<<Disclaimer: Verify this information before applying it to your situation.>>
Newsletter Roundup
------------------
compiled by Jim Lyles
This section contains excerpts from newsletters produced by other
celiac groups.
............................................................
: :
: Excerpts from _Celiac Connections_ :
: ---------------------------------- :
: June 1998 Katie Marschilok, editor :
: Nov./Dec. 1998 Capital District Celiac Support Group :
: PO Box 621 :
: Glenmont, NY 12077 :
:..........................................................:
What Do These Children Have In Common?
--------------------------------------
* Until his sixth month of life, T.S. was a happy healthy baby.
Once he started eating solid food his appetite grew, yet his
height stayed the same. His weight dropped but his belly started
protruding. He slept on his stomach or clung to his mother more
than 20 hours a day. He cried almost all the time. At one point
he was hospitalized with dehydration and severe electrolyte
imbalances. His doctors and parents were afraid he might die.
* A.M. made it to 32 lbs. by his first birthday. He was the
picture of robust health until age 5. His growth slowed then
until about age 7, when it stopped altogether. He had a poor
appetite, suffered from bouts of chronic constipation and had
frequent nose bleeds.
* A.M.'s brother, J.M., was a very irritable, emotional child.
Many nights after dinner he would sit on the couch complaining
that his stomach hurt. His height and weight were quite normal
for his age. He was diagnosed with diabetes at age 8. He was
treated for esophagitis and asthma.
* A.M. and J.M. had a sister, C.M. She missed 1/4 of her
kindergarten year because of bouts of pneumonia, bronchitis, and
asthma attacks. She was 40 inches tall and 40 lbs. in weight
for several years.
* S.O. was treated for iron deficiency anemia with iron
supplements from age 4 to age 11, with no success. He had
frequent skin problems and, to his distress, his younger brother
surpassed him in height.
* L.S. at age 12 was hospitalized for nausea, vomiting, and
diarrhea that led to severe dehydration. The hospital physicians
had no idea what was wrong with him.
* R.F. at age 14 had been 4 feet, 4 inches tall and 65 lbs. for a
very long time.
* L.K. developed diabetes at age 2. He was pale and thin, with
wildly fluctuating blood sugars that were very difficult to
control or predict.
* I.R. was referred to an endocrinologist because of growth
failure. He had no symptoms of illness that he was aware of.
* K.L. had skin rashes that would come and go, that did not
respond well to any of the medications that the doctors had
prescribed. Her size was very normal.
* N.A. felt fine, but was quite short in stature for his age.
* M.Y. had a very bloated abdomen. As she grew, her arms and legs
were getting thinner.
So what do the above children have in common? All have been diagnosed
with celiac disease and are members of our group. [It is of special
interest to note all the different and in some cases seemingly-
contradictory symptoms of celiac disease in the above children. Only
a few would be recognized as celiacs from the "classic" celiac
symptoms.--ed.]
-=-=- -=-=-
Celiac Disease in the News:<4> Two political opponents share
appetites, gluten-free that is. Jane M. Swift (Republican) and
Warren E. Tolman (Democrat) were candidates for lieutenant governor.
Though divided by party affiliations, they are united on the food
front as both are celiacs. Tolman was diagnosed 5 years ago when he
was 33 years old. He is 6'4" tall. His picture should be distributed
to any health professional who is only looking for people with short
stature. Swift was diagnosed during her late 20's and discussed
strategies for eating on the campaign trail.
.........................................
: :
: Excerpts from _Celiac Update_ :
: ----------------------------- :
: Fall 1998 Janet Thomas, editor :
: CCA Fredericton Chapter :
: 100 Epworth Circle :
: Fredericton, NB E3A 2M6 :
: CANADA :
:.......................................:
10 Ways to Keep Your Celiac Child Healthy
-----------------------------------------
10. Get your family and friends on your side: Support of family and
friends is incredibly important, especially during that first
confusing year. If they get comfortable with your child's diet,
life becomes much simpler. My brothers and neighbors are
sensitive to Michael's diet and call to find out what they can
serve so all the kids are eating the same thing. One of my
sisters-in-law even bakes with rice flour whenever we go there for
a meal, and we go there a lot!
9. Find a doctor that you like: Our family doctor and pediatrician
are both terrific. Michael and I are comfortable enough to ask
them anything, no matter how insignificant it seems.
8. Be active in your local [support group]: There's no better way to
learn how to cope with the diet than by talking to others who have
followed it for many years.
7. Don't let anyone convince you that your child will "grow out of
it": You can't imagine how many times I've heard this from
parents of celiacs that are now in their 20's. It CAN'T happen,
ever! Some teenagers do not have reactions to gluten when they
cheat on their diets, but that is just a temporary condition.
Teenage celiacs who eat gluten damage their bowels, and eventually
suffer a reaction.
6. Be prepared for some accidents: No one is perfect. Celiac kids
and their parents make mistakes from time to time. Get used to
it! [But always learn from your mistakes. We are doomed to
repeat those mistakes we forget about--ed.]
5. Always read the ingredients: Sometimes those mistakes are caused
by not reading the ingredients. The rate that companies change
product ingredients is astonishing. I've been caught by changes
in hot dogs, pop, snack foods, and chocolate bars. What I've
learned is this: stick to fruits and veggies.
4. Plan ahead: The key to keeping your child's life normal and
ensuring that he/she feels included is planning. Always call
parents who are having birthday parties to see what they are
serving for food and in the treat bags. Always talk to teachers,
coaches, and leaders about the food being served at special
events. Be prepared to be the one who ALWAYS has to bake.
3. Talk to your child's caregiver or teacher a lot: If your child is
in daycare or school, there is no one more important to talk to.
My experience with teachers has been very positive. They have all
accommodated Michael's diet quite cheerfully and never once have
made him feel different.
2. Buy a bread machine: My bread machine is the most precious
appliance in the house. I made some pretty sad-looking loaves of
bread before my loving husband bought me the bread machine. It is
totally dedicated to Michael (no wheat flour allowed) and produces
perfect loaves every time!
1. Teach your child to take responsibility for his/her diet right
from the beginning: When Michael was a 4-year-old he delighted
the staff at Scoop and Save because he could rhyme off all the
forbidden grains and ingredients. When he was 6 years old, he
made a presentation to his first grade class about celiac disease
during Celiac Week. At 8 years of age he would politely refuse a
treat from a new friend's parent, explaining his diet. At 10
years old he is now pretty much in control, making his own
decisions about what he eats. He's made one or two bad decisions
which resulted in a couple of miserable days. Needless to say
those bad decisions are getting fewer and fewer. The point is, I
can't be there all the time now. He needs to be able to do this
himself.--Janet Thomas
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