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 6 September 1996
**********************************************************************
..................................................
: What's Inside Search For :
: ------------- ---------- :
: Miscellaneous Notes . . . . . . . . . -1- :
: _Cook's Illustrated_ . . . . . . . . -2- :
: 7th International Symposium on CD . . -3- :
: Newsletter Roundup . . . . . . . . . . -4- :
:................................................:
[Note: I'm afraid our on-line readers will find much of this
newsletter to be a "repeat", as a lot of it came directly from the
CELIAC list. To make matters worse, I can't even offer you our usual
recipe page; that will probably return in the October issue.
Hopefully, you will gain some useful information from the "Newsletter
Roundup" section near the bottom of this newsletter.--editor]
References
Disclaimer
Miscellaneous Notes:
---------1----------
Red Star has long been a help to celiacs. Besides producing GF yeast,
they also have a toll-free phone number specifically for celiacs:
(800) 4-CELIAC. Red Star recommends these bread machines for making
GF bread:
1. Welbilt: model 2100-2200T for 1 1b. loaves, model 3300 for 1
& 1-1/2 lb. loaves, and model 4000 for 1, 1-1/2, & 2 lb. loaves
2. Toastmaster: models 1154, 1156S, and 1195 (all make 1-1/2 lb.
loaves)
3. Regal: model K6750 makes up to 2 lb. loaves
4. Red Star ERS 100 (1-1/2 lb. loaves); at Wal Mart this machine is
named Magic Chef, but it is the same machine.
-=-=-=-=-
Bad News About Corn Pops: On March 1, 1996, Kellogg's Corporation
began producing Corn Pops on the same production line as other cereals
which contain gluten. Since the individual boxes are good for one
year, that means the only "safe" Corn Pops for celiacs are those with
a "sell-by" date of February 1997 or earlier. To voice your concerns
about this change, call Kellogg's at (800) 962-0052.[1]
Return to the Table of Contents
_Cook's Illustrated_[2]
-----------2-----------
reviewed by Linda Blanchard
I know an awful lot of us feel overburdened by the need to spend so
much time cooking, but if you're one of the rare few who've begun to
discover a certain joy in the preparation of food from scratch, if you
find yourself intrigued by the mysteries of how ingredients work
together, or you find yourself (like me) craving a bunch of cool new
kitchen gadgets to work with, I'd like to recommend to you a magazine
called _Cook's Illustrated_. Not a magazine for gourmets alone, this
is a bi-monthly magazine which allows no advertising at all. The
October issue features: "Macaroons Six Ways", "How to Cook Cabbage",
"How to Roast a Cheap Cut of Beef", "Boston Baked Beans", "Easy
Decorative Pie Edgings", "Mastering the Chocolate Souffl", "Homemade
Oven-Dried Tomatoes", "Memorable Meat Loaf", "Pie Pastry Revisited",
"Simple Stovetop Rice Pudding", "Does Price Matter When Buying
Extra-Virgin Olive Oils?", "Electronic Timers Win Testing"...and more.
We're talking everything from home cooking to gourmet flair, with each
article not just telling you how to cook the featured item, but most
often explaining what variations and techniques were tried and why
some failed and why some worked--the kind of good, basic information
so necessary to the sort of experimental cooking celiacs often must
do; the kind of information so rarely found in cookbooks.
Each issue features questions from readers and answers by the staff, a
page of reader-inspired quick tips illustrated in clear line drawings,
reviews of books, kitchen testing of equipment, as well as a bunch of
recipes, many of which are suitable for the celiac kitchen without
modification.
_Cook's Illustrated_ has a cover price of $4.00, but a six-issue
subscription goes for $19.95 per year. Write to Cook's Illustrated,
PO Box 7446, Red Oaks, IA 51591-2446.
Return to the Table of Contents
7th International Symposium on Coeliac Disease
----------------------3-----------------------
Reported verbally by Dr. Joseph Murray
Written by Ann Whelan
This is the "world cup" of celiac conferences, held every four years
and attended by nearly all the world's researchers and experts on
celiac disease (CD). This year's symposium was held in Tampere,
Finland, on September 5-7. Dr. Joseph Murray, well known in the USA
for his celiac expertise, attended the symposium. The listowners of
the CELIAC e-mail list on the Internet arranged for Dr. Murray to
phone in reports at the conclusion of each day's activities. These
were then transcribed, summarized, and edited by Ann Whelan, and then
forwarded on to all the subscribers of the CELIAC e-mail list.
I have combined the three daily reports from Joe and Ann into a single
report, with some editing. This is printed here with their permission
and the permission of the CELIAC e-mail listowners.
Many of you know Ann Whelan as the editor of Gluten-Free Living, a
bi-monthly newsletter. This is an excellent newsletter for celiacs,
and is also an excellent product to give to medical professionals to
assist them in keeping up with this field. It is well researched, and
includes quotations and/or articles by many well-respected clinicians
and researchers in the Celiac field. A one-year subscription (six
issues) is $29, two years is $49. A sample issue can be obtained for
$5.95. Four issues have been published so far, the fifth is about to
appear. To subscribe, write to Gluten-Free Living, PO Box 105,
Hastings-on-Hudson, NY 10706. Ann plans on covering a few selected
topics from the symposium in greater detail (and with additional
sources) in future issues.
Without further ado, here is the report from Joe Murray, as
transcribed by Ann Whelan.
Day 1: Thursday, September 5th
-------------------------------
Hi, everybody. I am pleased to be involved in this effort to get the
word out as quickly as possible. After listening to Joe Murray talk
about the conference, I can tell you that I'd love to be there. Joe
says he didn't take a head count in the hall, but it's packed and just
about everyone who is anyone in the celiac community--with very few
exceptions--is in attendance.
The first speaker, Dr. Jarmo Visakorpi, from Finland, gave an
overview of CD and how it started out being thought of as a rare
gastrointestinal (GI) disease of children and not a common disease
that occurs at all ages and may not be limited to the GI tract. Joe
remembered one quote that he felt would be well worth repeating. Dr.
Visakorpi said, "Many people call parts of the celiac iceberg by
different names, but that's not important. It's more important to
know the size of the iceberg and how it floats. In Sweden, the whole
iceberg is floating. In other European countries, the tips of the
iceberg are showing. But in the United States, the whole iceberg is
submerged." Wow! I'd call that a great image...
Dr. Luigi Greco, from Italy, spoke next. He talked about the origins
of cultivation and how wheat was the first cultivated plant, at least
in the Middle East. The cultivation of wheat allowed people to change
from being nomads to being settled. The next big occurrence relative
to cultivation was that people discovered they could ferment wheat to
make beer!
Dr. Greco went on to comment that in the western part of Europe,
exposure to gluten has only occurred very recently in genetic terms,
with little time having elapsed for the population to adapt
genetically!
Dr. Greco also commented on the perceived differences in incidence
rates that we see quoted and suggested that these differences may
actually be due to the different ages of onset in different
populations. He suggested there really is little difference
statistically between the different measures; 1 in 250 and 1 in 500
for example.
Dr. Henry Asher from Sweden spoke next. He discussed the Swedish
experience, which has shown an increased incidence of CD among
children that is different from other countries.
Dr. Asher made several observations about the gluten content of
commercial foods, which has gone up dramatically since cow's milk
protein has been eliminated from formulas and replaced with
gluten-containing material. He says the amount of gluten given to
young children correlates with the onset of symptomatic disease. He
looked at gluten consumption in children: It's highest in Italy, next
highest in Sweden, followed by Finland, and then Denmark. These
levels of gluten consumption parallel the rise in symptomatic CD in
children.
Dr. Asher went on to observe that the diagnosis of CD is related to a
shorter duration of breast feeding, the earlier introduction of solid
foods, and a higher amount of gluten in the diet. He showed news
clippings from Sweden. One of the clippings reported that the Justice
Minister in Sweden has a daughter who has CD; in that report the
minister called for an outright ban on gluten-containing baby food!
Not surprisingly, Joe Murray says there was a lot of comment on this
question. Some suggested the need to look for other factors for the
change in childhood incidence. Also, if the amount of gluten given to
children is reduced, they may develop not symptomatic CD but silent or
delayed CD. Joe says it's too soon to decide what can be done with
childhood dietary content, but that it seems reasonable to prolong
breast feeding and to reduce the amount of gluten in the child's diet.
Dr. Carlo Catassi, from Italy, spoke about screening. He used a
quotation (not his own) that said screening should only be undertaken
if there's a risk of complications and we can alter the natural
history of the disease in a significant proportion of those screened.
Dr. Catassi claims in Italy CD is one of the commonest lifelong
disorders. He suggested that for every diagnosed celiac in Italy,
there may be seven others who have asymptomatic CD. In Italy they
screened 17,501 students and came up with a high incidence.
Dr. Martin Stern spoke about the standardization of screening tests.
Joe said his talk was very technical about standardization (not
screening) in Europe. One important point that he made of interest to
laypeople is that these tests can either be set as screening tests or
as diagnostic tests but not both at the same time. What makes a good
screening test does not make a good diagnostic test. Dr. Stern said
the normal cutoff point needs to be adjusted for whichever aim you
have.
Dr. Pekka Collin, from Finland, spoke about diagnostic strategy and
how to find CD. He did it on the basis of several things: actively
screening high risk groups, including first-degree relatives, and
those with insulin-dependent diabetes mellitus, rheumatologic
problems, especially Sjogrens syndrome, problems of infertility,
thyroid disease, and neurologic disease.
The second thing he does is have a service where he gives open access
endoscopy to primary care doctors who refer patients for endoscopy.
Third, is to biopsy the duodenum of all patients who are endoscoped.
Dr. Collin went on to remark that the incidence of DH, which is an
obvious condition, has been stable and unchanging over the years but
the diagnosis of CD is increasing dramatically.
Next were several short oral presentations not listed in the program:
* Dr. Ivarsson and colleagues from Sweden talked about different
factors leading to CD in children. They mentioned the quantity
of gluten, a shorter duration of breast feeding and,
interestingly Joe says, the socioeconomic status of those
diagnosed. The lower the socioeconomic status, the greater the
risk. Additionally, he found that those born in the
summertime(!) have a greater risk and, of course, those
genetically predisposed.
* Second, Dr. Hovdenak and his colleagues from Norway talked about
blood donor screening. Joe said he thinks it's very interesting
that he found a high incidence, 1 in 200, but did not find any
difference in sex. Joe says that's different from symptomatic
CD, which is predominately female.
* Third, Dr. Kaukinen from Finland looked at CD in patients who had
positive antibody tests and normal architecture in the intestine.
They show that many of these patients have some subtle changes
in the intestine, but he's not sure yet what it means.
* Fourth, Dr. Bahedi from France talked about his findings that
showed that only 43 percent of adult patients adhere to the GF
diet. This was detected by biopsy and endomysial antibodies.
He emphasized that when the antibodies are positive, patients are
told they are not compliant, but if the antibodies are negative,
it's not necessarily saying everything is okay.
The next scheduled speaker, Dr. Anne Ferguson from the U.K., said
that some people just eat a naturally low-gluten diet and that aspect
needs to be considered when assessing for CD. She also talked about
the latent forms of CD.
Dr. Auricchio from Italy talked about patients who have symptoms due
to gluten, but with normal biopsies. These people seem to have many
differences from celiac patients. Dr. Auricchio suggested there may
be different genes that determine sensitivity to gluten on one hand
and the development of small bowel problems on the other.
Dr. Lionel Fry from the U.K. talked about DH. He stated that all
patients with DH have some degree of enteropathy, even though less
than 1 in 10 patients with DH have GI symptoms. Dr. Fry also said 40
percent of DH relatives have gluten-sensitive enteropathy. He went on
to say that the GF diet can take six months to two years to get
healing of DH, and a relapse of the DH rash may take 2 to 12 weeks to
occur after someone eats gluten. Total disappearance of IgA skin
deposits may take up to seven years after a GF diet is started.
Dr. Reunala from Finland talked about associated diseases. He quoted
others who said 5 to 14 percent of DH patients have thyroid disease
and went on to say that DH patients have an increased incidence of
lymphoma that a GF diet seems to protect against.
After a couple more speakers for which the notes were sparse, there
was a forum. Dr. Hallert talked about psychiatric illness in adult
CD patients. He studied 180 CD patients and found that 22 percent had
been to the psychiatric department prior to diagnosis of CD and the
average time from going to the psychiatric department to the eventual
diagnosis of CD was 14 years! (That figure might not be right.) Dr.
Hallert also said celiacs were four times as likely to be seen in the
psychiatric department as the general population! He also went on to
say that depression may occur after the CD diagnosis.
Dr. Ventura from Italy talked about auto immune disorders. He
suggested it's more common in patients diagnosed later in life than
those diagnosed in early childhood.
Next, Dr. Murray himself presented information about seven patients
who have duodenal strictures as a previously undescribed
presentation/complication of CD.
Dr. Bai, (sorry, I don't know from where) described effects of the GF
diet on bone density. Patients showed marked improvement in bone
density with the GF diet, although it did not return to normal. The
improvement was better in the spine than in the hip and better in the
hip than elsewhere. Dr. Bai went on to say that premenopausal women
did better than postmenopausal women.
Day 2: Friday, September 6th
-----------------------------
The big story today from Finland is oats. There were two talks and
several posters presented on this topic.
In the first talk, Dr. Risto Julkunen spoke about the Finnish
five-year follow-up study in which oats were given to a population of
well-controlled celiacs. They ingested an average of 34 grams, which
is slightly over one ounce, daily for up to five years. The oats used
in the study were specially grown and tested to be free of wheat,
barley, and rye. The researchers claim there was no difference in
those allowed the oats and those who were not.
The second study presented came from Dublin, and was reported by Dr.
Conleth Feighery. This 12-week study looked at a small group of
patients with healed CD, who were given 50 grams of oats a day.
Again, the oats were carefully screened and tested to make sure there
was no contamination. After 12 weeks, no effect was seen on biopsy or
through antibody tests. The researchers also took two of the 12
participants and did what they called a "micro challenge" of 500
milligrams of gluten a day. Both patients got reactions, so the
researchers felt that at least two of the participants were sensitive
celiacs--and they still did not respond to the oats.
A poster from Italy showed biopsies taken from celiacs that had been
studied in the culture plate in the presence of oats, which did show
some effect on the biopsies. In other words, tissue from biopsies
from patients with treated CD were put in a plate and grown in the
presence of oat protein, and the oat protein had an effect on the
biopsies. This sounded odd, so I made sure I'd really understood what
Joe reported and paraphrased, "In other words, they're seeing no
reaction from oats within the body in some studies but this one showed
a reaction outside the body?" "Yes," Joe said, "of course, this is
puzzling."
Continuing on the oats issue, a series of short studies from several
places also showed what the Finnish study had shown in the body, i.e.,
no problem in the short term.
This is Joe's summary on Oats: Over the short term, in
well-controlled, healed celiacs who are compliant in every other way,
it may be safe for them to take oats that have been tested to be free
of contamination of other grains.
He also mentioned that there were a few studies showing that
contamination of commercial oats may be common in several European
countries.
(Note: I went to Digestive Disease Week in May, where I met several
Irish doctors who have studied oats. They are adamant in believing
that uncontaminated oats are safe for people with CD.--Ann)
If all of this oats talk pans out as being correct to gluten-sensitive
individuals in this country, that would seem to be pretty good news.
Then, the next big challenge would be to figure out how
gluten-sensitive people are going to get access to contamination-free
oats. I, for one, will be all ears.
Dr. Paul Ciclitira spoke about in vivo gluten challenge and showed
that one gram of gluten produces damage after only two hours. 100
milligrams (1/10th of a gram) produced some damage or slow damage and
10 milligrams produced no damage.
The limitations of studies such as these are that they are highly
invasive and there may be some risk. Joe said, "You must leave a
biopsy capsule down for 24 hours, so it's not a small deal."
Dr. Luigi Maiuri from Italy described an in vitro testing of
intestine biopsies that showed a response could be produced. Joe said
this wasn't new but what was interesting was that the little pieces of
tissue could produce endomysial antibodies when exposed to gluten.
Dr. Riccardo Trancone from Italy talked about rectal mucosal response
to gluten challenge. He said he could get a measurable response in
treated celiac disease patients to gluten, which Joe said was new.
Dr. Trancone also talked about the idea that there may be two
separate genetic factors involved in CD. One causes the individual to
be sensitized to gluten and the second one is involved at the stage of
severe gut damage. His work was based on examination of the
non-celiac family members of diagnosed celiac patients.
Dr. Michael Marsh described the effects of specific peptide sequences
from gluten. He had done studies in only two patients. Dr. Marsh
said it was very expensive to do tests of this kind because it's very
expensive to make the peptide artificially. He estimated about $5,000
to do one test in one patient.
Don Kasarda's talk was very hypothetical, Joe said. Don suggested
that CD may be the result of a collision of two separately evolving
processes, the first being the storage proteins in the grasses and the
second being control proteins in animals. Both of these have
similarities in their proline and glutamine content and could lead to
molecular mimicry. An explanation of what he meant is apparently
quite complex, and after trying to explain, we gave up. It all has
something to do with getting your lines crossed--and this is
hypothetical anyway.
Don also talked about the possible peptide fragments responsible for
CD.
In his second presentation, Dr. Paul Ciclitira talked about the
potential for identifying small amounts of gluten in foods. Based on
what he said in his earlier talk about in vivo challenge, he took 10
milligrams per 100 grams of protein content in food as being the
cutoff or threshold. He said that most commercial oats products are
contaminated with gluten. Cooking does not alter the toxicity. Dr.
Ciclitira also commented about toaster contamination. He said he sees
about one patient a year who gets contamination from using the same
toaster as the rest of the family.
Dr. Ciclitira also commented on the Skerrit test, which tests for
gluten in food (it's the Australian test). He has "strong
reservations" about the test. He thinks it's because the test
identifies omega gliadins, which are a minor component of gluten, that
cause the test to give variable results.
Dr. Ciclitira also mentioned other types of tests that really may not
be specific and may pick up other non-toxic grains but may not pick up
rye or barley. This brought on a lot of discussion, Joe said:
* The proposed CODEX Alimentarius threshold for something to be
called gluten-free (GF) is 200 parts per million. That's
equivalent to 20 milligrams of gluten in 100 grams of protein.
* A woman who may be the President of the European Celiac Societies
objected to the allowance of wheat starch. Dr. Ciclitira and
others said wheat starch is allowed only because the patients
demanded it!
* Someone else estimated that the market for GF foods in Europe was
500 million dollars! Joe said that really surprised him.
* Someone else, perhaps Dr. Ciclitira, said the Vatican now allows
wheat starch communion hosts.
Dr. Thomas MacDonald from the U.K. gave a very technical talk on a
model system for gut damage. Dr. Erkki Savilahti from Finland spoke
about the role of lymphocytes in latent forms of CD. Dr. Markku Maki
talked about the possible role of the antibodies in causing changes in
the intestine.
Dr. Per Brandtzaeg from Norway, whose talk was on "Development of
Intestinal Immunity and its Relation to CD", made some interesting
comments about the mismatch of our genetic makeup and the
environmental pressure in the modern world. Dr. Brandtzaeg did
mention several reasons why breast milk is particularly good for
infants and the development of the immune system in that it provides
antibodies the baby cannot make that help protect the intestinal and
respiratory tracts. He also talked about other things that are
important to the gut such as bacteria, age, and possible allergies.
Dr. Kagnoff's presentation on "MHC and CD" was very technical. He
reviewed part of the genetic background on tissue types and CD. Dr.
Kagnoff said virtually all celiacs have a specific tissue type but
many people with the same type do not have CD.
Dr. Ludvig Sollid from Norway gave a very technical talk about
lymphocytes and, finally, Dr. Joseph Michalski from the United States
described how he has identified a new gene site, a small area on
Chromosome 6 that may be where the other gene for CD is located. Joe
said it was interesting and mentioned a "race to find that gene." Dr.
Michalski does his work at the University of South Alabama and uses
patient material from County Galway, Ireland.
(NOTE: I've spoken to Dr. Michalski a few times recently about
genetics and HLA-typing for a small article that will be in the
September/October issue of Gluten-Free Living. He is very interesting
and said he might consider writing an article for the newsletter about
genes and the search for same. I'll keep you posted, because I'm
really eager to see an article that even the brain-challenged among us
on things scientific can understand about the genetic mysteries of
CD.--Ann)
Day 3: Saturday, September 6th
-------------------------------
The third and final day of the symposium in Finland was shorter and
less packed than the previous two, but it was also much more technical
in some instances. The first morning session was devoted to
diagnostic criteria and was divided into two parts: child and adult
diagnosis.
Dr. Walker-Smith from the U.K. discussed historical issues of how
diagnostic criteria were first generated. It started with three
biopsies: an initial biopsy, a second showing healing, and a third
done after a gluten challenge. This was in 1969.
More recent criteria put together in 1989 suggested that in many
children, one biopsy could be enough if there were some evidence of
clinical improvement, demonstrated by antibody improvement or in some
clinical situation like symptoms or anemia. There were some
exceptions to this:
* in patients where the initial biopsy was not entirely flat.
* where the first biopsy was done under the age of two.
* in communities where there were other diseases that could cause a
flat biopsy (such as a parasite infection).
* if there was any doubt about the original diagnosis.
* in teenage patients who were going to go off the diet anyway.
(Apparently the feeling was that teens wouldn't follow the diet,
and if they were going to be non-compliant, they should be
encouraged to do it in a controlled fashion with a biopsy done
before they would go off on their own.)
Another point was made (not by Dr. Walker-Smith) about finding eight
non-compliant teens in whom there was a flat biopsy but the endomysial
antibodies were negative!
Then there was a discussion about serologic tests, and the feeling was
that the tests are not yet good enough and can't completely replace
the need for a biopsy.
In adult biopsies, another doctor felt that in many cases, two
biopsies are necessary, one before starting a GF diet and one after
starting the diet. It was also noted that how reliable this would be
would depend on whether there were other diseases occurring in the
community that could mimic the first biopsy.
The next discussion concerned a Finnish study that suggested it didn't
matter where in the duodenum the biopsies were taken as long as they
were taken.
Dr. Ferguson (I think there may be two Dr. Fergusons and I don't
know which one) commented that doctors should be aware of the personal
and financial cost of the biopsy and the hope that there could be some
way to replace this procedure.
Then a general discussion pretty much held that a certain number of
biopsies are essential and there is not yet a zero-biopsy option.
They could not overemphasize the importance of doing a biopsy before
beginning the GF diet, and that there are still some patients in whom
more than one biopsy is necessary.
In the afternoon, Dr. Lloyd Mayer from New York talked about how the
cells lining the intestine can or cannot take up different proteins.
Joe described Dr. Mayer as "not a celiac person."
Dr. Cerf-Bensussan from France talked about T-cells and said there
were some very unusual gamma-delta T-cells present in the intestines
of celiacs. She referred to a group of French children who seemed to
be doing okay clinically on a gluten-containing diet, even though they
did have a prior diagnosis of CD. In these children an increased
number of the unusual gamma-delta T-cells were found in their
intestines.
Next, Dr. Hayday from Connecticut talked about gamma-delta cells seen
in the lining of the intestines of celiacs that seem to be important
for regulating immune responses.
Dr. Cerf-Bensussan discussed some unusual populations of lymphocytes
in patients with refractory sprue. These cells may represent a
premalignant condition. She showed that five patients with refractory
sprue had these identical types of cells.
Dr. Auricchio from Italy was the last individual presenter. He
outlined the six topics that are the most important for future CD
research:
1. Understanding the entire clinical spectrum of gluten sensitivity.
2. Identifying the damaging peptides.
3. What is the mechanism of the damage that occurs.
4. The other (non HLA) genes that contribute to CD.
5. Developing an animal model.
6. Developing strategies of immune therapy.
Following his talk, there was a broad-ranging discussion of different
possibilities for research.
Then, a panel discussed the initiation of gluten sensitivity, about
which very little is known. The panel also discussed non-immune
reactions to gluten, meaning that the T-cells are important in the
damage, but are probably not the only process in the initiation phase
of the disease.
At this point, a comment was made that Joe says was worth repeating.
Here it is, to the best of our abilities, although it's obviously not
a direct quotation: Some of the responses seen in the challenge
studies happen too fast to be purely due to immune cells or T-cells.
It was suggested that there are further stages and what we see in CD
with these immediate responses is one of these further stages of CD.
Another comment was made that it's important to replicate studies that
have been done in only one center and in only two or three patients.
Joe then summarized what he thought were the most exciting aspects of
the conference:
1. The searches for the other non-HLA genes.
2. The description of very early or possibly non-immune response to
gluten.
3. The suggestion of non-gastrointestinal involvement (apparently
some posters described early changes in the gut within one to two
hours of a challenge.)
4. That it seems as if major progress has been made in understanding
the mechanism that causes the damage in the intestine.
I asked about the prevalence of CD, our perennial U.S. question, and
Joe said there were several posters showing that in almost every place
that was studied, the prevalence varies from between 1 in 100 to 1 in
500. Dr. Fasano's Baltimore blood donor study was one of those
presented.
It was a pleasure to be able to reach so many people with this
information and, especially, to work with Joe Murray. I should add
that he was positively heroic in his efforts to transmit this
information in such a timely fashion, and I think, as always with Joe,
we all owe him an enormous debt of gratitude.--Ann Whelan
Return to the Table of Contents
Newsletter Roundup
---------4--------
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 _The Nutmeg Celiac_ :
: --------------------------------- :
: Fall 1996 Manny & Phyllis Strumpf, editors :
: Nutmeg Celiac Support Group :
: 30 Lance Lane :
: Milford, CT 06460-7519 :
:................................................:
Intestinal Bleeding and Gluten Intolerance: According to a Texas
newspaper, many celiacs suffer from previously undetected intestinal
bleeding. This helps explain why the condition may lead to
iron-deficient anemia. (Patients also develop anemia because they
don't absorb iron efficiently.) Dr. Kenneth Fine of Baylor
University Medical Center examined 36 celiacs for subtle blood loss
and compared their bleeding to other patients with conditions that
affected their absorption of nutrients. He reported in the New
England Journal of Medicine that about half of the patients had
suffered intestinal bleeding. This may not change the way CD is
managed, but it adds a new dimension to its understanding. It also
means that a common colon cancer test that searches for intestinal
bleeding might not be accurate in celiacs, Dr. Fine said.
A New Fat Substitute is available. Judy Prager, RD, CDN, the
nutrition advisor for the Nutmeg Celiac Group, tells us about Olestra.
Proctor & Gamble has introduced this heat stable fat substitute, which
can be used in cooked foods. It will be marketed under the name Olean
and will be used to replace the added fat in snack foods such as
potato chips, corn chips, and crackers. It has the taste and feel of
fat, but is not metabolized or absorbed so it has no calories.
However, there are a few problems. Olestra drags caroteinoids from
the body; studies show that diets rich in caroteinoids are associated
with a lower risk of some cancers. A more common problem is that
Olestra may cause diarrhea when consumed in moderate amounts, due to
the fact it is an indigestible, greasy compound. Judy Prager does not
recommend eating foods containing Olestra as part of your regular
diet.
........................................................
: :
: Excerpts from _Gluten-free Friends_ :
: ----------------------------------- :
: Fall 1996 (Vol. 2, No. 3) R. Jean Powell, editor :
: Montana Celiac Society :
: 1019 So. Bozeman Ave. #3 :
: Bozeman, MT 59715 :
:......................................................:
Allergies, Intolerances, and CD are all different, Cleo Anderson
explains. Allergies affect 7% of children and 2% of adults, and
usually involve one or more of: milk, eggs, wheat, soybeans, nuts,
and peanuts (legumes). Allergy reactions include asthma, arthritis,
runny nose, itching, and rashes; and sometimes persistent diarrhea.
Most children outgrow allergies within a few years, and a number of
adults report that allergies can disappear if they stay away from the
offending foods for a year or more. Allergies are potentially fatal
if they trigger an anaphylactic reaction. Allergy reactions are
caused by the immune system. [Allergies involve IgE antibodies, which
are different from the antibodies involved in CD--editor.]
Intolerances are unlike allergies in that they have nothing to do with
the antibodies our immune systems produce. A food intolerance is a
non-immune reaction to food or food additives. Gluten intolerance
causes difficulty digesting gluten and exhibits mild symptoms ranging
from runny noses and wheezing to digestive upsets such as abdominal
pain, bloating, and diarrhea.
CD, also known as gluten enteropathy, is neither an allergy nor an
intolerance. Gluten enteropathy causes damage to the lining in the
small intestine, which interferes with the absorption of nutrients.
Neither allergies nor intolerances lead to this sort of intestinal
damage.
-=-=-=-=-
_A Sweet Fairy Tale_, by R. Jean Powell, is a children's story book
written to familiarize children with celiac terms, help develop
positive attitudes toward having a disease, and help children develop
acceptance through humor. It includes a glossary of CD terms. It can
be read by an adult as a bed-time story, or by children ages 10 and
up. It is illustrated, and has four 8.5 x 11 inch pages. The cost is
$3.55, including postage. Add $2 to have the pages laminated. All
proceeds go to the Montana Celiac Society. Write to Montana Celiac
Society, 1019 So. Bozeman #3, Bozeman, MT 59715
.................................................................
: :
: Excerpts from the San Antonio CS Support Group :
: ---------------------------------------------- :
: newsletter: July 1996 Lynn Rainwater, Secretary/Treasurer :
: 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:...............................................................:
_Crazy for Corn_, by Betty Fussel, is a paperback cook book published
by Harper Perennial (ISBN: 0-06-0950238-5) for $16. It contains
information about the history of corn in cooking around the world.
There are recipes from colonial day cookbooks, upscale restaurant
chefs, native cookery of the Southwest, and European ethnic recipes.
Many of the 170 recipes are GF.
_A Cookbook for Diabetic Celiacs_: A Guide for the Diabetic Celiac is
available from the Canadian Celiac Association, 6519B Mississauga
Road, Mississauga, ON L5N 1A6, Canada, (905) 567-7195. (Keep in mind
that there are differences between the Canadian and US regarding the
GF status of some ingredients.)
Return to the Table of Contents
References
----------
[1] From the CELIAC Listserv archives, on the Internet, July 24, 1996.
[2] From the CELIAC Listserv archives, on the Internet, Sept. 4, 1996.
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
Past President: Jim Lyles
Secretary: Denise Parsons
Newsletter Editor: Jim Lyles
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 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 Jim Lyles.
Return to the Table of Contents