THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 5, Number 4 May/June 1996
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: What's Inside Search For :
: ------------- ---------- :
: Miscellaneous Notes . . . . . . . . . -1- :
: A Poem by Ben Boldt . . . . . . . . . -2- :
: Celiac Blood Tests . . . . . . . . . . -3- :
: CD: Past, Present, and Future . . . . -4- :
: CD and Bone Disease . . . . . . . . . -5- :
: Newsletter Roundup . . . . . . . . . . -6- :
: Recipe Page . . . . . . . . . . . . . -7- :
:................................................:
Disclaimer
Miscellaneous Notes:
---------1----------
Have Cupcake, Will Travel: Parents of celiac children need to keep a
cache of cupcakes on hand in the freezer for friends' birthday
celebrations and parties at school. Often that cupcake becomes a mess
as it travels, especially if the child is doing the carrying. Here
are some suggestions for a neater cupcake:
* Freeze the cupcakes in a Tupperware or similar container so that
the icing doesn't stick to anything as it freezes. Then send the
cupcake to school in a cupcake-size plastic container to keep the
icing intact.
* Slice the cupcake in half horizontally and ice the inside to make a
cake and icing sandwich. For an added flair you can make two
slices and have a mini torte.
* Instead of using regular icing, you can make a candy icing using
chocolate chips. (Be sure to look in your shopping guide for
brands and flavors because not all morsels are GF.) Microwave the
chips for a minute to get them soft and ice the cupcakes quickly
before the candy gets hard. After the candy gets hard the cupcake
travels well because there is no melting mess. Be sure to use a
sturdy cake with this "icing". Bette Hagman's Sponge Cake (_The
Gluten-Free Gourmet_, pg. 69) and the cake instructions for her
Triple-Duty Muffin Mix (_More From the Gluten-Free Gourmet_, pg.
332) both work well.--Luanne Holder
Return to the Table of Contents
Mrs. Richardson
-------2-------
by Ben Boldt
How much will Toni Richardson be missed? Last month, you read a
couple of tributes to Toni written by adult members of the group.
Since then, we received the following poem, written by eight-year-old
Ben Boldt. It is a measure of Toni's impact on the group that Ben
should write such a poem, for it has been two years since it was
determined that Ben's original diagnosis was wrong and that he did not
have celiac disease. So Ben's memories of Toni come from a time when
he was merely six years old. He hasn't forgotten her in the two years
since then, has he?
Mrs. Richardson was so nice.
She made foods for the Celiac group with rice.
The foods she made had no rye, oats, barley or wheat.
But everything she made was a great treat.
She was our master chef of the Celiac World.
She was always in the kitchen,
Cooking everything from cakes to chicken.
Her pizza and hamburg buns were the best,
They were so much better than all the rest.
Our lives are much easier thanks to Mrs. Richardson,
And I know she will be in our hearts forever.
Return to the Table of Contents
Celiac Blood Tests
---------3--------
by Dr. Thomas Alexander
summarized by Jim Lyles
Dr. Thomas Alexander, a gastroenterologist out of Beaumont Hospital
and our group's physician advisor, spoke at our April meeting. What
follows are some highlights of his talk.
Antibodies are proteins that the body makes to kill foreign invaders
(viruses, bacteria, etc.) One of the first antibodies found that
could be used to diagnose CD was the antigliadin antibody. Gliadin is
the part of gluten that seems to cause the problem for celiacs. There
are two kinds of antigliadin antibodies: IgA and IgG. Tests for
these two antibodies will pick up about 90% of the patients with
untreated CD. Once you start a GF diet, these antibodies start to
come back down to normal. The IgA antibodies will usually drop back
to normal within a few of months; the IgG antibodies may come down to
normal within several months to a few years, and in some cases may
stay up indefinitely. That does not mean that you still have active
CD (although in some cases these blood tests are used to monitor
compliance to the GF diet).
The antiendomysial antibody test is also about 90% accurate. It is
more accurate in cases of people with more severe disease. Celiacs
who have only minor changes on their biopsies will often have negative
antiendomysial test results. It is also a bit more specific then the
antigliadin test.
A "sensitive" test is very likely to pick up cases of the disease it
is screening for, and very unlikely to miss cases. A "specific" test
is very unlikely to be positive for any disease other than the one be
screened. It turns out that the antiendomysial and antigliadin tests
are not specific to CD; there are other conditions that can yield
positive test results. One of these is dermatitis herpetiformis (DH).
It turns out that about 90% of the DH patients either have CD or will
develop it. These tests can also come back positive for a number of
conditions that are not related to CD.
There is a third test called the antireticulin antibody test. It is a
little more specific than the antigliadin test, but is not as
sensitive so it is going to miss a lot of cases.
A physician may order only one of these tests, but generally we just
order all three of them. These are helpful during the course of the
diagnosis; they help determine whether or not to proceed with a
gastroscopy or biopsy. These tests can also be useful as
corroborative evidence in a patient with an intestinal biopsy
consistent with CD. Some doctors also routinely repeat the tests on
annual basis. Dr. Alexander does not routinely repeat the tests;
he'll order it when he sees some symptoms that make him suspicious of
active CD.
A third way to use the antibody tests is to screen relatives of a
diagnosed celiac for CD. Somewhere between 2-10% (perhaps as many as
15%) of the people who have CD also have a first-degree relative with
CD. So it makes sense to screen the first degree relatives (the
parents, siblings, and children of the celiac patient) for CD. Once
you get beyond the first degree relatives, it is not generally
necessary to screen for CD unless, of course, there are symptoms
consistent with CD.
The other type of blood test to talk about is genetic testing. This
is an area that has been evolving rapidly over the last few years.
One of the problems in this area is the nomenclature has changed so
that articles written five years ago use different terms than reports
written today.
The body has to identify foreign particles (bacteria, viruses, etc.)
and distinguish them from itself. It does this through a series of
proteins that have certain configurations that will "fit" to certain
foreign molecules. It is similar to a child's toy, a box with a set
of differently shaped holes; the idea is to have the child put the
correctly shaped object in each hole. The body is genetically
programmed to make these "holes". When a foreign particle floats
along and happens to fall into a matching hole, it sets off a complex
series of interactions that sets off the inflammatory process to kill
off this foreign invader. This is determined through a class of
proteins called the "Human Lymphocyte Antigen (HLA)" system. There
are different classes of this system, classes I, II, and III. The
proteins that fit the class I antigens are present in virtually all
the cells in the body. The class II antigens are the ones that are
involved with CD. Of these there are two, DQB1*0201 and DQA1*0501
that encod e the DQ2 protein. These are present in about 95% of
celiacs. The other 5% have antigens that encode the DQ8 protein. One
or the other of these genetic "markers" are present in nearly all
celiacs.
The HLA tests can be used to determine if you have the genetic markers
that are consistent with CD. That does not mean you will get CD.
Even in identical twins, if one twin has CD only about 75% of the time
will the other have CD, so there are obviously environmental factors
involved as well as genetics. About 30% of HLA-matched siblings of a
celiac will have CD.
Latent CD is another topic of interest. This is CD that is "not
really here yet" or doesn't show up on a biopsy. This is another area
of research that is still evolving. There are different definitions
of latent CD. It may be characterized by positive antibody test but
negative biopsies. In these patients it is possible that five years
down the road repeat biopsies would then be positive and the disease
would no longer be latent. It could be that antibody levels become
elevated before damage to the small intestinal villi occurs.
Return to the Table of Contents
CD: Past, Present, and Future
--------------4--------------
by Dr. Robert Truding
summarized by Jim Lyles
Dr. Robert Truding, a pediatric gastroenterologist out of Beaumont
Hospital, spoke at our April meeting. What follows are some
highlights of his talk.
Dr. Truding first learned of CD as a medical student in the late
60's, when it was not of much interest to the clinicians because so
few people were diagnosed with it. However, it was the arch typical
intestinal disease; if you wanted to learn about intestinal diseases
then CD was the one to teach you about them. Not much was known about
viruses and gastroenteritis in those days, whereas with CD you knew
exactly what it was about: You gave someone who had it gluten, they
got diarrhea; you remove gluten from the diet and they got better. It
was a perfect setup for teaching medical students about gut diseases.
Endoscopies were first done in the 70's. Prior to that time biopsies
were obtained via a "different route" (laughter). The endoscopy
allowed several biopsy specimens to be obtained, instead of a single
specimen. So doctors could take a few extra specimens and take them
back to the laboratory for study. The "celiac" response could
actually be duplicated in the lab, using a tissue specimen from a
healthy (healed) celiac. When gluten was applied to the specimen
within 24 hours measurable changes occurred to the specimen.
These discoveries raised the question: How do you now diagnose CD?
For most maladies you have an "operational" definition; you try some
tests and based on the results you make a diagnosis. Then there are
"symptomatic" illnesses where you don't have a have an operational
definition. For example, if someone says, "I feel nauseous," there is
no "nauseous meter" that can be used to measure it. So you look at
the symptoms and try to deduce the cause of them.
In the old days, you diagnosed CD by first looking for the symptoms.
Only if someone had the symptoms would you then perform a biopsy and
look for the characteristic celiac villi damage. Without obvious
symptoms, a biopsy was generally avoided because the technique used
was much less pleasant than a modern-day endoscopy. It took about an
hour, the patient was not sedated, and in the end you hoped there was
a sample and not just a gob of mucus; otherwise the whole procedure
had to be repeated. So, people weren't volunteering for the procedure
(more laughter) and you had to see obvious symptoms before you would
put someone through it.
A lot of pediatricians avoid the biopsy and simply worked with an
operational definition. If a child came in with a lot of diarrhea,
they'd put him on a GF diet. If he got better, they'd decide that was
all that was needed and the child would be labelled a celiac. The
problem was that it seemed half the kids in the country were being
labeled as celiacs. When a child has a viral infection, it usually
lasts five days or so. But 1-2% may last for two weeks. Usually by
then the pediatrician has been called two or three times and wants to
do something, so he would put the child on a GF diet. If he got
better (which he would have done anyway if it was a virus) then the
pediatrician would label the child as a celiac. So we ended up with a
large group of children with an operational diagnosis of CD that was
in fact misleading. It became an issue from the parenting point of
view when the child reached school age and suddenly the parents no
longer had complete control of the child's diet (school lunches, snack
s, etc.).
As an aside: Most of the research in CD has been done by Europeans.
The Irish, Italians, etc., are where this disease appears to have
originated. In these populations it appears that one out of every 250
or 500 people has CD. (There is some dispute over these numbers.)
In order to help with this problem of over diagnosis, it was decided
that the best method for diagnosing CD involved three separate
biopsies. The first step was to perform a biopsy on someone if they
showed symptoms consistent with CD. If the biopsy was abnormal, then
you'd put them on a GF diet and wait to see if they got better. If
they did, then somewhere down the line (six months? two years?)
you'd perform a second biopsy. If the second biopsy was normal (or at
least improved), then you would add gluten back to the patient's diet.
Finally you'd do a third biopsy (after some indeterminate interval)
and see if the biopsy got worse again. If it got worse then you
considered the diagnosis of CD to be confirmed and the patient would
then go on a GF diet for life.
Three biopsies may seem excessive, but it was needed at that time
because only about 10% of the children that had been labeled as
celiacs actually had CD.
So now you had to go back and ask, "What are the clinical symptoms of
CD?" Most of the people that had the clinical symptoms, and were put
in the textbooks as having CD really did not have CD. So you had to
discount all the earlier information about celiac symptoms.
The Europeans more or less universally adopted the three-biopsy
approach to diagnosing CD. But this meant that the only people that
got diagnosed were those that had symptoms. The next question was:
How many celiacs are there that don't have obvious symptoms? It
appears there are many people that have CD and don't know about it
because they don't have any obvious symptoms.
The major breakthrough in solving this problem is the advent of the
antibody blood tests for CD. The blood tests help to find the celiacs
that don't have symptoms. Now, the major symptoms of CD are: you
feel well, you grow well; it is only the people who are unusual who
have symptoms at the time of diagnosis.
In the 70's, Dr. Truding worked in an area that had a large Irish and
Italian population; his office saw maybe two pediatric celiac patients
a year. Nowadays, his office diagnoses five or six a year, because of
the blood test; it helps detect CD where it would otherwise not be
suspected.
So what is the definition of CD today? If you have no symptoms, is it
a medically valid disease? If you have a relative with CD, and you
have a biopsy that comes back abnormal, does that mean you also have
CD or does it just mean you have a funny-looking biopsy? If you have
Dermatitis Herpetiformis (DH) and you have a biopsy that comes back
abnormal, does that really mean you have two different diseases (DH
and CD), or is it just an abnormal biopsy? The bottom line is: When
people talk about CD, nobody is talking about the same thing. If you
were trained thirty years ago, it is much different then if you were
trained in the last couple of years. And now, with the genetic
testing everything is going to change again.
The antibody studies are interesting, but there appear to be a lot of
false positives from them. But we don't actually know if they are all
false positives. For example, if a child has a positive antibody test
but a negative biopsy, then Dr. Truding would say the child does not
have CD. Yet 30 years from now the child might see Dr. Alexander as
an adult and this time have a positive biopsy. Was the diagnosis as a
child correct?
In some of the Scandinavian countries they have seen a decrease in the
number of celiacs in the past 15 years. One theory is that it has to
do with breast-feeding. But the Belgians say they've seen an increase
in CD over the same span, and they do just as much breast-feeding as
the other countries.
When you hear about testing and read about symptoms, keep in mind that
it is all old information. The next wave of testing is the genetic
tests that we've heard about. It is going to be helpful in finding
people with a predisposition to CD. But not everyone with a
predisposition to CD actually gets CD, so then the question will be:
Are we causing people unnecessary concern when we tell them of the
diseases they may be genetically more likely to develop? Suppose this
genetic testing comes up with other diseases? For example, suppose
genetic testing done when you are a child shows that you'll develop
cancer when you are 60. Should you be told?
Return to the Table of Contents
CD and Bone Disease
---------5---------
by Dr. Dhanwade Rao
summarized by Jim Lyles
Dr. Dhanwade Rao, the head of the Department of Bone and Mineral
Metabolism at Henry Ford Hospital, spoke at our April meeting. What
follows are some highlights of his talk.
Most people associate CD more with anemia than bone disease. This is
because we don't tend to think much about our bones, unless they
break. We think of bone as a solid structure that will remain forever
to support us until we leave this world. This is not true. Bone is
constantly undergoing a renewal process. Every 15 seconds a piece of
bone is removed and a new piece is formed. Over the course of the
meeting, about 10% of the bone was renewed.
Until about age 25, your bones continually strengthen and acquire more
and more calcium. At that point you have reached skeletal maturity.
After that, you cannot add any more calcium to them; you can only lose
calcium or try to prevent its loss. So at age 25 you have built up a
"bank" on which you will draw for the next 50 years (the average life
span).
A couple of things happen in a woman's life, and to a lesser extent in
men. When you reach menopause and lose estrogen, you lose bone
rapidly for about five years, and then a little more slowly after
that. This leads to osteoporosis, a condition where particles of bone
are removed and never replaced.
If you don't take in enough calcium (and Vitamin D to help you absorb
the calcium), you are likely to develop thin bones, a condition which
is known as osteomalacia. This disease is nothing more than a
counterpart of the bone disease that afflicts children, which is
called rickets. If a child has a deficiency in Vitamin D, the child
develops rickets. If an adult has a deficiency in Vitamin D, the
adult does not get rickets; the adult gets osteomalacia, with a
softening of the bones.
Frequently patients with osteomalacia will have bone and muscle
weakness. Sometimes the disease develops slowly over a long period of
time. You lose bone slowly, without your knowledge, until it breaks
(a hip or vertebrae fracture).
The gastrointestinal tract is the route by which nutrients are
absorbed: calcium, vitamin D, iron, minerals, etc. You need to have
the intestine in good working order. The villous atrophy that is
characteristic of untreated CD impairs the absorption of calcium.
Most of the celiacs that Dr. Rao sees are people who have severe bone
disease, either because they didn't know, still aren't absorbing,
don't follow the diet, etc. One of the problems with bone disease is
that, once you've lost bone mass you can never really regain it. If
you lose 10% and then take corrective behavior, you can maybe get 1%
back. The other 9% is gone forever.
Bone stores approximately 95% of the calcium that is in our bodies.
You lose about 50 milligrams of calcium per day, which is not very
much. That translates to 18 grams of calcium per year, which is a
sizable amount.
There are two types of bone in our bodies: 1) Compact bone, found in
long tubular bones such as those in arms and legs, and 2) spongy bone,
which is mostly present in the vertebrae. It is the spongy bone that
is generally involved in osteoporosis. Most of the bone loss in
celiacs occurs in the compact bones, so that a celiac is at risk of
increased hip fractures as opposed to vertebrae fractures.
It is important for celiacs to take in enough calcium and vitamin D.
In this part of the world most of the vitamin D comes from diet.
(Your body also produces vitamin D when exposed to sunshine, but
climate and fear of skin cancer limit exposure to sunshine. However,
an hour of sunshine supplies enough vitamin D for one day.) In this
country people take supplements to provide extra iron and vitamins,
but fail to take in extra calcium and vitamin D which are even more
important. If you get tired and anemic, you can go to the doctor,
start taking supplemental iron and vitamins, and return to normal.
But if your bones get thin and break due to insufficient calcium, the
damage is done and it is too late to undo the damage. Calcium
supplements can help relieve the symptoms of osteomalacia (bone
softening), but will not restore the lost bone mass. So it is
important to think about vitamin D and calcium just as much as you
think about iron and other vitamin deficiencies.
Sometimes we need to do a bone biopsy to diagnose a bone problem,
because often there is confusion as to whether an individual has
osteoporosis or osteomalacia and the treatments are different.
Osteomalacia is almost completely curable, whereas osteoporosis does
not respond as well to treatment. A bone biopsy can be used to
predict how well the patient will respond to treatment and what the
future prospects are for the patient's skeletal health.
Fosamax, a new osteoporosis drug, has been mentioned in _The Sprue-nik
_Press.(1) Dr. Rao does not think it is a good treatment for the
osteoporosis related to CD. It is good, however, for post-menopausal
osteoporosis and it does appear to be GF.
The antibody blood tests have been helpful in finding celiacs among
post-menopausal women with bone problems. There is some data to
suggest that as many as 20% of patients that present with
post-menopausal osteoporosis seem to have so-called "latent" CD.
Conversely, 20-50% of patients with CD have osteoporosis. There are
tests now available that can measure bone density and tell you if
you've lost either spongy bone from the vertebrae or compact bone from
the arms and legs. By doing that particular test we can even begin to
determine whether you have CD-related osteoporosis or the usual
osteoporosis. It is a simple test using X-rays, it only takes about
15 minutes, and it is not costly.
Dr. Rao does not know if store-bought multi-vitamin tablets contain
enough vitamin D, but there is a prescription supplement that you take
once a week and costs about $1 per pill.
Dr. Rao answered some questions from the floor:
Q: Should all CD patients have a bone density test? How often?
A: Dr. Rao recommends that all adult celiacs have a bone density
test once a year. Also have your vitamin D and calcium levels
checked regularly.
Q: What form of calcium should celiacs take?
A: Calcium carbonate tends to cause constipation, whereas calcium
citrate is more likely to cause diarrhea. For most celiacs,
calcium carbonate would be preferred.
Q: How much calcium should you take?
A: 500 milligrams, twice a day is recommended; maybe more.
Q: If a post-menopausal celiac patient carefully follows the diet,
and has three or four servings of dairy products a day, is a
calcium supplement still recommended?
A: In this case the supplement is probably not necessary, but not
many people actually fit this profile.
Q: My wife was fine all her life, then suddenly a year ago she
started having collapsed vertebrae and a bone density test showed
only 30%. Now she's lost five inches in height. How did bone
problems occur so quickly?
A: What happens is, you can lose bone gradually over a long period of
time and not know it, until you reach a critical point where
you've lost enough bone mass to allow the bone to fracture easily.
She probably had been losing bone over a 5-10 year period and
didn't know it.
Q: What part does loss of magnesium play in bone disease?
A: It does not seem to have an adverse effect on bone density, though
it does have other effects such as muscle weakness.
Return to the Table of Contents
Newsletter Roundup
---------6--------
Compiled by Jim Lyles
We exchange newsletters with several other celiac groups. In this
article I will summarize some of what we've learned from our
newsletter swapping.
................................................
: :
: Excerpts from _Celiac SprueNews_ :
: -------------------------------- :
: April/May 1996 Jan Hill, editor :
: CSA/USA San Diego Chapter :
: 10424 Flanders Cove :
: San Diego, CA 92126 :
:..............................................:
CD-related Articles: In the last 30 years, just over 6,000 papers
have been published on CD. Of these, only 10 were published by
researchers from the United States.(2)
Lentils and Dry Peas are members of the dry legume family, close
relatives of the bean. These are two of the most nutritious foods.
They are a vegetable protein and a complex carbohydrate and contain no
cholesterol or fat. Legumes are low in calories and have more dietary
fiber than any other major food (including vegetables, nuts, fruits,
and grains). Lentils and dry peas fit in well with today's
health-conscious diets.(3)
...............................................................
: :
: Excerpts from the Gluten Intolerance Group of North America :
: ----------------------------------------------------------- :
: newsletter: March 1996 Cynthia Rolette, editor :
: PO Box 23053 :
: Seattle, WA 98102-0353 :
:.............................................................:
More on the Finnish Oats Study: In October 1995, the New England
Journal of Medicine published a study from Finland entitled "A
Comparison of Diets With and Without Oats in Adults with Celiac
Disease", by Esko K. Janatuinen, et al. This study suggests that
oats may be safe for celiacs. But there are several points to
consider:
* The study purposely omitted those with "severe CD", and those whose
CD "relapsed" or whose symptoms worsened. This factor alone might
omit anyone who is symptomatically sensitive to any small
contamination in their diet.
* Both the control group (which ate no oats) and the test group ate a
diet that is not GF according to US standards, as wheat starch was
used in both groups. This makes it difficult to determine if the
equivalent results between the two groups were due to oats being
safe, or due to both groups consuming wheat starch.
* The amount of oats consumed was relatively small, and the time of
the study was relatively short (12 months). Also, oats have less
avenin (gliadin's counterpart in oats) than wheat has gliadin. A
study involving larger quantities of oats, lasting five years,
would be more helpful in determining the toxicity of oats to celiac
patients.
* Research suggests that in some persons with CD it can take over a
year to see the microscopic changes in the small intestine caused
by gluten contamination.
* In the US and Canada, oats may be cross-contaminated by wheat and
other grains in the field, during harvesting, and in processing.
It may be difficult to find a pure source of oats.
The Gluten Intolerance Group of North America recommends that celiacs
completely avoid oats.
[The study involved only adult subjects, so there is no way to know
how children would react to oats. Certainly for children, oats are
NOT advised. We also advise adult celiacs to completely avoid oats,
at least until more studies have been done.--editor]
...............................................................
: :
: Excerpts from the Houston Celiac-Sprue Support Group :
: ---------------------------------------------------- :
: newsletter: Mar./Apr. 1996 Janet Y. Rinehart, President :
: 11011 Chevy Chase :
: Houston, TX 77042-2606 :
:.............................................................:
_Diabetes Forecast_ is set to publish an article this summer about the
connection between CD and Type I Diabetes.
-=-=-=-=-=-=-
Talk Highlights(4): The following are highlights from a talk by
gastroenterologist Sheila E. Crowe, one of the medical advisors for
the Houston Celiac Sprue Support Group.
* When someone past the age of 50 is diagnosed with CD, there is a
greater probability of lymphoma and other associated diseases.
* Untreated celiacs are at a higher risk of developing small bowel
lymphoma and adenocarcinoma; but the risk is still quite small.
The risk of developing a "common" cancer such as colon, breast, or
lung cancer is much higher, though not any higher than it is for
non-celiacs.
* For reasons that are not entirely clear, untreated celiacs are at a
higher risk of developing esophageal cancer. It may be related to
certain nutrient deficiencies caused by malabsorption.
* It is extremely important to get a definitive diagnosis of CD in
children. To put a child on a GF diet for life without a proper
diagnosis is a disservice to the child. Other diseases have
celiac-like symptoms. Once you've been on a GF diet, it is much
harder to get a proper diagnosis as a gluten-challenge is required
first.
* If you do not get better on a GF diet after being diagnosed as a
celiac, the biopsy should be reviewed by someone experienced. Dr.
Crowe always looks at the biopsy specimens along with the
pathologist.
* Patients are entitled to their medical records, including actual
tissue slides, to present for a second opinion.
* Pancreas damage can cause symptoms similar to CD. Symptoms of
pancreatitis include pain (sometimes severe), weight loss, fat
malabsorption, and foul-smelling stools. However, the two
conditions should not be confused by a specialist. The correct
diagnosis is important, as management of the two diseases is quite
different.
* Irritable Bowel Syndrome (IBS) is specific to the lower bowel,
occurs more often in women than in men, and is not associated with
anemia and weight loss. However, it can cause diarrhea,
constipation, and abdominal pain (sometimes alternating with
constipation). Blood work, X-rays, endoscopies, and biopsies are
usually completely normal. IBS patients may be sensitive to
gluten, but this is not an immune system response (whereas CD is),
it is a neurohormonal response. IBS patients may have problems
with many other foods. Patients can be incorrectly diagnosed with
IBS when in reality they have colitis, Crohn's disease, or CD.
* Lactose Intolerance [whether temporary or permanent] will not
damage your intestine, will not make you more susceptible to
cancer, and will not make you anemic; however it will make you feel
uncomfortable.
* Celiacs do not normally get reactions to allergy skin tests for
wheat. The allergy reaction to wheat is different from the
reaction of true celiacs to the wheat protein gliadin.
* Many autoimmune disorders seem to be connected with CD, including
Type I (insulin-dependent) Diabetes, Graves Disease, Sjogren's
Syndrome, Addison's Disease, Scleroderma, Chronic Active Hepatitis,
Myasthenia Gravis, Systemic Lupus Erythematosus, and possibly
Rheumotoid Arthritis.
* There are many potential causes of villi damage, including:
radiation therapy, chemotherapy, CD, Crohn's Disease, viral
gastroenteritis, bacterial overgrowth, and immunodeficiency. Also,
there are at least 20 diseases that resemble CD symptomatically.
.....................................................
: :
: Excerpts from the Westchester CS Support Group :
: ---------------------------------------------- :
: newsletter: April 1996 Sue Goldstein :
: 9 Salem Place :
: White Plains, NY 10605 :
:...................................................:
_The "NO-GLUTEN" Solution_, by Pat Cassady Redjou, is a cooking guide
for people who are "sick and tired of being sick and tired". Among
other things, it contains recipes for making your own chicken, meat,
and vegetable broth. To order, send a money order for $26.95
(Washington residents should add $1.82 sales tax) to: Pat Redjou, The
"NO-GLUTEN" Solution, Box 731, Brush Prairie, WA 98606-0731.
-=-=-=-=-=-=-
The Social Celiac Course 101: Arm yourself with these coping
techniques when you attend a party:
Chapter 1--Cocktails. When the bartender asks, "What's your poison?"
this may not be so far off. Most hard liquors are likely made from
one of the various grains that celiacs must avoid. There are a few
relatively safe options: most wine, tequila, and rum. Or you can
always opt for GF soda or juice; no one will be the wiser when you
join in on the traditional party toast.
Chapter 2--Hors D'oeuvres. These little critters will most likely be
off your list. Most are wrapped in some sort of dough [or sauce]
that is not likely to be GF. Fresh fruit or veggies may be your
best hope. Better yet, keep a small bag of GF goodies with you to
eat while everyone else stuffs themselves with pigs in a blanket.
Chapter 3--Entrees: This gets a little more difficult, but don't
despair. If you are celebrating in a restaurant, try to speak to
the Chef or Maitre D' and advise them of your situation. If
possible, try to reach them prior to the meal. Remember to stay
away from anything with stuffings, dressings with unknown
ingredients, or fried foods cooked in the same oil as breaded
foods. When dining at a guest's house, offer to bring a homemade
dish to contribute to the meal. Your host will be thankful for the
help, and you will be sure to have at least one GF option when you
eat.
Chapter 4--Dessert: This is the time you may start to feel a little
sorry for yourself. That is, until you see the stuffed look on
your dining companions' faces. While you may opt for fresh fruit
or a light GF Sorbet, they can barely speak or move because they
are so full from that rich chocolate cake. So give yourself a pat
on the back and remember, it's just one less hour on the treadmill
for you at the gym.
References
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(1) See the April 1996 issue of _The Sprue-nik Press_.
(2) Presentation by Dr. Alessio Fasano, at the US Celiac Coalition
meeting in November, 1995.
(3) "Legumes Plus" Catalogue.
(4) "Discussion of Various Topics Related to Celiac Disease", by
Sheila E. Crowe, Dept. of Internal Medicine and Gastroenterology,
UTMB, Glaveston, Texas.
Return to the Table of Contents
Recipe Page
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Angel Food Cake
1 cup + 2 Tbsp. GF flour mix** 1-1/2 tsp. cream of tartar
1-1/2 cups sugar 1-1/2 tsp. vanilla or almond
1/4 tsp. xanthan gum flavoring
12 egg whites (room temperature) 1/4 tsp. salt
Mix the flour, half of the sugar, and the xanthan gum in a bowl and
set aside.
Place the 12 egg whites in a separate bowl and beat until frothy. Add
the cream of tartar, flavoring, and salt to the egg whites and whip
until stiff (but not dry). Slow the mixer's speed and gradually add
in the remaining sugar. Stop and scrape the bowl.
By hand, fold the flour mixture into the egg white mixture, 1/4 of the
flour mixture at a time. Pour the batter into an ungreased 10 inch
tube pan. Gently cut through the batter with a knife to break air
bubbles.
Bake at 350 degrees F for 35-40 minutes. Remove from the oven and
invert immediately to cool. Keep the inverted cake level while
cooling or it will sag to one side of the pan. As the cake cools, it
will stiffen and probably pull away from the sides of the pan or fall
out.
This recipe originally came from Toni Richardson. This version is
from Carolyn Sullivan, who added some explanations and clarified the
directions somewhat.
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Mom's Pancakes
1-1/4 cups buttermilk 1 cup GF flour mix**
1 tsp. GF baking soda 1/2 tsp. salt
2 eggs, separated 1 tsp. GF baking powder
3 Tbsp. melted butter 1 round tsp. sugar
Mix the buttermilk, baking soda, egg yolks, and butter. Mix the
buttermilk mixture into the dry ingredients.
Beat the egg whites until they are stiff, and then fold them into the
batter. This makes a light and fluffy pancake.
This recipe comes from Claire Coyer, who adapted it to be GF from her
mother-in-law's recipe.
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Flourless Chocolate Cake Roll
4 ounces sweet chocolate cocoa for dusting
4 ounces semi-sweet chocolate 1-1/2 cups whipping cream
1/3 cup cold water 3 Tbsp. confectioner's sugar
8 eggs (separated) 1 tsp. GF vanilla
1 cup sugar
Oil the bottom of a jelly roll pan (10 x 15 x 1). Line with wax
paper, extending the paper past the ends of the pan.
Melt the chocolate in the water; cool.
Place the egg yolks in a mixer bowl and beat slightly. Add the sugar
gradually and beat until the sugar is dissolved & the mixture is thick
& lemon-colored. This takes 5-10 minutes. Stir in the chocolate.
With clean beaters, beat the egg whites to stiff peaks. Fold 1/3 of
the egg white into the chocolate mixture. Fold in the remaining
whites 1/3 at a time until completely mixed.
Spread the batter evenly in the prepared pan. Bake at 350 degrees F
for 18 minutes.
Remove from oven. Cover with a damp towel for 30 minutes.
Remove the towel and loosen the cake by lifting the ends of the paper.
Dust the top of the cake with cocoa. Place a piece of wax paper over
the top, and then another cookie sheet. Invert. Carefully peel off
the original wax paper.
Whip cream to soft peaks. Add confectioner's sugar and vanilla.
Spread over the cake. Roll the cake along the long edge directly onto
the serving platter. Dust with cocoa if desired. Refrigerate.
This recipe came from Vicki Lyles. It was originally printed in the
January 1995 issue of The Sprue-nik Press and has been reprinted by
popular demand after being served again at a recent meeting.
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** GF flour mix:
6 cups white rice flour
2 cups potato starch (NOT the same as potato flour)
1 cup tapioca starch (also called tapioca flour)
**********************************************************************
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Diane Morof
Vice President: Mary Guerriero (dmguerrie@aol.com)
Past President: Kathy Davis
Secretary: Denise Parsons
Newsletter Editor: Jim Lyles (200-2214@mcimail.com)
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 not been submitted for
approval to the CSA/USA medical board; however it 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 this newsletter, a shopping
guide, and a new member packet full of articles and useful
information. Mail-in subscriptions are welcome. For subscription
information, send a note to Mary Guerriero, at (dmguerrie@aol.com).