<<Disclaimer: Verify this information before applying it to your situation.>>

I aspologize for sending 3 copies of this one--stupid e-mail
program...grrr...again, thanks for all the help!

chris
###
Alix is 10; celiac disease; diagnosed at 23 months after a 5-month period of
illness and investigation.

 --What led you to explore the food/additive connection with behavior?
 Alix was an exceptionally happy, vigorous baby who attained all of her
early childhood physical landmarks very early. At 18 months, she lost her
vigor. She turned pale, whiny, cranky, lethargic. At 14 months, in the fall,
she had been all over our 2-acre lot, throwing herself into leaf piles. She
had walked at 10 months. At 18 months, she sat down and refused to walk. We
spent 5 months carting her around the house in her little wagon. She slept 4
to 5 hours for afternoon naps. Where she had been a very happy baby, she
would cry and fuss for no apparent reason. It seemed clear that there was
some physical problem that was also affecting her mood. I get cranky myself,
as an adult without serious health issues, when I have cramps or a headache.
It just made sense to me that there was a connection. My early research into
her condition, even before we had a firm diagnosis suggested the connection.

--How did you investigate? Did you do blood testing, food challenges, both,
something else?
 Alix's pediatrician was mystified. The first, the partner (whom we don't
like) suggested "stress" as the cause of occasional bouts of vomiting,
lethargy, pallor. The regular pediatrician eliminated conditions such as
diabetes and thyroid disease using blood tests. When we reached the point of
being unable to investigate further, he referred us to a specialist, Dr.
Benny Kirzner, a pediatric gastroenterologist at the Children's National
Hospital in Washington, D.C. (He might be a good resource for you.) He
recognized Alix's symptoms when I had occasion to change a poopy diaper in
his office; from there, Alix had a blood test for intestinal absorption (she
was absorbing at 50% of normal rates), a blood test for antibody screening
(very high readings), and a biopsy of the small intestine (12 samples all
showed damage to the villi). These tests were performed at a time prior to
when the new tests--the finger stick blood test and stool test--were
available.

Once we had the diagnosis, we have done no intentional food challenges to
confirm. Alix's recovery was SO remarkable that we had no reason to suspect
coincidence nor need to reconfirm. Later accidental exposures ("accidental"
may be overstating it: put it down to a 4-year-old frustated by limits put
on her and intent on exploring items such as pretzels and cookies) confirmed
by providing strong positive evidence of the food connection.

--What were the results? What are the "trigger" foods/additives (if any) for
your child?
Alix clearly has celiac disease. The gluten in wheat, rye, and barley (we
only have direct evidence of reactions to wheat and have not tested the
others) set her off.

 --How does your child react to these triggers?
----Alix is not a particularly "sensitive" celiac. She does not appear to
react to trace amounts, minute cross-contaminations, etc. (The appearance of
not reacting does not mean that there is not a reaction: a molecule or two
is enough to invoke the antibody reaction that causes damage to the lining
of the intestine, according to conventional medical wisdom, and that damage,
repeated over time, can be a precondition for intestinal lymphoma;
repeatedly invoking the antibody system also, according to medical research,
seems to be related, perhaps causally, to the presence of other
immune-mediated conditions such as diabetes, thyroid disesase, systemic
lupus, rheumatoid arthritis, Shogrin's disease, etc.). For Alix, a
full-blown exposure means a few bites of bread, cookies, cake, pasta, etc.
About 90 minutes after exposure, she begins to complain of stomach pain and
very shortly thereafter starts to vomit. She feels extremely run down and
lethargic; she turns pale and weepy and clingy. She vomits off and on for
about four hours after which she pops up off the sofa, tap dances around the
room, and declares herself famished (and will chow down on anything I give
her without any negative consequence).

 --What role did your child's physician/care provider play in addressing the
food/additive connection?
See above re diagnosis. At the time of diagnosis, Alix had not yet been
involved with other caregivers with the exception of grandparents and very
occasionally baby-sitters. Recent exposures, and I have to suspect there
have been a few, seem to cause some moodiness, but it's not enough to be
able to see a direct connection between food and behavior unless you know
her very very well. My frustration is not having firm indications when she
has suffered some minimal exposure. My suspicion that there is a connection
between exposure to gluten and behavior comes from very subtle signs that
could easily be interpreted in many ways, particularly as Alix has become a
preteen and her moods may be complicated by <gasp> hormones.

 --How supportive is your child's care provider?
-----Most of Alix's care providers have been supportive. She's usually a
pleasure to have around, and their only consequence, other than the rare
times when she has had to come home with a full-blown reaction, has been the
need to provide gluten-free snacks and treats. Most have indicated that they
see the food/behavior connection in others more than in Alix.

 --In what ways are you modifying your child's diet?
--------Alix has been on a strict gluten-free regimen for eight years.

 --How has modifying your child's diet affected his/her behavior or
symptoms?
----------I consider myself the Gluten Gestapo, and have been exceptionally
dilligent about Alix's diet. Alix has been a happy, active, outgoing child,
involved in sports, performing arts, social activities, travel, etc. Within
a week of her diagnosis, she began to regain her energy. She had fewer and
fewer of what we called "Velcro days," and began to behave in ways that made
her nickname of that time, "Barnacle baby," obsolete. Within three weeks,
she was back to her energetic earlier self, exceptionally vigorous. When her
grandparents took her, following the recovery, they would report that "she's
so biizzzzzy!" She went very noticeably from lethargic, whiny, clingy,
moody, and occasionally irrationally angry (then again, most children at
that age experience tantrums and outbursts) to downright jolly. The shift
from depressed to enthusiastic about everything was not the least subtle.

--If mature enough, does your child participate in monitoring his/her diet?
In what manner?
----------Alix has a good understanding of the foods and food additives that
can harm her. Since she was 5, she has helped read food ingredient labels,
participated in cooking and baking of gluten-free foods, and begun to make
good decisions about foods. She watchdogs her father, who is sometimes
careless about cross-contamination. I have hoped to give her a sense of
feeling in control, of participating actively in advocating for her own
health, and she seems to be responding well. More and more, she makes good
independent decisions, but she does not hesitate to check in with mom if she
is uncertain. She has a basic understanding of the long-term consequences of
not adhering to the diet and although she sometimes rails at the unfairness
of it, she generally has a good attitude.

--What has your experience been with your child's school or daycare, with
regard to diet restrictions?
------------In the early years, the other children were generous and kind in
dealing with Alix's food issues. Almost every year and every new setting saw
some other child who took an interest in and advocated for Alix. One would
get Alix milk or water during snack time, because she could not have the
juice they served. Others' parents participated by contacting me to
determine what they could provide for Alix at birthday parties and such.
Elementary school teachers seem reluctant to make the phone calls in advance
that would allow me to provide special snacks for Alix for school parties
and such, but have allowed me to provide nonperishables to keep on hand for
these occasions. Some of the room mothers have been good about contacting me
and allowing me to provide special treats. Most are very understanding but
find that they have no need to participate actively because Alix 1) prefers
not to draw attention to herself in what she considers a negative way (she
would much rather be performing at the talent show or starring on the baton
team) 2) is pretty independent about it. In the upper elementary grades, we
have had situations in which other children have made fun of Alix because
her foods sometimes look different, or engaged in plain old-fashioned
juvenile meanness by purposely dropping crumbs onto Alix's lunch. This tends
to happen in the lunch room where there is less immediate adult supervision.
Alix gets mad but doesn't look for adult intervention because she would find
it embarrassing.

--Any other comments?
-------We are fortunate that Alix's physical makeup or perhaps my dilligence
have made her less prone to reaction than many of her celiac peers. At
meetings of celiac families, Alix tends to hang with the nonceliac siblings
because the celiac kids tend to be unable to keep up with her. What I see of
these other children is pallor and fatigue. They tend to have dark circles
under their eyes, and they are--not exclusively and to varying
degrees--whiny and clingy. It is impossible to say whether gluten exposure
itself can cause the mood changes, or whether they arise from just plain not
feeling well, without double-blind studies (no ethical researcher would ever
conduct these on children because of the hazards of the exposure to gluten).
The preponderance of anecdotal evidence is that there is a connection, and
the tendency to assign causality is overwhelmingly human.

 Be sure to investigate the food connection with the
ADHD/Aspbergers(sp?)/autism continuum. Many, many autistic children have
experienced quantum shifts in behavior with the elmination of gluten and
casein (a milk protein) from their diets; some say there is little effect
from one or the other. (My neighbor's autistic son displays reactions to
casein but not to wheat. Another friend's son went from nearly unreachable
to virtually normal with a GFCF --gluten-free/casein-free--diet.)

In my experience, long-term health issues, chronic pain, and chronic
malaise, regardless of the underlying causes, can make people unhappy,
tired, cranky, etc. It is hard for me to envision being able to ever make
the distinction between gluten (or some other food) causing pain/ill health
AND mood/behavior shifts or gluten causing pain/ill health which in turn
causes mood/behavior shifts. On the other hand, when my daughter exhibits
symptoms such as weariness, feeling defeated and overwhelmed, proneness to
crying, apparently inappropriate anger, etc., my first reaction is to relook
at her diet and determine whether some hidden glutens have made their way
into her system. The results of my investigations are nearly always
inconclusive. There are too many variables. Maybe she didn't get enough
sleep, or her best friend was being nasty; maybe she's not liking her
teacher, or maybe she's just hormonal. Maybe she's got a headache because
she needs glasses, or maybe that new brand of yogurt has cross-contamination
issues at the manufacturer's plant.

As a parent, you can drive yourself bonkers trying to solve the mysteries,
and my feeling is that too much emphasis on it can have long-term negative
consequences in terms of social relations and overall quality of life. I
don't want to breed a hypochondriac who can't live in the world because of
fear of every molecule of food that might pass her lips. It's a careful
balance, and I am certain that lots of parents reach levels of frustration
that produce as much angst as their child's behaviors.

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