THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 7, Number 5 July/August 1998
**********************************************************************
....................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: 1998 CCA Conference Highlights: :
: Overview of Blood Screening :
: 25 Years and Still Learning :
: Living Well Without Gluten :
: 25 Years of Nutrition :
: Labeling of Foods :
: Dermatitis Herpetiformis :
: Blood Screening and CD :
: Gift of Wings :
: Panel Discussion :
:..................................:
References
Disclaimer
Miscellaneous Notes:
--------------------
President's Corner: I hope all of you are having a great summer.
Like many of you, I've been really busy. I find I talk to a lot of
people who think it's okay to eat gluten occasionally. I can't stress
enough how dangerous this is. It brings to mind a story I thought I
would share with you:
There was a man named Joe, who lived a good life, believed in God, and
regularly attended church services. One day, floods were predicted
for the area where he lived. The police came and told him he had to
leave. Joe refused to go, saying, "God will save me." The rains got
heavier. A boat came around and told Joe he had to leave. Joe
refused, giving the same reply. A few hours later, with the house
nearly covered with water and Joe on the roof, a helicopter came to
rescue him. Again, Joe refused to leave, insisting that God would
save him. Well, Joe drowned. He got to Heaven, and proceeded to yell
at God, saying, "Why didn't you save me?" God replied, "But Joe, I
tried to save you. I sent the police, then a boat, and then a
helicopter."
I think there is a lesson in this story for all of us. God has sent
us our support groups, our gluten-free food companies, and our health
food stores. Please don't be tempted to eat gluten; if you are,
remember this story. Use your shopping guide. Call other people in
the group if you feel tempted. We care.--Mary Guerriero
-=-=- -=-=-
Celiac Research Update: In our May 1997 newsletter we told you of a
new study being conducted to determine the prevalence of celiac
disease (CD) in the USA. The University of Maryland School of
Medicine (UMSOM) established the Center for Celiac Research (CfCR) to
conduct this study, with Drs. Alessio Fasano and Karoly Horvath as
medical directors. At that time we asked for your financial support
for this important work. At this time we'd like to give you an update
on both the study and the fund-raising for it:
Study progress: In October 1997, the initial phase of the study was
implemented with a blood screening of first-degree relatives in
Westchester, New York. Screenings have also been done in Baltimore
and Pittsburgh. Other screenings are planned over the next few
months in cities across the country. A "How-To" guideline will
soon be available for groups of all sizes who want to set up a
blood screening in their local areas. When it is available a
message will be posted on the CELIAC listserv on the internet.
Fund-raising progress: In the first year, approximately 500 donors
contributed and/or pledged $150,000. From $10 individual
contributions to the $50,0000 donation from the Oberkotter
Foundation, all donations are important. Support groups around the
country held fund-raisers. We can be very proud to be part of this
grassroots fund-raising effort. But much more money is needed for
the regional centers in the study to become fully operational. The
National Institute of Health held a meeting in March to discuss
assisting in the funding, and other sources of funding were
discussed. However, the CfCR continues to call upon us, the celiac
community, to do whatever we can to help them finish the study. If
you have any questions or suggestions, contact Pam King, Director
of External Affairs, 410-706-2715, ping@pediatrics.ab.umd.edu; or
contact CfCR volunteer Bob Levy, bobolevy@erols.com. Donations or
pledges should be made payable to the UM Foundation, Inc. Center
for Celiac Research and mailed to Attent ion: Pamela King,
Director of External Affairs, University of Maryland School of
Medicine, 700 West Lombard Street, 2nd floor, Baltimore, MD 21201.
-=-=- -=-=-
Boston Market Update: In the last issue of _The Sprue-nik Press_, we
listed an incorrect phone number for Boston Market. The correct
number is 1-800-365-7000. We are sorry for this error.
We also listed some GF products available at Boston Market. We are
happy now to add some more items to the list, courtesy of TCCSSG
member Sara Brooks. The list of GF products at Boston Market now
includes all of the following:
apples with cinnamon
baked beans
butternut squash
corn
cranberry relish
creamed spinach
fruit salad
jumpin' juice squares
mashed potatoes
new potatoes w/dill sauce
rotisserie chicken
rotisserie turkey
steamed vegetables
zucchini marinara
However, one must be cautious when eating there. Sara warns us, "...I
was mortified to see dough crusted meat pies prominently displayed in
the middle of the food trays. I was most concerned with the flakes of
the crust falling into the bins of foods we could eat. Also, the
pasta trays were near items we could eat. My worry was the pasta
could accidentally fall into the trays, and someone would simply spoon
it out, leaving the food contaminated. We would be none the wiser. I
also wondered about the gravy accidentally dripping into the
surrounding pans....What bothers me is they say all this food is GF,
but do nothing to insure it's purity for us."
So exercise caution and good judgment when eating at Boston Market.
Look the food pans over carefully. Don't be afraid to ask to be
served from fresh containers of foods, to minimize the risk of
contamination.
Our thanks go to Sara, both for the additional GF items, and for the
well-stated warning.
-=-=- -=-=-
Tips from Regina Kukielka:
* Rice flour can be purchased from three different sources:
oriental stores (sweet rice or glutinous rice flour), US health
food and mail order companies, and Indian stores (much cheaper
than US rice flour sources). Each source seems to require a
different amount of liquid for the best results. Oriental flours
require the least and Indian flours the most liquid. (Most
recipes do not indicate which kind of rice flour to use.)
* If yeast bread has a hole in it, it needs more liquid.
* Batter made using baking powder should be about the same
consistency as wheat flour batter. (Note: Be sure to
occasionally check the expiration date on the baking powder tin.)
If raisins, nuts, etc. sink to the bottom during the baking, use
a little less liquid the next time.
* I notice that some mixes and recipes come from health food people
who try to keep the fat and cholesterol down. I add an extra egg
and butter (or oil) to increase the liquid and improve the taste
and texture. (I watch my fat and cholesterol by eating plenty of
fresh fruits, vegetables and fish, and not much meat. But when I
want goodies, I want GOOD goodies.)
* I've had good luck substituting rice flour for wheat flour in old
recipes. At first I added xanthan gum to create the same
consistency as wheat flour. But xanthan gum is so expensive I
tried baking without it. I found that by increasing the rice
flour and not using xanthan gum at all, the results were the same
for recipes with baking powder or baking soda. However, for
yeast dough you still need the xanthan gum. As an example, I
made the Toll House chocolate chip cookies with 2 tsp. xanthan
gum. Then I tried omitting the xanthan gum and adding more
flour, and it worked great.
Return to the Table of Contents
1998 Canadian Celiac Association Conference Highlights:
------------------------------------------------------
summarized by Tom & Carolyn Sullivan and Jim Lyles
General Comments
----------------
The conference, the 25th anniversary conference of the Canadian Celiac
Association (CCA), included three main speakers and four break-out
sessions on Saturday and a panel discussion and Q & A on Sunday with
all the speakers. About 350 people attended. It was self-contained
in the hotel and, although kept on schedule quite well, was never
rushed. There was usually time for interaction with the speakers.
Return to the Table of Contents
Overview of Blood Screening, Dr. George Davidson
---------------------------
Dr. George Davidson is Professor of Pediatrics at British Columbia
Children's Hospital. Dr. Davidson is also Chairman of the CCA .
The CCA started 25 years ago. It now has 25 chapters and 4,000
members.
Dr. Davidson noted the misconceptions that existed 25 years ago when
the CCA first started with regard to diagnosis and treatment of CD.
He observed that the modern diagnosis and treatment of the disease as
well as its familial involvement was not recognized until the
mid-1950's and the fact that it is a life-long disease was not defined
until 1969.
Several years ago the CCA did a survey among their members. They
found the usual: patients showing a high number of symptoms for years
prior to diagnosis, and multiple doctors seen before diagnosis. Also,
the number of diagnosed patients was far lower than the expected
numbers. Their purpose had been to raise awareness. Dr. Davidson
wondered aloud if they should do a second survey now? [In a lunch
line conversation, Dr. Davidson admitted that he wasn't sure a survey
now would tell them anything new or provide any clues on new
directions.-ed.]
Screening tests reduce the number of people that need to be biopsied;
they don't make a full diagnosis. Tests for intestinal permeability
and sugar absorption are not reliable screening tests for CD. The
screening tests used for CD include:
* Urine, looking for gut damage.
* Serology, looking for antibodies in UNTREATED celiacs:
antigliadin (AGA) (90%+ specificity)
antiendomysial (EMA) (close to 100% specificity)
In Canada, medical care and costs are somewhat different than in the
U.S. Serology testing is not as available as it should be in most
provinces; most testing is done as part of research studies.
Newfoundland has it available as a service but it must be
gastroenterologist-approved. And British Columbia has it as part of
lab service now if ordered by a physician. Dr. Davidson noted that
test and diagnosis is, however, not the end. There must also be
treatment AND follow-up. As an added note, research studies on CD are
expanding in Canada.
Dr. Davidson conducted a Medline search to determine the literature
trend on why celiac disease starts. Although he found little
published, the data supported the following conclusions:
1. Some interest exists in a new theory about a neoantigen being
formed.
2. There is declining interest in the literature about genetics and
CD.
3. A large segment, 1/3 - 1/2 of the data, concerned associated
conditions to CD. There was a large variety of conditions and
screening tools helped in all cases.
4. Malignancy studies are declining. His conclusion is that if CD is
treated, there is no problem.
5. Osteoporosis studies are increasing. However, diet and early
diagnosis help in treatment.
6. CD awareness is a circular flow: awareness leads to screening
which leads to diagnosis which leads to early treatment and
success which leads to increased awareness.
Dr. Davidson compared 1997 publications for CD and Cystic Fibrosis
(CF). This is what he found (the numbers are approximate):
Topic CD Publications CF Publications
----- --------------- ---------------
basic science 5 150
genetics 5 150
clinical 80 300
screening/diagnosis 40 60
nutrition/diet 20 50
psychosocial 2-3 25
other 10 80
Dr. Davidson made three other observations:
1. Human umbilical cord tissue will replace monkey esophagus for the
antiendomysial testing because results are equivalent and the
supply is plentiful and inexpensive.
2. Sugar absorption and intestinal permeability MAY eventually be a
means to possibly determine if hidden gluten is in the diet.
3. Psychosocial studies of CD are essentially non-existent, only 2 -
3. While the need for support for CD patients is known and the
dietary cost is expensive, there are no studies in the literature
on the subject.
Return to the Table of Contents
25 Years and Still Learning, Dr. Peter Ernst
---------------------------
Dr. Peter Ernst is Senior Scientist at the Dept. of Pediatrics,
University of Texas Medical Branch. He is the son of Canadian Celiac
Association (CCA) co-founder Kay Ernst, and is a celiac himself.
The classical symptoms of celiac disease (CD) are less common now.
Symptoms such as anemia, osteoporosis, chronic fatigue, and
neurological problems have become more common. From an
epidemiological perspective, most of the history is European and they
are finding fewer children and more adults now. He said we need to
switch from a cereal-based diet. The USA is reexamining its assumed 1
in 5000 classic presentation and 6% of diabetic children. Most
diagnoses are now being made from associated diseases and screening
tests.
CD is an immune system disease and results in an immune system
response according to Dr. Ernst. The activation of the immune system
is what causes injury. The immune response is triggered in the case
of CD by gliadin and other cereal prolamins, and the balance of the
immune regulation controls the type of reaction an individual
exhibits. The response is variable with most people having no
reaction and those with CD having a very robust response.
Celiacs ingesting gluten show a two-to-six-fold increase in intestinal
plasma cells, and an increase in intraepithelial lymphocytes.
There is a genetic factor in CD. In about 70% of the cases where one
identical twin has CD, the other also has it. [Clearly other factors
are also involved, or this would be 100%-ed.] Overall, there is about
a 10% prevalence in first-degree relatives. The prevalence is higher
in relatives with matching HLA haplotypes.
One of the following gene combinations is usually found in celiacs:
DR3-DQ2
DR5/7-DQ2
DR4-DQ8
Other genes are also likely involved in CD. Genetic tests are not
sufficient for screening, because many non-celiacs also have these
same genes.
The endomysial antibody (EMA) blood test is often used to screen for
CD. However, diagnosis should not be made on this test alone. All
EMA-positive patients should have a small-bowel biopsy. If the
characteristic celiac damage is found, and the patient then responds
to a gluten-free (GF) diet, then a diagnosis of CD can be made.
The main treatment for CD is a life-long GF diet. Many celiacs found
it difficult to comply with this diet, due to factors such as:
eating away from home
peer pressure for children, teens
less acceptable taste, texture
accidental ingestion of gluten
The use of oats and wheat starch is a controversial topic. Some
studies have suggested that oats are acceptable on a GF diet, and in
Great Britain wheat starch is considered to be safe for celiacs.
[However, in the US and Canada it is almost universally agreed that
wheat starch is not appropriate for a GF diet. Also, many celiac
experts and most celiac organizations recommend against the use of
oats as well, particularly for celiac children.--ed.]
A GF diet reduces the risk of malignancy in celiacs. It is unclear
how much gluten, if any, is safe, though some feel that low levels of
gluten would not be a problem.
During Dr. Ernst's talk, he indicated his philosophy toward CD which
is, "Don't exclude anything if it is unnecessary." As a result he
made three assertions which may provoke no major objection from
Canadian celiacs but are controversial among US celiacs. Dr. Ernst's
first assertion is that it is almost impossible for gliadins to be in
distilled products. For instance, many people avoid distilled
vinegar; Dr. Ernst believes this is almost certainly unnecessary. In
his mind, there is no "celiac" problem regardless of anecdotal
evidence to the contrary. [This is a view shared by the CCA and many
experts, including USDA grain expert Donald Kasarda. However, many US
celiac organizations, including our support group and CSA/USA,
recommend against the use of distilled products unless the source is a
non-gluten grain. Each celiac must make their own decision regarding
the use of distilled products.-- ed.]
Dr. Ernst's second assertion refers to beer. He agrees with most
British celiacs, where the general view is that you would have to
destroy your liver with the alcohol in several pints a day, in order
to come to harm from the possibly few milligrams of gluten in beer.
[It is virtually unanimous among US and Canadian experts and celiac
organizations that beer would NOT be safe for celiacs-ed.]
The last controversial statement was that "trace amounts of gliadin in
a GF diet have no immunological impact". In private conversations
with the Tri-County contingent Dr. Ernst defended this conclusion by
noting that there is no data supporting an immune system response from
trace amounts of gluten. Therefore, one should not be concerned with
something that does not produce injury. [Many US and Canadian experts
and most celiac organizations espouse a zero-tolerance policy toward
gluten intake.--ed.]
Dr. Ernst closed his talk by listing some areas for investigation
over the next 25 years:
immunogenetics of disease
factors leading to varying presentations
develop grains deficient in prolamines
vaccine development
relationship to autoimmune diseases
determine how much dietary gluten is safe
evaluate prevalence in North America
In the next 25 years Dr. Ernst expects that:
1. The genetic information on CD will become available.
2. Knowledge of how CD triggers work will become known.
3. An answer will be found to whether the whole protein is a
problem or just certain peptides in the proteins.
4. A vaccine to turn off the immune system response will be
developed.
5. The minimal, or zero, amount of gluten that is acceptable will
be determined.
6. The actual prevalence of CD in North America will be defined by
research.
During the Q&A session at the end of his talk, Dr. Ernst said that
digestive diseases piggyback on prolamin studies. A restructuring of
how diseases are funded is needed. Perhaps money will come from
pharmacy research.
Return to the Table of Contents
Living Well Without Gluten, Bette Hagman
--------------------------
Bette Hagman is the well-known author of the "Gluten-Free Gourmet"
cookbook trilogy.
Bette could be said to "walk the talk", or at least drive it: Her
license plates carry the message "Living Well Without Wheat". She
noted that the Canadian Celiac Association is 25 years old and
growing. Together, we're better for life.
Bette mentioned a new cookbook for consideration. It is "Gluten-Free
Recipes for Celiac Diets" by Cecile Moses and Joyce Grahlman, 1998.
She also mentioned that her next book will contain seven stories about
individuals and their diagnosis. (As an aside, she noted that she
"flipped" when she heard of the one doctor from England who didn't
want to diagnose celiac because "it's so restrictive".) The book
includes recipes with flax.
The Gluten Intolerance Group of North America (GIG) was started 24
years ago in Seattle by a dietitian who wanted material for a thesis
(35-40 people). 10 years ago Elaine Hartsook introduced xanthan gum
and yeast into GF baking.
Bette also mentioned Kay Ernst as a pioneer in Canada; Pat Garst as
founder of Midwestern Celiac Sprue, now CSA/USA, and Elaine Monarch,
Celiac Disease Foundation of America.
She talked about carrying a celiac recognition card at all times and
thought that GIG's was the best one available. She would like to see
all celiacs carrying the same card and to have it say, "I am a Celiac"
on one side.
The powdered soup base mentioned in her second book is best utilized
by mixing 4 tablespoons of it in 1/4 cup of COLD water before adding
the remaining hot water.
She said that Nature Made B Complex Vitamins and Nature Made Calcium
might be good for everyone noting that a bone density test of 120
celiacs showed that every woman was below normal while every man was
either close to normal or only a little low.
Return to the Table of Contents
Looking Back Over 25 Years of Nutrition, Mavis Malloy, RDN
---------------------------------------
Mavis Malloy is a member of the Professional Advisory Board of CCA.
Ms. Malloy noted that gluten-free (GF) for a celiac does not refer to
all glutens; it refers to the glutens found in wheat, rye, barley, and
oats. Ms. Malloy specifically stated that oats are still excluded
from the celiac diet, in spite of recent studies suggesting that oats
may be safe.
Ms. Malloy noted that while the GF diet is simple in theory, it is
not in practice. Or as Hippocrates said, "Thy food shall be thy
medicine."
Prior to 1970 in Canada, the treatment for CD was the exclusion of
wheat, rye, barley and oats from the diet. Diagnosis was by small
bowel biopsy. Treatment was a life-long GF diet, although wheat
starch was allowed.
In 1974 a Canadian bread was developed that was wheat starch-based.
It was considered GF, though now we would probably call it
gluten-reduced (GR).
In the mid-70's the GF diet was accepted as the treatment for DH.
In the 80's the Canadian GF diet included:
meat, fish, poultry
vegetable and fruit
milk & milk products
rice & corn based breads and baked goods
some wheat starch products
buckwheat, millet, sorghum, quinoa, amaranth, and cassava
In 1981, the year the national Canadian Celiac Association (CCA) was
legally formed, the Codex Alimentarius Commission defined a GF product
as one that could contain up to 100 mg. prolamins per 100 grams of
dry matter. This is why wheat starch-based products were considered
to be GF, as a Canadian study of wheat starch at the time showed only
28mg./100 grams. However, practitioners were already questioning how
much gluten is too much and were moving towards being GF.
In 1981, wheat starch, oats, malt flavoring, distilled alcohol, and
MSG were all allowed on the celiac diet; but not millet and sorghum.
In 1982, Kingsmill and Ener-G developed rice based breads. High fiber
corn bran and corn grain products became available.
The CCA set up a food bank of GF foods for CD/DH patients in 1983.
The first Canadian National Handbook for celiacs was published the
following year. However, as late as 1986, cookbooks still included
wheat starch in recipes labeled as GF. Meanwhile, the evidence
against wheat starch began to mount:
* '84 Ciclitira, et al, (UK) showed that all 4 sub-fractions of
gliadin were toxic.
* '85 Ciclitira, et al, proved that wheat starch based GF products
can cause clinical symptoms.
* '85 Patel, et al, recognized the danger of gluten in
pharmaceuticals for CD/DH patients.
It was not until 1988 that the Codex Alimentarius Commission redefined
GF to mean no more than 1 mg prolamin/100 g dry matter, which
effectively eliminated wheat starch.
In 1989 the CCA conducted a survey of its membership and found:
1. Compliance to the GF diet was a problem.
2. Local groups and dietitians were the best source of information.
3. Symptoms similar to gluten were reported for some GF foods.
4. The GF diet was costly.
5. Eating out and travel were the most difficult parts of the GF
diet.
Ms. Malloy noted that Italy, like Canada, is now aiming for zero
gluten in the diet.
A GF diet for DH allows either a lower dose or discontinuation of the
toxic drugs used to control symptoms, and a resolution of the
associated enteropathy. Resolution of the rash can take months or
even years.
In the 90's the Canadian GF diet includes:
meat, fish, poultry
vegetable and fruit
milk & milk products
rice & corn based breads and baked goods
no wheat starch products
buckwheat, millet, sorghum, quinoa, amaranth, cassava, teff, and
flax
distilled alcohol, distilled vinegar, malt vinegar, and yeast
(including brewer's yeast)
no spice and seasoning mixtures
no oats
no pharmaceuticals containing grain fillers
Ms. Malloy noted that a small percentage of celiacs may be sensitive
to alcohol.
For maintaining and maximizing the GF diet, she recommends:
1. Be knowledgeable.
2. Educate others.
3. Be able to say, "NO".
4. Be motivated.
5. Be positive.
6. Reward yourself occasionally for sticking to the diet.
Return to the Table of Contents
Labeling of Foods, Marion Zarkadas
-----------------
Marion Zarkadas is a Policy and Legislation Officer for the Canadian
Food Inspection Agency.
Ms. Zarkadas discussed Canadian food labeling regulations and the
current efforts for change. With the formation of the Canadian Food
Inspection Agency in April 1997 from the amalgamation of several
government activities and organizations, the Canadian food industry is
now viewed by the agency as being composed of four distinct segments:
the CFIA, the food industry itself, Health Canada, and consumers.
The agency is responsible for providing science-based information to
the food industry, inspecting and monitoring food labeling and
manufacturing practices, and recalling foods as required.
The industry is responsible for developing an allergy awareness plan
and ensuring that foods are safe and accurately labeled.
Health Canada is responsible for setting health and safety standards,
providing risk assessments, and developing regulations.
Consumers are responsible for reading food labels carefully and
avoiding questionable foods.
The only major change to the Canadian Food Labeling regulations since
their initiation in 1976 was the added regulation in 1996 regarding
gluten-free (GF) foods. The added regulation reads as follows: "No
person shall label, package, sell, or advertise a food in a manner
likely to create an impression that it is a gluten-free food unless
the food does not contain wheat, including spelt and kamut, or oats,
barley, rye or triticale or any part thereof." However, gluten
sources are not declared:
1. ...where there is a component exemption such as an ingredient of
an ingredient. An example would be icing sugar or baking
powder which may contain wheat starch to prevent clumping.
2. ...where they fit in a class name such as seasonings,
flavorings, spices, etc. Sometimes wheat flour is added.
3. ...where there is cross contamination or mistakes such as
mislabeling.
Food labeling in Canada is done at all levels of trade: wholesale,
retail, packaged for hospital use, etc. So an ingredient list can be
found somewhere in the system for almost everything. The following
are specifically exempt:
* Foods packaged from bulk at retail. (Note: The foods as
delivered in bulk, however, should be labeled.)
* Individual food portions served with meals or snacks. (Butters,
jellies, mustards, catsups, etc.)
* Individual foods prepared by a commissary and sold in automatic
vending machines or mobile canteens.
* Meat and poultry barbecued at retail.
* Standardized alcoholic beverages and vinegar. (Note: Ms.
Zarkadas stated that vinegar is not a problem for celiacs except
for possibly malt vinegar. Later, when discussing paprika, she
again declared that white vinegar is no problem.)
Two other categories of foods that may be a problem for celiacs are:
* Prepared meat, fish, poultry, or their by-products if they are
present at less than 10% in the final food, because they may
contain wheat flour or gluten.
* Starches, modified starches, and hydrolyzed plant protein because
they may not identify the plant source. For example: wheat
starch, corn starch, or hydrolyzed wheat protein.
Several activities are occurring which could significantly assist
celiacs. On the international level, the Codex Alimentarius is in the
final stages of adoption of the inclusion of a declaration of all
gluten sources on ingredient labels.
Canada has recently sent a letter (not a regulation) to members of the
food industry urging them to always declare in the ingredient list
when the following foods are present as ingredients OR COMPONENTS:
peanuts
tree nuts (almonds, Brazil nuts, cashews, hazelnuts (filberts),
macadamia nuts, pecans, pinenuts, pistachios, walnuts)
sesame seeds
milk
eggs
fish, crustaceans (e.g. crab, crayfish, lobster, shrimp) and
shellfish (e.g. clams, mussels, oysters, scallops)
soy
WHEAT
sulphites
In addition, Canada has also urged the food industry to include the
plant source in the common name of all forms of hydrolyzed plant
protein, starches, modified starches, and lecithin (e.g. hydrolyzed
WHEAT protein, modified WHEAT starch, soy lecithin).
Return to the Table of Contents
Dermatitis Herpetiformis, Dr. Kim Alexander Papp
------------------------
Dr. Papp is a consultant at St. Mary's, Grand River, and Listowel
Memorial Hospitals. He is also President of Probity Medical Research
Inc.
The first mention of Dermatitis Herpetiformis (DH) in the literature
was in 1884 in Dhring. The connection to wheat was made in Dreke,
Holland in 1941. It is an uncommon, but not rare, disease that
affects males twice as often as females. It is found in 10% of first
degree relatives. There is a genetic association; 90% of DH patients
have HLA-B8 vs. only 15% of the general population. HLA-DRw4 and
HLA-DQw2 are also associated with some DH patients.
DH normally is found on elbows, knees, shoulders, buttocks, sacrum,
posterior scalp, and face. While it is unusual, it can also show up
on the hands or inside the mouth. It presents as clear blisters that
itch very badly. [One patient described the itch "...like rolling in
poison ivy naked with a severe sunburn, then wrapping yourself in a
wool blanket filled with ants and fleas."<1>-ed]
The original diagnosis of DH was done by giving Dapsone, a leprosy
drug, and noting any improvement. Today, the "gold standard" for
diagnosing DH is a skin biopsy with immunofluorescence. (A plain skin
biopsy is not sufficient.) Most DH patients also have villi damage in
the small intestine and lymphocyte infiltration of the intestinal
wall, and IgA/IgG antigliadin antibodies in the bloodstream. However,
there is really no need to perform a small bowel biopsy or test for
blood serum antibodies; the skin biopsy with immunofluorescence
provides a definitive diagnosis.
Dr. Papp indicated that about half of his patients are diagnosed
after having their symptoms recognized and pointed out to them by
other DH patients.
DH is not an allergic reaction; a different mechanism is involved. It
is caused by antibodies to the gluten found in wheat, rye, and barley.
The causes of DH flares include large quantities of iodides (some
iodine is needed in the diet), kelp, shellfish, non-steroidal
anti-inflammatory agents (such as aspirin), gluten, stress, and some
cleansers.
What else looks like DH?
* DH can be misdiagnosed as psoriasis, or the patient may have both
conditions.
* Linear IgA disease--the immunofluorescence pattern is different,
but it looks and feels the same as DH to the patient.
* Allergic contact reactions.
DH is treated by adherence to a gluten-free (GF) diet. The skin
lesions can be treated with either a sulfone (Dapsone) or sulfonamide
(Sulfapyradine) drug. In about 85% of the cases, at least a year on a
strict GF diet is needed before DH is resolved. In rare cases DH
lesions clear up after only a few weeks on the GF diet.
Dapsone can have side effects, though these are not common. It can
alter blood chemistry, causing anemia. Those of Mediterranean or
African ancestry can have sudden red blood cell count drops [known as
G6PD Deficiency--Dr. Alexander]. Other complications include
tingling fingers and neurological problems.
Ideally, if the patient is on medication there would be monthly lab
tests to monitor the dosage and effect on the patient. This almost
never happens.
The GF diet takes a long time to bring DH under control because it
requires time to clear the IgA and IgG from the blood. So even if one
is on a GF diet and/or taking Dapsone, technically one has DH. Like
an alcoholic, one always has the disease.
Dr. Papp concluded his presentation by answering a few questions from
the audience.
Q: How soon after ingesting gluten or iodine will a flare occur?
A: It varies tremendously. With iodine, it usually takes several
days of consumption before a flare occurs.
Q: What effect does stress have on a DH patient?
A: It intensifies any symptoms the patient is experiencing.
Q: What effect does iodine on the skin have?
A: It really has no effect; it doesn't penetrate enough. Iodine must
be consumed to cause a DH flare.
Q: After several years on a GF diet with no flares, is iodine still a
problem?
A: No.
Return to the Table of Contents
Blood Screening and Celiac Disease, Dr. James Gregor
----------------------------------
Dr. Gregor is from the Department of Medicine & Epidemiology &
Biostatistics at the University of Western Ontario.
The prevalence of celiac disease (CD) overall is probably 1:1000, but
may be as high as 1:200 in some countries. (Prevalence refers to the
proportion of patients in any given population at a particular time
who have a condition.) CD is more common in Caucasians of European
descent.
Small studies have suggested a genetic association of CD with certain
immune markers and chromosomal abnormalities. This genetic link means
that first-degree relatives (siblings, children, parents) of a celiac
have a 4-8% chance of also developing CD.
CD is linked to various "autoimmune" diseases such as thyroiditis and
juvenile [Type I] diabetes, with prevalences up to 4%. Other
associated conditions include dermatitis herpetiformis (DH), IgA
deficiency, and lymphocytic colitis.
Dr. Gregor noted that one can find celiac disease (CD) by either an
empirical trial of the gluten-free (GF) diet, serologic testing, or a
small bowel biopsy. The trial, while not dangerous, does delay
diagnosis, is often not correct, and is difficult to use to rule out
CD. A trial also affects the quality of life and is expensive.
On the other hand, while a biopsy is the gold standard, it is
relatively expensive. And while a biopsy of a CD patient will show
villous atrophy, it is a differential diagnosis. There are other
diseases that also demonstrate villous atrophy such as tropical sprue,
lymphoma, Zollinger-Ellison syndrome, Whipples disease, eosinophilic
gastroenteritis, viral gastroenteritis and bacterial overgrowth.
Serological testing seeks to determine an immune-mediated antibody
response. Generally a test is considered to be good for screening
when both sensitivity and specificity are 90% or better. (Sensitivity
is a measure of the true positive results while specificity is a
measure of the true negative results.)
The antigliadin antibody (AGA) test looks at the interaction between
the immune system and the alcohol-soluble fraction of gluten. It is a
reasonably sensitive test but it tends to be positive with any sort of
gut inflammation so it is better at ruling out CD rather than
confirming it.
The antiendomysial antibody (EMA) test looks at IgA antibody reaction
against either monkey esophagus tissue or human umbilical cord tissue.
(The results are comparable for either tissue. For ethical and cost
reasons human umbilical cord is becoming the tissue of choice for this
test.) A qualitative immunofluorescent technique is used for this
test, which makes it highly-dependent on the skill of the operator.
Dr. Gregor's recommendations are to use the AGA and EMA tests for
screening and use a biopsy as confirmation.
Dr. Gregor then answered some questions:
Q: hould a celiac be biopsied every year?
A: No. A single follow up biopsy may be warranted, but not every
year.
Q: If you present with small bowel lymphoma or carcinoma, should
you be tested for CD?
A: Yes. In such cases about 1 in 4 are celiacs.
Q: Can the blood test be done on very young children?
A: Antiendomysial testing of a young child would not be reliable
until after the maternal antibodies were out of the child's
system. This can take 6-12 months or longer.
Return to the Table of Contents
Gift of Wings, Carl Hiebert
-------------
Carl Hiebert was listed as the "Inspirational Speaker" for the
conference, an apt moniker. Carl is a paraplegic who has done a solo
flight across Canada in an ultralight plane--twice. He's logged 2,500
hours since the injury which left him paralyzed from the waist down.
Carl showed a slide presentation entitled "Gift of Wings". Those
slides form the basis for his book of the same name. It detailed
through aerial photography his 3000 mile flight across Canada.
Life is difficult. Accept that the "lows" are not exceptions, they
are the norm. Don't get caught up in self-pity. View situations not
as problems, but as creative opportunities, a chance to make a
positive outcome.
In September 1981 Carl was teaching hang-gliding. A gust of wind
caught him on take off, causing him to crash. In those next few
seconds, he immediately realized he was paralyzed and his first
thought was that he didn't want to live. However, only seconds later
he decided his attitude and perception were what mattered, not the
injury.
In 1986 Carl flew from Halifax to Vancouver. He later flew across
Canada a second time. The total trip took 58 days and covered 5000
miles. His book "Gift of Wings" came from that second flight, and is
currently in its third printing. Carl used his flight as a
fund-raiser for research to find ways to heal new spinal cord
injuries.
Carl advises us to break all large tasks down into small, manageable
pieces. Do you focus on your limitations, or your opportunities? He
quoted Henry Ford: "Whether you think you can or you can't, you're
probably right."
Carl's sense of humor was evident all throughout his talk. For
example, he said, "It is better to have a bottle in front of me, than
a frontal lobotomy."
[It is easy for celiacs to get caught up in denial, anger, and
frustration over the gluten-free (GF) diet. There is no denying that
following a GF diet is not easy, especially for the newly-diagnosed
celiac. But listening to someone with a far worse problem who exudes
happiness, confidence, and a sense of humor, served as a good reality
check.--ed.]
Return to the Table of Contents
Panel Discussion
----------------
The conference concluded with many of the conference speakers sitting
on a panel, answering questions. In this section we'll share some of
those questions and answers with you. No attempt is made to identify
which speaker(s) provided the answers.
Q: Why do so many GF recipes call for GF vinegar or GF vanilla?
A: This is partly due to a belief by many celiacs, particularly in
the USA, that distilled alcohol/vinegar contains gluten.
Q: Can a celiac safely receive blood transfusions from non-celiacs?
A: This is probably not a concern; hepatitis is more of a risk (and
even that risk is very small).
Q: Why can't celiacs be blood donors?
A: It is general policy in Canada not to accept blood from donors
with autoimmune disease. Also, due to leaky gut (even in
recovered celiacs), you may have bacteria in the blood which
you've adjusted to but which may cause problems to the recipient
of your blood.
Q: What is the relationship between cystic fibrosis and CD?
A: These are different diseases. Historically there has appeared to
be a connection, because they were lumped together due to
symptoms. There may be a small correlation, but the extent is
unknown. They are separate diseases, easily discernable when
diagnosed.
Q: When should you take calcium supplements?
A: Calcium absorption is more effective when supplements are taken
with a meal, as the food slows the progression through the
digestive tract allowing more to be absorbed. The intestine can
only absorb about 500 mg. at a time, so you need to split up your
intake of supplement if you need more than this amount. (For
example, post-menopausal women may need 1200-1500 mg., which would
be taken in three doses of 400-500 mg each, over the course of a
day.)
Return to the Table of Contents
References
----------
<1> "Summary/How itchy is DH?", summarized by Jenise M. Sidebotham,
from the CELIAC Listserv archives on the Internet, posted November
4, 1997. To obtain a copy, go to
http://maelstrom.stjohns.edu/archives/celiac.html and click on
"November 1997, week 1."
Return to the Table of Contents
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Pediatric Advisor: Robert Truding, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Mary Guerriero
Vice President: Sue Gentilia
Past President: Diane Morof
Finance Committee: Tom Sullivan
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.
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