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

Hello,
I've been a lurker on the Celiac mail list.  I meant to respond to
several queries, I also mean to join the Procrastinators Assoc.; when
the membership chairperson gets around to sending me an application.

Tomorrow my grandson will by 5 yrs. old. and he has CD. I frequently
care for him.  His mother is also CD, but refuses to acknowledge her
condition.  She was diagnosed in 1960 at age 15 mo.  She was on a GF
diet until she was about 6 yrs. as the Dr. stated she was "cured". Her
younger sister had digestive problems almost from birth and was
diagnosed as having the "Celiac Syndrome". Both of them spent most of
their first 6 years in and out of hospitals. Both of them had severe
allergies and immune problems, hot sweaty feet, skin rashes, etc.  They
didn't catch cold, they got pneumonia. They both have been in ICU in
critical condition more than once.

My younger daughter, now 35, admits she has digestive problems so has
gone vegetarian, but she also refuses to consider she might be CD. My
older daughter, now 39, has substance abuse problems that occasionally
get the better of her (she goes on binges).

When her son, Cody was about 15 mo. old, she brought him to me to take
care of for a few weeks.  I took one whiff of his 1st b.m. after she had
left him and KNEW he had CD.  When I finally reached her and asked how
long his stool had been so foul, she told me about a month.  I put him
on a GF diet and set about getting caught up on 30 yrs. of CD research.
I have only had my computer a little over a year and found the CD web
site about a month ago.

I joined the US Celiac Sprue Assoc. three years ago and I refer all
literature to Cody's mother, but it has been an ongoing battle with her
to take his diet as seriously as it must be.  Of course we knew almost
nothing about all those hidden glutens. His poor little bottom was
constantly sore and raw from chronic diarrhea.  His Dr., a family
practitioner, seems to know almost nothing about CD.  Cody has a
breathing seizure disorder and is on Dilantin which has gluten in it.
His mother also had seizures as a child and was on Phenobarbital for
about two years. Cody's Dr. won't talk to me because of patient
confidentiality.  (Frankly, I'd like to knock her in the head with a
2x4, like the proverbial mule, to get her attention.) Needless to say,
his teeth are rotten, 4 or 5 upper front teeth were removed when he was
3 yrs. old.

Since I have been on the CD mail list, I have printed out reams of info.
and have sent it to my daughters.  I somehow doubt they have bothered to
read it.  I'm hesitant to mail the info to Cody's Dr., afraid it might
create hard feelings.  Drs. are extremely sensitive about having their
abilities questioned. I got into a screaming match with one once in the
hallway of a hospital.  He wanted to do exploratory surgery on my
younger daughter "to find out what was going on in her intestines", and
I refused to allow him to do so.  He asked if I thought he was a g..d..
quack, and I told him I had run into more than my fair share of them.

I had Cody in my care for 3 weeks in October and 3 weeks in November.
In Oct. Cody complained that his "pee pee" hurt.  His mother took him to
the Dr. and a urine sample showed bacteria so he was put on an
antibiotic. In Nov. he was still complaining.  I did a thorough
examination and have determined that it isn't his penis, but his
testicles that are hurting him and he has pain behind his testicles and
up into his abdomen. He is still in pull-ups and wears adult depends at
night.  He seems not to be able to completely empty his bladder when he
urinates.  I have begged his mother to have his Dr. refer him to a
pediatric urologist, but so far, no luck. I don't know if his mother
hasn't requested a referral or if the Dr. thinks it isn't necessary.

The only time Cody is completely abdominal cramp and diarrhea free for
any length of time is when he is with me.  He rarely begs for forbidden
foods.  Occasionally when he wants something he tells me his mother lets
him have it, but I point out to him that he hasn't had a sore tummy or
bottom so maybe we shouldn't eat it.  He almost always can tell me what
he ate at his mom's that gives him diarrhea.  One of the reasons I care
for him so often is that when he gets severe diarrhea he can't go to day
care and his mom works. She lives about 100 miles away and can't just
drop him off. I have a running account at Miss Roben's and all his
mother has to do to get his bread products is call them.  Matter of
fact, Jay Berger, Mgr. has been wonderful.  He sent Cody two pkgs. of
bread mix free of charge years ago to see if it would help Cody.  It did
and they even mixed up pkgs. to order for me.

I know this is long, but it feels so good to get this all down.  Between
my two daughters and grandson, I think one or the other of them has had
every symptom mentioned by the mail list.  Cody has not had a biopsy yet
but I don't think he would survive going on a gluten diet.  Within 24
hrs. of his ingestion of any gluten or dairy product he has severe
diarrhea, and the pain makes him cry.  His Dr. seems to think it isn't
necessary as long as he does "O.K." on the "almost" GF diet.

I don't seem to have CD but I cannot drink grain alcohol without
vomiting and I am dairy intolerant but I think my father did. My
grandmother told me he couldn't drink milk and for many years of his
childhood they gave him water from a place called Buttermilk Springs in
Cadda Gap AR. It seemed to help him digest his food.  They grew and
milled their own corn and he was raised on cornbread.  Gram said that
biscuits and bread made him sick. She made her cornbread with buttermilk
that she made herself by churning her own butter from 100% pure cream
and the residual was what she called buttermilk. He died in 1979 at age
66 from heart failure.

He liked to have me come visit when my children were young as at that
time I was cooking everything from scratch and GF. He told me that the
only time he ate without a stomach ache was when I cooked for him. He
was an adopted child so we know nothing about his family.  My brother
had a child that died from a cardiac stroke at age 12 and he has a
grandchild with neurological problems.  I've suggested the child be
tested for CD but the suggestion has fallen on deaf ears.

My oldest granddaughter has a three month old baby and is breast feeding
her, but the baby already has severe eczema on her forehead and scalp. I
have some influence on my gd, and I have threatened her with bodily harm
if she feeds her baby cereal. (the 2x4 again) She occasionally cares for
her little brother and knows his diet almost as well as I do. Unless
gluten is passed through her milk I don't why the baby has eczema. I
just pray that she didn't inherit CD. If she has, then that would be
5 generations of us with CD.

Kay