Hello to all: I wanted to inform you all of
something I have recently discovered, as well as something that I've known over
the past 8.5 years. My son, Koby w/cystinosis, after many, many battles with
doctors had been diagnosed with a milk protein allergy and lactose intolerance
at the age of 18 months.
Before this, he would not eat as the doc's
were shoving milk-based products down the NG, then the G-tube continuously.
I've read some other topics of discussions about how some of your children
wouldn't eat until they threw up the machine or bolus feeding. Koby was the
same way! He threw up constantly. The dietician kept "upping" his volume to
compensate for vomitting, but the more she "uped" it, the more he "uped" it!
Finally, I put my foot down with the doctors, ended up transferring him
to another hospital where they did a biopsy on his stomach to find "severe
inflammation" along with 3 of the seven layers had been destroyed (i.e.,
ulcerations). At my ever-so demanding request, they ordered him to be on a
soy-based formula and to take every single milk product out of his diet (and
there are soooo many).
After doing so, Koby began eating constantly
along with keeping his soy formula feedings down. It was MONTHS before he would
throw up again and that was due to having a "cold" (anytime he would get sick,
he'd vomit). Another plus which I didn't clue into at the time is that Koby's
cysteine level was at an all-time low! It stayed that way until he was four.
The doctor wanted to try him back on milk products, and I gave in. Within one
hour of the first feeding, Koby was throwing up again, his stomach was hurting,
he stopped eating, his nose became stuffy, and (GET THIS)...HIS CYSTEINE LEVEL
SHOT UP TO AN ALL-TIME HIGH! The doctors couldn't explain it, and in a round
about way, accused me of not giving his meds. That's when I decided for myself
to take him back off of the milk products and what do you know...the symptoms
improved and his cysteine level went down to .6 from a positive 4-6.
I
had twins 02-02-02 who were colicy from birth, spitting up constantly, never
hungry, and always screaming. I took them to several doctors to no avail. So I
began researching once again. I took them off of milk and all milk products and
most of the symptoms subsided, but there was still something else as they were
still spitting up, getting bad diaper rashes, eczema, etc.
I myself was
diagnosed with Celiac's Disease a couple of months ago, and while I was
researching to find what the doctors couldn't tell me, I stumbled across
something VERY interesting. Celiac's Disease is basically Gluten intolerance
and is extremely common in the U.S. and Europe, only in the U.S., it is very
underdiagnosed. I knew I definitely had it after the babies were born via
C-section due to having a symptom that is undeniable a marked Celiac Disease
sign...Hepitiformus Dermititis (extremely itchy, raised, fluid-filled bumps on
the skin particularly at the distal end of the extremities, shoulder blades
stomach, upper arms, and lower back. The doctors previously diagnosed this as
eczema, but were very wrong.
Basically with Celiac Disease, the only
treatment and the most effective treatment is to totally avoid ingesting gluten
(wheat protein). Since we all had one symptom or another, I took us all off of
wheat products, as well. Within 24 hours of being "wheat-free", the twins were
perfect angels, began eating again (like pigs, mind you), and they had their
first normal stool EVER (I know that's not really something that most parents
are proud of, but it's a major milestone for them). Our whole family improved
in every department, my so called "eczema" has gone totally away, my stomach
hasn't been upset since. Koby is eating like he's never eaten before and
gaining weight rapidly.
I know this seems like I'm getting way off the
subject here, but I've read so many of your posts about ulcers, not eating,
vomiting, diaper rashes, loose stools, etc., and I figured that if I can help
someone get some kind of relief (as we have found), that it's worth it!
Testing for Celiac's Disease is a simple blood test. Treatment for it
is avoiding gluten. And a major plus is that once gluten-free for several
weeks, milk-products can be added back into the diet without the signs/symptoms
of a milk hypersensitivity (vomiting) or lactose intolerance.
Who
knows? With cysteine levels dropping markedly with my son, maybe it will do the
same for your little miracle! It's definitely worth checking into. I'm not a
health professional, but do have a nursing background. I just feel that doctors
and researchers are overlooking the obvious here..the diet. If autistic kids do
better on a casein-free/gluten-free diet, I'm sure it would have some, if not
tremendous, benefits to Cystinotics. I know it has with Koby and our whole
family.
One other thing, before I close my (as one physician's
assistant put it) long-winded, extensive email, gluten destroys the villi in
the duodenum (upper portion of the small intestine), causing them to flatten
and not function properly (producing enzymes to aid in digesting foods..like
lactase to digest lactose, for example). These foods then are malabsorbed
either by means of sitting in the gut until emesis has occured, or flushing
rapidly through the intestines so quickly, they aren't there long enough to be
absorbed.
In Koby's case, the food was sitting on his stomach, making
him fill full, until he threw it up. Since amino acids are absorbed into the
blood stream via the small intestine and foods (like Milk which contains
enormous amounts of cysteine) are there for long periods of time before being
released in some way or another, it would make sense to me that the
overabundance of cysteine in our children's blood could relate to this
malabsorption.
I know the gene for cystinosis has been mapped, but
genes don't just jump out at these biogenetic engineers and say, "I'm a
Cystinosis Gene!" It very well could be the gene for Celiac's Disease and it
very well could be that all Cystinotics have it and their parents have
recessive counterparts due to all Cystinotics having a gluten intolerance,
which would (in turn) cause a casein or lactose
hypersensitivity/intolerance.
If you're like me and only want the best
for your child (or yourself if you're a Cystinotic), please check into this and
come to your own conclusions. There are many, many sites on the internet for
Celiac Disease, even the Wall Street Journal published an article about its
underdiagnosed prevalence in the United States. I'm merely trying to read
between the medical lines, here, based on my own experience.
As for our
family, we're going to continue on this gluten-free diet for the rest of our
days, since it has proved to be a prelude to our painful symptoms.
I
welcome any emails from parents, teens, adults, doctors, etc. who would like to
discuss this further. I have over 3,000 pages of research completed over the
last 8 years on my own and I'm more than willing to provide the sources, if
needed.
Here are two links, if you would like more info on Celiac:
http://www.aafp.org/afp/980301ap/pruessn.html
http://www.celiac.com/
If you would like to Email me:
twinboysmom2002@yahoo.com
Sincerely,
Angela McCoy (Koby Beck's Mom, w/Cystinosis)