THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 9, Number 5 June-August 2000
**********************************************************************
...........................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: Our Founding President Passes Away :
: Helpful Tips from the Readers :
: Highlights from the CCA Conference :
: Prevalence of CD :
: Getting Physicians to Change :
: New Research in Bone Loss :
: CD and Other Autoimmune Diseases :
: What the 2lst Century Holds :
: Is CD a Chronic Condition? :
: Vitamin and Mineral Therapy :
: You Think We've Got Problems? :
: Tissue Transglutaminase Blood Tests :
: Anti-Gliadin Antibodies :
: Endomysial Antibodies :
: Summary :
: Laboratories Offering tTG Testing :
: Newsletter Roundup :
: Living Without--Not! :
: Thiamin, Riboflavin, and Niacin :
: Hints for Making Pasta :
: Have a Very Veggie New Year :
: Gluten Solutions :
: Traveling in Europe :
: You Never Know :
: A GF Bed & Breakfast :
: Product Information :
: Taste Test Results :
: Modified Food Starch in Ham :
: Update on Diagnostic Dilemmas :
: Genetically Engineered Foods :
: Recipe Page :
: Tomato-Mozzarella Tartlet :
:.........................................:
References
Disclaimer
Miscellaneous Notes
-------------------
Our Founding President Passes Away
----------------------------------
Kathryn Davis, our founding president, passed away July 19th after a
lengthy battle with Lou Gehrig's disease. She was the reason we are
what we are. She, Marcia, and Dr. Alexander formed our group. She
was so proud of how it has grown. I hope most of you got to see the
write up in the Detroit News/Free Press, Saturday, July 22nd. [It can
be found on the internet at
http://www.freep.com/news/obituaries/davis22_20000722.htm--ed.] She
always wanted a write up about the group in the paper, and is still
running the group, even now. She got her wish. What a woman she
was!!! Marcia and I never heard her complain through all this. We
would give her all the latest news about the group, and she loved it.
How do you say goodbye to a dear friend?? You don't. You just keep
on doing the work she wanted done. This group was her "baby" and it's
up to all of us to keep it alive. She might be a little upset about
the article because it says she was responsible for the group. Her
favorite expression was, "it takes a group to be a group."
Her husband Dan and her daughter Diane were her main caregivers and
what care they gave. Her every need was met. She passed away at home
with Dan and Diane there with her. Dan and Diane request that
expressions of sympathy be made in the form of contributions to our
group to be used for research. May we always make her proud. If you
wish to make a contribution in Kathy's name, you may send it to
TCCSSG, 34638 Beechwood, Farmington Hills, MI 48335--Mary Guerriero
-=-=- -=-=-
Return to the Table of Contents
Helpful Tips from the Readers
-----------------------------
edited by Terry Kotlensky
That was a nice little break, but I'm glad to be back! I have some
helpful tips from some readers from Virginia! Charley and Jo De Meo
have called Knorr (Nancy, 800-338-8831) on Knorr Mushroom Risotto,
Italian rice 5.7 oz. It is wheat- and gluten-free, so are their
bouillon cubes. Knorr is aware of celiac disease (CD) and advises you
to read each label on all their products. They do not have or publish
a wheat- and gluten-free list. Charley and Jo also tried penne and
spirals pasta from SHS North America under their imported brand,
LOPROFIN--outstanding! You can call them toll free at 800-365-7354 or
888-567-7646.
Charley and Jo are wondering if anyone has the full address or phone
number for Gabrielle Pasta Products. You can contact me at
thisisit@bignet.net or 810-632-3083, and I will pass the information
on to them.
Well it sure was nice to get some tips from our readers. Thanks
Charley and Jo! But, I need some more people to send in their tips to
make this what it's supposed to be: Helpful Tips from the Readers!
Tips from Terry: I just got back from Mackinac Island and had a great
time! I stayed for 3 days and 2 nights. I stayed at the Inn on
Mackinac Island. They were not able to provide any meals for me, so I
had to bring all my own food. This was the first time I had ever
attempted to do this. I froze complete dinners in glass containers
from Pyrex that are freezer-, microwave-, and oven-safe. The day I
left to go on my trip, I removed 2 dinners from the freezer and put
them in a cooler along with all my other gluten-free (GF) foods
(muffins, yogurt, fruit, etc.). When I got to the island, I put all
my food in the inn's refrigerator. It worked out very well. I even
brought microwave popcorn to have as a snack whenever I wanted. I had
access to the refrigerator at all times.
I found a restaurant called the Tea Room at the Fort on Mackinac
Island and was able to eat lunch there. Excellent! They worked with
me and were able to prepare a wonderful spinach salad with all kinds
of good things in it. I made it back home safely without getting
sick, and having plenty of food. I have finally ventured out of my
safe little GF box (my home), and found it doesn't have to be so scary
after all!
P.S. I stopped at Wendy's for meals on the way to Mackinaw and on the
way home. The GF meals (as printed in an earlier newsletter) are as
follows: Chili, taco salad, baked potato with sour cream and chives,
and the Frosty's!
Well, until next month!--Terry Kotlensky
Return to the Table of Contents
Oh, Canada: Highlights from the CCA Conference
----------------------------------------------
summarized by Janet Armil, Chris Brecka, and Beth Coderre
In May we attended the Canadian Celiac Association (CCA) national
conference in Hamilton, Ontario. We found the conference edifying and
worth the trip. We also came home with a trunk full of food purchased
from GF food vendors. Next year's CCA conference will be held in
Winnipeg, Manitoba from May 25-27, 2001. For more information,
contact the CCA at 800-363-7296, or by e-mail at celiac@web.net.
The CCA website is at http://www.celiac.ca.
As an aside, we learned that there is a restaurant outside of Toronto
(Oakville, Ontario) called "Il Fornello" that has a menu page
exclusive to special dietary needs and a staff that is specially
trained and has good knowledge of food preparation for celiacs. A
half-dozen entrees can be prepared gluten-free (GF), including
bruschetta, pizza, and pasta. We didn't get to try it, but if you do,
let us know what you think. Toto, we're not in Kansas anymore!
Here are highlights from the conference presentations:
Prevalence of Celiac Disease
----------------------------
Dr. Markku Maki, Professor, Institute of Medical Technology,
University of Tampere, Finland
Dr. Maki considers the total number of diagnosed celiacs the "tip of
the iceberg", those with the clinical disease. The larger, submerged
portion of the "iceberg" represents those with clinically silent
celiac disease (CD), and those with disorders resulting from
undiagnosed and untreated CD, like osteoporosis. Looking back on
forty years of variable CD prevalence figures from Finland, Dr. Maki
discovered that prevalence figures varied over the years depending on
whether physicians at that time were looking for CD in patients with
atypical presentations (thus discovering/diagnosing more CD), or just
in patients with the typical classic textbook presentation (thus
diagnosing fewer cases of CD). These Finnish prevalence figures
reflect changes in diagnostic practices more than changes in the true
prevalence of CD.
Dr. Maki, an advocate for the early detection of CD, recommends
liberal use of serological screening (blood testing for CD-specific
antibodies) with patients presenting with minor GI symptoms, delayed
puberty, or dental enamel defects. A biopsy remains the gold standard
of diagnosis when there is strong clinical suspicion of CD (e.g., when
a patient presents with symptoms and has a family member who is a
diagnosed celiac, or when serological antibody testing is positive),
or when an endoscopy is already being performed for something else.
("While you're down there, you might as well take a biopsy to rule out
CD").
Return to the Table of Contents
Getting Physicians to Change
----------------------------
Dr. Robert Issenman, Professor of Pediatrics at McMaster University
and Chief of Pediatric Gastroenterology of the Children's Hospital of
the Hamilton Health Science Corporation
Dr. Issenman, recognizing that CCA has a long history of education
and advocacy about CD, addressed the factors effecting the continuing
education of physicians, and why it sometimes seems hard to get
physicians to change.
It's hard to get physicians' attention because demand for change comes
from so many: government agencies, insurance companies, politicians,
newspapers, and patients (so many disease associations...). Part of
the resistance to change comes from the education process; after long
schooling and apprenticeship, once out in practice, they're reluctant
to change just because of something they've read in a medical journal.
Typically, physicians gain new information from medical journals,
rounds/lectures, courses, the internet, drug salespeople, and
colleagues. This type of learning changes knowledge, but doesn't
change behavior. In order to change behavior, physicians, like the
rest of us, need several things: to see a reason to change, to be
able to "risk" change, to be shown how to change, to be able to
practice change, and to be reinforced for changing. Additionally,
physicians, like the rest of us, learn according to "change theory";
the spread of ideas follows certain laws of nature. New ideas are
adopted first by "visionaries" (about 2% of a group), then "early
adopters" (about 13%), then the "early majority" (about 34%), then the
"late majority" (about 34%). "Laggards" (those who won't change no
matter what) take great pride in not changing. CCA would best aim
change efforts toward early adopters, since visionaries are less
socially connected, and the early majority likes to wait-and-see.
A new idea begins to take hold when 10 to 20% of the target group
embrace it and begin to function as the "heart of diffusion", or
spreaders of the word. Since physicians are a part of the general
public too, one of the ways to get physicians to change is to make CD
better known and understood to the national media. Other methods
include books (with meetings to promote) about CD by physicians,
medical journals, news media (both lay and medical journalists), small
group practice-based learning, education of opinion leaders, and
opportunities for practice.
Return to the Table of Contents
Osteoporosis: New Research in Bone Loss
---------------------------------------
Dr. Jonathan D. Adachi, FRCP(C), Professor, Department of Medicine,
St. Joseph's Hospital, McMaster University, Hamilton, Ontario
Osteoporosis is a systemic skeletal disorder characterized by a
decrease in bone mass and microarchitectural deterioration of bone
tissue, with a resultant increase in bone fragility and susceptibility
to fracture. Bone is comprised of metabolically active cells
(osteoclasts for bone resorption and osteoblasts for bone formation).
Under normal circumstances, there is equilibrium between bone
formation and resorption, and bone mass is maintained. When
resorption exceeds formation, mass is lost. Bone mass increases
during childhood and adolescence, peaks in the twenties and thirties,
and declines thereafter at a rate of 1% per year. Menopause
accelerates rates of bone loss to an average of 3-5% per year.
Malabsorption of calcium, as may occur in CD, is one of the risk
factors for osteoporosis.
Prevention includes adequate dietary calcium intake, or calcium
supplementation, and vitamin D. Treatment includes adequate calcium
(over 50 years old-1500 mg/day in combination of diet and supplements
taken with food) and vitamin D intake (over 50 years old-700-800
IU/day), weight bearing exercises (not to increase bone mass, but to
increase overall conditioning and balance; only in those who have been
very sedentary does the introduction of exercise increase bone mass),
minimizing risk factors (fall-proofing a home environment), and
education about posture and prevention of falls at home. Treatment
may also include hormone replacement therapy (i.e., postmenopausal
estrogen therapy), raloxifene (a selective estrogen receptor
modulator, e.g. Evista), disphosonates like alendronate (Fosamax), or
calcitonin (in nasal spray form). The good news: research shows that
small increases in bone density result in large declines in fracture
rates, so a small increase in bone mass brings far more protection
from fracture.
Return to the Table of Contents
Relationship of Celiac Disease to Other Autoimmune Diseases
-----------------------------------------------------------
Dr. Markku Maki, Professor, Institute of Medical Technology,
University of Tampere, Finland
Is CD an autoimmune disorder? It has a trigger (gliadin), a target
(gut and other organs), an autoantigen (tissue transglutaminase),
autoantibodies (reticulin/endomysial antibodies), and genetic risk
markers (HLA, DQ2/DQ8), but, it is not self perpetuating (rather, the
gut regenerates). So, CD does not fit all the criteria of an
autoimmune disorder.
Dr. Maki assessed the connection between CD and hundreds of other
diseases. He found that these diseases can be promulgated by
untreated CD gut anomalies: dermatitis herpetiformis (DH), enamel
defects, ataxia, osteopenia/osteoporosis, and epilepsy. Diseases that
are considered associated with (not caused by) CD are thyroid disease,
insulin-dependent diabetes mellitus (IDDM), and Sjogren's syndrome.
Rheumatoid arthritis, interestingly, was not found to be associated
with CD.
Return to the Table of Contents
What the 2lst Century Holds for Celiacs
---------------------------------------
Ann Whelan, Publisher, Gluten Free Living, Hastings-on-Hudson, New
York
Ms. Whelan expressed great optimism about our future. She sees
landmark advances leading to significant and positive changes in our
lives, and in the lives of those who will be diagnosed more easily and
on a more timely basis. It could go something like this within the
next 25 years:
Doctors will be able to diagnose CD without the endoscopy, which means
more people will be diagnosed more easily and on a more timely basis.
Simple, cost-efficient CD diagnosis will help revolutionize treatment
of problems such as osteoporosis and infertility.
The GF diet will be used routinely for problems other than gluten
sensitivity.
More vendors will enter the market, offering a wider variety of safe,
nutritious foods, hopefully at lower prices. Restaurants, hospitals,
airlines, caterers, and our own families will have easier access to GF
foods they'll need to purchase for their clientele/relatives.
Research and expanding knowledge will bring changes to the lives of
non-celiacs. For example, if the GF diet is determined to be helpful
with other autoimmune diseases, as limited research is currently
suggesting, we may have a simple way of reducing the impact of
devastating problems like Type I diabetes and multiple sclerosis.
Easier access to GF foods will curtail the anxiety we feel in certain
situations, and help quell fears about contamination--and starving!
(Imagine local grocery stores that carry only GF food and GF bakeries
in cities across North America.) Right now there is a GF bakery in
Philadelphia called "Mr. Ritt's", run by Paul Kelty and Rick Gallo.
Mr. Kelty feels it's best to go all-or-nothing in the GF baked goods
business as the cost of cleaning up the contamination from
wheat-containing baked goods could be prohibitive.
We will use computers to see our doctor, attend virtual support group
meetings, and order all of our food, not just our GF supplies.
As researchers work on making diagnosis easier, determining
prevalence, and figuring out the serendipitous benefits of the GF
diet, we need to support research and get the word out by contacting
individuals and groups who need to know about CD (doctors, dietitians,
chefs, restaurateurs, and groups for those with osteoporosis,
infertility, or other problems to which undiagnosed CD can lead).
We can also work with vendors, talk to local supermarket managers, and
help restaurants, hospitals, and other institutions to learn how to
serve their GF clients with ease. We need to get remaining chips off
our shoulders about our diagnosis; if we think we won't be
accommodated, we won't, if we think we will, we will.
Return to the Table of Contents
Is Celiac Disease a Chronic Condition?
--------------------------------------
Valerie Fines, self proclaimed, ordinary person-with-a-twist (CD)
When Ms. Fines thinks of a chronic condition as a "lasting
circumstance", her answer to the question is "yes". A chronic
condition affects us on three levels: personal, social, and familial.
On a personal level, we may contend with managing our time, lack of a
support system, disruption to future plans (no such thing as a
spontaneous celiac!), loss of autonomy/control, an uncertain or
unpredictable future, and distressing emotion. It is important to
remember, amidst all of this, that you are still you (an ordinary
person with a twist).
On a social level, there may be an array of adjustments. Our changes
affect our entire families. Friends and family initially have little
knowledge, many fears, and a need for education. CD changes our lives
and the way we relate to other people. We celiacs need to commit to
educating many others while maintaining a positive self image.
On a familial level, ability to adapt depends on a family's resources
(emotional, financial, time, etc.) and support in the community.
When the celiac in the family is a child, the family has to focus on
both nurturing and providing guidance. Three questions arise for
parents: 1) How does CD affect my relationship with my child? 2) How
does CD change his/her relationships with siblings? 3) How does my
child learn the skills to manage?
Ms. Fines recommends contact with a health care professional six
weeks after diagnosis because, by then, the euphoria of "having a
solution" is gone and the life-long perspective has entered.
Supportive follow-up that's focused on psychological well-being helps
you make necessary adjustments, and avoid emotional traps.
Ms. Fines left us laughing with a couple of classic CD behaviors.
She noted that when celiacs have symptoms, they ask three questions,
in this order: 1) Did I ingest gluten? 2) Am I having a reaction to
something else? 3) Do I have the Flu? And when two celiacs meet,
they always ask the same two questions: How long did it take you to
get diagnosed? Where do you buy your bread? So true.
Return to the Table of Contents
Vitamin and Mineral Therapy for Celiacs
---------------------------------------
Aileen Buford-Mason, B.S., Ph.D., independent research analyst, health
care writer, lecturer, and educator
All vitamins and minerals are used in concert in our bodies, and all
of them are needed at all times, so an absence of, or deficiency in,
any one disrupts many different functions and may cause many diverse
symptoms. Additionally, there are optimal amounts of each, and more
is not better. The best source of vitamins and minerals is the food
in your diet. If vitamins and minerals are not sufficient in your
diet, or you take medications that affect absorption or utilization of
vitamins and minerals, or you have a health condition that increases
your need for vitamins and minerals (like CD), then you could benefit
from supplements.
In general, there is debate in the medical and scientific community
about supplementation, which is confusing to the lay person. There is
some evidence, though, that calcium and antioxidants may be especially
helpful for celiacs. So, Dr. Buford-Mason's recommendation for
celiacs: Even if you are on a nutritious GF diet, you could benefit
from a good, well-formulated multivitamin and mineral supplement.
Look for one that contains all the B vitamins, antioxidants (vitamins
A, C, E; minerals selenium and manganese), a full spectrum of trace
minerals, and minerals in an easily absorbed form. As always, talk to
your physician or nutritionist for guidance.
Return to the Table of Contents
You Think We've Got Problems?
-----------------------------
submitted by Janet Armil
I had been quite absorbed with fantasizing about a weekend I will be
spending on my own in Italy, complete with imaginary, but very
serious, discussions with servers and chefs about eating
gluten-free....Then I came across this, and the irony just sent my
funny bone to tickling. It comes from "The Bride of Anguished
English" by Richard Lederer. It is due out this fall.
[The following is reprinted with the permission of the author, Richard
Lederer.--editor]
Unappetizing Menus
------------------
On a Chinese menu you can read, "Mr. Zheng and his fellow workers
like to meet you and entertain you with their hostility and unique
cooking techniques."
A Warsaw restaurant advertises with the exultation, "As for the tripe
served here, you will be singing its praises to your grandchildren on
your deathbed."
A menu in a Swiss restaurant boasts, "Our wines leave you nothing to
hope for."
If you travel a lot, you know that some of the most memorable
experiences can occur in restaurants and that some of the most
memorable "English" appears on foreign menus. Eating in a foreign
restaurant can be a genuine adventure spiced by culinary and
linguistic entertainment.
A Shanghai Mongolian hot-pot buffet guarantees, "You will be able to
eat all you wish until you are fed up!"
An Indian restaurant advertises, "Our establishment serves tea in a
bag like mother."
A Tel Aviv hotel advertises its room service: "If you wish for
breakfast, lift our telephone, and the waitress will arrive. This
will be enough to bring your food up."
A Sicilian menu assures, "Guests are advised that all fruits served
here have been washed in water passed by the management."
Another Italian menu requests that you "...please pay the house waiter
the price of your consummation."
A hotel notice in Ankara, Turkey, announces, "You are invited to visit
our restaurant where you can eat the Middle East Foods in a European
ambulance."
A restaurant in Indonesia's Jakarta Hilton beckons customers with this
come-on: "Grill and roast your clients!"
On a "family style" restaurant in Hong Kong appears the sign "Come
broil yourself at your own table."
A Tokyo restaurant requests that you "please do not bring outside
food, excluding children under 5."
And a Japanese steak house boasts its house specialty: "Teppan
yaki--before your cooked right eyes."
One restaurant in Rome listed on its menu "Mixed boils to pick." The
Italian phrase is simply "mixed boiled meats of your choosing," and it
is a tasty dish of simmered beef, veal, chicken, tongue and sausages.
However, something got lost in translation. Italian eggplant is
melanzane. Some conscientious translator searched English
dictionaries and found that mela means "apple" in English and zane
means "nutty or crazy." So eggplant in Italy is often listed as "mad
apples."
Return to the Table of Contents
Tissue Transglutaminase Blood Tests
-----------------------------------
by Tom Ryan
[Tom Ryan is a Technical Service Specialist at INOVE Diagnostics, Inc.
This article is derived from two messages he recently sent to the
CELIAC e-mail list.<1><2>]
There has been a lot of discussion about serological testing for
celiac disease recently, specifically regarding tTG (tissue
Transglutaminase) testing. I will try to answer some of the many
questions that have appeared on the CELIAC e-mail list about all of
the tests.
First, and this applies to any of the blood tests, you must currently
be on a gluten containing diet for the tests to be accurate.
Antibodies are produced by the immune system in response to substances
that the body perceives as threatening. The immune response that your
body produces is its response to being exposed to gluten in the diet
and its subsequent effect on the intestinal mucosa. If there is no
gluten in the diet, then there is no response that we can measure. A
brief change in diet will not have a noticeable effect. If you have
been gluten free for a week or so, it won't make any great difference.
The response might be marginally less but the difference is
insignificant because the body has not had time to respond to the
change. Conversely, if you have been gluten free for a protracted
period of time and decide to be tested, a brief challenge of a couple
of weeks is not enough to elicit a response and get an accurate test.
There are several steps that take place to generate an immune respon
se and it takes time both for the positive reaction when gluten is
present and to clear the antibodies when gluten is eliminated. There
has been a great deal of discussion about how much and how long a
challenge should be and there is no consensus. Talk with your doctor.
My personal feeling is that the minimum is 2 slices of bread per day
for 6 weeks to get an accurate test but I would not try to second
guess the doctor.
There are basically four tests that can be performed to aid in
diagnosing celiac disease. Notice that I say they will "aid" in
diagnosing celiac disease. Immunology is fairly accurate but it is
far from being an exact science. All of the lab tests, regardless of
the type or source, are presented as aids to diagnosis. They should
not be used alone as a basis for diagnosis but rather are intended to
be considered in conjunction with the physical examination of the
patient as well as the reported symptoms, etc. by a trained
physician. There has been a great deal of confusion about what the
tests are and I hope to alleviate some of the misunderstandings.
There are many terms that we hear: tTG, IgA, IgG, ELISA, etc. What
are all of these? Some contributors to the list make reference to the
"IgA" or "IgG" test or to the "ELISA" test. These labels are
incomplete for our purposes and could be referring to any number of
different tests.
We all have, within our bodies, a family of closely related although
not identical proteins that are capable of acting as antibodies.
These are collectively referred to as "immunoglobulins". Five major
types of immunoglobulins are normally present in the human adult.
They are IgG, IgA, IgM, IgE and IgD. Each of these is a shorthand way
of writing "immunoglobulin gamma G" (or A or M, etc.) and they each
perform a different function in our systems. IgG is the principal
immunoglobulin in human serum. It is important in providing
long-lasting immunity. IgA is the principal immunoglobulin in
secretions from respiratory and intestinal mucosa. IgE is a gamma
globulin produced by cells lining the intestinal and respiratory
tracts. It produces the antibodies associated with most
hypersensitivity (allergic) responses. It is associated with asthma,
hay fever, etc. IgM is a globulin formed in almost every immune
response in the early part of the reaction. IgD is a rare protein
present in normal sera in a tiny amount. These designations refer to
the type of protein that is carrying the antibody in question. Both
IgG and IgA subtypes of anti-gliadin antibody are produced, hence we
refer to them as "IgG gliadin" or "IgA gliadin". Collectively they
are anti-gliadin antibodies.
Anti-Gliadin Antibodies
-----------------------
Both IgA and IgG anti-gliadin antibodies (AGA) are detected in sera of
patients with gluten sensitive enteropathy (celiac disease). IgG
anti-gliadin antibodies are more sensitive but are less specific
markers for disease compared with IgA class antibodies. IgA
anti-gliadin antibodies are less sensitive but are more specific.
[The specificity and sensitivity values will vary from lab to lab,
depending not only on technique but also on patient selection.--Dr.
Alexander, TCCSSG physician advisor.]
In clinical trials, the IgA antibodies have a specificity of 97% but
the sensitivity is only 71%. That means that, if a patient is IgA
positive, there is a 97% probability that they have CD. Conversely,
if the patient is IgA negative, there is only a 71% probability that
the patient is truly negative for CD. Therefore, a positive result is
a strong indication that the patient has the disease but a negative
result doesn't necessarily mean that they don't have it. False
positive results are rather uncommon but false negative results can
occur.
On the other hand, the IgG anti-gliadin antibodies are 91% specific
and have an 87% sensitivity. This means that they will show positive
results more readily but there isn't as strong a correlation with CD.
It is less specific. Patients with other conditions but not afflicted
with CD will occasionally show positive results. IgG anti-gliadin
antibodies are detectable in approximately 21% of patients with other
gastrointestinal disorders. This test might yield false positive
results but is less likely to yield false negative results.
A sensitive testing protocol includes testing for both IgA and IgG
anti-gliadin antibodies since a significant portion of celiac patients
(approx. 2-5%) are IgA deficient. This combined IgA and IgG
anti-gliadin antibody assay has an overall sensitivity of 95% with a
specificity of 90%.
The type of test used to detect the anti-gliadin antibodies is called
an ELISA. This is an acronym and it stands for Enzyme Linked
Immuno-Sorbent Assay. "ELISA" is not a test in itself. It is a
method of testing and it is a relatively simple test to perform. It
involves putting a measured amount of diluted patient serum into the
wells of a specially constructed and prepared plate and incubating it
for a period of time with various chemicals. The end result is a
color change, the intensity of which is dependent upon the
concentration of anti-gliadin antibody (or other protein being
measured) in the patient serum. The ability of this colored solution
to absorb light at a particular wavelength can be measured on a
laboratory instrument and mathematically compared with solutions that
contain a known amount of anti-gliadin antibody to arrive at a number
for the amount of antibody present. The sample can then be classified
as negative, (0-20 units); weak positive, (21-30 units); or moderate
to strong positiv e if greater than 30 units.
The purpose of testing for anti-gliadin antibodies includes, in
addition to diagnosis of gluten sensitive enteropathy, monitoring for
compliance to a gluten free diet. IgA gliadin antibodies increase
rapidly in response to gluten in the diet and decrease rapidly when
gluten is absent from the diet. The IgA anti-gliadin antibodies can
totally disappear in 2-6 months on a gluten free diet, so they are
useful as a diet control. By contrast, IgG anti-gliadin antibodies
need a long time, sometimes more than a year, to become negative.
[Some cases never become negative.--Dr. Alexander] The reverse is
also true. That is, a patient with CD who has been on a gluten free
diet and tests negative for IgA anti-gliadin antibodies, will show a
rapid increase in antibody production when challenged by gluten in the
diet. Approximately 90% of challenged patients will yield a positive
IgA anti-gliadin result within 14-35 days after being challenged. The
IgG antibodies are somewhat slower.
Endomysial Antibodies
---------------------
IgA class anti-endomysial antibodies (AEA) are very specific,
occurring only in CD and DH. These antibodies are found in
approximately 80% of patients with DH and in essentially 100% of
patients with active CD. IgA endomysial antibodies are more sensitive
and specific than gliadin antibodies for diagnosis of CD. Antibody
titers (dilutions) are found to parallel morphological changes in the
jejunum and can also be used to reflect compliance with gluten-free
diets. Titers decrease or become negative in patients on gluten free
diets and reappear upon gluten challenge.
The test for anti-endomysial antibodies is more subjective and more
complicated for the lab to perform than the anti-gliadin assays. It
involves serially diluting some of the patients serum, that is,
diluting it by 1/2 then 1/4, 1/8, 1/16, etc. and putting these
dilutions on a glass slide that has some sort of tissue affixed to it.
The slide is then processed with various solutions and examined under
a fluorescent microscope to determine if any of that serum binds to
any of the proteins in the tissue. If so, then that patient is
confirmed as having antibodies to that particular protein. This
method of testing is called an IFA or sometimes IIFA. It stands for
Indirect Immuno-Fluorescent Assay.
The selection of which tissue slide to use is determined by what
specific protein, hence which antibody, you are specifically looking
for. Endomysial antibodies react with the endomysium, which is a
sheath of reticular fibrils that surround each muscle fiber.
Therefore, to detect endomysial antibodies, you would want to use a
tissue substrate that contains a lot of muscle tissue. The substrate
used most often for this assay is distal sections of the esophagus.
These are very thinly sliced and fixed to the slide. They contain
muscle fibers and not much else so there is a lot of endomysium
available to react with the anti-endomysial antibodies.
Reading this test involves viewing the reacted slides with a
fluorescent microscope to make the determination. This requires a
highly skilled and trained eye and, of necessity, is somewhat
subjective. You are looking for a green fluorescence in the
endomysium covering the muscle fibers. The test is reported as the
"titer" or final dilution in which the fluorescence can still clearly
be seen. As you can imagine, this is very subjective. There are no
standardized values and it is up to the judgement of the particular
technician what the endpoint titer is. Recently, (1998) the
endomysial antigen targeted by the anti-endomysial antibodies was
identified as the protein cross-linking enzyme known as tissue
transglutaminase (tTG). This has enabled the production of an antigen
specific ELISA assay incorporating tTG as a reliable and objective
alternative to the traditional and subjective Immunofluorescence based
assays. In clinical trials, the correlation with the endomysial IFA
assay has been shown to be clo se to 100%. This is a test that has
been very well received in the professional community. It is an
ELISA, like the anti-gliadin antibody test and, as such, is not
subject to interpretation like the IFA. That is the greatest
advantage to this new test! With this or any ELISA, the response is
measured on an instrument that calculates the amount of light of a
particular wavelength that is absorbed by the solution and prints out
a numerical result. There is no chance of human error skewing the
results because there is no judgement call involved. The ELISA plate,
regardless of what you are testing for, is processed with at least
three control sera (sometimes as many as eight) in addition to the
unknown sample being tested. There is a negative serum and at least
two positive sera containing different levels of the antibody being
tested. There are specific requirements for the absorption levels of
these three controls. That is, each of them has a minimum or maximum
(or both) number that must be seen by the instrument in order for it
to be a valid test. If there is any variance from these expected
numbers, it is an indication that something went wrong and the test
results are discarded and the test repeated. There is therefore no
way the technician could report inaccurate results, (assuming they
diluted the sample correctly). Either the test was valid, and you can
rely upon the accuracy of the result, or the test is invalid, and the
entire result discarded. If any error was made during the processing
of the ELISA plate, it would result in the control sera numbers being
out of range and the entire test result would be thrown out.
Summary
-------
The tTG ELISA is measuring the same thing that the endomysial IFA is
measuring but with a method that is more sensitive and specific and
not subject to interpretation.
IgA class reticulin antibodies are found only in celiac disease and
dermatitis herpetiformis. These antibodies are found in approximately
60% of CD patients and 25% of DH patients. This test is falling into
disuse because of the limited utility and the availability of better
tests. It is an IFA performed on a tissue substrate with all the
attendant problems that go along with it.
The development of all of these serum assays has tremendously
simplified the diagnosis of CD and improved the accuracy as well. The
original criteria for diagnosis according to the European Society for
Pediatric Gastroenterology and Nutrition, (ESPGAN), involved a year of
arduous studies with: a) an initial positive gut biopsy, b) 6 months
on a gluten free diet, c) a second, negative gut biopsy, d) a gluten
challenge for 6 months and e) a third, positive gut biopsy. The
revised ESPGAN criteria call for positive results in two of the
serological tests confirmed by a single positive biopsy. In practice,
many gastroenterologists are utilizing the serologies in conjunction
with a controlled diet and the clinical presentation to form a basis
for diagnosis without the need for the invasive procedure.
Through the auspices of the Celiac Disease Foundation and others, a
professional symposium and workshop was organized earlier this year in
Marina Del Rey, California with participants from Europe as well as
the U.S. to establish standards for reporting test results. This
should improve testing and diagnosis even more. At the conclusion of
this conference a Celiac Disease Standardization Committee was formed
to investigate and make recommendations on a standardized method of
reporting results.
Laboratories Offering tTG Testing
---------------------------------
The following laboratories offer tTG ELISA testing and gliadin
testing. This list is not intended to be all inclusive but it is
representative of some of the largest labs in the USA:
Lahey Clinic Foundation
41 Mall Rd.
Burlington, MA 01805
Alletess Medical Lab
216 Pleasant St.
Rockland, MA 02370
Pathology Laboratory
195 Hanover St.
Portsmouth, NH 03801
Foundation for Blood Research
69 U.S. Route 1
Scarborough, ME 04074
Univ. of Pittsburgh Med Ctr
3715 E. Carson St.
Pittsburgh, PA 15203
Geisinger Medical
100 N. Academy Ave.
Danville, PA 17822
American Medical Labs
14225 Newbrook Dr.
Chantilly, VA 20151
APL Health Care
4230 S. Burnham Ave.
Ste 108
Las Vegas, NV 89119
Prometheus Laboratories
5739 Pacific Center Blvd
San Diego, CA 92121
Meridian Valley Clinical Lab
515 W. Harrison St, Ste 9
Kent, WA 98032
Immuno-Laboratories, Inc.
1620 W. Oakland Park Blvd
Ft. Lauderdale, FL 33311
University of Iowa
200 Hawkins Dr
Iowa City, IA 52242
Mayo Clinic Foundation
221 4th Ave., SW
Rochester, MN 55902
Childrens Memorial Hosp
2345 N. Lincoln Ave.
Chicago, IL 60614
University of Chicago
5835 S. Cottage Grove Ave.
Chicago, IL 60637
Baylor University Med. Ctr.
660 N. Hall St.
Dallas, TX 75246
Associated Regional & Univ. Pathologists (ARUP)
500 Chipeta Way
Salt Lake City, UT 84108
Quest Diagnostics (Formerly Smithkline)
7600 Tyrone Ave.
Van Nuys, CA 91405
Quest Diagnostics-Nichols, Inc.
33608 Ortega Hwy.
San Juan Capistrano, CA 92675
The following Labs offer anti-gliadin testing:
Lab Corporation of America
1447 York Ct.
Burlington, NC 27215
William Beaumont Hosp.
1818 Maplelawn Ave.
Troy, MI 48084
Virus Reference Lab
7540 Louis Pasteur Ave.
San Antonio, TX 78229
Specialty Laboratories
1752 Cloverfield Rd.
Santa Monica, CA 90404
Columbia University
1150 St. Nicholas Ave.
Room 507
New York, NY 10032
Lab Corporation of America
20 Johnson Dr.
Raritan, NJ 08869
Beutner Laboratory
3435 Bailey Ave.
Buffalo, NY 14215
BioMedical Resources
21 N. York Rd.
Hatboro, PA 19040
Rheumatology Diagnostics Laboratory
10351 Santa Monica Blvd.
Los Angeles, CA 90025
Montefiore Medical Ctr.
Steuben Ave. and Gunhill Rd.
Bronx, NY 10467
Some of these labs offer tTG testing with their own homemade reagent
kits. Most of the labs on both lists also offer endomysial antibody
testing.
INOVA Diagnostics, Inc. is not a licensed reference lab. We are a
manufacturer of many diagnostics kits with a primary focus on
autoimmune diseases. We do not perform the testing for patients at
this facility. We develop, manufacture and supply diagnostic products
to hospital clinical labs and reference laboratories world wide. In
addition to the anti-gliadin and anti-tissue Transglutaminase ELISA
tests, we also supply products for anti-endomysial antibody and
reticulin antibody determinations as well as many others.
You will need to contact your physician to order these tests. They
are not available without a prescription or doctor's order.
Return to the Table of Contents
Newsletter Roundup
------------------
compiled by Jim Lyles
This section contains articles and excerpts from newsletters produced
by other celiac groups.
..............................................
: :
: Excerpts from _CDF Newsletter_ :
: ------------------------------ :
: Winter 2000 Elaine Monarch, publisher :
: Celiac Disease Foundation :
: 13251 Ventura Blvd., Suite 1 :
: Studio City, CA 91604-1838 :
:............................................:
Living Without--Not!
--------------------
by Karen Davis, the Gluten-Free Guru-illa
All right, I admit it. I'm proudly gluten-free, for life. And the
next time that I hear someone whine about how tough this diet
is--well, let's just say that it won't be pretty.
I've been gluten-free for a long time--over a decade. And the things
that I live without now more than make up for the minor
"inconvenience" of living gluten-free. What do I live without?
Severe, "untreatable" anemia (living in southern California I no
longer need lined wool pants and heavy sweaters in summer's 100 degree
weather.) Arthritis (at 28, I couldn't climb a flight of stairs or
walk around a block; now at "39" and holding, I work out at the "Y" 4
days a week.) Persistent "tummy trouble" (I don't need to know where
every bathroom in the mall is--or at least I didn't until I started
potty-training a toddler.) A foggy memory (until I started suffering
from child-induced sleep deprivation.) Multiple chemical sensitivity
(now but a memory.) Nasty antibiotics as vitamins (I spent 3 weeks
out of every 12 on high-dose broad spectrum antibiotics to treat
recurrent infections.)
After so much time gluten-free, I've really forgotten many of the
"inconveniences" of my former lifestyle. I now chase an active 5 year
old child, full-time. Being gluten-free as a mom actually has some
benefits! "No dear, we can't have lunch there; Mommy wants to eat,
too and the food there gives her a tummy-ache." I probably had the
only two-year-old in Los Angeles whose favorite lunch was "Thai
noodles." Even now, she usually asks for something for lunch that we
both enjoy: Mexican, Thai, or Chinese. We eat better at home, and my
daughter is more willing to try new things than most of her
classmates.
Even travel is easier. When I first started on this diet, I carried
supplies that would give me anywhere from 2000 to 5000 calories a day,
depending on climate and expected activity level. Now, I can pack for
an extended trip by throwing a few protein bars or some nuts and dried
fruit in my pack, knowing that I'll be able to replenish supplies
along the way from gluten-free items routinely carried in most chain
supermarkets.
In trade for the bread, cookies and cakes of my former life, I have
been given a wonderful new life to live, full of amazing places to
visit, wonderful new friends to visit with, and the energy to do it
all!
Return to the Table of Contents
..............................................
: :
: Excerpts from _Alamo Celiac_ :
: ---------------------------- :
: Mar. 2000 Lynn Rainwater, editor :
: San Antonio CS Support Group :
: 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:............................................:
Thiamin, Riboflavin, and Niacin in the GF Diet
----------------------------------------------
a review by Lynn Rainwater
This is a review of "Thiamin, riboflavin, and niacin contents of the
gluten-free diet: Is there cause for concern?", by Tricia Thompson,
MS, RD, Journal of the American Dietetic Association, July 1999.
The objective of this study was to determine if gluten-free cereal
products available to American celiacs contain similar amounts of
thiamin, riboflavin, and niacin as the enriched wheat flour products
they are intended to replace. Thompson chose these nutrients to look
at because dietitians in this country do not expect deficiencies in
them and therefore may not check their levels in the diets of celiac
patients.
Results
-------
Nutrient data was available on most of the commonly used gluten-free
flours with the exception of the newer bean flour combinations.
Thompson found that gluten-free flours (with the exception of corn
flour and corn meal) are not vitamin-enriched, although some mixes and
products were enriched.
Here is a summary of her results:
* None of the 15 varieties of rice flour were enriched.
* Corn flour and corn meal were available in both enriched and
unenriched varieties.
* Only 35 of 368 gluten-free products looked at in the study were
enriched.
* Only 4 of 16 manufacturers/distributors carried enriched products.
* Only 5 of 95 mixes were enriched.
* Only 26 of 117 ready-made products were enriched.
* None of the 80 pastas (13 brands from 10 manufacturers) were
enriched.
* 17 gluten-free cereals from "less commonly known" cereal
manufacturers were not enriched (Kellogg's Corn Pops were
enriched.)
A comparison of 64 gluten-free products with similar wheat flour
products showed that many gluten-free cereal products do not provide
the same levels of thiamin, riboflavin, and niacin. Thompson found
that 39 gluten-free products contained lower amounts of all three of
these B vitamins, while 14 were lower in two of them, and 6 contained
lower amounts in one vitamin. (Four gluten-free products contained
higher amounts of all three vitamins, and one contained the same
amounts of all three.)
In her nutrient comparisons, Thompson unsurprisingly found that brown
rice flour compared more favorably with enriched wheat flour than did
white rice flour; indeed, the level of niacin in brown rice flour was
equal to that in enriched wheat flour. Soy flour, both defatted and
full fat, also showed well in comparison, although soy was also
somewhat lower in nutrient levels than enriched wheat flour--with one
exception: full fat soy flour had more than twice as much riboflavin
as enriched wheat flour. The really bad news came when several other
commonly used gluten-free flours were looked at: Potato starch flour,
tapioca flour, and cornstarch contained no thiamin, riboflavin, or
niacin.
Recommendations
---------------
Thompson makes the point: "Dietitians may suggest consumption of more
nutrient-dense, gluten-free cereal foods in the form of whole grains
(e.g., rice and corn) or enriched products, as well as an increased
intake of non-cereal-based foods rich in one or more of these
nutrients, such as legumes, nuts, seeds, green vegetables, dairy
products, meat, poultry, and fish. Vitamin supplementation may also
be indicated."
Thompson pointed out that celiac women who are pregnant or
breastfeeding have increased demands for thiamin, riboflavin, and
niacin and should be monitored to avoid deficiencies. Also, any
celiacs who depend on unenriched gluten-free cereal products may
develop deficiencies. She concludes that "..the gluten-free diet of
persons with celiac disease should be routinely assessed for
deficiencies of these B vitamins."
Return to the Table of Contents
......................................................................
: :
: Excerpts from _Derby City Celiac_ :
: --------------------------------- :
: Winter 1999-2000 Bill Banks, editor in chief :
: Greater Louisville Celiac Sprue Support Group :
: PO Box 7194 :
: Louisville, KY 40257-0194 :
:....................................................................:
Hints for Making Pasta
----------------------
by Marge Johannemann
At our September meeting Marge Johannemann demonstrated pasta making,
using the Kitchen Aid 325 watt mixer. Marge created spaghetti with
the meat grinder attachment and the pasta making plates. (These
attachments are available wherever Kitchen Aid appliances are sold.)
Marge used Bette Hagman's Homemade Pasta recipe, on page 150 of her
first cookbook, The Gluten-Free Gourmet; Living Well Without Wheat.
Here are some of Marge's tips for successful pasta making:
1. When cutting pasta using the Kitchen Aid Mixer and attachments,
the dough should be slightly dry.
2. Pasta is easy to cut by hand. Roll the dough very thin and cut
with a pizza cutter..
3. Be careful not to over-cook pasta since it tends to absorb liquid
from sauces, cheese, etc. and will fall apart.
4. Store bought dry pastas can be very good. Again, don't overcook.
I prefer using Bi-Aglut corn/rice spaghetti or Ancient Harvest
quinoa (pronounced KEEN'-WAH) elbows, shells and spirals. I find
that these pastas hold their shape and taste more like wheat
pastas.
5. Rice lasagna noodles work very well for lasagna dishes and De Boles
makes a no-boiling oven-ready variety. You will get the best
results using their recipe for Basic Lasagna that appears on the
box. (This recipe calls for more sauce, since the sauce cooks up
faster with dry noodles.)
6. GF homemade pasta does not dry well. You can make several batches,
however, and freeze them in zip-lock freezer bags for use at a
later time.
7. While there is nothing quite so delicious as homemade pasta, boxed
varieties are more than acceptable for casserole dishes.
Return to the Table of Contents
........................................................
: :
: Excerpts from _Celiac Connections_ :
: ---------------------------------- :
: Jan./Feb. 2000 Barbara Jordan, editor :
: The Celiac Disease Resource, Inc. :
: PO Box 621 :
: Glenmont, NY 12077 :
:......................................................:
Have a Very Veggie New Year
---------------------------
Karen Anderson, CSW, RD, CDN Nutrition Advisor, The Celiac Resource,
Inc.
For those planning a gluten-free, vegetarian diet, Karen Anderson
suggests the following combinations for completing the protein in your
meals:
* Nature's Path Honey'd Corn Flakes topped with unprocessed (no added
oils) soynuts
* Homemade bean flour muffins made with Hains Soy Milk
* Crunchy Skippy Peanut Butter Spread on a frozen banana and rolled in
Nutty Rice Cereal
* Quaker White Hominy Grits with Chopped Blue Diamond Almonds and Sue
Bee Honey
* Ener-G Foods Rice Almond Bread spread with Arrowhead Mills Tahini
* Homemade Hummus: Dip into it with Edward & Sons Brown Rice Crackers
* Smucker's All Natural or Jif Peanut Butter (lowfat or regular) on
Orville Reddenbacher's Caramel Rice Cakes
* Gillian's Sesame/Poppy Seed Roll with Arrowhead Mills Almond Butter
* Homemade "trail mix" combining Dole Raisins, Hershey Chocolate
Chips, Rice Crunch Ems Cereal and Planter's Dry Roasted Peanuts or
pumpkin seeds
* Health Valley Fat Free Chili Burrito or Enchilada
* Tostitos Corn Tortilla Chips with Ortega Refried Beans
* Jolly Time Popcorn and a side dish of Planters Dry Roasted Peanuts
* Tinkyada Brown Rice Penne Pasta with Lawry's Pesto Sauce and fresh
pine nuts
* Grilled polenta cakes topped with chopped tomatoes, garlic, navy
beans and scallion ragout
* Bush's Deluxe Vegetarian Baked Beans with a side of homemade GF corn
bread
* Healthy Choice Lentil Soup with a side dish of Pastariso rice pasta
* Gluten-free elbow macaroni salad tossed with Wishbone Italian Salad
Dressing
* Canned, unseasoned black beans mixed with Uncle Ben's Converted
White Rice or Brown Rice and fresh chopped herbs
* Risotto made with fresh peas, corn, and unenriched basmati rice
simmered in Swanson Vegetable Broth.
* Stir fried tofu in Wesson Canola Oil with sesame seeds and San-J Soy
Sauce with fresh cut vegetables
* Dole California Style Trail Mix
[Please consult your registered dietitian to ensure you are meeting
your nutritional needs before making any major changes in your
diet.--Dorothy Vaughan, dietitian advisor for TCCSSG]
-=-=- -=-=-
Gluten Solutions
----------------
by Bryan Van Noy, Primary Founder
As more and more celiacs are properly diagnosed, a growing number of
gluten-free manufacturers are suddenly emerging. They bring the
promise of high quality, great-tasting products that will deliver a
broader variety of foods to the celiac community. However, most new
manufacturers are relatively small and family owned, which limits
their ability to sell nationally. Therefore, most of us will
unfortunately never even see some of these great new products in our
local health food stores.
Fortunately, the emergence of new gluten-free manufacturers has
brought with it a few companies hoping to bring them all together and
create a more convenient way for all celiacs to shop. One such
company is Gluten Solutions, a new online grocery store that was built
from the ground up as a gluten-free specialty store. Founded by four
entrepreneurs from California, the idea for the company actually came
about as a result of a cancelled lunch appointment.
As I was on my way to a client lunch appointment I received a last
minute cancellation call. Opting for a quick lunch alone, I kept
myself company with a copy of the LA Times. Buried deep inside the
Business Section, I found a spotlight article about a new kind of
specialty flour company--Authentic Foods run by Steve Rice. As I read
on about Celiac Disease, the special challenges a gluten-free diet
presents, and the unusually high misdiagnosis rates, I was shocked to
learn that up to 1 in 250 Americans may have Celiac Sprue, but only a
fraction ever know it! Moreover, I was in disbelief that although I
had worked in health care for 5 years, I had never even heard of
Celiac Disease.
After finishing the article, curiosity got the best of me, and I
stopped in a local health food store to find the gluten-free section.
After much searching, I finally came across a tiny section of
gluten-free flours and mixes, buried at the very bottom of the
narrowest aisle in the store. Astonished, I started thinking how
difficult it must be for the thousands of celiacs to find a decent
variety of gluten-free foods at fair prices. Where did they shop?
After all, this health food store only offered 3 brands, and 2 of the
3 were from big manufacturers who appear to have developed their
gluten-free line simply as an afterthought. There was poor selection,
the prices were outrageous, and the gluten-free section was
practically hidden in the back of the store.
Since I had always been left unfulfilled by my "corporate" job, I set
out to do something more meaningful and rewarding. After several
months of research and brainstorming, I and the three co-founders of
Gluten Solutions decided that we had formulated a better way to shop
gluten-free. Our idea was simple; to create an Internet/mail order
business that would warehouse a huge selection of gluten-free
products, and ship them to the customer with one low shipping rate.
We would use the Internet, a mail order catalog, and a toll-free
number to accept orders. We also committed to a standard that every
customer's order would ship out the same business day or next business
day from the time they ordered. Further, we decided to model our
customer service standards after those of the most respected customer
service retailer on the West Coast, Nordstrom. The vision became
clear--to offer the largest selection of gluten-free foods and the
most convenient, hassle-free way to purchase them.
On August 24,1999, Gluten Solutions opened its doors with just 15
products from only four manufacturers. Just three months later, we
had grown to offer select products from Authentic Foods, Ener-G Foods,
Pamela's Products, The Really Great Food Company, Pastariso, Legumes
Plus, Sylvan Border Farm, Gluten-Free Pantry, and Nature's Highlights.
Within another month, we were offering additional products from
De-Ro-Ma (Glutino), 'Cause You're Special, Gluten-Free Cafe, and Jowar
(makers of Sorghum). To date, 95% of all our orders have been shipped
the same business day a customer has ordered. If you'd like to save
money on shipping charges when you order online or by mail, then
Gluten Solutions may be worth a look. Our comprehensive web site
allows you to study nutrition information and ingredients for each
product, to chat about celiac related issues, and you can even read or
post your own customer reviews for every product offered (like
Amazon.com). For those who prefer more traditional channels, we also
offer a mail order catalog and a toll-free number at 1-888-8-GLUTEN
(M-F 9-5 CST).
Return to the Table of Contents
...........................................
: :
: Excerpts from _Gluten-Free Friends_ :
: ----------------------------------- :
: Winter 1999 R. Jean Powell, editor :
: Spring 2000 Montana Celiac Society :
: 1019 So. Bozeman Ave. #3 :
: Bozeman, MT 59715 :
:.........................................:
Traveling in Europe
-------------------
by Margrit Syroid
I recently returned from a six-week visit in Switzerland, and I have
some important news to share with other Celiac patients if planning a
trip overseas. They may be wondering, "Will we 1) have to starve? 2)
bring a suitcase full of food? or 3) spend hours researching where to
buy gluten-free products?"
Well, I can solve their problem! Actually, I have to credit family
and friends, who solved it for me, even before I arrived there.
The company I know that services all of Europe is called Schar. They
put out numerous brochures with pictures, contents (ingredients),
weights, etc.
It might be important to mention that in the German speaking
countries, Celiac translates into "Zoliakie"; in Italian "Celiachia";
in Spanish "Celiaca"; and in French (the best one) "Des Intolerants Au
Gluten!"
Humor aside, the most helpful booklet I found is titled in the various
languages, Points of Sale, 1998. [Per a telephone conversation with
the author, the booklet was published by Schar and was picked up by a
friend from a Reformhaus in Switzerland--ed.] It lists all the
various stores in the various European countries by name, address, and
phone numbers in many of the cities. It proved very helpful to me.
(These countries are listed: Great Britain, Netherlands, Belgium,
France, Portugal, Spain, Italy, Austria, Germany, Switzerland).
What surprised me most was the fact that these gluten-free products
are sold mostly in Pharmacies, Drugstores and Reformhauses.
Apparently you can always order items not available, and expect to
receive them in 24 hours. The choices are numerous, from bread,
flour, mixes, cookies, to pizza crusts !
In the above mentioned booklet....prospective travelers can get
information or hopefully can order the booklet itself.
-=-=- -=-=-
You Never Know
--------------
You Never Know when something you've written or said will have an
impact on someone else. The following story is a powerful example of
serendipity. By R. Jean Powell.
A Montana family had been struggling for months with the illness of
their two-year old little boy, taking him from doctor to doctor,
hospital to hospital. He suffered asthma attacks and severe eczema.
He was underweight, looking 9 months old, not two years old. He was
fatigued, weak and miserable. A doctor suspected a wheat allergy, so
his worried and anxious mom went to a health food store, where she
found a few recipes for gluten- and wheat-free food with information
about gluten enteropathy. Calling the telephone number on the recipe
sheet connected her with Eloise Faber of Deer Lodge, who was puzzled
that that particular information had come to rest in a distant health
food store, because it contained outdated information and recipes she
had written several years before.
The mom spoke of her fears to Eloise who wisely recommended that they
have the baby tested for antibodies. A rare opportunity for all of us
was the upcoming University of Maryland Serological Screening to be
held during Dr. Fasano's lecture in Billings on June l9th. The
family made the trip and the baby was tested.
Two-year old children are not the best subjects for anti-endomysial
and anti-gliadin studies. Because of age, results can be deceptive.
Still, it was recommended by the University of Maryland Lab, on the
basis of his blood test results, that he undergo the endoscopic
biopsy, which he did. Reading the results, the local
gastroenterologist felt that the baby was not a celiac, that his
symptoms were caused by asthma. The parents, disheartened, were back
to square one.
I reminded the mom that Dr. Fasano would appreciate receiving villi
slides from Montana biopsies for his research, then contacted the
office of the gastroenterologist who agreed to send a tissue sample to
the Maryland lab. The 2-year-old meanwhile was slipping into more
problems with his health. His appearance was typically celiac
according to Kerry Anselmi and others who had seen him at the Billings
blood drawing--but that is not an acceptable scientific estimation. A
month passed with no word--until yesterday. Dr. Irene Berti and Dr.
Fasano scrutinized the samples and both concluded that, while subtle,
the results showed villous atrophy indicating that this little guy is
indeed a celiac.
Now this child has a second chance at living a good, strong, healthy
life. It's pretty easy to understand the trauma his parents have
suffered, but there are tears of joy in many a Montana eye this night.
And it happened because years ago Eloise Faber's recipes and handouts
found their way to a health food store 150 miles from her hometown and
sat there awaiting the mom of a very sick little boy to pick them up.
There are, as you know, no coincidences...
Return to the Table of Contents
...........................................................
: :
: Excerpts from _The WNY Celiac News_ :
: ----------------------------------- :
: Winter 1999-2000 Peg Quinn, editor :
: WNY Gluten-Free Diet Support Group :
: PO Box 611 :
: East Aurora, NY 14052 :
:.........................................................:
A GF Bed & Breakfast: Looking for a Bed & Breakfast with a full
gluten-free gourmet breakfast?. Welcome to the Avery House in
Stratford, Ontario. It is a newly-decorated Victorian house with
immaculate rooms, and in a great location. For more information, call
519-273-1220.--Marilyn & Cliff Hauck
Return to the Table of Contents
..............................................................
: :
: Excerpts from the Washington Area CS Support Group :
: -------------------------------------------------- :
: newsletter: Winter 2000 Joany Janicki, editor :
: 5410 Connecticut Ave., NW #408 :
: Washington, DC 20015 :
:............................................................:
Product Information:
* Celestial Seasonings (Warner-Lampert, 800-524-2854) makes herbal
throat drops that soothe and calm sore throats and coughs. They
come in a variety of flavors such as Harvest Cherry and Honey-
Lemon Chamomile and all are gluten-free.
* Edy's (888-837-4438, http://www.edys.com) has information on
the gluten status of their ice creams on their web site! Just
click on "Freezer Case" and choose a flavor. The gluten status
appears at the end of the nutritional information. As a general
rule, any gluten in any of their ice cream, frozen yogurt, or
novelty products is present only in added bakery products such as
cookies or shortcake. The ice cream itself contains no gluten.
The modified food starch that you may find listed in the
ingredients is derived from corn and is therefore gluten-free.
In addition, their entire Whole Fruit Sorbet line and all of
their Fruit Bars are gluten-free. The Dreamery flavors that are
gluten-free include Banana Boogie, Black Raspberry Avalanche,
Caramel Toffee Bar Heaven, Cashew Praline Parfait, Chocolate
Peanut Butter Chunk, Crme Caramel, Cuppa Joe, Galactic Chocolate
Swirl, Harvest Peach, and Vanilla.
* Sargento (800-243-3737, http://www.sargento.com) is another
company that lists their gluten-free products on their web site!
The company uses microcrystalline cellulose as an anti-caking
agent on most of their shredded cheeses. This ingredient is a
white odorless, tasteless, totally natural powder made from
cellulose, a naturally occurring component of most plants. It is
not derived from wheat, oats, barley or rye.
-=-=- -=-=-
Taste Test Results
------------------
The results are in! At our last meeting, we received several
gluten-free products from Glutino (http://www.glutino.com, 800-363-
3438) and the Gluten Free Cookie Jar (888-GLUTEN-0,
http://www.glutenfreecookiejar.com). The following are member's
comments on the food sampled:
Glutino:
-- Dr. Schaer Pizzirilli Crackers--good texture, crisp and tasty,
overall very good. They taste like a cracker with "pizza
spice"--my son adores these and we have already ordered more.
-- Dr. Schaer Grissini Sticks--crispy, the kind you find on the
table while you wait for your dinner. Yuck, they are dry and
flat tasting.
-- Glutino Corn Pizza Shells (attending members got to take one
home)--my son loved it--we added spaghetti sauce, cheese, olives,
and Hormel pepperoni (says gluten-free on the label!), and
toasted it in the toaster oven. It was like his own personal pan
pizza.
-- Glutino Vegetarian Pizza (attending members got to take one
home)--very tasty, and easy to prepare--just pop it in the
toaster oven, very crisp crust.
Gluten Free Cookie Jar:
-- Orange Chiffon Bundt Cake--good, nice flavor.
-- Pumpkin Cookies--very good, but too sweet. Very good, delicious,
really good.
-- Peanut Butter Cookies--very good, great, good peanut flavor,
excellent.
While not part of the taste test, a member brought in a cranberry
orange bread made from a Gluten Free Pantry mix, that received rave
reviews.
Return to the Table of Contents
............................................................
: :
: Excerpts from the Houston Celiac-Sprue Support Group :
: ---------------------------------------------------- :
: newsletter: Jan./Feb. 2000 Janet Y. Rinehart, editor :
: 13722 Ashley Run :
: Houston, TX 77077 :
:..........................................................:
Modified Food Starch in Ham: The Food Safety and Inspection of the US
Dept. of Agriculture has amended federal regulations to permit the
use of binders in "ham with natural juices" products and other cured
pork products. Therefore, "modified food starch", in an amount not
exceeding 2% of the product formulation, is allowed. [Remember:
"modified food starch" could come from a safe source such as corn,
potato, or tapioca; or it could come from a gluten source such as
wheat.--ed.]
Anything labeled "Ham Water Added" must now be suspected of containing
soy protein concentrate, modified food starch, and/or carrageenan.
For more information, see the applicable pages of the Federal
Register. These can be found on the internet at
http://www.fsis.usda.gov/oa/fr/98-064.htm.
-=-=- -=-=-
Highlights from the 1999 CSA/USA Conference
-------------------------------------------
summarized by Janet Rinehart
Update on Current Diagnostic Dilemmas: Celiac Disease
------------------------------------------------------
Matthew S.A. Bachinski, M.D., Gastroenterologist, Dept. of Medicine,
Medical College of Georgia, Augusta, GA
Who to Screen. The following should always be screened for celiac
disease (CD):
First degree relatives, including parents, children and siblings
Those with autoimmune disorders
Those with IgA deficiency
Those with IDDM (type I diabetes)
Those with CTD's (connective tissue disease)
Those with Down's Syndrome (4-7% are likely to have CD)
The following may also be screened:
Those of short stature (8-10% will have CD)
Those with infertility problems
Those with intractable (uncontrollable) seizures
Those with abnormal liver tests
Those with osteoporosis
Those with alopecia (hair loss)
Those with lymphoma
CD and Diabetes:
* The association of IDDM (insulin-dependent diabetes mellitus) with
CD has been known for at least 40 years.
* Both are "autoimmune" disorders.
* Many diabetics have chronic diarrhea, often labeled a "diabetic
diarrhea".
* If diabetics with chronic diarrhea are screened for CD and found
to have CD, a combined gluten-free and diabetic diet will help
manage the whole patient and decrease the risk of cancer.
Genetically Engineered Foods: Unanswered Health Questions
----------------------------------------------------------
Michael Hansen, Ph.D., Research Associate, Consumer Policy and
Consumers Union
A genetically modified food is a plant or animal that contains a gene
inserted from a different species, or it expresses more copies of one
of its own genes, or does not express a specific gene. The expression
of the altered gene is important because this codes for production in
the nucleus of making proteins not normally synthesized by the cell.
Many genetically-modified (GM) foods have great potential to reduce
hunger and nutritional deficiencies around the world. And the risk
for potential human sensitivity is equally great. One key is complete
label identification not only that the product is genetically
modified, but the sources [of the modified gene(s)]. One can always
find someone who is allergic to anything. Incomplete disclosure on
labels is an old and continuing problem for celiacs.
Experiments in gene modification in plants are continuing for
herbicide tolerance in crops, longer shelf life, more durability in
transportation, etc.
Human health issues associated with genetically engineered foods are
the development of unanticipated toxins, transfer of allergens,
transfer of antibiotic resistance, and change in nutrient levels.
Right now it is up to the companies to determine whether products are
safe. They are on the "honor system". However, when finances are
affected, we can't be sure.
Citizens, companies and researchers have a responsibility to see there
is no harm to wildlife, soil, human health, and people with allergies.
Because genetic engineering research is so expensive it is largely
controlled by for-profit corporations whose primary goal is return on
investment, not necessarily public good. These corporations are
rapidly buying up seed companies and gaining control of entire food
production systems and educational-research facilities. Farmers who
use this patented technology, meanwhile, are prohibited from the
time-honored tradition of saving seed to use the following season.
They are forced into a costly cycle of corporate dependency.
The U.S. is almost alone in the world in not labeling GM foods. We
don't know if those GM foods on the market now are safe; no studies
have been done. The absence of evidence is not proof of safety. We
are concerned about chronic long-term affects. Complete disclosure
labeling must be a requirement.
Return to the Table of Contents
References
----------
<1> "tTG Testing", by Tom Ryan, from the CELIAC Listserv archives on
the Internet, posted June 19, 2000. To obtain a copy, go to
http://maelstrom.stjohns.edu/archives/celiac.html and click on
"June 2000, week 3".
<2> "tTG Testing, part 2, list of labs", by Tom Ryan, from the CELIAC
Listserv archives on the Internet, posted June 16, 2000. To
obtain a copy, go to
http://maelstrom.stjohns.edu/archives/celiac.html and click on
"June 2000, week 3".
Return to the Table of Contents
Recipe Page
-----------
**********************************************************************
Tomato-Mozzarella Tartlet
(also known as "Yuppie Pizza")
2 Nature's Hilights brown rice pizza crusts, thawed (sold in the
frozen food section in health food stores)
1-1/2 cups shredded mozzarella cheese, divided (I use Frigo brand
chunk)
3/4 cup grated parmesan cheese, divided (I use Frigo brand wedge)
4-6 Roma tomatoes, sliced 1/8 inch thick, divided
1-2 tsp. dried thyme, divided
salt and pepper to taste
1 Tbsp. olive oil, divided
Preheat the oven to 425 degrees F.
Place the crusts directly on the oven rack and bake 3-5 minutes.
Remove the crusts from the oven and sprinkle them with mozzarella
cheese. Return the crusts to the oven rack and bake another 3-5
minutes, until the cheese is melted and bubbly.
Remove the crusts from the oven. Cover them with a single layer of
tomato slices. Top them with a layer of parmesan cheese. Sprinkle
with thyme and season with salt and pepper. Drizzle with olive oil.
Return the crusts to the oven 3-5 minutes, or until the parmesan
cheese melts. Remove from the oven when the crusts are crispy, with
some softness toward the center (but not too much softness or the
crusts will be gummy).
Cut each crust into 6-8 wedges. Serves 8 as an appetizer.
Tips: These may be cooked on a covered grill. Modify the recipe as
follows:
* Over medium heat, cook the crusts directly on the grill rack about
3-5 minutes, checking to avoid burning.
* Remove them from the grill and assemble all ingredients on the
cooked side of the crusts.
* Return the crusts to the grill and cook 3-5 minutes, checking to
avoid burning. Don't undercook.
With either method, you'll have to play with the cooking times, as
there is a perfect window between under- and over-done with these
crusts. The payoff, however, is delicious. My gluten-eating family
asks me to make them for every family gathering. Enjoy.
This recipe comes to us from Janet Armil, who served them at a recent
board meeting.
Return to the Table of Contents
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Pediatric Advisor: Robert Truding, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Mary Guerriero
Vice President: Sue Gentilia
Past President: Diane Morof
Finance Committee: Tom Sullivan
Sue Gentilia
Secretaries: Marilynn Ponto
Pat Michael
Web Page Editor: Pam Murphy
Newsletter Editor: Jim Lyles
Contributing Editors: Tom & Carolyn Sullivan
Group E-mail address: tccssg@yahoo.com
Group web page: http://community.mlive.com/cc/celiac
Disclaimer:
-----------
All recommendations, information, dietary suggestions, menus, shopping
guide suggestions, medical updates, miscellaneous articles, and
recipes in this newsletter are intended for the benefit of our
members, readers, and the general public. No liability is assumed by
the Tri-County Celiac Sprue Support Group or any of its members.
Information in The Sprue-nik Press has been approved by our
physician and dietitian advisors. Individuals should consult with
their physicians and dietitians before following any medical or
dietary recommendations in The Sprue-nik Press.
Original material used in The Sprue-nik Press is placed in the
public domain for the benefit of all celiacs. The information is not
copyrighted to facilitate the easy exchange of celiac information.
Feel free to reproduce any portion of this newsletter, unless it
specifically states otherwise. All we ask is that you indicate where
the information came from.
The Sprue-nik Press is published by the Tri-County Celiac Sprue
Support Group (TCCSSG), a local chapter of CSA/USA located in
southeast Michigan. Members receive printed copies of this newsletter
(8+ issues per year), a shopping guide, and a new member packet full
of articles and useful information. Out of area subscriptions are
welcome. For subscription information, send a note to
tccssg@yahoo.com.
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