THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Eighteenth Edition March 1995
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: What's Inside Search For :
: ------------- ---------- :
: Miscellaneous Notes . . . . . . . . . -1- :
: Celiac in the 90s . . . . . . . . . . -2- :
: Clinical Presentations of CD in :
: the Pediatric Population . . . . . -3- :
: Recipe Page . . . . . . . . . . . . . -4- :
:................................................:
Disclaimer
Miscellaneous Notes:
---------1----------
Volunteers are being recruited for a University of Utah study to
detect genes that may predispose individuals to celiac disease. To
qualify for the study, a family must have two siblings with
biopsy-proven celiac disease or dermatitis herpetiformis. If you fit
these requirements and are willing to contribute blood samples,
please contact the study coordinator, Jeff Black, University of Utah,
Epidemiology, 420 Chipeta Way #180, Salt Lake City, UT 84108. For
more specific information, you may call Jeff at (800) 444-8638,
extension 1-5070.
I couldn't believe what they found
Had caused me to feel so run down.
"Just stop eating wheat.
"You won't feel so beat."
Now my get-up and go is renowned!
A new TCCSSG Cookbook will soon be available. Kathy Davis and Marcia
Campbell have been working hard on this project. According to them,
the new cookbook does not have any recipes from our first cookbook;
they are all new. Many of the recipes came from TCCSSG members. The
price has not yet been determined. Look for further details in
future issues of the Sprue-nik Press.
The Celiac ActionLine, a newsletter put out by the Celiacs of Orlando
and the Gluten Intolerance Group of Florida, lists several cookbooks
as sources of GF recipes. You should evaluate all receipes prior to
use. Many inappropriate products are included in these cookbooks,
due to differences in local brands, changes in ingredients, etc.
Also, be aware that some of these cookbooks target a wider audience
than just celiacs. A partial listing of these cookbooks follows:
The Allergy Baker, by Carol Rudoff
The Allergy Cookbook, by Ruth R. Shattuck
CSA/USA Pantry #1-#5
Cooking Without, by Margret Williams, RD
Cooking for the Allergic Child, by Judy Moyer
Easy and Delicious Rice Flour Recipes, by Marion N. Wood
Return to the Table of Contents
"Celiac in the 90s"
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by Dr. Joseph Murray
summarized by Jim Lyles
Dr. Joseph Murray, of the University of Iowa, is a gastroenterologist
that specializes in treating Celiac disease. He gave a talk entitled
"Celiacs in the 90s" at a conference hosted by the American Celiac
Society on June 10-11, 1994. What follows are highlights of Dr.
Murray's talk.
Dr. Murray comes from Ireland, where Celiac Sprue (CS) is much more
common. In Ireland, people have a much easier time dealing with the
gluten-free (GF) diet, whereas in the US it is almost as though it
were considered unpatriotic to not eat wheat.
Dr. Murray believes that ALL Dermatitis Herpetiformes (DH) patients
also have Celiac disease, whether they realize it or not. This
celiac disease is often latent or silent. Earlier reports of
patients with DH who did not have enteropathy (small intestinal
damage) may not have counted milder forms of the celiac disease
damage. (Editor's note: Dr. Alexander, our physician advisor,
believes most, but not all DH patients have Celiac disease.)
Not every Celiac patient suffers weight loss or has diarrhea. One of
his patients is a woman who weighed 400 lbs. when she was diagnosed.
Her symptoms included nocturnal pain, and constipation. After
checking the stomach and some other testing, they did a small
intestine biopsy. When they found the classic flat villi, they
suspected a lab mix-up because the woman's symptoms were so atypical.
In this case, the woman was suffering from cravings that caused her
to greatly overeat. She was nutritionally over- compensating for the
small intestine damage. After being diagnosed, the patient went on
the GF diet, lost some of these cravings, and promptly lost 50 lbs.
Symptomatic Celiacs can be split into two groups: Those that have the
classical CS symptoms and those that have atypical symptoms or only
one of the classical symptoms. Patients in the first group are
usually (though not always) diagnosed correctly by a
gastroenterologist. Those in the second group, which make up about
2/3 of Dr. Murray's patients, are much more difficult to diagnose.
Another factor is "variable histology", which basically means that
the villi are not always completely flat.
The average adult has more than 20 feet of small intestine, and
often, only the very front part gets severely damaged. Often, the
remaining portion of the small intestine is able to compensate for
what the damaged section is not absorbing.
Dr. Murray believes that we are seeing fewer diagnosed Celiacs in the
US than in Ireland because our diets are very calorie-dense. This
means that even with malabsorption you are still getting a lot of
nutrients so that you absorb enough to not lose weight and not fully
develop other symptoms.
Gluten causes damage that makes the gut "leaky". This can lead to
exposure of the body's immune system to foreign allergens it would
not otherwise see. This explains why Celiacs tend to have more
allergies than the general population.
Dr. Murray believes there are several "triggers" that can activate
Celiac disease in genetically susceptible people:
* A sudden change to a low fat diet, which usually means a sudden
increase in starches, which usually means a dramatic increase in
wheat-based products.
* A woman is susceptible during postpartum, when the immune system
is adjusting to the changes after delivery.
* Surgery, particularly GI (gall bladder, etc.) can be a trigger.
* Certain viral infections. Also, there is some suspicion that
certain antibiotics can be triggers, though in these cases it
could also be the infection that the antibiotics are fighting.
Dr. Murray believes CS is not an allergy; it is an auto immune
disease. For Celiac disease to develop, two conditions must be met:
1. There must be a genetic predisposition towards Celiac disease.
This involves very specific genetic factors.
2. The auto immune system must be triggered in some way.
CS tends somewhat to run in families. The incidence in first degree
relatives (parents, siblings, children) of a Celiac is about 10%.
Anyone who has both a parent and a child with CS should be tested
themselves for CS.
CS is not entirely genetic. Among identical twins, if one has CS,
about 70% of the time the other will also have CS. If the disease
were entirely genetic, then the incidence in identical twins would be
100%. Among siblings that are HLA-matched to a Celiac sibling, the
incidence of CS is about 30%. When not HLA-matched, the incidence
rate is much lower.
According to Dr. Murray, since CS is an auto immune disease, it
follows that there are other auto immune diseases that are associated
with it. Rheumatoid Arthritis, Lupus, Type I Diabetes, and some eye
problems may occur more frequently in CS patients. This is not
because of gluten or CS itself; it is because CS patients are part of
a group that is genetically predisposed towards auto immune problems.
About 5% of CS patients also have DH. At the University of Iowa,
there have been 350 patients diagnosed with DH. Dr. Murray believes
these have celiac disease. If these DH patients are only 5% of the
Celiacs, then there should be about 7,000 Celiacs in the Iowa area.
The number of diagnosed Celiacs is much less than 7,000. Even if
this extrapolation is exaggerated, it is still clear that there are
many undiagnosed Celiacs out in the general population.
Most DH patients are prescribed Dapsone, which treats the symptoms.
In most cases, they are told of the GF diet, but it is not stressed
and so most DH patients do not follow the diet. Dr. Murray finds
this most distressing, because even if these patients don't have
GI-related symptoms, there is still continual damage being done to
the small intestine. Dermatologists, in general, don't give enough
consideration to a GI problem as the source of DH. This places DH
patients at an even greater risk of developing lymphoma in the small
intestine.
Lymphoma in the small intestine is extremely rare in the general
population. Untreated Celiacs have a 70 or 80 times greater chance
of developing lymphoma. A lifetime of not following the GF diet
gives a Celiac about a 7% chance of developing lymphoma. There is
also an increased risk of other GI-related and lymphatic cancers.
The risk of developing lymphoma immediately begins to decrease when a
Celiac patient starts following a GF diet. The risk continues to
decrease until, after 3-5 years, it approaches that of the general
population.
Dr. Murray makes a small intestine X-ray a routine part of the
treatment for a newly diagnosed adult Celiac patient, especially
those over 40 years of age. He's looking for lymphoma in the small
intestine. It is very difficult to find, but if it is found it can
usually be successfully treated.
DH is caused by reactions to antibody complexes that, for reasons not
totally clear, become deposited under the skin. These DH breakouts
can continue for a long time after a GF diet is adopted, because
these deposits are not reabsorbed by the body very quickly. In about
70% of the cases, dapsone treatments can be discontinued after 18
months-2 years; for the other 30% it takes longer.
How gluten-free should the diet be? Dr. Murray believes that Celiacs
should treat gluten the same way they treat rat poison. Celiacs
should never eat food if it is known to contain gluten. Accidental
ingestion of gluten should be avoided as much as possible. For a
Celiac, it is unacceptable for gluten to be ingested more than once a
month, accidentally or otherwise.
You can NOT judge whether a food has gluten by your reaction to it.
Many Celiacs can ingest small amounts of gluten with no symptoms;
however, the small intestine is still being damaged.
Dr. Murray stressed that once you have Celiac disease, you will
always have it; you will never be able to eat wheat or other
gluten-containing products again. This is a fact of life that
Celiacs simply must accept and live with.
Lactose intolerance is not common in white Caucasian adults of
northern european descent; probably close to 5%.
(Editor's note: According to Dr. Alexander, it occurs in about 30% of
the adult US population.) A newly diagnosed Celiac may have
temporary lactose-intolerance due to the damage in the gut; the
intolerance should disappear once the gut heals. If you are
lactose-intolerant, you should be aware that while ingesting lactose
may make you uncomfortable, it does not damage the intestine. Most
newly diagnosed Celiacs can use temporary lactose-intolerance as a
way to check on the healing taking place. Once a month, they should
drink half a glass of milk on an empty stomach and see if there is a
reaction such as gas, cramps, diarrhea, etc. Failure to have a
lactose reaction means that the gut is healing and the diet is
working. For most people, lactose intolerance will disappear within
six months of being on a GF diet.
Dr. Murray advises Celiac patients against smoking. Newly diagnosed
Celiacs, as well as those not following a strict GF diet, already
have an increased risk of malignancy. Celiacs cannot afford to
increase that risk even further by smoking.
Refractory Sprue is a rare complication that generally occurs in
older Celiac patients. This is a situation where malabsorption
continues to occur even though the patient is on a GF diet. Dr.
Murray says the first three things you do when presented with
refractory sprue are:
1. Check the diet.
2. Check the diet again.
3. Check the diet a third time.
Once you have verified that no hidden sources of gluten are causing
the problem, then you recheck the diagnosis, look for enzyme
supplements to help with digestion, check for pancreatic problems,
lymphoma bacterial overgrowth, etc.
Diagnosis of CS in the US is probably lower than it should be due to
rigid medical practices and old thinking. One common label applied
to people with stomach complaints is Irritable Bowel Syndrome. Dr.
Murray calls that an intellectual trash can if it is used too widely
and if doctors forget about other possibilities, in that it is
occasionally over-diagnosed. It really means, "There is something
wrong with your stomach, and we don't know what it is." The
occurrence of stress-induced bowel dysfunction is a real entity.
In the US, CS is an exception to the rule concerning research
efforts. It is considered to be a marginal disease. There is very
little commercial interest in it. CS is definitely under-represented
when compared to other diseases that get far more attention.
Dr. Murray believes there are too many different national
organizations that deal with CS. He believes these organizations
need to unify and become one in order to advance the national agenda.
He thinks local support groups such as our TCCSSG are doing a lot of
good work; he considers belonging to a support group to be an
essential part of the treatment of Celiac disease.
Dr. Murray recommends physicians associated with local support groups
should read a book that thoroughly explains this disease. The book
is Coeliac Disease, by Michael Marsh, Blackwell Scientific
Publications, November 1992. It costs about $160, but is well worth
the cost if it helps a physician become more interested and learn
more about this disease.
Return to the Table of Contents
"Clinical Presentations of Celiac Disease in the Pediatric Population"
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by Dr. Alessio Fasano
summarized by Jim Lyles
Dr. Alessio Fasano, of the University of Maryland, is a pediatric
gastroenterologist that specializes in treating Celiac disease. He
gave a talk entitled "Clinical Presentations of Celiac Disease in the
Pediatric Population" at a conference hosted by the American Celiac
Society on June 10-11, 1994. What follows are highlights of Dr.
Fasano's talk.
Dr. Fasano started out with this familiar statement: Celiac sprue is
a life-long condition; there is no such thing as a transient celiac
patient. Two factors are involved in celiac sprue: 1) You must be
genetically predisposed towards the disease, and 2) Some
environmental factor must trigger it.
In this country, there is a lack of training and understanding in the
medical community about this disease. Medical students and
practitioners don't think of celiac sprue when presented with
symptoms that ought to be obvious. He asked a class of medical
students what kind of tests they would run if a patient was suffering
from malabsorption. He got a variety of answers, encompassing the
entire GI tract--except that NONE of them thought of running tests
for celiac sprue. Dr. Fasano feels that this classroom experience is
the rule, and not the exception, in our country.
Dr. Fasano showed a picture of the classic, undiagnosed celiac: a
child with thin limbs and bulging stomach. The child was lethargic
and had all the classic symptoms. He said with modern health care
you don't see this kind of case anymore; it doesn't (and shouldn't)
get that far. Long before that point is reached, the patient would
have complained of diarrhea and other symptoms, and a diagnosis would
have been made. These are the celiacs with typical symptoms.
However, a lot of people have only a few symptoms, or have unusual
(atypical) symptoms. Some have only slight symptoms or none at all;
these are referred to as latent celiacs. Latent celiacs still have
damage going on in the small intestine and may only develop symptoms
of the disease at a later time.
In the European community, it is estimated that if you add together
the diagnosed celiacs, the asymptomatic celiacs that may or may not
be diagnosed, and the undiagnosed latent celiacs, the frequency in
the general population would be about one in 300. This refers to a
mostly Caucasian population of European descent, which is
approximately the same makeup of our country's population. The
difference between our estimates of three per 10,000 and their
estimates of three per 1000 is not due to genetic differences,
instead it indicates that there are many undiagnosed celiacs in our
population.
Dr. Fasano spoke of a young child with uncontrollable seizures. A
CT-scan showed calcification all over the child's brain, especially
on the occipital area at the back of the brain. Doctors representing
several different medical disciplines were unable to determine what
was wrong. The patient was then referred to Dr. Fasano, who promptly
ordered some blood tests. The test results indicated a high
probability of celiac sprue, and a subsequent biopsy confirmed the
diagnosis. The child was placed on a gluten-free diet. After three
months, the seizures were completely gone. A follow-up CT-scan two
years later revealed that nearly all the calcium deposits were gone.
Dr. Fasano was careful to point out that this was only one case, and
a very unusual one at that. However, it is a case where the child
did not have any symptoms associated with the stomach or intestines.
What caused the calcification in the brain may have been a problem in
the absorption of folic acid, caused by damage in the small
intestine. Since there were no other symptoms, this is the sort of
case where very few doctors would have caught on to the fact that an
intestinal disorder was at the root of the trouble.
Another example involved a colleague that works with children at an
institute that handles children of short stature. This institute
looks into why the children are not as tall as one would expect them
to be. The institute had a blood serum bank containing samples for
all the children being studied. Dr. Fasano asked his colleague how
many of the children were diagnosed as having celiac sprue. The
answer: None. Dr. Fasano received permission to run tests on the
serum samples. There were two groups: Children that responded to
growth hormones, and children that did not. None of the children
were severely undersized; they were simply below the normal limits on
the growth curve.
All of the children that were responding to the growth hormone had
anti-gliadin antibody levels below the cutoff. Of the children in
the other group, in some the antibody levels were normal; in the rest
the antibody levels were high. At the time of the talk, one of the
kids in the latter group had been diagnosed as having celiac sprue,
and several others were being checked for it. Dr. Fasano estimates
that in children of short stature, about 20% are undiagnosed celiacs.
Dr. Fasano showed a video tape of a TV news report on another
patient. In this case it was an 18 month old child with bouts of
screaming and banging his head on the floor, for up to two hours at a
time. He had just begun to speak, but now seemed to have lost that
ability. He had stopped growing and was losing weight. Doctors
first suspected lead poisoning, attention deficit, or even cystic
fibrosis. He was correctly diagnosed because of a chance encounter
with Dr. Fasano while at the hospital for some neurological tests.
Dr. Fasano suggested celiac sprue as a possible cause of the
problems. After four days on the diet, the child calmed down and
began playing with his toys like a normal child. Within 30 days, he
had progressed back to and well beyond the ability to speak a few
words, to the extent that the nurse joked about giving him a little
gluten to quiet him down some.
The diagnosis of celiac sprue must still be confirmed with a biopsy.
However, a combination of three blood tests can be highly predictive
of celiac disease: endomysial, reticulin, and gliadin antibodies.
When these three tests all come out positive, there is a 99.6% chance
that the patient has celiac sprue. When all three tests come out
negative, there is a 99.3% chance that the patient does not have
celiac sprue.
The IgA antibodies drop down quickly once a gluten-free diet is
established. Dr. Fasano showed slides for one of his patients. At
the time of diagnosis, all three antibody tests were high. After
just 15 days on the diet, the IgA reading had dropped sharply; after
three months, the IgA antibodies had completely disappeared. This
makes the IgA antibody test a good tool for measuring diet
compliance; a negative result means a completely gluten- free diet.
Therefore, if a patient still has symptoms of celiac disease, this
test can be used to determine if the patient is (perhaps unknowingly)
eating gluten, or if the patient has some other medical condition
that is causing the symptoms. (Author's note: Dr. Fasano's patients
are children. Children tend to respond more quickly than adults.)
The traditional approach to diagnosing celiac disease uses a
three-step process:
1. Perform a biopsy. If the villi are damaged, go to step 2.
2. Place on a gluten-free diet and then perform another biopsy. If
the villi are healed, go on to step 3.
3. Put gluten back into the diet and then perform a third biopsy.
If the villi are again damaged, then the diagnosis is complete.
At this point, the patient goes on a gluten-free diet for life.
However, if all of the following are true:
1. Blood tests are positive for celiac-related antibodies.
2. The patient has multiple symptoms.
3. The first biopsy clearly shows damaged villi.
4. The patient clearly responds to a gluten-free diet.
5. Follow-up blood tests are negative.
then Dr. Fasano feels only a single biopsy is necessary to make a
definite diagnosis.
Return to the Table of Contents
Recipe Page
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Cheesy Potato Casserole
16 oz. GF sour cream 12-16 oz. shredded yellow cheese
1 medium-small onion, chopped 2 pkgs. GF Lipton Cup-Of-Soup:
1 stick butter, melted Cream of Chicken, reconstituted
2 lbs. thawed Ore-Ida hash browns potato chips, crumbled
Preheat oven to 350 degrees. Mix sour cream, onion, butter, and
soup. Add cheese, mix, then add potatoes. Spread in a large
casserole dish. Crumble potato chips on top. Bake one hour
uncovered.
This recipe came from our Christmas Potluck dinner.
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Walnut Cream Cheese Richies
4 oz. GF cream cheese 1 pouch Dietary Specialties white cake mix
1/4 cup butter/margarine 1 cup chopped walnuts
1 egg 1 tsp. GF vanilla
Cream together the cream cheese, margarine, and egg. Add the cake
mix and beat well. Add the walnuts, stirring until well blended.
Chill one hour.
Heat oven to 350 degrees. Shape mixture into balls and place on
ungreased cookie sheet. Bake 12-15 minutes or until lightly browned
at the edges. Makes about 30 cookies.
This recipe came from our Christmas Potluck dinner.
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Potato Dumplings (for Passover)
4 potatoes, peeled 1/2 tsp. salt
1/4 cup oil 4 tbsp. potato starch
4 eggs, beaten 1 tbsp coarse salt
Cook potatoes in water, covered until soft. Drain & allow to cool.
Mash the potatoes with the oil, eggs, and salt, using a potato
masher. Add the potato starch and refrigerate for an hour.
Fill a large pot with water, add the coarse salt, and bring to a
boil. Dust a work surface with some potato starch and roll out the
potato mixture. Cut into small squares. Cook the dumplings in the
boiling water until they float up to the surface.
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Potato Yogurt Cakes (for Passover)
3 potatoes 2 eggs
2 onions grated 1/2 tsp. salt
2 oz. butter 1/2 tsp. pepper
2 tbsp. chopped dill 2 cups plain GF yogurt
2 tbsp. potato starch
Peel, slice, and cook the potatoes in boiling water for 20 minutes.
Drain. Saute the onions in the butter until golden. Mash the
potatoes and mix with all the remaining ingredients. Be sure to
include the butter in which the onions were sauteed in the mixture.
Grease a 12 portion muffin tin and heat in a preheated oven for five
minutes. Divide the potato mixture between the 12 muffin cups and
bake at 325 degrees for 45 minutes or until golden brown.
Makes 12 cakes. These are good served with fish.
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Apple, Peach, or Apricot Crisp
4 cups cored, peeled, & sliced fruit 1 tsp. cinnamon
1/2 cup or less water 1/4 tsp. nutmeg
3/4 cup GF flour mix** 1/2 cup butter or margarine
1 cup brown or white sugar pinch of salt
Oil a 9x9 baking dish and add the fruit and water. Mix the remaining
ingredients together and break up the mixture over the fruit. Bake
at 350 degrees until the fruit is softand the crust is brown and
crisp (25-30 minutes).
Can be served plain, with cream, whipped cream, ice cream, or a glass
of rum. This recipe is from Melody & Bob Gabriel in New Hampshire.
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** GF flour mix:
6 parts white rice flour
2 parts potato starch (NOT the same as potato flour)
1 part tapioca starch (also called tapioca flour)
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Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Jim Lyles
Vice President: Diane Morof
Past President: Kathy Davis
Treasurer: Kathy Wagerson
Secretary: Denise Parsons
Newsletter Editor: Jim Lyles (200-2214@mcimail.com)
Contributing Editor: Judy Hafner (gpyp07a@prodigy.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 an e-mail note to Jim Lyles, at the e-mail address
listed above.