed up by any kind of study, and simply alienate the
serious scientists who testify before Congress and who have granted
the final say in so many areas that affect us, whether or not they
know whereof they speak.
Jean Landon, for many years volunteer head of the NYC Celiac support
group, is a psychologist who has struggled with the connection
between mental illness and the disease as a family member as well as
a professional. She religiously attends professional conferences,
reads the literature, and keeps abreast of this issue. I have had
many conversations with her on the problem of credibility, which she
also feels is the key. (Jean is quite elderly and is becoming less
active, alas.)
Perhaps the key here would be to form an association of psychologists,
MD's, research scientists, etc. who have Celiac OR gluten intolerance,
or who are knowledgeable about it, and who would begin to arouse public
concern backed up by their professional credentials and their life
experience. Something like the scientists who banded together to oppose
nuclear weapons...
[log in to unmask]:
Dr. Alessio Fassano, University of Maryland, believes that celiac
children have behavior problems. But, I don't know how much he is
willing to say, since there is so much pressure in the medical
communitity to be "non-reactive" to this issue.
[log in to unmask]:
I have been wondering if the places that feed the homeless would switch
to gf meals, what would happen? I have heard that half of the homeless
suffer from schizophrenia. If they ate gf at the shelters, maybe some
would be cured enough to get off the streets. Of course, they would
need to get off the beer also.
[log in to unmask]:
I am one of those who is emotionally crippled by gluten and I see the
same behavioral disorders in others in my family.
[log in to unmask]:
I am interested in this subject. Please put my name on your list, and I
will try to help.
To start a movement, you don't need everyone on the list to agree, or
even pay attention. You just need two or three people who are able to
keep at it. The longest journey begins with the first step.
ing started with one woman.
Would you be willing to do one more celiac list posting, and this time
put in as the Subject, Psychology of Celiac Disease or Bio-Psychological
Disorders of Celiac Disease? Maybe more people would pay attention.
I go back to the biggest changes being started by a single person.
Mothers Against Drunk Driving, one woman. The link between heart disease
and diet, Nathan Pritikin...an engineer, not a doctor.
[log in to unmask]:
There is a group of doctors that have been approaching this subject
since the early 80's, and there is a book called "Brain Allergies"
... Your post brought all this back to mind. I asked about eating
disorders and CD on the post, and filed answers to questions about CD
and depression, because both are a problem in my family.
Note from GK: BRAIN ALLERGIES by Philpott and Kalita is written for
lay readers. MENTAL & ELEMENTAL NUTRIENTS by Pfeiffer on the same
topic but more technical. Both excellent sources. Also Rapp THE
IMPOSSIBLE CHILD and ALLERGIES & YOUR FAMILY.
[log in to unmask]:
I believe I read that the boy [in the California shooting incident]
was small for his age. You could consider contacting his attorney to
tell them to test for celiac disease. What a tragedy for everyone
involved in that case.
[log in to unmask]:
Two things. The schizophrenia thing is for a fairly small
percentage of schizophrenics. It's not general.
The second is that it is much easier to prevent people from
getting guns by proper licensing as we have here than to
try to make them stick to a diet or a pill regime. You
will understand that I will never be a card-carrying member
of the gun lobby......
[log in to unmask]:
I do not believe that the success/failure of any such group should be
guaged strictly in terms of public policy. There is also the factor
of public awareness, which produces results which are not
measureable. There is hope in every communal action, and we must not
be deluded by short term evaluation methods. They are inevitably
wrong, it seems to me. They certainly breed hopelessness, which is
perhaps our principal enemy after all.
[log in to unmask]:
I have celiac and I believe there are link that are just being
discovered. I called Dr Lakytis he is a doctor in my area that treats
addiction and eating disorders. I called him when I heard him mention
on the radio about new testing connecting the chemicals reactions
between the small intestines and the brain. He feels that the link is
strong and just now being discovered. The effects of gluten on the
nervous system are undeniable. University of Maryland is doing most of
the research on celiac. They have a web page http://celiaccenter.org/
I know I have family members with it and also with the mental effects of
the disease. ... Medications just bandage they don't cure. Gluten free
could cure.
[log in to unmask]:
I believe you are onto something extremely big. So BIG that it could
really impact our world in ways that most people would never believe.
I don't like to be thought of as crazy so I try to take a low profile
usually. I have been talking to people at CD support group and
reading emails on this listserv since Dec. 2000. Thank you for not
being afraid to speak out.
There is definitely something here that most MD's and Psych
professionals really don't understand at all. I believe you
could get NIH or NIMH or some other type of government
funding for this fairly easily.
[log in to unmask]:
I've had 7-8 emails about the idea of starting another email loop
about the behavior celiac connection since I put the post [about the
connection between celiac disease and behaior] on the celiac
loop. One was from a woman in NJ who teaches ADHD students and who has
gotten no support when she has suggested celiac testing--although she
sees obvious signs of the symptoms. I asked her to post that to the
celiac list, hoping that some professional there would have an idea for
her. One email wanted it kept to the main celiac loop because she felt
everyone would be interested.
Would this email loop come into line with what you were talking
about? I think if we can all get together and brainstorm a bit, we could
come up with ideas about how to make this connection more public.
[log in to unmask]:
I think it may start with finding a good journalist who is prepared to
research thoroughly and print in a well read/prominent newspaper. One
would then have to contact the schools themselves, and work through the
school psychologists and counselors, teaching them about gluten. One
could also work through the Universities, in the psychology departments.
The lecturers who are training the school counselors of the future need
to be educated themselves. I believe organizations such as CSA and GIG
should be setting up lectures in the Universities and schools, to make
both lecturers and teachers as well as pupils aware of what gluten can do.
I have recently developed my own "lecture" on gluten intolerance/Coeliac. I
call it "Gluten Intolerance for the New Millenium". I have created it on a
computer program called Power Point. It is in the form of a one hour slide
show. It is in my laptop computer, and is viewed using a multi-media
projector which needs to be hired at the venue. I have just started being
invited to travel to various centres in South Africa to present this
lecture. The company that are sponsoring/paying me are a company called AIM
International. They produce and market nutrient/vitamin products. The
response I am getting is truly wonderful. I want to start offering this
"lecture" to food companies at their conferences and seminars because so
many companies have no idea what gluten is or what it's effects can be on so
many people. [Durban, South Africa]
[log in to unmask]:
There must be some way to get the appropriate doctors involved in such a
study, so the results would be taken seriously.
[log in to unmask]:
I immediately had the same thoughts you had on seeing the first TV pictures
of little Andy. Ordinarily, I would be very leery of saying anything about
a case with no first-hand knowledge of it. I am used to being a statistical
researcher and steer clear of making a professional comment about any
identifiable person. In this case, the hypothesis that CD was at work made
so much more sense than anything in the torrent of mostly inane and
fatuous comment I was hearing. That Celiac or a similar immune system
disorder is at work fits so much of the constellation of physiological,
psychological, and social elements of this case as to suggest that this
may be an instance of a common peril. We have a far-from-rare but usually
undiagnosed disorder which often arrests the development of children making
them "scrawny" targets of bullies. A significant but unknown fraction of
the children with this disorder will be affected mentally, so that they are
poorly equipped to manage difficult social situations or the anger they
experience. Some theorize that increased permeability of the gut and of
the blood-brain barrier produced by CD and related conditions can be
responsible for the behavioral disorders, such as the ADD, ADHD, and ODD...
Precipitous, unexpected extreme behavior also might make sense given some
properties of CD making its effects often insidious. Unlike some mental
disorders which are visibly constant from infancy onward, CD can vary
in severity at different stages of childhood. The impairments attributable
to CD are cumulative, however. Severity also can vary with changes in diet.
(One wild stab I made was that this shooter might have had increased gluten
challenge with a change in diet upon moving from the East Coast to the West.
Certainly, beer which he is said to have consumed generously make for a
double-whammy to a kid with CD-linked emotional disorders.)
I will see if I can interest some of my criminological colleagues in
this.
[log in to unmask]:
I am the mom of two celiac daughters. I myself have tested negative
(twice), but I continue to eat GF anyway BECAUSE MY BRAIN WORKS BETTER.
When I eat gluten, I get this foggy-head thing, and can't really
concentrate too well. I also come from a family with a history of
mental illness (and I imagine un-diagnosed celiac disease). I can't
help wonder if my aunt (schizophrenic) and my dad (who knows what the
diagnosis is because all his problems are because of me, my mom, my
brother, our neighbors....) would have been helped by the GF diet.
I truly think that there are 2 reasons no one wants to think about this. The
first one is money. No one is going to get rich by discovering that a GF
diet "cures" some psychological issues. No pharmaceutical company would
provide the money for research of something like that. The second reason is
work. The GF diet is hard in our society. All the fast food places and
convenient foods we see in the stores are there because we as a society have
become lazy when it comes to preparing food. I know that personally there is
nothing I miss about not eating gluten. What I do miss is the convenience of
grabbing a slice of pizza, a bagel, a deli sandwich...
I seem to remember seeing very old research into gluten and juvenile
delinquency, perhaps in Great Britain. We all know the truth, we just
need to get someone to believe us.
[log in to unmask]:
I had a brother with schizophrenia and always wondered if there was
something we could have done. My husband is the one in our family
diagnosed with Celiac disease so there is no blood connection. ...
Thanks for your thoughts because I have certainly wondered the same
thing after reading as much as I could on celiac disease.
[log in to unmask]:
I've been gluten-free for 8 months now, and the longer I adhere to
this diet the more concerned I become for our society, my kids, my
grandkids, my relatives, and my ancestors. I definitely want word to
get out about wheat and mental health. But not in as negative a way
as you have suggested.
[log in to unmask]:
I am pleased to hear about the movement in thinking on the subject of
gluten sensitivity and behavior. It is long overdue!
[log in to unmask]:
A very thoughtful post. I am a psychologist and have (albeit only
recently) discovered this connection after my daughter was diagnosed as
gluten intolerant and I began to research this disease.
I belong to another group, the Australian Chemical Trauma Alliance, and I
have taken the liberty of forwarding your email and this response onto the
chairman. He is very well aware of this connection and was the first one to
alert me to this connection. Without his able assistance I would not have
been able to get my daughter the medical attention she needed urgently, so
he is a good man.
Regarding your paragraph on testing the gluten free diet in an American
prison, an experiment has been done just removing salicylates from the diet
and the results were astounding. I cannot give you the reference at this
point, as I have loaned my book to a fellow psychologist who is also
interested in this phenomen, but this experiment is discussed in "Fed Up"
the latest book by Sue Dengate which is available in the US - as a matter of
fact she is currently on a lecture tour there.
I have tried to discuss the diet connection with the parents of a couple of
ADHD children, but they do not seem to be interested. They cannot believe
that such a simple thing as a change of diet could assist their children,
they seem indoctrinated to the Ritalin aka known as medical route.
Whatever you decide to set up, please include me.
Just as an aside, Alana, our daughter has always been a meek, passive
child with learning difficulties. Since diagnosis and diet change,
including removing salicylates, she has said that her brain has cleared,
she is achieving remarkable results at school given all the lost time
(she is nearly 16) has developed an outgoing personality, grown 2
inches, her hair has become curly again, and positively radiates good
health. So the diet change works in children who do not have
psychological or behavioural problems also. What potential is being
wasted out there? [Queensland, Australia]
[log in to unmask]:
You are welcome to use my bulletin board system at:
http://www.nowheat.com/anyboard/
to discuss this issue if you'd like. As it allows for threaded discussions,
it's easy for everyone to keep track of who says what to whom. And I
encourage its use for the sorts of "non-mainstream" discussions that are
often not welcomed on the celiac listserv.
Besides which, I have noted behavioral changes, both huge and subtle, in my
family since going on various diets.
First there was my daughter, 4 years ago, who went from heading for an ADHD
diagnosis, to a good student, nearly overnight, when I removed milk from
her diet. You can read her story if you like at:
http://www.nowheat.com/grfx/nomilk/
but it doesn't have the most recent info, which is that after a course of
antibiotics last September, her behavior started to decay again. We put her
on a gluten-free diet and she had another instant recovery. The change,
both times, was so large as to be nearly unbelievable, but I have to
believe it as I saw it with my own eyes. Twice. (I'm still incredulous over
it though.)
For subtle, we have myself (went gluten-free 6 years ago) and my husband
(went milk-free 4 years ago). Both of us are by nature pretty easy-going
types. However both of us had the occasional bad moment. Me: though
philosophically I was a "non-spanker" sometimes it seemed like the only
recourse; however, I haven't spanked a kid since I went gluten-free. My
husband's worse vice was breaking things when he got mad; hasn't done that
since he went milk-free. It's really only recently that we even noticed
these changes (funny how you don't notice bad things when they are gone).
So I have a big interest in diet and behavioral issues.
[log in to unmask]:
While a small segment of the population having ADD, ADHD, ODD,
schizophrenia, etc. may be helped by a GF diet, I think it is more
useful as part of a symptom constellation to aid in diagnosing Celiac
than as a major cure for the afore mentioned disorders. I work in a
public school system among the support personnel. What I have seen as a
worker and as a parent of a student with learning disabilities and ADD
is that the schools have too few adults per student to deal in the
personal and flexible way needed to truly respond to kids in need. A
lunchroom monitor, for example may be responsible for 300 kids at a time
-- not exactly conducive for a heart to heart, it's obvious that the
adult couldn't possibly know what's going on with so many kids at one
time. School counselors have so many students assigned to them that
it's all they can do to see each one about academic needs a few times a
year, forget developing a personal relationship. Teachers are faced
with an ever expanding curriculum, and higher expectations for
achievement. The school buildings are being built ever larger, and more
impersonal. School system administrators are more interested in putting
money into technology than in increasing staffing numbers. And on the
home front it's even worse. More families have both parent's working,
more single parents and parents with more than one job. Who's a kid to
turn too???
We need to find a way to make our society more supportive of its children.
We also need to make violence less glorified and guns less available!
Thanks for raising the point.
[log in to unmask]:
As support to your theory, I thought about the "Nutrition Almanac" by
Lavon Dunne. There is one section in it about Crime and Delinquency which
says that many offenders are suffering from poor nutrition. Hypoglycemia is
the number one culprit, however. Vitamin deficiencies and food allergies
are also mentioned. The latter are referenced saying that these "cause
pressure on certain nerves of the brain, activating aggression."
The final summary says that unrefined foods and vitamin and mineral
supplements can improve everything.
Needless to say, a gluten allergy can certainly be a factor. Whether
it's the predominant factor...well, that may be a bit hard to get to general
public to accept, in my opinion.
[log in to unmask]:
Ya know, Gayle, I think we can do this. I want to give you a blurb and a
link about that a substance Paul Shattock has been finding in the urine of
autistic kids....it's called IAG. There's a test for it (needs doctor's
orders and costs $90 bucks). Here' the blurb:
Conditions known to have an increase in IAG in the urine
Hartnup Disease Dietary Abnormalities: Excessive intake of food
contenting high tryptophan levels.
Abnormal bacteria in the large bowel
Autism
Attention deficit disorder
Attention deficit hyperactivity disorder
Dyslexia
Obsessive compulsive disorder
Dyslexia
Here's the link: http://www.antibodyassay.com/urinary.htm
I think Paul has something on his website about finding IAGs in the urine of
some celiacs. I couldn't open the site this morning, so I'll have to check
later on it for you.
If we put our heads together, I think we can come up with something. I've
looked at this IAG issue, you might remember I did a little bit on the
purine metabolism/gout thing, and there's a couple other issues on autism
that might impact on us celiacs.
Linda Blanchard's Nowheat.com is a good place to have a discussion list,
Ron Hoggan & I already started something there. If people are interested,
we can leave messages on threads there...the first thing i would do is
evaluate the IAG, to see if we are getting profiles.
[log in to unmask]:
Many parents of children, not celiacs, have also found the gluten-free,
casein-free (milk protein) helps their kids. For instance, the "autism
spectrum" not only includes autism, but, on the low end, also add/adhd.
Parents worldwide are helping their children get well, or better, with
this diet. See gfcfdiet.com for more information. BTW, Children's
Hospital in L.A. has a celiac program, and they do free celiac testing.
They want to test more autistic children for celiac, because CH is
finding celiacs among autistic children...quite a few.
Many vitamin deficiencies cause behavior problems in adults, too. For
instance, if you use "water pills" you can get a potassium deficiency,
and have "crazy-like" symptoms. Most doctors know this, and recommend
that patients eat a banana a day, to avoid this problem when they
prescribe diuretics.
Low blood sugar (hypoglycemia), and high blood sugar (in the brain, of
course), causes behavior problems, in adults and children. These
conditions are triggered by food problems. The "Twinkie Defense" in San
Francisco, when City Hall was the target of several murders, involved a
defense based on a homicidal rage, brought on by a hypoglycemic murderer.
Although this defense was trite, the defense lawyer was able to provide
the court with proof of wildly aberrant behavior in adults who have
hypoglycemia.
Dr. Doris Rapp, "Is This Your Child" is a good book to start with. Dr.
Rapp is a pediatric M.D. specializing in pediatric allergy, not celiac,
but food related behavior problems are well demonstrated in her book.
It is NOT unreasonable to believe that celiac children, deprived of vital
nutrients, would have behavior problems.
I think it is wise, however, to not limit the bio/psychological aspects
of celiac to children, but include adults as well in this ongoing
discussion. I hear bits and pieces of information that depression in
celiacs is common. Is that true; I don't know for sure. Where is the
book on this topic for adults OR children?
The Dark Ages of the stranglehold of "Talking Psychological Therapies",
and prescriptions of mood drugs, are now over because Gayle has opened
the door to a renaissance for all of us to explore this bio/psychology
topic...in the open...without fear of severe consequences from the
critical eye of condemnation. Sharing research resources (including
anecdotal evidence from parents) on this topic will benefit us all.
Wouldn't a conference on bio/psychological aspects of celiac disease
be a good thing?
Who out there is bold enough to take the first step and arrange a
conference, for say, 2002. Dr. Alessio Fassano, of University of
Maryland, is a celiac disease research expert, and has stated that he
believes that behavior problems often exist in children with celiac
disease. Would he be a good speaker to address this issue?
[log in to unmask]:
I've often had the same thought-if you could get to an interned group of
people and change their diet, then one should surely see changes in their
behavior. Then, as an additional thought, once this has been proven, one of
the conditions of parole would have to include eating a gluten-free diet.
Wouldn't that be something? I also don't know what to do with this thought.
I wonder if someone in another country, who is so far ahead of us in the
area, has already done this?
[log in to unmask]:
I feel that you are on the right track and that we should go beyond the
anecdotal state of understanding the effects of untreated and unrecognized
celiac. I have been a school psychologist for over thiry years and am now
going to retire. I hope to be able to devote my time to research in the
field of celiac and children. I have just finished reading an article in a
book published by Children's Hospital and being distributed now which
seemed to me to be quite inadequate. I was able to go to the International
Conference this last summer.
A number of the pediatricians and neurologists in the Boston area have
become interested in the effect of foods on children. There is a lot of
research going on in the Boston area in the fields of ADD, Autism,
Asperger's Syndrome, Tourette's Syndrome and Non-Verbal Learning
Disabilities. Much of the activity has been pushed by activist parent
groups. Little of the research has been targeted on children with celiac
who have not been diagnosed early enough.
There is money available from the government that could be
captured to sponsor research in precisely the areas that you mention if
there was a non profit group that could seek funds for targeted
research. It costs the towns, states and USA an enormous amount of money
to give individual education to children with some of the problems that
you and others have mentioned. Some of their problems did not have to
occur if diagnosis and appropriate intervention was more timely. There
would probably have to be involvement with a research university. The
Autisim Society of America has been very sophisticated in mobilizing
efforts.
[log in to unmask]:
Please see email below from RJJTMB1; I bet you've received a few of these.
Now for the good news. Danna Korn, who just published "Kids With Celiac
Disease" was so inspired by your posting that she is CONSIDERING THIS
ISSUE for her second book.
"Now...see what you've done. Fine mess you've got us in this
time...Ollie! There are ABSOLUTELY psychological/behavioral issues to
accompany celiacs (who are still eating gluten). In fact gluten has
"interesting" effects on people without celiac disease, as we see in
autistic kids who metabolize it into a form of endorphin (opiate). VERY
interesting stuff. Maybe a new book is in order, eh?!? Kidding. Shoot
me if I ever say that again."
[log in to unmask]:
You may be interested in knowing that there is a researcher wanting
to study the connection between autism and gluten intolerance. He is
in the process of setting up his study criteria and perimetersSI am
unsure where he is, but he is in the USA. I know this because of the
prof celiac list.
Well, folks, that's it. I hope I haven't left anyone out. The topic
is complicated and so is the business of trying to get together and
act. I'm in favor of a conference or two, but have no money to get
it organized, and no knowledge of how to even approach such a
project. I'm willing to help, but his Grandmother is too old to
tackle the whole thing alone. Any thoughts would be appreciated.
Best wishes, and good health to you all, Gayle Kennedy
|
