Expert Postings
April 1996

Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1996 - All rights reserved worldwide.
Disclaimer

Table of Contents

 
This file contains postings made by the following professionals: 
 
Richard Abrams, Ph.D.--a retired professor of biochemistry at the 
   University of Pittsburgh. 
 
Karoly Horvath, M.D.--an associate professor of pediatrics at the 
   University of Maryland at Baltimore.  Dr. Horvath set up the 
   Pediatric Gastrointestinal and Nutrition Laboratory, and is now 
   director of this lab. 
 
Donald D. Kasarda, Ph.D.--a research chemist with the United States 
   Department of Agriculture.  Dr. Kasarda has worked on grain proteins 
   in relation to grain quality for 30 years.  He has colloborated with 
   medical groups working on celiac disease for about 25 years and has 
   often been used as an informal consultant by support groups. 
 
Vijay Kumar, M.D.--president of IMMCO Diagnostics, one of the labs that 
   performs celiac antibody blood tests. 
 
Joseph Murray, M.D.--a gastroenterologist at the University of Iowa, 
   USA, where they have a mutidisciplinary service for the clinical care 
   of people with celiac disease.  They are also involved with clinical 
   research and medical education related to celiac disease. 
 
Kalle Reichelt, M.D.--Senior researcher at the Department of Pediatric 
   Research, University of Oslo, Norway.  Dr. Reichelt is looking into 
   the impact of gluten intolerance on certain individuals with 
   developmental delays. 
 
Paul Shattock--a pharmacist and founding chairman of "Communities for 
   Autistic People", a charity which owns and operates four group homes 
   and a college and various support services for young adults with 
   autism. 
 
Phil Sheard, Ph.D.--researcher in the Developmental Biology Unit, 
   Department of Physiology, University of Otago Medical School, in 
   Dunedin, New Zealand. 
 
((Disclaimer: Verify this information before applying it to your situation.)) 
 
========================================================================= 
Date:         Tue, 9 Apr 1996 23:47:46 -0400 
From:         Jim Lyles (lyles@SUN.TIR.COM) 
Subject:      How much gluten in wheat? starch? 
 
The Listowners are in the process (which may take months) of making 
revisions to the FAQ, and from time to time we will post additions which 
we feel would be of immediate interest to the listmembers.  The 
following material was done in cooperation with Don Kasarda (thanks, 
Don!) 
 
 
Q.  How can I determine the amount of gluten from the weight of the 
wheat in food? 
 
A.  For 100 units of whole grain wheat, about 70 units of white flour 
results from the milling process.  The rest is separately sold as wheat 
bran or wheat germ.  Those 70 units of flour are about 10%- 15% protein, 
thus about 7 to 10 units of protein for 100 units of whole wheat.  The 
protein is about 80% gluten, thus about 6 to 8 units of gluten for 100 
units of whole wheat.  Since one typically sees wheat flour as an 
ingredient, appying the 70% factor implies 8 to 12 units of gluten per 
100 units of wheat flour. 
 
 
Q.  Sometimes I see references to the amount of prolamin or gliadin 
instead of gluten. 
 
A. To cereal scientists, gluten is the same as prolamin, but in some 
older terminology only the gliadin fraction is termed prolamin.  Gliadin 
makes up about half of the gluten.  The other half is often called 
glutenin, but it is very similar to the gliadin half in composition and 
structure and I suspect that it is toxic to a large extent.  It would be 
simplest to say that gluten equals gliadin equals prolamin as far as 
toxicity is concerned. 
 
 
Q.  How is wheat starch made?  Why is some starch said to be more toxic 
than others? 
 
A.  Most of the wheat grain and of white flour is made up of starch 
granules.  Starch granules make up about 75% of grain or of white flour. 
In the processes used to make wheat starch, a small amount of the gluten 
protein (actually mostly the gliadin fraction, but not entirely), sticks 
to the surface of the starch granules.  The amount depends on the 
washing method, how many times the granules are washed, and factors like 
that.  Wheat starch can be made very low in surface protein and it is 
only the surface protein that is of concern (there are some internal 
granule proteins, but we are pretty sure that they are not gluten 
proteins). 
 
 
Q.  How much gluten is in wheat germ and wheat bran? 
 
A.  I don't know how much gluten they contain, but my feeling is that it 
is likely to be more than you would find in wheat starch and so best 
avoided by celiac patients. 
========================================================================= 
Date:         Wed, 10 Apr 1996 14:44:01 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      methylcellulose 
 
Comment from Don Kasarda, Albany, CA, on use of xanthan gum and guar gum. 
 
I think people who are having problems with the above gluten replacements 
might find methylcellulose to be a good substitute.  A  rice bread formula 
for celiac patients based on methyl cellulose as gluten substitute was 
developed by Maura Bean of this lab many years ago and the formula seemed to 
work well.  I think EnerG Foods sells the methyl cellulose. It should be a 
more pure, less complex substance than the natural gums.  Consequently, I 
think it might be less likely to cause allergic reactions or other harmful 
effects, although I don't personally have any experience with it. 
========================================================================= 
Date:         Thu, 11 Apr 1996 12:29:04 -0400 
From:         Kevin Lawson (IMMTEST@AOL.COM) 
Subject:      Re: Increased IgG: non-Celiac cause? 
 
It appears from your message that the daughter of the member of your society 
has been tested for antibodies to gliadin.  It is a known fact that 
anti-gliadin antibody tests, especially of IgG type, are not very disease 
specific.  It may be that the results obtained on the girl are false 
positive. 
 
It would be advisable that she be tested for endomysial and reticulin 
antibodies.  These antibodies are highly specific for CD when on a normal 
diet.  If any of these tests turn out positive then you can bet that she has 
been taking has some gluten in her diet.  If you have any questions, you can 
write or call: 
 
IMMCO Diagnostics 
963 Kenmore Avenue 
Buffalo, NY  14223 
800-537-TEST 
 
Vijay Kumar 
Research Associate Professor 
========================================================================= 
Date:         Thu, 11 Apr 1996 12:29:00 -0400 
From:         Kevin Lawson (IMMTEST@AOL.COM) 
Subject:      Re: Skin Biopsies vs. Small Bowel Biopsies 
 
You are absolutely right that skin biopsy studies are useful and indicated 
only when DH is in the differential diagnosis.  Only 2-3% of patients who 
initially present with CD go on to develop skin lesions consistent with DH. 
 
As to the question of the tests for diagnosing CD, you are also right in 
assuming that biopsy is the gold standard.  However, I must say that serum 
tests, especially for endomysial antibodies, are very specific for CD. 
 
Vijay Kumar 
Research Associate Professor 
immtest@aol.com 
========================================================================= 
Date:         Thu, 11 Apr 1996 19:14:28 -0400 
From:         Bill Elkus (Bill_Elkus@JEFCO.COM) 
Subject:      Biopsies and Blood Tests (Part 1 of 3) 
 
The Listowners are in the process (which may take months) of making 
revisions to the FAQ, and from time to time we will post additions which 
we feel would be of immediate interest to the listmembers.  The 
following material on biopsies and blood tests is especially critical to 
every celiac and his/her family.  Therefore, even though it is long, we 
are posting the information in full.  We are splitting this post into 
3 segments to make it easier to download on certain mail systems. 
 
This file was prepared in cooperation with Vijay Kumar, M.D., Research 
Associate Professor at the University of Buffalo and President and 
Director of IMMCO Diagnostics, and Karoly Horvath, M.D., Ph.D., 
Associate Professor of Pediatrics; Director, Peds GI & Nutrition 
Laboratory; University of Maryland at Baltimore.  Both run laboratories 
which provide services in the areas of autoimmunity, including tests for 
celiac disease.  Thanks to both! 
 
Bill Elkus, for the CELIAC listowners 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  How long must gluten be taken for the serological tests to be 
meaningful? 
 
K (Dr. Kumar).  There is no simple answer to this question as the 
susceptibility of the patient to developing CD is dependent upon several 
factors.  One factor is the amount of gluten intake.  Another is the 
genetic makeup of the individual.  However, we feel that several weeks 
of gluten intake, especially in doses of 2 gm gluten/day, should result 
in positive serology in patients with CD. 
 
H (Dr. Horvath).  The result of serological tests depends on the diet. 
Generally, three to six months of a gluten-free diet may result in 
normal antibody levels in a new patient.  A strict gluten-free diet for 
more than three months may result in inconclusive serological tests in 
patients, who have started a diet without any diagnostic test.  In this 
case a gluten challenge should be introduced for a proper diagnosis. 
 
Each patient has different sensitivity to gluten for reasons that are 
unclear.  The period of gluten challenge and the amount of gluten 
necessary to provoke serological immune response are individually 
different. 
 
A 0.3 g/kg body weight/day of single gluten challenge causes 
immunological changes (cellular immunity) in the intestine (J Pediatr 
Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, 
however, the serological response is much slower. 
 
Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two 
months prior to the serological tests.  However, if somebody experiences 
symptoms during the gluten challenge we recommend to perform serological 
tests earlier. 
 
The protein content of wheat flour is between 7-15% and approximately 
90% of the protein content is gluten.  That means a slice of bread may 
have 2-3 g of gluten. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  What is the probability of false positive and false negative results 
from the serological tests? 
 
K.  The three serological tests that are used for diagnosing CD are: 
 
     Anti-endomysial antibody (EMA) 
     Anti-reticulin antibody (ARA) 
     Anti-gliadin antibody (AGA) 
 
Each of these three tests provide a certain degree of reliability for 
diagnosing CD.  Of these, endomysial antibody is the most specific 
test.  The following table is taken from our studies (Lerner, Kumar, 
Iancu, Immunological diagnosis of childhood coeliac disease: 
comparison between antigliadin, antireticulin and antiendomysial 
antibodies). [Editor's note: view this in a monospaced font, such as 
Courier, to get the numbers and titles to line up] 
 
     % Sensitivity     % Specificity     Predictive Value 
                                         % Pos.     % Neg. 
EMA        97                98            97         98 
ARA        65               100           100         72 
AGA 
  IgG      88                92            88         92 
  IgA      52                94            87         74 
 
The following definitions related to sensitivity, specificity, positive 
and negative predictive values may help. 
 
Sensitivity is the probability of a positive test result in a patient 
with disease. 
 
Specificity is the probability of negative test result in a patient 
without disease. 
 
Positive predictive value is the probability of disease in a patient 
with positive test result. 
 
Negative predictive value is the probability of no disease in a patient 
with negative test result. 
 
 
H.  The summary below shows the results of the main serological tests 
based on several publications including 388 patients with CD, and 771 
healthy subjects. 
 
SENSITIVITY- the proportion of subjects with the disease who have a 
positive test.  It indicates how good a test is at identifying the 
diseased. 
   IgA AGA:   average: 78%     range: 46-100% 
   IgG AGA:   average: 79%     range: 57-94% 
   IgA EMA:   average: 97%     range: 89-100% 
 
SPECIFICITY- the proportion of subjects without the disease who have a 
negative test.  It indicates how good a test is at identifying the 
nondiseased. 
   IgA AGA:   average: 92%     range: 84-100% 
   IgG AGA:   average: 84%     range: 52-98% 
   IgA EMA:   average: 98.5%   range: 97-100% 
 
POSITIVE PREDICTIVE VALUE- the probability that a person with positive 
results actually has the disease. 
   IgA AGA:   average: 72%     range: 45-100% 
   IgG AGA:   average: 57%     range: 42-76% 
   IgA EMA:   average: 92%     range: 91-94% 
 
NEGATIVE PREDICTIVE VALUE- the probability that a person with negative 
results does not have the disease. 
   IgA AGA:   average: 94%     range: 89-100% 
   IgG AGA:   average: 94%     range: 83-99% 
   IgA EMA:   average: 100%    range: 100% 
 
REFERENCES: 
 
McMillan SA, Haughton DJ, Biggart JD, Edgar JD, Porter KG, McNeill TA. 
Predictive value for coeliac disease of antibodies to gliadin, 
endomysium, and jejunum in patients attending for jejunal biopsy.  Brit 
Med J 1991;303:1163-1165 
 
Ferreira M, Lloyd Davies S, Butler M, Scott D, Clark M, Kumar P. 
Endomysial antibody:  is it the best screening test for coeliac disease? 
Gut 1992;33:1633-1637. 
 
Khoshoo V, Bhan MK, Puri S, Jain R, Jayashree S, Bhatnagar S, Kumar R, 
Stintzing G.  Serum antigliadin antibody profile in childhood protracted 
diarrhea due to coeliac disease and other causes in a developing 
country.  Scand J Gastroenterol 1989;24:1212-1216. 
 
Chan KN, Phillips AD, Mirakian R, Walker-Smith JA.  Endomysial antibody 
screening in children.  J Pediatr Gastroenterol Nutr 1994;18:316-320. 
 
Bode S, Weile B, Krasilnikoff PA, Gdmand-Hyer E.  The diagnostic value 
of the gliadin antibody testing celiac disease in children:  a 
prospective study.  J Pediatr Gastroenterol Nutr 1993;17:260-264. 
 
Calabuig M, Torregosa R, Polo P, Tom s C, Alvarez V, Garcia-Vila A, 
Brines J, Vilar P, Farr C, Varea V.  Serological markers and celiac 
disease:  a new diagnostic approach ?  J Pediatr Gastroenterol Nutr 
1990;10:435-442. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
========================================================================= 
Date:         Thu, 11 Apr 1996 19:25:17 -0400 
From:         Bill Elkus (Bill_Elkus@JEFCO.COM) 
Subject:      Biopsies and Blood Tests (Part 2 of 3) 
 
Q.  Should I just test endomysial antibodies or also do 
gliadin/reticulin? 
 
H.  Serological tests are performed at the time of diagnosis of celiac 
disease and they are repeated later to estimate the efficacy of the 
gluten-free diet. 
 
It is recommended to perform a full serological test-panel in patients 
with suspected celiac disease.  These tests measure antibodies belonging 
to both the IgA and IgG classes of immunoglobulins.  The incidence of 
selective IgA deficiency is much higher in celiac patients than in the 
general population.  In patients with selective IgA deficiency only the 
IgG antigliadin antibody may be present, however, this antibody is less 
specific.  It means that the IgG-type antigliadin antibody may be 
present in otherwise normal individuals. 
 
If somebody had a positive endomysial antibody test at the time of 
diagnosis he/she may choose to use only this antibody test to monitor 
the effect of the diet.  There are individual differences in the 
disappearance of serum antibodies. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  Is it important to use experienced laboratories for reliable test 
results? 
 
K.  Absolutely yes.  For the test to provide meaningful results, it must 
be validated using a large number of clinical documented subjects.  In 
addition, the two tests, endomysial and reticulin are immunofluorescent 
tests where the readings are subjective.  Experienced laboratory 
personnel are needed to read such tests. 
 
H.  There are several advantages to use a laboratory experienced with 
the celiac serological tests: 
 
   -technically, the test are more reliable, and the internal and 
external control of tests are better established than in laboratories 
where the CD serology panel is only one of the routine tests 
 
   -more importantly, laboratories specialized in celiac serological 
testing have larger numbers of positive and negative samples to validate 
their tests and they are able to set up more accurately the negative, 
intermediate and pathologic values 
 
   -a laboratory specialized in these tests generally has a clinical 
background, and the physicians with experience in CD may help in the 
interpretation of the results and they are happy to consult with other 
physicians and they can answer the questions of patients. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  How can I convince my doctor to do these tests, and do them at an 
experienced lab? 
 
K.  Convincing the doctor initially depends upon the patient.  However, 
the laboratory to which the test is sent should be available to answer 
questions the doctor may have.  Our laboratory always encourages such 
questions. 
 
H.  Lot of physicians in the USA did not get appropriate training to 
recognize the protean manifestations of celiac disease.  However, if the 
classical symptoms are present--chronic diarrhea, weight loss, 
protuberant abdomen, foul-smelling stools, etc.--it is absolutely 
indicated to test the patients serum for antigliadin and antiendomysium 
antibodies. 
 
Professionals participating in this discussion group are educating 
physicians on an almost daily basis.  Generally, it is useful to supply 
the physician with a review article or a textbook chapter describing the 
values of serological tests and protean manifestations of celiac 
disease.  If that does not help, you can ask the help of professionals 
participating in the Cel-Pro list.  They have helped several patients by 
calling physicians and convincing them about the necessity of 
serological testing. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  How often must a negative test be repeated in suspect individuals? 
This question has two aspects:  for an individual with existing 
symptoms, and for a sibling of a known celiac. 
 
K.  If the test is negative and there is a strong suspicion of CD, it 
must be repeated after several weeks (3-4 weeks), especially after a 
high gluten intake.  We did a study of two cases with DH who were 
serologically negative.  However, a gluten challenge 1g/Kg body wt/day 
resulted in positive serology; the results became normal on a gluten 
free diet. 
 
If you are a relative of a CD patient and are on a regular diet and the 
serology performed by an experienced laboratory is negative then there 
may not be any need for retesting until and unless clinically justified. 
 
H.  There is no rule for it.  If a family member with previous negative 
tests experiences any gastrointestinal symptoms associated with CD, 
he/she should undergo serological testing as soon as possible.  It is 
well known that up to 15% of the family members of a patient with celiac 
disease may have the asymptomatic (latent or silent) form of celiac 
disease, although they have positive serological tests and have the 
pathological changes in the upper part of the small intestine.  It is 
also evident that there are at least three developmental stages of 
mucosal lesions (Marsh MN. Gastroenterology 1992;102:330-354) and celiac 
disease may manifest at each period of life.  That is why we recommend a 
repeat test every 2-3 years in first degree relatives of celiac 
patients. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  Suppose the biopsy or serum tests are inconclusive.  What do you do? 
 
K.  The biopsy may be inconclusive.  Serum, if tested for gliadin, 
endomysial and reticulin antibodies, should provide unequivocal 
information.  Ours and other studies have provided a strong reliability 
of the serum tests. 
 
H.  The biopsy may be inconclusive in a small percentage of patients 
with so-called patchy lesions in the duodenum.  It means that there are 
histologically normal looking spots with finger like villi and 
pathologic spots showing flattened mucosa in the upper half of the 
duodenum.  If CD is suspected, the gastroenterologist should obtain 
several biopsies from different spots of the whole duodenum.  Most of 
the endoscopists routinely examine only the upper half of the duodenum 
(duodenal bulb and the descending part).  The transverse segment of the 
duodenum is not viewed routinely.  Few endoscopic centers have an 
enteroscope, which is a longer and more flexible endoscope for examining 
the entire duodenum and jejunum.  The enteroscopy allows you to obtain 
biopsies even from the jejunum.  The histological examination of a 
single biopsy specimen may increases the risk of false negative 
diagnosis. 
 
The experience of the pathologist in the interpretation of small 
intestinal histology is important.  In centers specializing in celiac 
disease the gastroenterologist routinely reviews the histologic slides 
together with the pathologist. 
 
There is still a possibility of inconclusive results if multiple 
biopsies are obtained and the histological interpretation is 
appropriate.  All disease has a developmental process.  It means that it 
takes time for the pathological changes to be evident.  There are cases 
when the symptoms suggest CD, however, the histology is not conclusive. 
This problem occurs in only a few cases.  A repeated biopsy may be 
necessary after a period of higher gluten intake.  However, if the 
antiendomysium antibody test is positive and the histology is not 
conclusive a gluten-free diet is recommended. 
 
 The serology test may be inconclusive if: 
 
   -the sample handling and shipping is inappropriate; e.g. the serum 
was shipped at room temperature for days 
 
   -the patient has IgA deficiency, which occurs in one out of 600 
people in the general population and much more frequently in patients 
with CD.  In these cases the antigliadin IgA and the antiendomysium IgA 
tests give negative results.  If the tests are performed in a laboratory 
specialized in celiac serological tests, the laboratory recommends a 
test for immunoglobulins.  If a patient has IgA deficiency and positive 
antigliadin IgG test, he/she should undergo further absorptive tests 
and/or an intestinal biopsy. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
========================================================================= 
Date:         Thu, 11 Apr 1996 19:20:19 -0400 
From:         Bill Elkus (Bill_Elkus@JEFCO.COM) 
Subject:      Biopsies and Blood Tests (Part 3 of 3) 
 
Q.  One case I know of had elevated gliadins (both types) but normal EMA 
and ARA, plus an inconclusive biopsy.  Do you see this often? 
 
K.  If the tests are performed using well standardized tests with known 
positive and negative predictive values then you can make the statement 
that if the serological tests are negative CD can virtually be ruled 
out.  The problem is that some of these assays, especially the gliadin, 
can give you false positive results.  In our laboratory we rarely see 
positive AGA results in the absence of EMA and ARA antibodies. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  Are there any unique factors to be considered for children?  I've 
heard that the serology has a lower predictive value for children under 
age two, since IgA may be depressed, or with anyone who has a condition 
which depresses IgA. 
 
K.  Not really.  It is not true that the serological methods have lower 
predictive value in children less than two years of age.  In all the 
studies that we did, there was 100% correlation of the EMA to the 
disease activity irrespective of the age. 
 
H.  There are age dependent changes in several blood parameters during 
childhood.  It is well known that immunoglobulin levels depend on the 
age of children.  E.g. the IgA class immunoglobulins reach the adult 
level only by 16 years of age, and the blood level of IgA 
immunoglobulins is only 1/5th of adult value below two years of age.  A 
large study from Europe (Brgin-Wollf et al. Arch Dis Child 
1991;66:941-947) showed that the endomysium antibody test is less 
specific and sensitive in children below two years of age.  They found 
that the sensitivity of the EmA test decreased from 98% to 88% in 
children younger than 2 years of age.  It means that 12% of their 
patients with celiac disease, who were younger than two years of age, 
did not have an increase in their endomysium antibody levels. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  How important is it for a confirmed celiac to have repeat biopsies 
or serology when on a gluten free diet? 
 
K.  It is important for the serum tests to be negative in patients with 
CD.  These tests provide strong indicators that the gluten free diet 
followed is effective and is free of gluten.  Sometimes drugs or other 
intakes may be contaminated with gluten that may continue sensitization 
and the disease process which may be subclinically.  We and others 
believe once the diagnosis of CD is confirmed and the patient is on a 
gluten free diet, repeat tests once in 3-6 months may be sufficient. 
 
H.  If a patient has histologically (endoscopy) and serologically 
(antibody tests) proved celiac disease, and his/her symptoms disappeared 
on a gluten-free diet, a repeat biopsy is not necessary.  The 
serological tests are useful tools for estimating the effectiveness of 
the diet after 3-6 months on a gluten-free diet.  The disappearance of 
antibodies from the blood takes months, if there was not any accidental 
gluten challenge (dietary mistake). 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  There are different practices amongst g/i's on repeat biopsies vs. 
serology, and on gluten challenges.  My son's g/i, for example, took the 
position that since my son's symptoms stopped on a GF diet, and his 
previously sky-high EMA and ARA went back to normal, that it was 
unnecessary to do either a repeat biopsy or a gluten challenge.  From 
the celiac list correspondence, I now see that my g/i is rather liberal. 
 
K.  I think your son's GI is doing the right thing.  That is, if the 
EMA, ARA are normal (1:2.5) and he is on a gluten free diet then there 
is no need to perform biopsy studies.  The previous studies relating the 
EMA to biopsy studies tend to confirm this impression. 
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 
 
Q.  Should my child have general anesthesia or conscious sedation prior 
to the biopsy? 
 
H.  The biopsy is a small piece of tissue, such as from the inside 
lining of the intestine, that has been removed to look for diseases. 
The biopsy itself is not painful, because there are no pain-sensitive 
nerves inside the small intestine.  An intestinal biopsy can be done in 
either of two ways depending on the age of the children and the 
tradition of the institution.  Sometimes a blind biopsy procedure is 
performed by a biopsy capsule.  This is thin flexible tube with a 
capsule at the tip, which has a hole and a tiny knife inside the 
capsule.  This capsule is introduced into the intestine under 
fluoroscopy (X-ray) control.  Alternatively, with an endoscopy the 
doctor can see inside the digestive tract without using an x-ray to 
obtain biopsies.  The biopsy specimens are processed and viewed under 
the microscope to identify or exclude celiac disease.  An important 
basic rule is that the biopsy should be performed safely.  For a safe 
procedure children (and adults) should be sedated.  There are two 
methods of sedation:  unconscious (general anesthesia) and conscious 
sedation.  During both kinds of sedation the vital parameters (heart 
rate, blood pressure, oxygen saturation) of patients are continuously 
monitored.  The method of choice depends on the child. 
 
Conscious sedation is performed with two different intravenous 
medications.  One of them is a sedative medication (e.g. Versed), which 
causes amnesia in 80-90% of children, and even older children do not 
recall the procedure.  The second medication is a pain-killer type 
medication (e.g. Fentanyl), which further reduces the discomfort 
associated with the procedure.  In addition, the throat is sprayed with 
a local anesthetic in older children, which makes the throat numb and 
prevents retching at the introduction of the endoscope. 
 
During general anesthesia the anesthesiologist uses sleep-gases (e.g. 
halothan) and intravenous medications and then places a tube into the 
trachea.  Children are completely unconscious.  This is a safer way 
to perform endoscopy, because the patients are fully relaxed and their 
airway is protected.  However, the anesthesia itself has certain 
complications. 
========================================================================= 
Date:         Thu, 11 Apr 1996 17:41:05 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      cigarettes and gluten 
 
Comments on the letter from Charlie in The Big Apple about the possibility 
that cigarettes might incorporate a glue made from gluten. 
 
from:  Don Kasarda, Albany, CA 
 
First, of all, it would be helpful to me to know how Charlie was diagnosed 
as having celiac disease and if the diagnosis was solid.  Secondly, I would 
like to know if it was definitely licking the envelope that caused him 
intestinal distess.  It is possible, I think, for people to make the 
unwarranted jump from, "I licked the envelope" and "I got sick" to "licking 
the envelope made me sick." 
 
If, in fact, Charlie is that sensitive to gluten, however, I will predict 
that either he does not have celiac disease, but rather a Type I immediate 
hypersensitivity to gluten, one probably mediated by IgE antibodies, or that 
he has both the Type I sensitivity and a Type IV delayed hypersensitivity-- 
the latter being considered characteristic of celiac disease and determined 
primarily by a cellular response (involving T cells) rather than an antibody 
response.  There may be a semantic problem or an arbitrary difference in 
classification terminologies, but some immunologists (e.  g., Janeway and 
Travers, Immunobiology 1994) would consider both Type I and Type IV reactions 
as coming under the general heading of "allergy," whereas I have tended to 
consider (possibly incorrectly because I am not an immunologist) that only 
Type I responses are true "allergic" reactions. 
 
I suspect that anyone who reacts with strong symptoms within a couple of 
hours of eating gluten has the Type I response, which may or may not be 
accompanied by their having true celiac disease.  A Type I response could, 
in theory, be caused by proteins found in wheat that are not gluten proteins 
and do not initiate the processes in celiac patients that ultimately damage 
the absorptive surface of the small intestine. 
 
I have discussed this question of IgE antibodies with Vijay Kumar and he has 
offered to try to obtain some test results for IgE antibodies that might 
shed some light on my proposal. 
 
I suspect that Charlie is unlikely to suffer any harm (at least, harm related 
to celiac disease) from smoking a cigarette with a glue containing gluten in 
it unless he is concerned about touching the glue with his mouth--in which 
case, he might try getting himself a cigarette holder.  I would guess that 
any gluten peptides are unlikely to carry through in the cigarette smoke. 
They should be degraded in the burning.  If, in fact, Charlie had a 
gluten-like reaction from cigarette smoke while using a cigarette holder, 
that would be an interesting case--one worthy of description in the 
scientific literature as it would indicate that the gluten peptides can 
survive in truly trace amounts when a cigarette burns as detected by a truly 
hypersensitive individual. 
 
This is my personal opinion and it should not be considered medical advice 
in any legal sense. 
========================================================================= 
Date:         Fri, 12 Apr 1996 14:13:20 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Beer 
 
Information from Don Kasarda, Albany, CA 
 
We have started doing a little research on gluten peptides in beer and find 
it a very difficult area of research.  However, it has caused me to read the 
past literature more carefully, understand it better, and also to 
communicate with other researchers. 
 
One point that might be of interest is that, according to published work in 
which an antibody to a peptide derived from alpha-gliadin was used as a 
probe (Julia Ellis et al. in the UK), a pint of barley-based beer contains 
the equivalent of about 1.5 mg of gliadin.  Another researcher tells me that 
he has found a similar amount in Danish beers brewed from barley, but much 
more (about 30 times more) in wheat-based beers (weissbier). 
 
I think these results seem reasonable. However, it is possible that further 
research may up the amount somewhat, but also might decrease it substantially. 
As I said, the analysis is quite tricky and more work needs to be done to 
substantiate or change the results obtained to date. 
========================================================================= 
Date:         Tue, 23 Apr 1996 10:25:00 CST 
From:         "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) 
Subject:      re biopsies 
 
There is much variation in the findings seen on biopsy of the intestine in 
celiac disease.  There are also many conditions that can mimic the 
pathological finddings of celiac disease.  However in adults in the US other 
causes for complete villous atrophy with inflammation are unusual except in 
well defined and often easily recognised circumstances. 
 
The major area of debate centers in the less that classic biopsy.  often 
times these biopsies may be interpreted as non-specific inflammation and 
celiac disease discounted as a possibility.  However in some cases on review 
and with the benefit of hidsight the biopsies may have had subtle findings 
that would allow a more specific identifaction or at least suspicion for 
celiac disease to be entertained.  Are there any intraepithelial lymphocytes, 
is there crypt hyperplasia ( thickening of the basement level of the lining) 
enethough some tall villi can be seen. 
 
This can be a difficult area for the pathologist to deal with, coorelation 
with the clinical picture is essential to put it all together, this gets even 
more challenging as the definition of what constitutes celiac disease may 
change somewhat. 
 
This is just one challenge that celiac disease presents for patients, 
parents, doctors, and pathologists. 
 
Joe Murray 
Not medical advice 
========================================================================= 
Date:         Tue, 23 Apr 1996 10:52:00 CST 
From:         "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) 
Subject:      re biopsies 
 
There has been some questions about whether a celiac patient can have 
complete resolution of the intestine on a gluten free diet.  i believe that 
they can, Earlier reports of failure to heal really did not necessarily 
control for dietary compliance. 
 
While reviewing the accuracy of the original diagnosis of celiac dsiease may 
be an important exercise when seeing a patient for the first time many years 
after the original diagnosis, One should not discount the diagnosis on the 
basis of a normal biopsy after years of a gluten free diet.  It may be a sign 
of success!!  The first step should be to obtain the orginal records and if 
possible the biopsy slides and report upon which the diagnosis was based. 
 
## I think it is good idea to get copies of reports at the time of diagnosis 
to keep in a personal health file at home or safety deposit box, especially 
for children.  One does not know when later in life there would be a need for 
records.  This is especially so for a lifelong condition such as celiac 
disease.  Many hospitals only retain records for 21 years in the case of 
children, and as little as 7 years in adults ( usually 7 years of inactivity) 
I frequently am faced with reconfirming a childhood diagnosis in adulthood, 
and lack of these records is a problem.  Pathology slides are a different 
matter.  These may be retained for up to 21 years in some places ( retrival 
may take a while).  Few health care organisations can afford to keep records 
and path slides indefinitely.  ### 
 
This is not medical advice 
Joe Murray 
========================================================================= 
Date:         Wed, 24 Apr 1996 11:33:50 -0400 
From:         Kevin Lawson (IMMTEST@AOL.COM) 
Subject:      Re: Inconclusive biopsy results 
 
The presence of endomysial antibodies is the hallmark of CD.  Not 
all patients with CD and positive endomysial antibodies are 
gliadin antibody positive.  In addition, there are subjects with 
positive endomysial antibodies with no apparent clinical 
symptoms.  Such patients usually have asymptomatic manifestations 
of CD with patchy changes of the gut.  It appears from the 
information provided that your child, even though the biopsy 
findings are inconclusive, has CD. 
 
As for you and your wife, negative tests for endomysial 
antibodies when on a normal gluten containing diet for a 
reasonable period of time. This suggests that neither of you have 
CD. 
 
I hope you find these explanations satisfactory. 
 
Vijay Kumar, Ph.D. 
Research Scientist 
========================================================================= 
Date:         Wed, 24 Apr 1996 20:24:02 -0400 
From:         Richard Abrams (abrams+@PITT.EDU) 
Subject:      Vinegar and alcohol 
 
Alcohol and vinegar P sources of gluten? It has been common practice 
among celiac support groups and others offering advice on gluten-free 
diets to proscribe white (distilled) vinegar and alcohol as potential 
sources of gluten.  The assumption is made that any product  manufactured 
from a gluten-containing grain is probably contaminated with gluten 
proteins or peptides.  But to those with some chemical training (myself 
plus others who have posted comments on this subject in the past), 
distillation is a highly effective method for separating volatile 
substances such as alcohol from non-volatiles such as proteins or peptides. 
 
Vinegar, especially white vinegar, is a common ingredient in commercially 
prepared foods.  Because I object to dietary restrictions that are 
unnecessary and that further limit an already restricted diet, I have 
tried to learn something about the manufacturing process.  The following 
summary is for others who might like to know how white vinegar comes into 
being and what the level of gluten contamination, if any, is likely to 
be.  My sources of information have been the biotechnology literature and 
telephone contacts with knowledgable people in the industry.  I 
personally have had no hands-on experience in vinegar making. 
 
From grain to starch to fermentable sugar:  White (distilled) vinegar is 
of course not distilled, but the ethyl alcohol from which it is made is 
distilled from a yeast fermentation mixture.  (In the UK, however, I 
believe that 'distilled vinegar' has a different meaning, that it is made 
from malt and that it is in fact, distilled.)  In most of the world, 
molasses, which can be fermented directly by yeast, is the major source 
of alcohol.  Alcohol is also made synthetically from petroleum products 
but I do not believe that alcohol from this source is much used in the 
food industry.  In the U.S., starches derived from grains are the major 
source, mostly (about 85%) from corn. 
 
Starches are mixtures of large straight and branched chain polymers of 
the simple sugar, glucose.  Since yeast is incapable of fermenting 
starches, whether from corn, wheat, potatoes or any other source, the 
grain starches must be pre-digested with amylases, enzymes that are 
capable of splitting the starch molecules into smaller fragments. 
Depending upon the nature of the amylases, the end products are usually 
maltose (a disaccharide of two linked glucoses), some free glucose, and 
small amounts of assorted dextrins (small polymers of more than two 
glucoses).  In the brewing industry, the source of the amylases is 
usually barley malt, barley that has been allowed to sprout until the 
amylases and proteases needed to digest the nutrient stores in the seed 
have developed and then heated enough to stop the sprouting without 
inactivating the enzymes.  For industrial alcohol, including the food 
industry, it is common to replace malted barley with cheaper,  partially 
purified amylases prepared from bacteria (several species of Bacillus can 
be used) and/or a mold such as Aspergillus niger or Aspergillus oryzae. 
 
Alcoholic fermentation:  After the starch is largely transformed by the 
amylases, yeast is added and the temperature adjusted to initiate 
fermentation.  The small  polymers in the digest such as maltose 
(glucose-glucose) and maltotriose (glucose-glucose-glucose) are 
hydrolyzed by the yeast cells to glucose.  Glucose is then converted by 
fermentation to ethanol and carbon dioxide, releasing energy in the 
process which is used by the yeast for growth.  Fermentation results in 
conversion of roughly 90% of the original starch to alcohol plus smaller 
amounts of other volatile products such as aldehydes, ketones, fusel oils 
(higher alcohols), phenol derivatives, and esters.  These volatile 
contaminants which vary with the yeast strains used and with the 
bacterial contaminants in the fermentation mixture contribute 
significantly to the flavors of alcoholic beverages but must be removed 
in the production of purified neutral spirits. 
 
Alcohol is purified by distillation:  After fermentation, alcohol and 
other volatiles are separated from the non-volatile components by 
distillation.  There is often a first crude distillation in which the 
fermentation mixture is boiled and the vapors are condensed back to a 
liquid phase that contains about 50% alcohol plus other volatile 
products.  While vigorous boiling can drive off microdroplets of the pot 
liquor (that contain non-volatile components) along with the alcohol 
containing vapors, industrial fractionating stills are built as tall 
refluxing columns with sections of transverse plate barriers that are 
designed to trap entrained droplets followed by multiple plates to 
rectify the vapors, i.e., to concentrate the alcohol, separate it from 
the other volatile constitutents (and purify them as byproducts), and to 
act as a further barrier against non-volatile material.  The problem for 
the distiller is not the relatively simple task of avoiding carry  over 
of the non-volatile material in the distilling pot, but rather the 
separation of the various volatile products from one another. 
 
Is there nitrogenous contamination in the distillate?  I spoke to an 
official of a firm in Iowa that provides U.S.P. grade 95% ethanol to 
Heinz and other vinegar producers.  I was informed that their product 
which undergoes repeated distillations contains no detectable nitrogen 
using an assay whose limit of detection is 0.1 parts per million. 
Assuming that all the hypothetical nitrogenous impurities are protein or 
peptide, this limit level corresponds to about 0.7 mg protein per liter 
of 95% alcohol.  The alcohol undergoes about a 20-fold dilution in its 
conversion to vinegar (4 to 5% acetic acid), so that, if all of the 
hypothetical protein survives the acetous fermentation, its final 
concentration is less than 0.035 mg per liter of vinegar.  This worst 
case scenario represents the limit of detection; the actual amount 
present may be far less, and if it exists, it may have originated from 
yeast protein (non-gluten) as well as from seed protein. 
 
Is 0.035 mg/liter dangerous?  Assuming that the maximal daily consumption 
of vinegar by an average person is of the order of 30 ml ( 6 teaspoons), 
the daily dose of protein or peptide originating in the yeast 
fermentation mixture would be less than 0.001 mg (1 microgram).  The 
significance of this maximum level can be judged by comparing it to the 
estimated gluten level in European GF diets that are based on wheat 
starch from which the gluten has been removed by washing (see the March 
16 summary by Bill Elkus of a CelPro discussion of a possible gluten 
tolerance level).  Estimates of residual gluten in these "gluten-free" 
diets are in the range of  4 to 40 mg per day.  To reach the lower 
estimate of this possible "tolerance" dose would require a daily 
consumption of at least 100 liters of white vinegar.  This might well be 
dangerous to one's health, but not because of its gluten content. 
 
The conversion of alcohol to vinegar:  I should perhaps comment on the 
conversion of alcohol to vinegar, a process in which no distilllation or 
elaborate purification is involved.  This process involves a second 
fermentation (the alcoholic yeast fermentation being the first) that uses 
bacteria, a species of Acetobacter, in place of the yeast.  The procedure 
is basically the same whether the alcohol is U.S.P. grade or the crude 
alcoholic mixtures in fermented apple or grape juice.  The bacteria in 
the vigouously aerated vinegar reactor may be in suspension or on the 
surface of wood chips, and the liquid phase contains in addition to the 
alcohol source, a nutrient mixture to keep the Acetobacter growing while 
they oxidize alcohol to acetic acid.  The nutrient mixture is said to 
consist of a variety of salts and some carbon and nitrogen sources such 
as glucose, citric acid, ammonium phosphate, some yeast extract or dried 
yeast, and hydrolyzed soy flour.  At the conclusion of the fermentation 
the vinegar is not distilled, but rather is filtered to remove 
microorganisms  and particulate material and diluted to bring the acetic 
acid level down from values as high as 15 to 20% to roughly 5%. 
 
Can gluten be introduced during the acetous fermentation?  Since it is 
possible that traces of the nutrient mixture could persist into the 
finished product, one might  wonder whether gluten-containing grains were 
ever used instead of or in addition to soy protein.  I spoke to the 
president of one of the major suppliers of nutrient mixes to vinegar 
manufacturers.  While he would not give me a detailed list of ingredients 
(trade secret!), he assured me that his product is gluten-free, and he 
further stated that he was familiar with the composition of other such 
products in use on both sides of the Atlantic, and that they were all 
gluten-free.  The nutrient mixture is used in cider vinegar as well as in 
white vinegar, although in significantly smaller amount. 
 
Can vinegar be a food allergen?  I have not searched the allergy or 
toxicology literature.  It is evident that with any vinegar there is a 
finite content of dissolved solids that consists of inorganic salts, 
trace metals, and nitrogenous and other organic materials that could 
originate from the nutrient mix or as byproducts of the metabolism, death 
and lysis of the Acetobacter, or in the case of cider vinegar, from the 
variety of materials pressed out of the apple cores and peels and juice 
or produced in the yeast fermentation that yields alcohol for the 
subsequent acetous fermentation.  Total solids in vinegars may 
approximate several percent, practically equal to the acetic acid 
concentration,  and there may be constituents to which some people, 
celiac or not, are sensitive, but it is inconceivable to me that a 
gliadin or a gliadin peptide could be one of those constitutents. 
========================================================================= 
Date:         Mon, 29 Apr 1996 12:07:24 +0100 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) 
Subject:      Methyl Cellulose 
 
Just for the record (and to correct a mistake inspired by the Ener-G 
spokesperson). 
 
Methyl cellulose is not a petroleum derivative. It is formed from 
cellulose which is a glucose polymer derived from the cell walls of plants. 
It is formed by reaction of the cellulose with methanol to produce methyl 
ether groupings at the primary (C-6) and secondary (C-2 and C-3) alcohol 
groups of the glucose units in the cellulose chain. The grade used 
pharmaceuticaly has 2-3 (average) ether groups per glucose unit. 
 
(Apologies for the technicality of the reply - a colleague prepared it 
for me and I felt obliged to send it as written.) 
 
It is used like xanthan gum though. 
 
Paul Shattock 
========================================================================= 
Date:         Fri, 3 May 1996 09:10:01 EDT 
From:         Bill Elkus (Bill_Elkus@JEFCO.COM) 
Subject:      Re: Fecal Occult Blood, Elevated Liver Enzymes 
 
This week, there were two posts about the New England Journal of Medicine 
article on blood in the stools of celiacs, and elevated liver enzymes.  The 
following is being forwarded with Dr. Horvath's permission: 
 
From: khorvath @ umabnet.ab.umd.edu (Karoly Horvath) @ MHS 
Date: 05/02/96 08:20:20 AM 
 
FECAL OCCULT BLOOD 
 The cited NEJM paper found occult intestinal bleeding in patients 
who had some degree (partial and total) of intestinal villus atrophy. 
However, this paper have certain methodological problems. The first, and 
most important -as you can read in the editorial comment- that they did 
not place the patient on specicific diet before collecting the stool. It 
is a rule that the patients should be on a diet which eliminate all the 
peroxidase containing food. So this may increase the number of false 
positive cases. 
 The second problem that the hemoccult test is only a screening method, 
which does not give information about the degree of blood loss. The test 
can be positive in the presence of small amount of blood in the stool. 
 While this paper has limitations, I should accept that patients 
with mucosal atrophy and inflammation have small amount of blood loss. So 
I do not have any doubt regarding the final conclusion of paper, that 
patients with active CD have blood loss in the stool. This is not 
surprising and not a novel finding. 
 To avoid any panic in the celiac community I do not recommend to 
post this finding without appropriate comment to the Celiac List. 
We should emphasize one sentence from this paper: 
 "ALL THE PATIENTS WITH PREVIOUSLY DIAGNOSED AND TREATED CELIAC 
SPRUE HAD NEGATIVE TESTS FOR FECAL OCCULT BLOOD." 
 
LIVER ENZYMES 
 It is well known that patient with intestinal inflammation may 
have elevated liver enzymes. The well known examples are patients with 
inflammatory bowel disease. Because patients with active CD have 
significant accumulation of inflammatory cells in the mucosa it is not 
suprising that a percentage of patients with active CD have elevated 
liver enzymes. However, this is a temporary elevation, which disappears 
on gluten-free diet. 
 The explanation is not clear for this finding. The simplified 
explanation is that there is an increased permeability in the inflammed 
intestinal segments and different toxins, which normally are detoxified 
by the enterocyte Cytochrom P450 enzyme system,  enter the portal 
circulation and there is an increased toxin load into the liver. 
 
Karoly Horvath, M.D., Ph.D. 
Baltimore 
========================================================================= 
Date:         Fri, 3 May 1996 19:04:04 EDT 
From:         Bill Elkus (Bill_Elkus@JEFCO.COM) 
Subject:      Re: Call for opinions. 
 
Kerwin Myler (m301345@er.uqam.ca) said: 
 
)I've been diagnosed for about three weeks now. .. snip... 
)My gastro-enterologist seems to think that the occasional consumption of 
)trace amounts of gluten will not be harmful. What do you think? 
 
Kerwin, welcome to one of the central controversies of the celiac world! 
Two months ago, we made a special post on this topic, which I will 
repeat here for the benefit of other new subscribers: 
 
Date:         Sat, 16 Mar 1996 
From:         Bill Elkus (Bill_Elkus@JEFCO.COM) 
Subject:      CEL-PRO Summary:  Maximum Gluten Discussions 
 
 
On February 8th, I sent the following post to the professional 
discussion group on celiac ("cel-pro"): 
 
)Much of the disagreement about products on the lay-Celiac List, and 
)generally within the Celiac community, is ultimately due to confusion 
)about the maximum tolerable daily level of gluten. 
) 
)Can anyone help?  Even though this issue is not fully settled (and 
)probably varies amongst individuals), discussing even vague boundaries 
)would still be very useful to Celiacs who are confronted with daily 
)decisions on which foods to avoid. 
 
This resulted in a lengthy discussion on the concept of how much 
gluten a typical Celiac can tolerate in a day without damage.  The 
listowners have edited and compiled the discussions, and have created 
a downloadable file (about 15 pages) which anyone can access by sending 
an email to LISTSERV@LISTSERV.ICORS.ORG with GET CELIAC MXGLUTEN in the 
body of the message. 
 
The Listowner's summary of (and commentary on) the discussion follow: 
 
1) We should say at the outset that the everyday reality of many celiac 
clinicians is that some patients are consuming thousands of milligrams 
of gluten per day, either through lax attitudes or inadequate 
information about what products contain gluten.  Therefore, a 
discussion on the fine details of 4 to 100 mg of gluten may seem 
esoteric to some clinicians. 
 
2)  The maximum gluten question is inherently difficult to answer. 
It's almost impossible to scientifically "prove a negative" -- i.e. 
that no damage has occurred.  How does one define the number of places 
to look for damage?  Just the intestines? 
 
3) Even if a study could be designed to "prove the negative", it is 
very hard to find confirmed celiacs willing to subject themselves to 
experiments that may injure them, especially in sufficient numbers to 
create a large study group. 
 
4) The use of special low-gluten wheat starch in many European 
countries, with its small (but non-zero) amounts of gluten, is seen by 
some as establishing a de-facto lower limit where no damage has been 
detected to date. One study (Ejderhamn) put this in the 4 to 14 
milligrams per day range. Another European estimates it typically at 
40 mg per day. 
 
5) On the other hand, there was one study (Catassi) showing at 100 mg 
gluten per day, some adverse changes in the intestine could be seen. 
 
6) Most U.S. Celiac support groups, and some professionals, feel that 
due to (a) the many current scientific unknowns, (b) the inadvertent 
gluten consumed due to cross-contamination in the manufacturing 
process of some foods, and (c) the availability of gluten-free 
alternative foods, there is no reason to intentionally ingest any 
amount of gluten.  Others feel this position is too extreme. 
 
7) Personal symptoms may be an indication of gluten ingestion but they 
are not scientific proof of gluten damage, or even of gluten ingestion! 
There are other ingredients that can give false "celiac symptoms" in 
allergic and/or susceptible individuals.  These symptoms are extremely 
diverse and vary according to the individual and their sensitivity. 
If you experience "celiac symptoms" then it is your personal choice 
whether to avoid the product.  It is prudent to investigate the 
product's ingredients and processing methods to determine the source 
of the gluten or your personal "allergic reaction". 
 
8) On the other hand, it is equally important to realize that the LACK 
of "celiac symptoms" is NOT proof that no damage is being caused. 
Celiac clinicians report many examples of previously undiagnosed 
celiacs with abnormal biopsies and no obvious gastrointestinal 
symptoms.  One value of a post-gluten-free-diet biopsy is to confirm 
that your diet is working properly, even if you do not have obvious 
celiac symptoms. 
 
9) Our personal "bottom line" is that it is impossible to state with 
confidence a limit below which no damage occurs from gluten, so we 
attempt to maintain a zero-gluten policy.  However we recognize this 
as our personal choice, not necessarily scientific reality, and we feel 
it is inappropriate to criticize others who have come to a personal 
decision to use a low-gluten diet.  (Remember that 40 mg of gluten is 
contained in about 1/100th of a slice of regular full gluten bread!) 
 
Sincerely, 
Bill Elkus, for 
The Listowners 
========================================================================= 
Date:         Wed, 8 May 1996 12:28:02 EDT 
From:         Bill Elkus (Bill_Elkus@JEFCO.COM) 
Subject:      Dr. Murray on 'curing' CD 
 
Gayle Kennedy (gmk3@cornell.edu) said: 
 
)....I met a Peace Corps couple (retired folks) whose daughter 
)was diagnosed with celiac disease back in the 40's in NYC.  The doctor 
)said he could cure her if she ate a diet completely void of carbohydrates 
)for one full year.  .....(snip) 
)after a year the daughter returned to a normal diet - now in her 50's she 
)continues to eat everything and has had no recurrence.  ...(snip) 
) 
)You doubters may think it was an incorrect diagnosis.  Others may think 
)she will eventually develop symptoms or worse, but almost 50 years is a 
)long time of a regular diet with no complications. 
 
The following reply is being posted with Joe Murray's permission: 
 
 There have been a number of  attempts to put Celiacs in remission back 
on a gluten containing diet. (also known as challenge). The length of time 
to relapse varies enormously from weeks to years and may or may not be 
associated with the same or even symptoms.  The diagnosis 
of celiac disease in the 40's was more difficult than now in that no biopsies 
were available to confirm the diagnosis and it is hard to know it there was 
celiac disease in the first place. Many patients put back on the gluten do not 
actually eat very much of it and may not have very bad symptoms but most if not 
all will eventually develop the problem in the intestine eventually. 
 
Not medical advice 
Joe Murray 
University of Iowa. 
========================================================================= 
Date:         Sat, 11 May 1996 23:15:29 +0100 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) 
Subject:      Gluten Free Beer (Update) 
 
Last November (I think it was but I have deleted my post) I mentioned 
that we were trying to develop a genuinely gluten free beer which would 
be suitable for people with Coeliac Disease. 
 
An undergraduate student has been working on this as her final year 
project and produced a couple of brews prepared from Sorghum grains. 
 
First the Good News. The beer is clear and reasonably coloured; the head 
is acceptable; the alcohol content is high enough (5.1%) and it appears 
to be genuinely gluten free (limited tests using 2 Dimensional 
gel-electrophoresis). The odour is not too attractive. 
 
Now the Bad News. The brews scored the lowest marks ever recorded by our 
panel of regular "beer tasters". I have to agree with the "tasters". The 
aftertaste was particularly "memorable" and required several pints of 
regular commercial ale to dislodge from the palate. 
 
Our "Brew Master" is not too discouraged though and has a few ideas which 
he (seriously) believes will ameliorate the problem. 
 
I would be interested to know if any other brewers out there have been 
successful. 
 
Paul Shattock 
========================================================================= 
Date:         Wed, 15 May 1996 09:41:00 CST 
From:         "Joe Murray, M.D." (Murray@INTMED-PO.INT-MED.UIOWA.EDU) 
Subject:      re breastfeeding and celiac disease 
 
Breastfeeding is highly desirable from the infant's point of view.  It does 
place special nutritional demands on the mother, for calories, calcium and 
other nutrients as well as the fatigue that goes with having a small infant 
to care for. 
 
There should be no specific contraindication for breastfeeding.  Many peoples 
around the world very adequately feed their infants up to the age of 2 , both 
gluten free and often with marginal nutrition at best.  This would be the 
case in asia especially.  I suggest to my patients in general 
 
1. to precook as much as possible before delivery (its obviously a chore to 
prepare food and look after a infant.) 
 
2. eat a diet a diet high in calories and really emphasize the fluid intake, 
drink lots and lots of fluids more than you think you need by thirst alone 
avoid caffiene of course. 
 
3. Take plenty of calcium and 100% of multivitamins.  Extra vitamins only if 
there is a specific deficit and then only under close doctor monitoring. 
 
4. Get as much help with holding and changing the baby etc as you can. 
 
5. And relax about the breastfeeding as much as possible, A good rocking 
chair or glider is a wonderful aid for this. 
 
Not  medical advice 
Joe Murray 
========================================================================= 
Date:         Fri, 24 May 1996 10:49:19 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: allowed vs. not allowed 
 
Personally, I think Karen makes some good points and I think the Canadian 
Celiac Association has always done a good job in keeping things in balance. 
 
My one question has to do with malt vinegar.  I don't know how malt vinegar 
is prepared, but have assumed (perhaps wrongly) that it probably is not a 
distilled product because of the color and strong flavor. Is there no 
extract of barley malt incorporated into malt vinegar?  If any barley malt 
is included for flavor, then there may be some harmful barley hordein 
peptides in the vinegar.  These would not distill over into the vinegar, 
however, so it comes down to whether or not undistilled material is included 
in a barley malt vinegar. Perhaps someone reading the list is knowledgeable 
about the process used for making malt vinegar.  I don't think there should 
be any problem related to celiac disease with white vinegars made from 
distilled alcohol because the harmful peptides are not volatile and would 
not distill over into the alcohol. 
 
Don Kasarda, Albany, CA 
 
)There are some problems with generalization since in Canada the Canadian 
)Celiac Association has caramel color on the ALLOWED list.  We also have 
)alcohol (not beer or some wines) and vinegar including malt vinegar on our 
)ALLOWED list because of the distillation process. 
)     (snip) 
)Karen, Edmonton, Alberta, Canada 
) 
)kbulmer@mercury.uah.ualberta.ca 
========================================================================= 
Date:         Fri, 24 May 1996 23:24:48 -0400 
From:         khorvath@UMABNET.AB.UMD.EDU 
Subject:      Re: Oat consumption and CD 
 
 There is an other work supporting that oat prolamines are not 
innocent for the celiac small intestine. 
 
 The Journal of Pediatric Gastroenterology and Nutrition 
(1996;22:414) published the abstracts of the forthcoming ESPGAN Meeting 
(June 4-8, Munich, Germany). Troncone et al will present their work: 
 
"Oat prolamines activate mucosal immune response in the in vitro 
cultured treated coeliac mucosa" 
 
The conclusion is that "oat prolamines are able to activate the T-cell 
mediated mucosal immune response in the coeliac jejunum, and represent a 
warning against the inclusion of oats in the diet of coeliac patients." 
 
 
Karoly Horvath, M.D. 
Baltimore 
========================================================================= 
Date:         Sun, 26 May 1996 17:14:36 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      oats 
 
Comments from Don Kasarda (Albany, CA) on the recent post by Dr. Horvath. 
 
The work from Prof. Auricchio's laboratory (Troncone et al.) in Naples is 
certainly of interest and I shall look forward to seeing the details, but I 
will just point out for the sake of balance that studies with patients who 
ingest, or have instilled into their intestines, the substance to be tested 
represent the "gold standard" and in vitro testing (that is, in glass, or in 
the test-tube), while valuable, does not carry as much weight.  The results 
from the Finnish group and from Dr. Feighery's group (not yet published), 
Dublin, Ireland, are very impressive.  The results based on in vitro testing 
would have to be truly exceptional to undermine the excellent work that has 
been done on the safety of oats.  So, we shall have to wait and see, but I 
doubt there is reason to be overly concerned just yet. 
========================================================================= 
Date:         Mon, 27 May 1996 12:38:04 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      caramel color 
 
Comments from Don Kasarda, Albany, CA 
 
Don Wiss, who does excellent research and provides an enormous amount of 
valuable information to celiac patients, posted a message that included the 
standard of identity for caramel color, which follows: 
 
Caramel Color 
  The problem with caramel color is it may or may not contain gluten 
  depending on how it is manufactured. In the U.S.A. caramel color must 
  conform with the FDA standard of identity from 21CFR CH.1. This statute 
  says- The color additive caramel is the dark-brown liquid or solid material 
  resulting from the carefully controlled heat treatment of the following 
  food grade carbohydrates: 
        Dextrose (corn sugar) 
        Invert sugar 
        Lactose (milk sugar) 
        Malt syrup (usually from barley malt) 
        Molasses (from cane) 
        Starch Hydrolysates and fractions thereof (can include wheat) 
        Sucrose (cane or beet) 
  (Also acids, alkalis and salts are listed which may be employed to assist 
  caramelization). 
 
Now, there is certainly a possibility that some toxic peptides might end up 
in caramel color made from two of the seven possible sources listed 
above--from malt syrup or from wheat starch.  A person who has decided that 
strictly defined zero gluten is his or her goal, should avoid caramel color 
on that basis. 
 
However, for those of you who like to hear the other side (I know there are 
some because you send me messages occasionally), I will point out that: 1) 
the amount of gluten peptides likely to end up in malt syrup or wheat starch 
is very small, hence the amount that ends up in caramel color will be very 
small.  2) Many Europeans eat wheat starch products without any clear 
evidence that the vast majority are harmed by this.  3) The amount of 
caramel color used in products makes up a small amount of the product. 4) 
The process of caramelization might destroy active peptides although this 
has not been studied to my knowledge. 
 
Is caramel color worth worrying about?  I think the decision is up to the 
individual and his or her personal risk tolerance.  If you have a Type I 
hypersensitivity response to gluten (this is the type of response that can, 
in its extreme manifestations, kill a person who is stung by a bee or eats a 
single peanut), of course you should avoid even minute amounts of gluten. 
It is my impression that very few celiac patients have a Type I response 
(perhaps others will comment on this). 
 
Disclaimer:  I am a research chemist, and not a physician. This is not 
medical advice.  It is information provided for the purposes of education 
and discussion. 
========================================================================= 
Date:         Mon, 27 May 1996 17:57:36 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Carolyn Burket/spelt 
 
Carolyn, 
 
I am going to post this to the list rather than just to you because it may 
be of interest to others. 
 
Spelt simply is wheat. It is not some other grain, not an alternative to 
wheat. Spelt does have alpha-gliadin.  It also reacts positively in the 
Australian antibody test.  Several papers indicating this have been 
published recently.  I will dig up the references upon request.  I think you 
are probably doing yourself harm by eating spelt if you have celiac disease 
or wheat allergy. Many celiac patients do not have immediately recognized 
symptoms from eating wheat.  Some younger patients have returned to a normal 
diet for years before finally breaking down again. Again, this is documented 
in the literature and I will dig up references upon request. 
 
Don Kasarda, Albany, CA 
========================================================================= 
Date:         Sat, 1 Jun 1996 08:15:45 GMT 
From:         William Elkus (Maxwell@LAMG.COM) 
Subject:      Honey, Milk and Meat GF? 
 
George V. Spanos (72253.3372@COMPUSERVE.com) said: 
 
)I remember reading something about not all honey being gluten-free. 
)Is this true? 
 
I have never heard any reputable source claim that honey is not GF, and 
would be interested in hearing from anyone who has.  From time to time, 
the issue arises whether animals who somehow digest parts of a gluten- 
producing plant can carry though the intact gluten into foods: milk, 
meat, or even honey. 
 
Months ago, we asked this question to the cel-pro group, but no one had 
a response.  The listowners are not aware of any research on this 
issue. 
 
Don Kasarda, in private email (reprinted here with his permission) had 
the following to say about honey and milk: 
 
DK) ...honey should not be a problem as far as the bees are concerned. 
DK) All grasses have florets, essentially flowers, but these would not 
DK) have any gluten proteins in the pollen produced within them (and 
DK) gluten protein synthesis doesn't begin until pollination has 
DK) occurred).  Also, I don't think bees bother much with grasses 
DK) (don't know for sure) because the flowers are so small and access 
DK) to pollen is somewhat limited. 
DK) 
DK)The processors of honey products?  I don't know if they would have 
DK)any reason to add gluten. 
DK) 
DK) ...although I feel pretty certain about the situation with honey, 
DK) I don't know of any actual research regarding, say, the possibility 
DK) that if a cow is fed wheat some gluten peptides might end up in the 
DK) milk.  My guess is that ruminant digestion being different from 
DK) human digestion, this may not happen, but I can't be sure of 
DK) course. 
 
In the early days of our List, Dr. Reichelt posted citations to journal 
articles showing that there are detectable amounts of gluten in 
mother's milk, although the amounts are very small. 
 
If anyone has seen research on this issue, please post it. 
 
Bill Elkus 
Los Angeles 
========================================================================= 
Date:         Tue, 4 Jun 1996 19:37:00 -0400 
From:         Don Wiss (donwiss@PANIX.COM) 
Subject:      Reichelt on: Bladder control. 
 
Many parents report that their children suddenly gain control of their 
bladder or bowels after beginning a gluten/casein free diet. Dr. Reichelt 
was asked if he knew why this occurs. His reply follows: 
 
Date:    4 June 1996    6:25 AM 
Subject: Bladder control. 
From:    Kalle Reichelt,K.L.Reichelt@rh.uio.no 
 
Hi. I really have no idea why this is possible. We have noticed that many 
children on diet stop soiling themselves and this is especially the case 
where stool control has been lacking. Could it be that maturation of the 
central nervous Systems picks up again????. After all opioids, like the 
exorphins that we have demonstrated in autism, inhibit brain 
maturation.(1-2). A meeting abstract point in similar direction(3) 
 
Ref: 
1: Zagon IS and Mclaughlin PJ (1984) naltrexone modualates body and 
brain development in rats: A role for endogenous opioid systems in growth 
Life Sci 35: 2057-2064. 
2: Zagon IS and McLaughlin PJ (1987) Endogenous opioid systems regulate 
cell proliferation in the developing rat brain. Brain Res 412:68-72. 
3: Tenconi B et al (1991) Prenatal exposure to opiates alters reactive 
pruning and regeneration of serotoninergic neurons. Brain Dysfunct 4: 49-50. 
All the best                                    Cheers 
 
                                                TINY 
 
K. Reichelt 
Pediatric Research Institute 
N-0027 Oslo, Norway 
Tel: +47 22 86 90 45 
Fax: +47 22 86 91 17 
E-mail: K.L.Reichelt@rh.uio.no 
========================================================================= 
Date:         Thu, 6 Jun 1996 20:11:53 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      over-the-counter medications 
 
Comments on over-the-counter medications from Don Kasarda, Albany, California 
 
I have been reluctant to get into the whole medication question because I 
cannot offer solid proof for my opinions and many list members are extremely 
conservative when it comes to the question of avoiding gluten, even to the 
extent of refusing to drink or eat anything that might have grain alcohol in 
it. In consideration of the large amount of continuing discussion on this 
list of medications, however,I will just say I suspect that medications are 
hardly worth worrying about unless you are consuming them in very large 
amounts over long periods of time.  I would guess that almost all are 
"gluten-free" in the celiac sense, whereas those that are not would, with 
some possible rare exceptions, have very little gluten in them. I doubt that 
traces of gluten (less than say 5 mg per day) are significantly harmful for 
99 and 44/100 percent of celiac patients. 
 
With regard to the following from a recent posting: 
 
)He began by 
)confirming that the product is gluten free and then added that one of the 
)ingredients--zein--is sometimes derived from gluten but insisted that when 
)their customer service people say the product is gluten free that this is 
)correct information.  He finally did agree that celiacs should probably not 
)use it, but continued to insist that the customer service reps were giving 
)out correct information!  Pretty unbelievable.  He did say, by the way, 
)that he is a pharmacist. 
 
Once again, we run into semantic problems.  Zein is a protein from corn (the 
equivalent of gliadin in wheat). Most unfortunately, in recent years some 
companies have begun calling the protein residue left after starch 
processing, corn gluten. This residue does contain zein proteins.  I suspect 
the contention that zein might be prepared from gluten is related to this 
use of the term corn gluten.  Strictly speaking, gluten is only found in 
wheat, but celiac patients began extending the term to any harmful proteins 
and peptides, such as those from rye and barley, so I guess we can't condemn 
the maize (corn) processors too much for also appropriating the term. My 
guess is that the customer service reps were indeed giving out correct 
information to celiac patients. 
 
Disclaimer: As I said, I cannot offer solid proof for these opinions and I 
do not offer them as medical advice. 
========================================================================= 
Date:         Sat, 8 Jun 1996 18:28:00 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: about the genetically engineered rice 
 
Comment from Don Kasarda, Albany, California 
 
I largely agree with Javier's comments.  Although about 50-100 genes code 
for the gluten proteins in wheat, the genes that were used to increase 
resistance in rice were almost certainly not genes coding for gluten 
proteins.  I do think, however, that celiac patients have reason to be wary 
of what changes are genetically engineered in plants. Working towards proper 
labeling seems reasonable. 
========================================================================= 
Date:         Mon, 10 Jun 1996 20:11:54 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      gluten function 
 
The gluten proteins in wheat are seed (grain) storage proteins that provide 
a source of nitrogen and amino acids for the new plant upon germination of 
the embryo.  The high levels of glutamine and proline in wheat gluten 
proteins are present presumably because these amino acids can be efficiently 
transformed by the plant into all the other amino acids (and then all the 
many different proteins) needed by the new wheat plant for differentiation 
and growth. 
 
Don Kasarda, Albany, CA 
========================================================================= 
Date:         Thu, 20 Jun 1996 16:00:08 +0000 
From:         Phil Sheard (phil.sheard@STONEBOW.OTAGO.AC.NZ) 
Subject:      ayurvedic medicines 
 
Shashi Pathak wrote requesting info on the components Livotrit Plus. I 
looked up a multi-volume encyclopedia entitled "Indian Medicinal Plants" 
published in 1994 by Orient Longman. Unfortunately, our library has only 
the first 3 volumes! It seems these agents have been used for many years in 
Hindu medicine (hence the term "ayurvedic"). I was able to find the 
following: 
Andographis paniculata, the green chinetta, used for hyperdipsia, burning 
sensation, wounds, ulcers, fever, malaria, inflammation, cough, bronchitis, 
skin diseases, leprosy, pruritis, intestinal worms, dyspepsia, flatulence, 
colic, diarrhea, dysentery 
Boerhaavia diffusa, hogweed or pigweed, used for inflammation lumbago, 
myalgia, scabies, cardiac disorders, jaundice, anaemia, dyspepsia, 
constipation, cough, bronchitis and general debility 
Eclipta alba, trailing eclipta, good for blackening and strengthening the 
hair, stopping heamorrhages and strengthening gums. Seeds good for 
increasing sexual vigour 
Berberis aristata, barberry, used primarily as antidiarrhea, as is 
Tinospora cordifolia (they both contain the alkaloid berberine). 
These lists are abridged, and their reputed usefulness in many cases is 
much more extensive than in the lists I have included here. Note that large 
doses of many of these agents cause the symptoms they are supposed to 
alleviate, for example, high doses of berberine cause diarrhea 
Looks to me as though this has been formulated to alleviate diarrhea and 
gastrointestinal malaise, among other things. 
I guess you'll never be able to walk past a hogweed again without wondering.... 
Hope you find this helpful 
Phil 
 
Philip Sheard 
Developmental Biology Unit, 
Department of Physiology, 
University of Otago Medical School, 
Dunedin, New Zealand. 
Ph (64 3) 479-7344 
Fax (64 3) 479-7323 
========================================================================= 
Date:         Thu, 20 Jun 1996 12:14:51 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: Request help from chemists 
 
Comments from Don Kasarda, Albany, California 
 
I wrote the following reply before seeing the post by Jim Barron.  I agree 
with his comments and will add my own even though they duplicate what he has 
said. 
 
The kicker in this description (which is copied after this message) is amino 
acids and low molecular (weight?) peptides.  Even though most gluten 
proteins contain at least 250 amino acids linked together like beads on a 
string, peptides resulting from breakdown of gluten proteins that contain 
even 14 amino acids linked together have been shown to be toxic in celiac 
disease.  In order to say that the soy sauce was not harmful to celiac 
patients, it would be necessary to show that the low-molecular-weight 
peptides produced from gluten by the hydrolytic action of the various 
enzymes do not include any remaining peptides with 14 amino acids or more. 
Furthermore, if any peptides of 14 amino acids or more remain, then amino 
acid sequencing would be necessary to determine whether or not they might 
fit with known toxic sequences.  Of course, quantities would be important. I 
have some doubt that minute quantities (below a certain level of daily 
intake) of potentially harmful peptides are worth worrying about by most 
celiac patients, but other scientists may disagree.  Technically speaking, 
however, I would be mighty surprised if soy sauce produced from wheat did 
not contain at least some harmful peptides derived from the breakdown of 
gluten. 
 
)Have recently received a letter from Kikkoman International, Inc. concerning 
)soy sauce with the following body 
) 
)All - please read with caution 
) 
)"Re: No wheat gluten in kikkoman soy sauce"  (Caution read on) 
) 
)"Kikkoman soy sauce is produced from water, soybeans, wheat and salt using a 
)natural brewing process which consists of enzymatic actions of specified 
)micro-organisms.  The brine fermentation takes approximately six months and 
)results in the fermentation of various acids, alcohols and other flavor 
)compounds by yeasts and lactic acid bacteria. 
) 
)During this process all soybeans and wheat proteins are completely hydrolyzed 
)to amino acids and low-molecular peptides by the action of proteolytic 
)enzymes of the Koji-mould used. 
) 
)It is free from wheat gluten as the result of enzymatic hydrolysis during 
)fermentaion." end of quote. 
) 
)So all of you with a chemistry background,  is this really possible if you 
)begin with wheat as one of the ingredients?  My feeling is that it is NOT 
)gluten free. 
) 
)Any help in clarifying this matter will be much appreciated. 
) 
)Please reply to 76513.1527@compuserve.com 
) 
)Thank you  Marjorie Rogers 
========================================================================= 
Date:         Sat, 29 Jun 1996 17:50:24 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      FDA 
 
Comments from Don Kasarda, Albany, California 
 
I have read the posting by Herb Bolz on the FDA and the follow-up postings 
by AMS and Jim Barron.  I strongly support the views expressed by Herb Bolz 
and consider them well balanced and reasonable.  As someone who has worked 
as a scientist in private industry (Du Pont, the old AT&T Bell Labs), at the 
University of California, and for a long time as a government scientist with 
the Agricultural Research Service of the US Department of Agriculture, I 
would say that the FDA is an outstanding agency, one that functions better 
than most (conservative adjective) private companies, and that Dr. Kessler 
is an outstanding director. We are all are quite fortunate to have this 
organization protecting us.  It isn't perfect--I haven't seen an 
organization that is--but I think the insulting comments about FDA employees 
by AMS are highly unwarranted.  My personal feeling is that we need to seek 
balance and reason in our views, and that the approaches recommended by AMS 
and Jim Barron will achieve little for celiac patients in the long run. 
 
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