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[IPp] Renee's well-informed celiac answer

To Denise and others wanting Renee's well-informed celiac answer, here is it
one more time:

Date: Mon, 27 Oct 2003 20:21:36 EST
From: email @ redacted
Subject: [IPp] Re: [IP] constipation/Celiac

In a message dated 10/27/2003 7:36:38 PM Eastern Standard Time, 
email @ redacted writes:
I'd also suggest that you ask your doc to run blood tests for celiac disease
next time you have other blood work done.  CD is another autoimmune 
 disease that can present as either diarrea or constipation, or without
symptoms at all, for that matter. I'm glad to see someone bring this
up....the following is excerpted from my 
monthly Diabetes Updates:
    I have long advised families to "DO YOUR HOMEWORK" when advocating for 
your children's health. Somehow, I never knew that my own "ignorance" about 
celiac disease was NOT "bliss". Classically, celiac disease "presented" with

diarrhea, failure to thrive (delayed growth), and abnormal stools. It was 
 considered to be a rarity, affecting 1 in nearly 4000 people. In the past
few years however those beliefs are being shattered as a rapidly growing
population of 
undiagnosed "silent celiacs" is being discovered in the USA. Some
 believe that as many as 1 in 133 people may have it, only 1/3 of whom
"present" with diarrhea & 40% of whom have NO symptoms. When I started
hearing about 
 several children with diabetes whose blood testing had shown positive
antibodies  associated with celiac, despite the absence of "classic
symptoms", I wondered if Melissa should be tested. None of her previous 4
endocrinologists had ever 
mentioned it nor had anyone even asked about the frequency of stomach aches,

 despite the fact that so many parents comment anecdotally about that
complaint. Finally, 9 months after I first asked for the blood work,
Melissa's current 
endo called me with the test results done in New York this summer: all 3 
"markers" had come back very positive. 
     Celiac disease is an inherited autoimmune disorder that affects the 
 digestive process of the small intestine. When someone with celiac consumes
- - the protein found in wheat, rye, & barley, his or her immune system 
 responds by causing an inflammation of the lining of the small intestine
that results in malabsorption of important nutrients into the body.
Undiagnosed and 
 untreated, celiac disease can lead to other autoimmune disorders,
osteoporosis, infertility, neurological conditions and years of misdiagnosis
by doctors 
unfamiliar with this growing problem.     
      On October 9th, an endoscopy was done at Columbia-Presbyterian
in New York City by Dr. Peter Green, one of the few celiac specialists in
country. Even without the pathology report, Dr Green could SEE the damage in

her small intestine, consistent with celiac. Furthermore, he believes that
possibly PRECEDED her onset of diabetes, which correlates with recently 
released studies (October 2003 issue of the Journal of the American Medical 
 association: JAMA -- Norris et al. 290 (13): 1713) theorizing that the
introduction of gluten (the proteins that comprise grains) triggers a
reaction in an 
 under-developed immune system of a baby that can result in heightened
autoimmune  sensitivity in those children predisposed genetically. Had I
KNOWN all that I now know, I might have "connected the dots" sooner. Instead
we treated each of 
 Melissa's symptoms: her constant fatigue ( had her do an overnight hospital
sleep study), depression ( therapy & medication), constipation ( fiber
 anemia ( iron pills), stomach pains ( Gas-X and nexium)..OR...simply
attributed  them to yet another side effects of diabetes and/or high blood
sugars. Now I know that these may be documented symptoms of celiac disease.
The body's inability 
to tolerate gluten damages the proximal ( upper) portion of the intestine, 
 depriving the body of essential nutrients. Even something as seemingly
unrelated as emotionally needy/ clingy children ( which describes Melissa
perfectly as 
a child) is believed to be related, since these children may never feel
"right".  More interesting still are other listed symptoms of infertility,
birth weight babies, hypothyroidism, irritable bowel, osteoporosis- all of 
which I have or had, so Dr. Green also did blood work on me yesterday. The 
 absence of acute intestinal distress is no guarantee that one doesn't have
celiac, if another family member has been diagnosed, or if there are already

 autoimmune conditions diagnosed. Given Melissa's diagnosis & my
hypothyroidism, I have a 1 in 4 chance of being positive too. (note: my
results turned out to be 
    The "good news" is that almost magically, by totally removing gluten ( 
 bagels, pizza, cookies, cereal, pretzels, etc) from one's diet, the body
"heals" itself so well that Melissa should no longer be saying "Mom - why am
I always 
tired..it's not normal for a 20 yr old to always feel like this?" within a 
matter of days, weeks or months.
    The bad news is that this is a lifelong dietary change. Even tiny
of unseen gluten in caramel coloring, in malt, in modified food starch, in 
soy sauce ( usually contains wheat), etc can perpetuate the autoimmune
that was raging in her intestines.   But as I told Melissa, if all that
done to date to keep her healthy enough to take advantage of a diabetes cure
s omeday is thwarted by NOT KNOWING that something else is occuring, then
sabotaging our efforts. She may be swimming in the "wrong gene pool", but by

 knowing that her kidneys were leaking protein, we were able to intercede
with an ACE inhibitor & decrease those levels 95%. Many parents STILL tell
me their 
 doctors disregard the need to check microalbumin levels, yet in the 6 1/2
years that Melissa has been on this medication, I have seen nothing but 
 increasingly optimistic reviews of the benefits of this medication in those
at risk of microvascular complications. Once again, this does NOT mean that
everyone with 
diabetes NEEDS this intervention, but wouldn't you want to do so, if you 
 KNEW..With today's nutritional labeling, insulin pumps, increased
availability of gluten-free products, etc, living with this dual diagnosis
is "do-able" and 
certainly preferable to the alternatives of a lifetime of suffering & unseen

 damage. The blood can be drawn anywhere, but the lab which will assess the
results is critical in order for accurate interpretation. The complete
celiac antibody 
screening should include:
    anti-gliadin (AGA) IgA
    anti-Gliadin (AGA) IgG
    IgA anti-tissue transglutaminase (tTG)*** This is the more recent test &

has proven to be very predictive. High antibody levels are usually
of celiac disease, but should be confirmed by an intestinal biopsy.  
     Believe me, after all the advocacy I have done, and continue to do, for

those affected by breast cancer and diabetes, NO WAY I needed another 
 "cause".....but since this has been handed to us, NO WAY will I sit
silently by. As a breast cancer survivor, I know all too well how critical
early diagnosis can 
be, which is probably why I'm having so much trouble "accepting" not having 
KNOWN more about this disease sooner.
Renee (pump mom to Melissa- dx'd 9/16/92/ dx'd with celiac 10/9/03)
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