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: :
: Excerpts from _Alamo Celiac_ :
: ---------------------------- :
: June 1999 Lynn Rainwater, editor :
: July 1999 San Antonio CS Support Group :
: Sep. 1999 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:............................................:
A Hospital Stay
---------------
There's nothing like a hospital stay to grab a celiac's attention. It
did get mine, anyway. You're a captive audience when it comes to the
food tray they deliver to your room three times a day. Whether you're
on clear liquids, as I was when I was admitted to an Austin hospital
last month, or solid foods, the mental warning signs go up.
I had read about talking to a dietitian on staff about your dietary
needs, if ever the occasion of hospitalization came up. Seemed easy
enough. Tell them you are a celiac patient and all your meals will be
gluten-free.
Well, I'm joining the ranks (and there's plenty of horror stories out
there) of those who will never take the "safety" of a hospital
environment for granted.
Clear broth was derived from a packet of instant hidden gluten
ingredients. Thankfully, although I was hooked up to an IV, I was
conscious and able to quiz the nurses on what was in the broth,
juices, and gelatin. Celiac Disease was something none of them had
heard of. I had to become the teacher.
I'm very blessed to have a husband who could go out to Whole Foods and
buy gluten-free chicken broth and juices for me. It saved me from
getting even sicker on the liquids I would have been served. The food
(solid) would have been a much bigger challenge.
This, as I mentioned before, is not an isolated case. After my own
personal experience, I talked to many others who had dealt with the
same issue.
All of the hospital "veterans" advised the same thing: be prepared.
Stock up on canned gluten-free broths. Have a stash of gluten-free
crackers and breads on hand. And most important: Advise your family
or close friends that their help will be needed in bringing in food
that you can consume.
When you get sick or require surgery, the last thing you need to be
concerned about is food. Just as you would prepare for an emergency
in a fire drill, look ahead and have a game plan.
Prior to my time as a patient recently, I had stuck my head in the
sand, so to speak, and hoped I would never have to deal with this.
Now I've had my wakeup call, realizing that life happens while you're
making tidy little plans.
I did well during my hospitalization, thanks to family, and I'm
getting my survival kit ready just in case I need it again. [This
article was not signed.--ed.]
-=-=- -=-=-
Coeliac Disease in Primary Care
-------------------------------
This is a case finding study by Harold Hin, general practitioner;
Graham Bird; Peter Fisher, consultant physician; Nick Mahy, consultant
histopathologist; Derek Jewell, consultant gastroenterologist; British
Medical Journal, vol. 318, Jan. 16, 1999. Reviewed by Lynn
Rainwater
The objectives of this study were to provide evidence of
underdiagnosis of Celiac Disease (CD) and to describe the main
presenting symptoms of CD in primary care. Nine practices in and
around the English market town of Banbury, serving a population of
70,000, participated.
The project is described as a "case finding study." This means
participants were selected based on what were thought most likely to
be the modes of presentation at a general practice. These were:
Irritable bowel syndrome
Anemia
Family history of CD
Infertility
Malabsorption symptoms or diarrhea
Weight loss
Fatigue or "tired all the time"
Short stature
Thyroid disease
Failure to thrive
Diabetes
Epilepsy
Arthralgia (joint pain)
Eczema
During October 1996 to October 1997, the first 1,000 patients who met
any of the above criteria received endomysial antibody tests. This
included 271 male patients and 729 female patients. Of these, 30 had
positive results. These 8 male and 22 female patients were then
biopsied--all of them were found to have CD.
Symptoms: What were their symptoms? Most patients (25 out of 30)
presented with non-gastrointestinal symptoms. The doctors working on
the study felt, "Our most important finding is the presence of anemia:
of patients who had this presentation, 11% of the female patients
tested and 23% of male patients tested had coeliac disease. We
recommend that the endomysial antibody should be one of the first line
investigations for unexplained anemia in the community."
Also, they point out that "tired all the time" was among the main
presenting symptoms. Several of these patients had been labeled with
chronic fatigue syndrome. The presenting symptoms by frequency of
incidence were:
# Patients Symptoms
---------- --------
15 Anemia
9 "Tired all the time"
6 Family history
4 Malabsorption
3 Anemia (past)
2 Thyroid
2 Weight loss
1 Diarrhea
1 Failure to thrive
1 Liver function test results raised
1 Odd neurology
1 Unexplained macrocytosis
Note: Some patients presented with one symptom, others with more. In
addition to the 18 patients with anemia or past anemia, three more had
an incidental finding of anemia.
Did you notice that none of these undiagnosed celiacs had irritable
bowel symptoms? Of the 1,000 patients who had received the antibody
test, 132 had irritable bowel symptoms, but none of these had CD,
"...suggesting that coeliac disease rarely masquerades as the
irritable bowel syndrome in general practice, although such a
presentation is not unknown."
Comments: In the year before this study, seven cases of CD had been
diagnosed in the Banbury area. The study found 30 celiacs: "...the
resulting fourfold increase in incidence was solely due to active case
finding during the study year." There is a message here for American
doctors: "Look and ye shall find." We would all agree that a major
reason many American celiacs have gone for years without a diagnosis
or with a wrong diagnosis is because our general practitioners and,
yes, even many gastroenterologists, if they even think of CD, consider
it "rare" and fail to test for it.
The doctors point out that delayed diagnosis results in complications
such as osteoporosis, infertility, and malignancy. Although they
recognize that the costs of antibody tests and biopsies are high, they
feel that "...these expenses are justified, given that coeliac disease
is not only a treatable disease but also has serious preventable long
term complications."
Who paid for this well-designed and successful study? Costs for the
endomysial antibody tests and for Dr. Harold Hin to spend one session
per week for one year to coordinate the study were met by Nutricia
Dietary Care, a maker of gluten-free diet foods.
In the absence of a corporate sponsor with deep pockets, we must fund
our own U.S. incidence study.
-=-=- -=-=-
New Bette Hagman Book: Bette Hagman's latest cookbook, _The
Gluten-Free Gourmet Bakes Bread_, has just been released. This
hardcover book contains 200 recipes. According to the publisher, it
is "...a breakthrough bread book for the nearly million celiacs and
millions more with wheat allergies." The list price is $27.50. The
best price we've found is $17.87 plus shipping at Buy.com (on the
internet at http://www.buy.com). The big internet book dealers
(Barnes and Noble, Amazon.com, and Borders) have it at $19.25 plus
shipping.
.........................................
: :
: Excerpts from _Lifeline_ :
: ------------------------ :
: Summer 1999 Leon Rottmann, editor :
: CSA/USA, Inc. :
: PO Box 31700 :
: Omaha, NE 68131-0700 :
:.......................................:
Sensitivity of Antibodies in Diagnosing Celiac Disease<3>: 101 cases
were studied, including 69 untreated celiacs and 16 first-degree
relatives. Antiendomysium antibodies (EmA) and antigliadin antibodies
(AgA) were compared with the degree of villous atrophy in biopsy
samples from the subjects.
The positive predictive value of EmA for Celiac Disease (CD) was
excellent because all EmA-positive patients were diagnosed with CD.
However with partial villous atrophy only 9 of 29 (31%) had positive
EmA. None of the 16 first-degree relatives had positive EmAs.
AgA were detected in 39 of 69 patients (62%). A combination of EmA
and AgA showed a sensitivity of 76%.
It was concluded that although EmA sensitivity in total villous
atrophy is excellent, in partial villous atrophy the sensitivity
appears to be disappointing. EmA and AgA have only limited value in
screening programs for CD.
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