<<Disclaimer: Verify this information before applying it to your situation.>>
Snippets From "The Celiac ActionLine"
-------------------------------------
The Celiac ActionLine is a quarterly newsletter published jointly by
Celiacs of Orlando and by the Gluten Intolerance Group (GIG) of
Florida. What follows are some of the useful things we've gleaned
from their newsletters dated January 1994 through January 1995. Our
thanks go to the Celiacs of Orlando and the GIG of Florida for
allowing this information to be freely copied and passed on.
Medically Speaking
------------------
Generic vs. Brand Name: This is a tricky issue in these days of
controlling medical costs, while ensuring the GF status of
medications. Some medical plans and the Federal Government require
the use of generic medication when appropriate. Some generic brands
are GF and can be used without any harmful side effects. The trick
is to determine 1) the name of the company supplying the generic, 2)
that it is GF (different doses may have different ingredients), and
3) that the pharmacy does not change sources between refills.
Whenever a prescription is refilled, just verify that the medication
is what was previously researched.
Dispense as Written: DAW (dispense as written), when placed on a
prescription, forces the issuance of the named drug. It can be a
major brand name or a generic equivalent that you have verified. The
pharmacy may call the physician and ask for permission to change to a
generic equivalent or whatever is currently in stock. Unless your
physician desires the extra work of repeating your analysis of drug
ingredients, the initial prescription is approved. This system
allows for control of costs and keeps the medication GF. The patient
or their family may be required to perform the research in
determining which medication is GF. If the physician understands and
supports your need to remain on a GF diet, this technique can work.
Chronic Fatigue: In an Italian study, 10 of 11 patients suffering
from Chronic Fatigue Immune Dysfunction Syndrome recovered when they
were placed on a gluten-free diet.<1>
Small Intestine Complications: A serious complication associated
with CD is ulceration and stricture of the small intestine. It is
fairly rare, and there is some question as to whether it is a
separate complication or an early stage of lymphoma. There are a few
cases of patients with CD and localized intestinal ulceration where
no malignancy develops. These patients responded well to surgical
removal of the diseased portion of the bowel. The characteristic
clinical findings are diarrhea, abdominal pain, intestinal bleeding,
and intestinal obstruction. These ulcers can appear at any level of
the small intestine. The appearance of these ulcerations provides no
clue as to their cause unless lymphoma can be diagnosed. In the
initially reported series, 75 % of the reported patients died as a
direct result of this complication, emphasizing its seriousness.<2>
CD in the Elderly: In a study of 228 adult celiacs, 42 (19%) were
diagnosed at age 60 or over. In this study, of the 35 patients who
did not have dermatitis herpetiformis, 15 had attended family doctors
and hospital outpatient departments for an average of 28 years with
unexplained symptoms or abnormalities in blood tests, but the
diagnosis of celiac disease had been missed. Some question the value
of diagnosing a condition that presents late in life with only
trivial symptoms, because it involves changing long established
eating habits. However, patients often only realize how unwell they
were in retrospect after going on a gluten-free diet; they had come
to accept their poor health as normal.<3>
Talking with Your Doctor: A new book, How to Talk to Your Doctor,
The Questions to Ask, by Dr. Janet R. Maurer, is an informative
discussion of the patient-physician relationship. Through knowledge
of this relationship, the patient can improve the process. The book
is easy to read and covers common illnesses, medications, test
procedures, the role of the specialist, hospitalization, and when to
consider changing doctors.
An Informed Parent: Reference material is helpful when talking with
your physician about secondary problems associated with CD. This is
especially true of parents, who must (sometimes) overcome a
perception of parental interference from physicians. One mother
recently used Dr. Michael Marsh's book, Coeliac Disease, to inform a
physician and change a diagnosis.
Children's Celiac Center: The Division of Pediatric Gastroenterology
at the University of Maryland, headed by Dr. Alessio Fasano, offers
the first children's center for celiac disease in the US.
"Diagnostic and treatment services are provided for children with
hard- to-diagnose and hard-to-treat gastrointestinal problems.
Emphasis is placed on diarrheal diseases, which are a major cause of
morbidity and mortality worldwide and are frequently not optimally
managed even in the United States."<4> Dr. Fasano is also the
medical advisor to the American Celiac Society. He can be reached
at: Director of Pediatric Gastroenterology and Nutrition, University
of Maryland School of Medicine, 22 South Green Street, University
Center, PO Box 280, Baltimore, MD 21201, phone (410) 328-0812.
Pharmacy Questions: John Tilelli, a Hudson Bay Point Hospital
pharmacist, volunteered to assist celiacs, physicians, and
pharmacists in determining the active and inactive ingredients in
medications. He uses a computer program to determine ingredient
information not found in the PDR or Fact Book. The program is
updated monthly for use throughout the hospital (located near
Clearwater, Florida). Your physician or pharmacist can call John
Tilelli to determine which medications are GF and appropriate for
your medical condition. Call from 7:30 am to 4 pm EST, Monday
through Friday, at (813) 869-5400, ext. 2615.
Lung Cavities in Celiacs: A study looked at seven celiacs that
developed lung abscesses or cavities. These patients were seen
during a 20-year period during which approximately 600 celiacs were
seen and 50 died. Six of the seven celiacs with lung abscesses died.
All were middle-aged. "Next to malignancy, pulmonary abscess was the
commonest cause of death in the coeliac population. The development
of respiratory symptoms should be regarded as a potentially serious
and life-threatening event in the middle-aged coeliac patient. Lung
abscess should be added to the list of respiratory diseases
associated with coeliac disease."<5>
CD in Italian Children: Population screening of 3,351 apparently
healthy, Italian school children showed a prevalence of 3.28 celiacs
per 1000, or about 1 in every 258 subjects. It suggests that celiac
disease may be more common than previously recognized and one of the
most prevalent life-long disorders in Italy. Initial screening was
done with a small blood sample obtained from a finger prick, which
was quick and easy. More detailed blood work was done on the
subjects with values indicative of CD. Finally, those relative few
that showed positive CD values on the second set of blood tests were
given biopsies. The study showed that two of every three subjects
that were biopsied were found to be affected by celiac disease.<6>
Infectious Diarrhea: CD patients are at a higher risk for
contracting severe infectious diarrheas and the complications
associated with them. Salmonella, Camphylobacter, and Giardia are
but a few such diseases from poorly cooked or stored food or from
water. It is wise to avoid unpasteurized dairy products; fresh
cheeses; raw or minimally cooked fish, fowl, pork, or beef; and raw
honey.<7>
Saliva Test: Dr. Susan Schiffman of Duke University, (919) 660-5657,
is undertaking a study of saliva for use as a diagnostic tool for
identification of celiac disease.
CD Blood Test Strip: A strip-AGA test has been developed in Europe.
It allows a rapid detection of serum IgG and IgA AGA from a single
drop of whole blood and a dot immunobinding assay to detect
anti-*-gliadin-specific antibodies.<8> The estimated cost per test
is $5. The test currently gives some false positives. It has the
potential for use in health fairs as a screening tool. It is
currently not available in the US.
Did You Know?...
----------------
CD and Irish Setters: Several medical articles have shown a
susceptibility to the symptoms of CD by Irish Setters.
Diagnosing CD in Women: Previous reports from Great Britain showed
10.3 years for the average time of diagnosis for women. This shows
the potential for undiagnosed celiacs to suffer for years, even in
countries such as Great Britain where the disease is relatively
common.
Child Magazine: The February 1994 issue contains an article from a
celiac mother about adapting to the diet. This uplifting story gave
some techniques to use with a celiac child. Experience with a celiac
spouse made the family's transition easier. Exercise caution with
some of the brands mentioned as they may no longer be GF.
Medical Deductions & CD: The extra cost of the diet is a medical
expense deduction. (Editor: See your new member packet for more
details.) Another possibility to offset the cost of the diet is
through a "Flexible Spending Fund" or "Cafeteria Plan", section 125
of the IRS code. This allows pretax funds for medical expenses. The
plan may not be available to all wage earners. Also, funds not spent
by year's end can't be transferred.
Disaster Preparedness: Shelters have a difficult time in
accommodating special diets. The Red Cross is now recommending that
celiacs and diabetics bring their own food and medicine if they go to
a shelter during a natural disaster. It is important to assemble
emergency supplies and create a plan of action for different types of
disasters. For a celiac, emergency supplies should include GF food
products that have a long shelf life. Soups, canned fruits,
vegetables, and meats, spaghetti sauce, dry GF pasta, peanut butter,
breakfast cereals, and rice are a few examples. During a crisis,
celiacs can help out by calling the County Emergency Management
Center and offering to bring GF foods to celiacs in shelters, or by
answering questions about ingredients.
Hidden CD: Type I diabetics, according to an Iowa study in progress,
have a 5-7% probability of having hidden CD.<9>
A Sports Celiac: Johnny Pesky, former Red Sox shortstop, is a
celiac. The Providence Journal-bulletin carried an article on his
adaptation to the diet after the 1982 World Series. Comments about
his experiences with the diet, at home and work, showed that a
productive life is possible for celiacs. Pesky credits his wife with
saving his life.
Hidden Gluten Sources
---------------------
Crescent Soup Base: There has been a change in Crescent Soup Base,
which is used in Bette Hagman's cookbooks. Unfortunately, this soup
base now contains wheat as an ingredient, so celiacs can no longer
use it.
Incorrect Status of Oats: At least one company is reporting that
oats are GF. This incorrect information is credited in the 1994
United States Government Composition of Foods. The Celiac ActionLine
is attempting to get a copy of this document and to demand a
correction through the FDA. Since this reference is being used by
companies, celiacs are faced with one additional question to ask drug
manufacturers.
Chee-Tos(tm): The label incorrectly appears to be appropriate.
Frito Lay confirmed in August 1994 that the product contains gluten
in the natural flavor.
Nuts: When nuts are listed as a product ingredient they can contain
a gluten-dusting to prevent sticking during production.
Dairy Trim: This is a combination of oats and rice used as a fat
replacer. Since it contains oats it is not GF. This is used as an
ingredient in some ice creams.
Celestial Seasoning: Their teas containing barley, malt or cinnamon
oil should be avoided by celiacs. Also, Harvest Spice(r) and
Cinnamon Apple Spice(r) might contain a grain-based alcohol. Phone:
(800) 351-8175.
Wheat-Free vs. Gluten-Free: Items labeled "wheat-free" are not
necessarily gluten-free. This can be an area of confusion when
talking with health food stores or reading labels and recipes. The
problem is common in articles and recipes regarding spelt. For
example, an article appeared in the March 1994 issue of "Better Homes
and Gardens" discussing spelt. Several celiacs read the article and
assumed that spelt was safe for the celiac diet. Spelt is NOT gluten
free!!
Food For Thought
----------------
Corporate Knowledge of CD: Phone calls and letters can cause changes
in ingredients. Mr. Spice and Sesmark changed their ingredients to
remove the possibility of gluten as a result of contact from celiacs.
Home Brewing: If you are the adventurous sort, you might wish to try
an experiment in brewing your own beer. The February/March 1994
issue of Beer Review contains an article entitled "Beer Allergy" that
documents experiments with gluten-free beer. If anyone tries this
out, let us know how it turns out.
Sesmark Crackers: Sesmark received so many calls from celiacs asking
about the ingredients in their rice crackers, that they changed the
recipe to use only GF ingredients. Their crackers are available at
grocery and health food stores.
GF Condiments: Passover is the season for celiacs to stock up on
their condiments for the year. Many products are GF due to the use
of cider vinegar (labeled as such) and safe ingredients.
Bread Tips: Betty Hagman offers these suggestions in your search for
the perfect loaf of bread:
* Instead of three eggs, try using one egg plus two egg whites.
* For more leavening, add 1 to 3 tsp. egg replacer.
* For a rounded loaf, a springy texture, and success every time,
add 1 teaspoon unflavored gelatin to the dry ingredients.
Thailand Rice Flour: This flour is milled using a water process as
compared to the dry process used in the US. When used in baking,
finished product will normally rise higher. Use this flour with
caution in bread machines.
Red Star: Red Star's service to new celiacs extends beyond help in
baking a loaf of GF bread. In addition to answering questions about
yeast and bread making, the staff at Red Star has assisted celiacs
with many problems associated with the transition to the diet. Not
only have the staff been understanding voices on the phone, they have
helped establish contact between new celiacs and support groups.
They have a special hot-line just for celiac-related questions:
(800) 4-CELIAC. That translates to (800) 423-5422.
Boston Chicken: Boston Chicken is in the process of developing cards
to inform their customers of which items are lactose-free,
gluten-free, etc. Menu information is available by calling (800)
365-7000. Recipes are proprietary, but when you explain the reason
they will furnish another 800 number to call for obtaining detailed
ingredient information. Incidentally, Boston Chicken uses cider
vinegar in the marinade for roasted chicken.
For More Information...
-----------------------
International Celiac Directory: The British Coeliac Society
publishes a directory of international celiac groups. The March 1994
edition lists 38 countries. Their address is: The Coeliac Society
of the United Kingdom, PO Box No. 220, High Wycombe, Bucks, Hp11 2HY
England. If you are planning to visit England, request their
information package on how to cope with the diet in the UK.
Immune System References: Two references, #93-529 Understanding the
Immune System and #94-3229 The Immune System, How it Works, are
available from the National Institute of Health. Write to: Office
of Cancer Communication, Building 31, Room 10A24, National Cancer
Institute, Bethesda, MD 20892.
Mr. Spice Sauces: This is a complete line of sauces labeled free of
gluten, salt, sugar, dairy products, fat, and MSG. The three sauces
that contained questionable ingredients were changed to be GF as of
January 1, 1995. For more information, call (800) 728-2348.
Cooking with Beans: Bean flour and the Full of Beans cookbook are
available from J. Erika Taylor, PO Box 1317, West Covina, CA 91793.
Erika is the niece of the cookbook author. The cookbook is priced at
$18.95. Bean flour is $7.50 for 4.4 lbs. Shipping is $3. (Part of
the actual shipping costs is being absorbed by Erika as a service to
celiacs.)
Rice Recipes: The USA Rice Council pamphlet on "Basic Rice Recipes
for those with allergies" has eight excellent GF recipes. It is
available by writing: USA Rice Council, PO Box 740121, Houston, TX
77274.
A New Cookbook: Gluten-Free Gems is a new GF cookbook from Noreen
Moses. It is available for $16.95 from Owens Publications, 8249 SW
Fairway Dr., Wilsonville, OR 97070. Recipes are designed for fellow
celiacs and their households. The recipes were influenced by friends
of the author from Canada, Great Britain, and Argentina. As with
many cookbooks, the author occasionally specifies brand names that
are not necessarily GF instead of listing generic ingredients.
GIG's Cookbook: The GIG of N.A. Cookbook is available for $28.15,
including shipping. It contains 225 GF recipes and is available in
bound or card file form. Send your order to: GIG of N.A., PO Box
23053, Seattle, WA 98102.
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