Expert Postings
October 1995

Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1995 - All rights reserved worldwide.

Table of Contents

This file contains postings made by the following professionals: 
   Dr. Karoly Horvath--an associate professor of pediatrics ath the 
      University of Maryland at Baltimore.  Dr. Horvath set up the 
      Pediatric Gastrointestinal and Nutrition Laboratory, and is 
      now director of this lab. 
   Donald Kasarda--a grain specialist working for the United States 
      Department of Agriculture. 
   Dr. Vijay Kumar--President of IMMCO Diagnostics. 
   Dr. Markku Maki--Professor of Pediatrics at the University of Tampere 
      in Finland. 
   Dr. Joseph Murray--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. 
   Dr. Kalle Reichelt--involved in research in Norway.  He is looking 
      into the impact of gluten intolerance on certain individuals with 
      developmental delays. 
   Paul Shattock--Senior Lecturer in Pharmacy, Autism Research Unit, 
      School of Health Sciences, University of Sunderland; Sunderland, 
      England.  He is doing research on the relationship between 
      gluten/casein and autism.  His work has application to other 
      developmental and mental disorders. 
Date:         Tue, 3 Oct 1995 15:26:48 EDT 
From:         Jim Lyles ( 
Subject:      CD and Birth Defects--Two Experts Respond 
As a result of the discussion a few weeks ago on spina bifida and CD, 
I sent the following message to the CEL-PRO list, a private list for 
professionals treating and researching celiac disease (CD): 
*  *  *  *  * 
Date: September 14, 1995  2:52 pm 
There was a post on the CELIAC list recently which suggests a 
complication of [untreated] CD of which I had not previously heard. 
I'll try to summarize that post: 
A young mother, who is quite thin, "...was diagnosed with sprue [CD] in 
high school, but she got over it."  (This, of course, is nonsense.) 
She has a young daughter with spina bifida.  The post suggested a 
possible link between spina bifida and low maternal folic acid.  The 
question raised in the post is:  Could the spina bifida in the 
daughter have been caused by malabsorption of folic acid in the mother 
during pregnancy, with the malabsorption being a direct result of 
untreated celiac disease in the mother?  If that is the case, then we 
have a child inflicted with a life-long condition due to untreated CD 
during pregnancy.  Meanwhile the young mother could easily have 
another child, and is apparently unaware that she still has (and 
always will have) the sprue [CD] she thought she got over in high 
I wonder how many other birth defects relating to nutritional 
deficiencies during pregnancy might be caused by celiac-related 
malabsorption.  Does this connection seem plausible?  Are there any 
studies comparing birth defects for untreated celiac mothers with 
birth defects in the population at large?  Could such information be 
easily gathered? 
I'd welcome any comments you may have on this topic.  If there is a 
correlation between birth defects and untreated CD, I think it would 
be a powerful motivator for celiac women of childbearing age to not 
cheat on the diet.  People who won't take care of themselves will 
often go to extraordinary lengths to protect their current and future 
children.  It would also demonstrate the importance of screening the 
US population for celiac disease, even in the absence of apparent 
*  *  *  *  * 
There were several responses to this message.  I received permission 
from two of the doctors to widely distribute their responses; these I 
will repeat here for you. The first came from Dr. Markku Maki, a 
Professor of Pediatrics at the University of Tampere in Finland.  He was 
one of the speakers at the Baltimore conference.  Dr. Maki's response: 
*  *  *  *  * 
From: Markku Maki, MD 
Date: September 15, 1995  5:25 am 
Jim Lyles wrote: 
)The question raised in the post is:  Could the spina bifida in the 
)daughter have been caused by malabsorption?....I'd welcome any 
)comments you may have on this topic. 
At the Celiac Disease Study Group in Tampere, we want to respond.  We 
have discussed this lately and we are going to do an inquiry to the 
Finnish Coeliac Disease Society members about this.  Dr. Kati Holm has 
a case you might be interested in: 
The first child of the mother suffered from spina bifida and 
meningomyelocele (boy). Two pregnancies that followed resulted in 
abortion because of intrauterine diagnosis (confirmed meningomyelocele 
at autopsy).  During the fourth pregnancy anemia and folic acid 
deficiency were noticed.  The mother was treated with vitamins, folic 
acid and iron.  The pregnancy resulted in a healthy girl.  After this 
there were again several abortions because of detected menigmyelocele. 
The mother contacted Dr. Kati Holm (PhD on celiac disease) because of 
diarrhea and anemia and subsequently celiac disease screening tests 
were performed among other studies.  IgA class reticulin autoantibody 
tests were positive and a jejunal biopsy revealed the typical lesion 
for celiac disease.  She was prescribed a gluten-free diet, after 
which symptoms disappeared.  The iron and folic acid deficiencies 
disappeared at the same time as the mucosa recovered.  One pregnancy 
resulted, without any other therapy, in a healthy child. 
All this by chance alone?? 
Prof. Markku Maki 
Institute of Medical Technology 
University of Tampere 
P.O. Box 607 
FIN-33101 Tampere, Finland 
*  *  *  *  * 
The other response came from Dr. Karoly Horvath, Associate Professor 
of Pediatrics and director of the Pediatric Gastrointestinal & 
Nutrition Laboratory at University of Maryland: 
*  *  *  *  * 
From: Karoly Horvath, MD, PhD 
Date: September 17, 1995  5:47 pm 
The relation between folate deficiency and neural tube defects is well 
documented. Several studies have demonstrated a significant reduction 
of neural tube defects in the newborns of  folate supplemented 
pregnant woman. The risk reduction varies between 58-91%. The 
different studies used different supplementation and doses. A recent 
review article summarizes the up-to-date information in this subject 
(Czeizel AE, "Folic acid in the prevention of neural tube defects", 
Journal of Pediatric Gastroenterology and Nutrition 20: 4-16, 1995). 
The other association between folate deficiency and absorptive problem 
is not questionable, and does not need to be proven. 
I do not have any doubt that that the babies of women with 
non-diagnosed CD have an increased risk for neural tube defects.  We 
can collect information retrospectively,  however, it will not be easy 
and convincing.  A prospective study is easier if we found a center 
treating mostly children with neural tube defects and we can get blood 
samples from the mother shortly after giving birth for folate level 
determination and celiac serologic tests. 
Karoly Horvath 
University of Maryland 
*  *  *  *  * 
Thank you to Drs. Maki and Horvath for sharing their knowledge with us 
on this important topic. 
-- Jim Lyles 
-- Holly, Michigan, USA 
Date:         Fri, 6 Oct 1995 23:42:43 +0100 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) 
Subject:      Re: Vitamin E 
I have to say that I don't really know for sure since I do not have any 
of the product to hand. I would, however, be very surprised if it did 
contain yer-actual yeast as I imagine someone would have checked it out 
before now. 
If you mail me a small amount I can easily check it out microscopically 
and report back. 
Paul Shattock 
On Fri, 6 Oct 1995, David Taylor wrote: 
) Do you think it likely that the Super Nuthera could 
) compromise the yeast free diet? 
Date:         Mon, 9 Oct 1995 12:11:58 +0100 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) 
Subject:      Re: menstruation, ovulation, and cd 
Mary Courtney shared with us her own observations on the effects of the 
menstrual cycle on her own gut motility, cramps etc. 
As some of you may know, we have been looking at the urinary peptide 
profiles of people with autism for some time now but, as in all 
experiments, we sometimes get "false positives" from amongst the normal 
population. It seems that in some women there is an increase in material 
at certain times of the month and we suspect that peptide material is 
leaking through the gut wall in greater than normal quantities at this time. 
Our results would not (yet) stand up to critical analysis but the trends are 
pretty clear. 
Basically, our model would support that proposed by your GI specialist 
except that we would add that the hormones, as well as affecting gut 
motility could also affect gut permeability. These peptides might, in 
their turn, cause other effects in the body. Of course, if foods liable 
to produce these suspicious peptides (eg gluten containers) are avoided 
the problems would be minimised. 
We will be looking at this in greater detail over the next few months and 
it is possible that the story may collapse when we do. Perhaps I should 
not use this forum for such speculation but I thought it might be of 
interest. It would be interesting to know whether women who have gone 
gluten free have observed any reduction in PMT symptoms. 
Paul Shattock 
Date:         Mon, 9 Oct 1995 14:43:24 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: Cellulose 
Cellulose is a carbohydrate polymer of D-glucose.  It is the structural 
material of plants, such as wood in trees.  It contains no gluten protein. 
Methyl cellulose is a chemically modified form of cellulose that makes a 
good substitute for gluten in rice-based breads and so forth.  I think that 
methyl cellulose can be purchased from Ener-G foods in Seattle. 
Don Kasarda, 
Albany, CA 
)     Sorry if this question has come up before...does anyone know what 
)     cellulose is?  Just noticed it on another posting saying it was 
)     "safe."  Thank you. 
Date:         Mon, 9 Oct 1995 23:49:12 +0100 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) 
Subject:      Re: menstruation, ovulation, and cd 
Thanks for the response Susan, 
I am concerned that I might end up asserting something that I cannot 
demonstrate to be true so I hope folks will bear with me when I say, once 
again that our results are preliminary and will require a lot of 
loop-hole filling before being accepted for publication. However, I am 
aware that another "urinary-peptide man" is turning up results not 
dissimilar to our own. 
I was very interested that such problems, with the monthly migraines, 
should occur in your family given the presence of autism etc. 
The discerning reader may have noted that I did not mention at what time 
of the month we found this (presumed) increased leakiness to be most common 
(and I 
have to say that it is not always precisely the same). It would be 
interesting to note at what time of the cycle these problems are most 
apparent. Columbo is being repeated on the TV and this is a ploy that he 
has often used in such situations. 
Forgive me for not getting involved in the amino-acid profiles; I would 
prefer to leave that to others but I am glad that you have highlighted 
the involvement of B6 in these reactions as they tend to get ignored. The 
trouble with B6 is that it is a co-enzyme for so many reactions in the 
bdy and if it is effective in ameliorating the symptoms of autism there 
must be at least half a dozen explanations as to why. 
I do appreciate the personal reports. After all, they are clinical facts 
whereas much of what is written is interpretation of these facts or 
hypotheses based around them. 
Paul S. 
Date:         Tue, 10 Oct 1995 22:24:56 -0700 
From:         scott adams (sadams@HOOKED.NET) 
Subject:      milk 
I just received the following from Dr. Reichelt in response to my e-mail 
regarding the possibility of gluten in cow's milk due to their diet: 
)I do not know and I think this has not been adequately studied. Feeding 
)cows large amounts of grain is a fairly modern development and would if 
)they behave like humans, cause increased frequency of autism undoubtedly. 
)The dairy industry is causing trouble for such investigations. Sorry 
                                        KL Reichelt 
)K. Reichelt 
)Pediatric Research Institute 
)N-0027 Oslo, Norway 
)Tel: +47 22 86 90 45 
)Fax: +47 22 86 91 17 
If anyone knows where I can obtain more information on the subject, please 
post the information, or send it to me directly. 
Scott Adams - San Francisco, USA 
Celiac Website: 
Date:         Sat, 14 Oct 1995 07:27:26 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CEliac disease and seizures 
Not medical advice 
There is now a reported association in the medical literature between 
celiac disease and seizure disorder.  In children there may be severe 
epilepsy with the initial focus being in the occipital or temporal lobes( 
the rear end of the brain).  It may respond very well to typical seizure 
drugs.  There may also be a build of calcium in that part of the brain on 
CAT scan. There is not much reported on adults with seizure disorder 
other than the fact that it is more common for celiacs to have a seizure 
disoder than the general population.  I certainly have seen patients 
whose seizure disorder is worse when they have not been gluten free. 
However this may be due to better absorption of the  antiepileptic drugs 
as an alternative explanation rahter than a direct toxic effect of gluten 
or a nutritional deficit. 
Joe Murray 
PS there was an international symposium in April in San Marino devoted to 
the epilepsy in celiac disease. 
Date:         Thu, 19 Oct 1995 14:09:13 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      oats 
Comment from Don Kasarda, Albany, CA, on oats safety. 
I have not seen the NEJM article from the Finnish group although I had heard 
second hand about a meeting presentation of the work.  I have no reason to 
doubt the results.  I am coauthor of a paper from an independent study 
carried out by the laboratory of Dr. Conleth Feighery, Trinity College, 
Dublin, Ireland, and this study (paper submitted) also supports the lack of 
toxicity for a pure oats sample. 
I will remind people that it is easy for oats to be contaminated with wheat 
both in the field and in processing. 
I have no reason to think that oats must be limited to small amounts, but, 
of course, it isn't good to focus one's diet too much on a single food, so 
moderation of the normal sort is probably good. 
There are bound to be some people who are sensitive to oats, possibly 
through an allergic reaction to one component or another (just as there are 
people allergic to rice), but this sensitivity, on the basis of current 
results, seems unlikely to be celiac disease in its strict sense. 
The term gluten in celiac disease is not used in a proper sense (in that 
sense it is present only in wheat), but rather as a shorthand term for 
peptides derived from prolamins (proteins) that include the harmful amino 
acid sequences found in wheat. These peptides set off (in an unknown way) a 
series of reactions that ultimately may lead to flattening of the mucosa, 
malabsorption, and possibly other effects as well.  Wheat, rye, and barley 
have prolamins that contain the toxic sequence(s).  The finding that oats is 
(are?) not toxic indicates that the key sequences are not found in the 
avenins, the prolamins of oats.  Comparison of the amino acid sequences of 
avenins and gliadins yields clues to possibly important differences and I am 
pursuing the significance of these differences. 
Date:         Sat, 21 Oct 1995 20:46:07 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Gastrocrom 
Not medical advice 
gastrocrom is an oral form of cromalyn sodium, which better known as an 
asthma mediaction. It prevents one of the common allergy cells ( mast 
cells) from releasing its packet of nasty chemicals in response to some 
allergen.  Once an allergic response has happened it doesnot stop it. 
The oral form Gastrocrom is used by some to reduce food allergies.  There 
is very little research to  prove that it is effective in this way. It 
certainly has no role in treating celiac disease as the mechanism for the 
damage of celiac disease is not blocked by this agent. 
Joe Murray 
Date:         Sat, 21 Oct 1995 21:04:12 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Endomysial and gliadin blood tests 
Not medical advice 
There are two classes of antibodies seen in untreated celiac disease. 
Antibodies directed against a fragment of gluten called gliadin 
and antibodies directed against some tissue in the body itself, 
endomysial(the covering of muscle), reticulin ( the framework for kidney 
and liver) and there are some other. 
The actual tests are done using blood from the patient. LT 5ccs of serum 
is usually plenty.  The blood cells are removed. 
The gliadin tests is usually an automated machine read test.  While this 
means there is little room for interpretor error, there are no standardised 
tests, normal ranges, or even methods in use in the US. 
The endomysial tests are more dependent on the experience and ability of 
a pathologist in looking at a pattern of staining produced by the 
patients serum on a slice of monkey esophagus.  While this test is done 
in similar way in most labs there are differences in how these are 
How good are these tests? 
If all of the tests are positive then they are pretty accurate, 90% 
right.  However there are several reasons and circumstances when they are 
not so accurate.  IGA and IGG are two diffrent varieties of antibodies we 
have in our immune systems.  The IGA gliadin and IGA endomysial tests are 
the most accurate and also become negative relatively quickly after 
stopping gluten ( 3-6 months).  The IGG is not as specific( it can 
positive in non celiacs).  However it is important to do both, as about 4% 
of celiacs have no IgA at all. 
The biopsy is still considered the goal standard to confirm the 
If one is screening for celiac disease it is important to make sure that 
the patient have been on a gluten containing diet. 
The tests may also be useful in following up a known celiac to help 
confirm that the diet is free of large amounts of gluten. 
Also blood tests results may not be directly comparable from one lab to 
the next. 
Needless to say the interpretation of mixed results some positive and 
some negative is complicated.  also the interpretation and use of these 
tests in infants may be different. 
Not medical advice 
Joe Murray 
Date:         Mon, 23 Oct 1995 10:08:10 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and diabetes 
The link between diabetes mellitus and Celiac disease does not relate to 
gluten or malabsorption causing pancreas damage.  It is due to the 
similar tissue types that occur in both Type 1 diabetes and celiac 
disease.  type one diabetes comes on in young people and is associated 
with lack of insulin( also called juvenile onset).  These two diseases 
have tissue types that can be similar, and reports suggest up to 10% of 
type one diabetics of causcasian extraction may have celiac disease. In 
iowa it is about 6 %. Usually the diabetes is diagnosed first.  The 
symptoms of type one diabetes are usually obvious, with weight loss, 
passing a lot of urine , increased appatite, blurring of vision. it is 
the celiac disease that can remain hidden. 
Not medical advice 
Joe murray 
Date:         Wed, 25 Oct 1995 12:05:04 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and lupus, etc 
There very little info on the statistics for the coexistence of celiac 
disease and other autoimmune disease.  They certainly can co-exist, 
however good studies are lacking. The association with lymphoma is better 
described.  However the risk in non compliant biopsy proven celiacs is 
still quite low 5% lifetime risk.  it is lower still in compliant 
patients. Are there individuals who have a higher risk of getting it, 
other than the compliance issue, age may be another factor.  The older a 
patient is the greater the risk. As more atypical patients are diagnosed 
with CD the % who get lymphoma will likely fall. 
not medical advice 
Joe Murray 
Date:         Thu, 26 Oct 1995 06:49:46 EDT 
From:         Bill Elkus ( 
Subject:      gluten in mother's milk 
A little while ago, there was discussion of whether a mother eating gluten 
could transfer it to her nursing baby. Here is some additional input, reposted 
with Dr. Horvath's permission 
Bill Elkus 
To: Bill_Elkus @ (Bill Elkus) @ MHS 
From: khorvath @ (Karoly Horvath) 
Date: 09/29/95 08:06:05 AM 
Subject: Re: dietary proteins in mothers milk 
 Proteins ingested by mother can appear in the breast milk. There 
is well known disease in breast fed babies called eosinophilic colitis, 
which causes eosinophilic infiltration in the large intestine of the 
babies and clinically presents as rectal bleeding. The therapy is very 
simple: the mother stops ingesting cow milk and cow milk products and the 
babies do not have bleeding and they are completely well. 
 Based on this clinical syndrome, I do not have any doubt that 
gluten peptides can be in the circulation. I recall a study (in some 
dermatological journal) detecting circulating gluten in the blood of 
patients with DH. 
Karoly Horvath 
Date:         Fri, 27 Oct 1995 08:05:09 -0400 
From:         Karoly Horvath (khorvath@UMABNET.AB.UMD.EDU) 
Subject:      Re: Autoimmune diseases and CD 
There is an old and excellent publication about "Celiac disease and 
immunological disorders" (Cooper BT, Holmes GKT, Cooke WT. Britsih 
Medical Journal, 1978:1:537-539.) 
Out of 314 patients with CD, 63 had associated disorders of known or 
suspected immunological cause. 52 autoimmune diseases were found in 45 
patients. An important point: most of these diseases developed when the 
patients were on NORMAL DIET. 
Karoly Horvath, M.D., Ph.D. 
Date:         Mon, 6 Nov 1995 13:43:08 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: swelling arm 
Not medical advice 
after a mastectomy a rare complication is lymphedema of the arm on the 
same side.  this a blockage of the lymph channels in the arm pit.  It may 
be helpful to maintain great care in protecting that arm from injuries, 
cuts etc. Elevation might help. aproblem like should be discussed with 
the doctor/ surgeon who did the operation. 
Joe Murray 
Date:         Fri, 10 Nov 1995 23:38:49 +0000 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) 
Subject:      Re: grain alcohol 
Being a keen beer drinker myself I realise that there may be those on 
this list for whom such delights are impossible and I wondered if there 
was something that could be done about this sad situation. 
On our campus there exists a "Brew Centre" where people can train in this 
subject. Apparently many of our "graduates" have gone on to found their 
own micro-breweries in various parts of the world. It occurs to me that 
it should be possible to make a beer which can be guaranteed to be gluten 
free (or at least free from wheat, barley or oat prolamins). I have 
discussed it with the top man and he is quite keen to try out a few ideas. 
Clearly this would not be a great money spinner as the market is 
comparatively small but I just wondered if any of the folk who do have a 
problem with beer would be interested in such a project or think that it 
is worthwhile. If no-one is interested we will not bother. 
If anyone would be interested in such a product perhaps you could let me 
know. If there is an interest it would encourage further efforts in this 
Cheers,                Paul Shattock 
Date:         Wed, 15 Nov 1995 13:17:42 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      sorghum/millet beer 
comment from Don Kasarda, Albany, CA, on beer question. 
There is no adequate standard analytical method (that I know of) to test for 
gluten peptides in beer. 
Of possible interest, however, is a box included within an article that was 
part of an section about Africa in New Scientist (October 7 issue, I think), 
a British publication. Because some of their staffers had indicated that 
African beers made from sorghum and millet, which they had encountered 
during the visit to Africa to prepare the section, were quite tasty, the 
magazine editors sampled some African beers that are available in Britain as 
a side comment to the article.  The claim was that these beers are made with 
millet or sorghum and without barley malt, but rather fermented with a 
bacterial enzyme.  Consequently, if this is true, the beers should be free 
of any barley, wheat or rye components.  I doubt that these beers would 
taste like a barley-based beer, but they did say that some of the beers 
consumed in Africa were quite good--the few brands that could be bought in 
Britain were maybe less good. 
Date:         Thu, 16 Nov 1995 00:50:44 +0000 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) 
Subject:      Gluten Free Beer 
There has been quite an encouraging response to my previous posting about 
the desirability of such a product. Don Kasarda has described precisely 
what we had in mind for this product. We have been checking out the 
possibilities for a "beer" based on sorghum or on millet. My 
understanding is that these grains would be low in the amylase enzymes 
which are required to convert the starch into fermentable sugars. 
Therefore enzymes from some other source must be added and these are 
available from bacterial sources. 
Personally I have not knowingly tasted the African products which are 
made in this way but I am told they are perfectly acceptable. I will try 
to get hold of some and perform some organoleptic tests. 
I must also agree with Don that it is very difficult to test for gluten 
content in beer and so it would be necessary to be able to guarantee that 
the starting materials are all totally clean. However we will try to 
think of something which will work. 
Katriina Mdkinen has reported that a number of very well known European 
brands of beer are claimed to be "gluten-free" by the Swedish Coeliac 
Association. I am only guessing here but I would imagine that this status 
is obtained by filtration of the proteins. 
It has been reported that it is not necessary to have the whole molecule 
of gluten to get the classic coeliac response so presumably soluble 
peptide elements (from breakdown of the protein) could still evoke this 
response in a technically "gluten-free" beer. 
Am I correct on that one Don (Kasarda)? 
I have been censured for asking personal questions on this list but I 
thought the question and the hoped for response might be of general interest. 
Good Health,    Paul Shattock. 
Date:         Wed, 15 Nov 1995 18:43:55 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      beer proteins/peptides 
Paul Shattock asked: 
)It has been reported that it is not necessary to have the whole molecule 
)of gluten to get the classic coeliac response so presumably soluble 
)peptide elements (from breakdown of the protein) could still evoke this 
)response in a technically "gluten-free" beer. 
)Am I correct on that one Don (Kasarda)? 
Yes, Paul is correct.  A typical gliadin (or hordein) protein will contain 
approximately 300 various amino acids of 20 types linked end-to-end in a 
specific sequence into a necklace-like chain.  During the enzyme action in 
the process of beer making, however, the chain is broken down into smaller 
pieces.  Testing for the intact protein will probably show nothing because 
there are no (or only very small amounts of) intact proteins of the gliadin 
or hordein types remaining and there are no good standardized tests for the 
smallest peptides that might be harmful to celiac patients.  There is pretty 
good evidence for a 19 amino acid residue peptide having toxicity (Ciclitira 
and coworkers, Lancet).  This small size peptide would require very special 
research to be carried out in order to enable its identification in beer. 
It would not be filtered out from the beer.  Electrophoresis of the proteins 
of beer shows no intact hordeins.  This does not mean that the harmful 
peptides are not present.  They may or may not be present.  I don't think 
the subject has not been researched adequately. 
Don Kasarda, Albany, CA 
Date:         Thu, 16 Nov 1995 09:08:26 EDT 
Name:	 	Bill Elkus ( 
Subject:	Re: Gluten in NonFood Products 
Recently, there was a post which asked about reactions to gluten-containing 
products in non-food items, like shampoo or skin cream.  The listowners asked 
for comments from the CEL-PRO subscribers, who are clinicians and/or 
researchers in the celiac field, and received these two: 
While most celiacs are unlikely to have a reaction to topical gluten 
there are some individuals who claim to get a reaction to these non-food 
substances. For a gut reaction it would seem that it is necessary for the 
substance to get to the gut lumen.  I am not aware of any studies on the 
penetrance of topical substances to gut lumen. 
I tell celiac patients who ask, that if there is an easy alternative 
shampoo/ cosmetic/etc. use the non gluten containing substance.  I do not 
routinely counsel patients about avoiding gluten in these substances. 
I have met some patients who have an anaphylactoid response to gluten and 
these patients I tell to avoid gluten in all forms. 
There are countless coeliacs who several times a week have dermal contact with 
gluten.  These are coeliacs who bake for the rest of the family with regular 
flour. In my experience ( an adult coeliac clinic of well over 500 patients) 
none of the many coeliacs who do home baking for the rest of their families 
with gluten containing flour develop symptoms,  either in the GI tract or the 
skin. I not aware of baking being associated with poor response to a gluten 
free diet. Topical gluten in the upper airways causes symptoms of allergic 
rhinitis in an occasional patients.  I have always assumed this to be due to 
coexistent atopy. 
These are the views of just two celiac professionals, and not the result of 
tens of scientific studies.  In the early days of this CELIAC list, there were 
an number of posts claiming serious reactions, so not everyone will agree with 
these doctors.  As with so many other issues, each Celiac must make their own 
decision.  Having read these, I will still try to avoid obvious 
gluten-containing non-food items for my Celiac son, but if none are available, 
I will probably go ahead and use the gluten product. 
Bill Elkus 
Los Angeles 
Date:         Sat, 18 Nov 1995 13:48:31 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Blood test normal ranges 
Unfortunately because these tests are not standardised, there is no one 
set of normal ranges.  Each laboratory in the USA has to generate their 
own normal range.  The scales are not comparable, So follow up tst 
results done at another lab may not be accurately compared with teh 
results obtained at the first lab.. anothe problem is that there is 
tremendous consolidation in the laboroatory world with bidding processes 
making it possible that your provider may end up sending later specimens 
to different labs.  It does not mean that any one lab is better than 
another, just different. 
Joe Murray 
Not Medical Advice 
Date:         Sat, 18 Nov 1995 13:53:45 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC disease and Fosamax 
Fosamax, Alendronate, is a newly available drug used to treat 
postmenopausal women with osteoporosis.  It does so by blocking 
resorption of bone. It may be important to make sure that a celiac 
individual does not have osteomalacia, or hyperparathyroidism before 
starting someone on the drug, as it might make it worse.  the issue of 
whether the drug is gluten free also needs to be established. 
This only one issue to be considered The potential interaction with 
hormone replacement needs to be addressed also. 
Not Medical advice 
Joe Murray 
Date:         Sun, 19 Nov 1995 17:07:36 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      gluten in normal diet 
Kemp Randolph asked how much gluten is in a normal diet and how much has 
been shown to have an effect on celiac patients? 
I estimate very roughly that a normal diet would include about 10-40 g of 
gluten per day. I estmate (also roughly) that normal wheat bread contains 
about 0.04 grams of gluten per gram of bread. 
To the best of my knowledge, the smallest amount that has been tested with 
patients and shown (biopsies taken) to have a definite effect is 0.1 gram 
per day (Catassi et al.).  The biopsies demonstrated an increase in 
intraepithelial lymphocyte count, one of the earliest signs of an effect. 
The challenge was on 10 patients (children) for 28 days each.  Four of the 
patients showed an increase in IgA antigliadin antibodies.  The intestinal 
permeability test remained normal. 
Washed wheat starch contains somewhere between 0.001 grams and 0.1 grams of 
gluten protein per 100 grams of starch.  The true amount is, in my opinion, 
not known because of problems with the analytical methods available for 
defining gluten bound to starch.  Also, the method of preparation affects 
the amount of gluten present on the starch.  Better washed wheat starches 
probably approach the lower limit and poorly washed starches may approach 
the upper limit. 
This is not medical advice in any legal sense. It is off the top of my 
head-- hence, let the reader beware.  Perhaps others on the list will check 
my numbers and comment or correct. 
Don Kasarda, Albany, CA 
Date:         Sat, 4 Nov 1995 09:45:41 EDT 
From:         Bill Elkus ( 
Subject:      CEL-PRO on Oats 
As promised, the following are comments from professionals on the CEL- 
PRO list about oats.  Our own __personal__ decision from reading the 
NEJM article and the CEL-PRO discussion is to not yet add oats.   Here 
are the factors which concern us: 
a) Oats seem to have a particularly significant cross-contamination 
problem with wheat.  The oats research project obtained specially pure 
oats which are not readily available to us, the regular celiacs of the 
b) The NEJM study had patients with only small amounts of oats eaten 
per day, and only for six months.  It could be that larger amounts 
and/or longer periods of time will show significant damage. 
c)  Only intestinal damage was checked. Damage can also occur in other 
systems of the body, and we all know that our personal feelings are not 
valid indications of whether a food is causing celiac-related damage. 
On the other hand, newly diagnosed celiacs with flat jejunal lesion 
showed recovery of the mucosal architecture whether or not oats was 
included in the gluten-free diet.  We all certainly hope that future 
research will validate and extend the NEJM  oats study. 
The listowners of CELIAC take no 'official' position on this issue -- 
our job is to make the information available to you so that you can 
make an informed decision.  So here is their discussion, with minor 
editing and the names removed at their request, so that each 
of you can judge for yourself .... 
The Listowners 
-----Edited CEL-PRO discussion follows. ---- 
***Disclaimer - this is NOT medical advise, it is a general 
discussion of the oats issue.  See your own doctor for 
application to your particular situation *** 
I will start off the oats discussion by commenting that this is probably 
the single most comprehensive study of the effects of a grain on 
celiacs.  The earlier  evidence for oats as a deleterious agent in 
celiac disease was based a very small # of patients or case studies. 
reading the report in the NEJM this week would suggest that oats are 
safe for most uncomplicated celiacs.  There are however some 
reservations about the study.  Severe celiac disease was an exclusion, 
there were some drop outs in both the oats and the control groups and 
patients with complications were excluded.  If the findings are 
generalisable to the whole population of celiacs then it would certainly 
make life a lot easier. 
I have a concern about whether oat flour is reliably free of 
contamination with barley/ wheat. Also what would happen if we challenged 
a celiac with high doses of oat flour, greater than the 50g used in 
this study. Also would oat flour protein produce any of the subtle 
changes seen in the rectum with enema challenge. 
Here in Finland [where the NEJM study was done] there are mixed 
feelings about oats. Our colleagues from Kuopio have done a very good 
study, and in fact the study is going on. Five year follow-up results 
will tell us more, the authors are this autumn rebiopsing the coeliacs 
eating oats. Within our Celiac Disease Study Group we have discussed 
this, and we are going to discuss the item within the 
expert team of the Finnish Coeliac Society. At this point I want to say 
some words regarding children. 
Today we are not going to allow coeliac children to eat oats. We are 
first going to perform a study, our ethical committee has accepted our 
protocol.We are also going to look at minor jejunal changes in the 
*normal* mucosa revealed by immunohistochemistry. Again, the oats 
producer will provide us the oats for the study (same deep-freezed 
tested batch through the whole study). If no harm is seen, oats will be 
accepted also for children and this is important in our country, we by 
tradition consume oats. Then another story is whether all oat flour 
products at our market are clean. This is a real practical problem and 
we will study this. As you probably know, in Ireland the oats was 
contaminated, Dr. Conleth Feighery and colleagues used in their study 
oats from a German producer, tested not to be wheat contaminated (from 
the fields and mills). The Irish study pointed at the same direction as 
the Finnish one (9 adult coeliacs challenged with 50 g of 
oats for 3 months), oats was tolerated. The authors also looked for 
immunological activation in the mucosa, no changes were seen (paper 
presented at the 8th International Congress of Mucosal Immunology, San 
Diego, July 1995, abstract Srinivasan et al. Oats cereal is not 
immunogenic in coeliac disease. Clin Immunol Immunopathol 1995;76 
(part 2):S72). 
I would agree with [#2 above] about caution.  I would like to see the 
longer follow up data before telling my patients they can eat gluten. 
If oats have a weak deleterious effect it may take a lot longer than 
wheat to produce changes that are apparent on microscopy. 
Could the use of the gluten reduced starch have had a confounding 
effect on the study. The symptom scores seemed not to be very 
discriminatory in that the control group in remission had a similar 
score to the newly diagnosed celiacs. 
[editors note -  the Finnish study was of celiacs who consumed low- 
gluten wheat starch.  As we know, this is an issue of considerable 
controversy.  Many European countries consider this perfectly safe, 
but in the US most celiac groups do not.  It the US groups are correct, 
then celiacs consuming wheat starch and oats might have abnormal 
results compared with celiacs consuming no wheat starch and no oats, 
but the Finnish study would not have discovered that since it compared 
the oats group to control group which also consumed wheat starch] 
The low amount of avedin 1.2g of avedin/ 60 grams of oats is not very 
much by comparison and may take a lot longer to generate damage. 
I am uncomfortable with the conclusions of the authors that it would 
help compliance to give patients the oat option with the knowledge 
that there is only a little protein in it. Are they likely to be any 
more compliant or will they just add oats to their unrestricted diet. 
If I am going to recommend to patients that they can eat moderate 
amounts  of oats it will be to patients who are most likely to be 
compliant with the dietary restrictions on wheat, barley and rye, and 
who wil come back for follow up. These are probably not the patients 
likey to benefit most from easing restrictions.   Five year follow up 
data would be more reassuring. Also the comments about purity of the 
oats is important to keep in mind. It would have been interesting to 
look at the serological markers in these patients. 
I just got back from a meeting in Europe on the epidemiology of Celiac 
Disease.  There was a big discussion within the scientific community 
present at the meeting about the NEJM paper on oat tollerance in CD. We 
all had a mixed feeling about the conclusions of the study and my 
position is enterely in line with [the authors of #1, #2 and #3] 
The results of Kuopio group published in NEJM are probably changing 
our dietary recommendations. [The author of #1] has recently 
discussed the situation in children. The study has been carried out in adults, 
and in adults the demand to change dietary recommendations is strong, 
as we have noticed during the last days. 
I think adult celiac patients can switch to oats containing diet under 
strict follow-up. The amount of oats tolerated, the long-term effect 
of oats, and the importance of gliadin contamination has to be 
investigated, however. 
I recommend to my CD  patients that they should undergo gastroscopic 
examination 1-2 years after starting oats-containing diet. Some 
antecedent information of the mucosal architecture should be available 
 as well. If not, a duodenal biopsy should be taken even before 
starting of oats. By this way we also can observe possible 
minorinflammatory changes such as an increase in IEL or alpha-beta 
T-cell receptor bearing lymphocytes. 
If this arrangement sounds too laborious, at least a strict follow-up 
by physicians and dieticians are essential. The follow-up comprises 
general well-being, signs of malabsorption and EmA or AGA analysis. 
I would agree with [author of #5] that it may be reasonable to 
introduce to certain well controlled and already compliant patients. 
50 grams is quite a small amount and 6 months is not long.  I agree 
that in those patients that follow up biopsy possibly including a 
more senstive markers for reaction that simple architecture is needed. 
However I fear that limiting intake to 50 grams, the issue of 
contamination, compliance with follow up will be difficult in our 
setting due to cost and other factors. Many patients with celiac 
disease have little or no follow up. 
Is any one aware of the % of patients who don't follow up? This is a 
difficult if not impossible question in the US due to people moving, 
health insurance mandated changes in doctor etc. 
Date:         Thu, 23 Nov 1995 11:43:27 +0000 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) 
Subject:      Gluten Free and Cost Free (UK) 
In the UK, in spite of the best efforts of our government, we retain the 
vestiges of our National Health Service. Under this system medications 
are provided free of charge or at a uniform flat charge. Gluten Free 
breads, biscuits, flour etc have, for many years, been available to 
people diagnosed with Coeliac Disease. 
Today we had, as far as I am aware, our first success for a person with 
autism. The young boy's physician was sufficiently impressed by the 
changes he had seen to prescribe gluten-free products on the NHS. 
(totally free of charge for children.) If the bureaucrats who monitor 
such prescriptions are not satisfied they can challenge the decision and 
if they are successful the physician must pay out of his own pocket. 
Of course, the physician could challenge the decision and the veracity of 
the opioid excess theories of autism and the effectivenes of 
gluten/casein free diets would be decided in a court of law. This should 
be entertaining - perhaps the government will be forced to invest in a 
decent scientific study. 
Perhaps we can then celebrate Thanksgiving day over here. 
Paul Shattock 
Date:         Sun, 26 Nov 1995 00:09:06 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      endoscopy and biopsies 
There was w recent description of a biopsy preformed on an adult.  The 
practise of and the experience of having an endoscopy differ 
significantly from individual to individual and from country to country. 
The person from the Netherlands described a endoscopy done without 
sedation.  The use of sedation can dramatically alter the perception and 
recollection of the proceedure.  This of course can alter the way people 
feel about having it done.  Other factors such as supportive staff, size 
of the scope, local anaesthesia, preparedness of the patient, anxiety and 
health status all play a part in the experience. 
The use of sedation for routine endoscopy varies from country to country 
and from practise to practise. In the US currently most endoscopy would 
be done with sedation. Modern sedating drugs aim to induce relaxation, 
and often amnesia for the event.  The patietns are conscious in the sense 
that they can follow verbal requests, breath on their own and protect 
their airway. 
If you are to have a biopsy talk to the endoscopist methods to make it as 
little uncomfortable as possible. 
Not Medical Advice 
Joe Murray 
Date:         Sun, 26 Nov 1995 00:37:13 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      re excessive thirst in a 8 yr old celiac 
The single most important disease that causes escessive thirst, tiredness 
and increased urination is diabetes.  These symptoms need urgent medical 
attention without any delay whatsoever. 
There is an association between Diabetes mellitus( juvenile type ) and 
celiac disease due to similar genetics. 
Not medical advice 
Joe Murray 
Date:         Wed, 29 Nov 1995 10:55:04 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and tropical sprue 
Tropical sprue is a condition that can produce changes in the intestine 
that are similar to celiac disease.  It happens to people who have been 
in highewr risk places , southeast asia and south america.  It is 
treated with antibiotics and folic acid with goood and prompt resolution 
in most cases. If there is a question of tropical sprue then usually it 
more sense to treat for that first before trying a glutenn free diet.  It 
is said that the damage form tropical sprue does not get as severe as 
that of celiac disease, but it may be very hard to distinguish. 
Parasitic infestations also need to be considered in people returning 
from underdeveloped areas. 
Not medical advice 
Joe Murray 
Date:         Thu, 30 Nov 1995 11:37:02 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      malt in cereals 
Beverly Sosulski wrote: 
)Kelloggs products contain more than 0.02g/kg of Gluten and 
)are toxic to Coeliacs. 
I would be interested in learning how the amount of 0.02 g/kg was arrived 
at.  I would also like to point out that, to the best of my knowledge, such 
an extremely small amount of gluten has never been demonstrated in any 
scientific way to be harmful to celiac patients.  To put this quantity in 
other ways, it is 0.002% and a normal serving of cereal, say 50 g, would 
have only 1 mg of gluten in it at the 0.02 g/kg level. 
I am not saying that this low level isn't harmful, particularly for someone 
in a debilitated state. The question has never been addressed adequately in 
a scientific way.  I say, on the other hand, there is a possibility (my 
educated guess based on what I think is a reasonably good knowledge of what 
testing has been done) that for the average celiac, such a small amount is 
not harmful.  For example, in the recently published study on oats (Finnish 
study), the patients were fed a mixture of oats and wheat starch. 
Accordingly, they were probably ingesting more than 0.02 g/kg of gluten 
(from the wheat starch, which apparently contained 0.74 mg of gluten per 
gram of starch).  Recovering celiac patients continued to recover 
(Janatuinin et al. NEJM 1995: "We found that the use of oats by patients 
with celiac disease as part of a gluten-free diet had no unfavorable effects 
on adult patients in remission and did not prevent symptomatic and mucosal 
healing in patients with newly diagnosed disease.") 
Not medical advice. 
Don Kasarda, Albany, California 
Date:         Fri, 1 Dec 1995 12:40:12 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      0.02 grams per kilogram 
I thank Beverly Sokulsky for her comments and explanations. 
I do have a number of reservations about various aspects of what Mr. Howarth 
has said.  I don't have time to go into great detail, but some of my past 
postings are pertinent.  I shall just make a few comments. 
1.  I don't think there is any analytical method that meaningfully and 
accurately measures harmful proteins or peptides (they are not always the 
same) on starch or in other foods at the 0.02 gram per kilogram level.  So 
it seems to me that to base a regulation on that number is rather arbitrary. 
2.  I don't think there is any evidence that gluten at the 0.02 gram per 
kilogram level causes increased incidence of cancer in celiac patients and 
some evidence to the contrary. 
As always, I emphasize that we do not have as much scientific information as 
we would like, and people may choose validly not to risk ingesting any food 
that might in any way be contaminated with gluten (which carried to an 
obviously absurd extreme would cause one to give up food).  I am, however, 
frequently disturbed by the way arbitrary decisions and pronouncements by 
various people become accepted by the celiac community as based on valid 
scientific results.  I ocasionally try to point out when statements made are 
invalid or go beyond what may reasonably be inferred from the scientific 
work that has been done so far. Of course, new information is being 
developed continually--as in the case of oats.  What was considered 
scientific fact some years ago must give way to new (usually better) 
experimental evidence. I assume that almost everyone on this list would 
prefer to start with valid information from which to proceed to sometimes 
necessarily arbitrary decisions about his or her diet and behavior. 
Don Kasarda, Albany, California 
01-27-96 11:44pm 
Date:         Tue, 12 Dec 1995 10:20:09 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: oats and celiac children 
I have noticed that some people refer to using oats in celiac children as 
though that were generally acceptable.  I do not beleive that to be so. 
There have been some studies that have shown oats to damaging to children 
with celiac disease.  The preliminary report in the new england journal 
of medicine I do not interpret as a license to eat oats for all or even 
many celiacs.  The study looked at a small amout of specially prepared 
oats in adults without severe celiac disease. No conclusions can be drwn 
about children from this study. 
I am not recommending to my patients that they can eat oats.  There needs 
to be a lot more infomration available before oats can be used freely if 
at all by celiacs.  If a patient want s to use oats I suggest that follow 
up biopsies would be prudent. No body knows if the antibody tests 
availalbe will be sufficient for the purpose. 
Joe Murray 
Not medical advice 
Date:         Tue, 12 Dec 1995 10:38:08 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and lab charges 
My suggestion is to find out from the billing service for the lab what 
the codes actually mean and then hassle the insurance company.  Dont 
accept the initial response and keep going higher in the insurnace 
company. Kepp records of who you speakj to and what they told you. put as 
much as possible in writing.  $20 dollars is rediculous. 100 to 200 is 
usual.  Good luck in your battle with the insurance company. 
joe murray 
Date:         Tue, 12 Dec 1995 16:15:38 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: Query:  sprouted wheat 
Reply from Don Kasarda, Albany, California 
Most sprouted wheat still has gluten or gluten peptides remaining.  Although 
the sprouting begins enzymatic action that starts to break down the gluten 
(a storage protein for the plant) into peptides and even amino acids. 
Generally this is not a complete process for sprouts used in foods so some 
active peptides (active in celiac disease) remain.  I don't know anything 
about Bioguard specifically, but I would be cautious about it until the 
company can say on what basis they are claiming "gluten-free."  For example, 
how have they tested this? 
)I just purchased an antioxidant from a health-food store, called "BIOGUARD". 
)The label reads:  "Bioguard is composed entirely of hydroponically grown 
)wheat sprouts.  Hypoallergenically free of wheat gluten and yeast." 
)J. F. Levin, Lit/Lang, UCR.  909 787 5007 
Date:         Wed, 13 Dec 1995 15:33:07 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and sjogren's disease 
There is an increased assocaition between the two disease's, probably 
because both are autoimmune diseases.  One scandanavian study ( small ) 
suggest that 10% of sjogren's patients also had celiac disease. 
Joe Murray 
Not Medical advice 
Date:         Mon, 18 Dec 1995 12:10:58 +0000 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK) 
Subject:      Re: urinary tract symptoms 
On Thu, 14 Dec 1995, ANDREW E. STEVENSON wrote: 
) I'm interested in the recent discussion on urinary tract symptoms and their 
) possible relation to gluten. One of the unexpected changes in our 
) daughter once she went gluten-free was in her bathroom habits. Before her 
) diagnosis, she always insisted that she never had to urinate, and she usually 
) went only twice a day. She had "accidents" a few times a week. Once she began 
) the diet, we were amazed that she began urinating regularly every few hours, 
) we would have expected a child to do. Now, she rarely has an accident--it 
) to happen only when she accidentally ingests gluten. It's as though something 
) about her reaction to gluten makes her unable to monitor her bladder 
(much interesting and supportive data snipped) 
I am sorry to have been so slow in stepping into this discussion but 
"better late than never". 
I appreciate that Coeliac Disease and Autism are different and that it is 
by no means universally accepted that gluten is of relevance in the 
latter. Nevertheless, there are similarities and, I suspect, certain 
areas where there exist commonalities in terms of symptoms and causation. 
Our studies have centred around autism and so any comparisons which you 
wish to make with Coeliac Disease must, dear reader, be a matter for your 
own determination and decision. 
In our (unpublished in formal journal) study we found clear evidence of a 
general reduction of sensitivity to sounds, taste and proprioception. Our 
attempts at visual tests were inadequate but the student concerned did 
perform some limited tests on one subject for the perception of pain. 
(This last study was difficult to replicate for ethical reasons but the 
subject of the study was the student's brother and in such situation 
ethical considerations tend to be ignored.) It should be noted that 
within this general reduction of sensitivity there were certain exeptions 
where comparative hypersensitivity exists (for example the particular 
frequency which the door-bell uses or Whitney Houston's top note) and 
distress could result. 
OK we are extrapolating from these situations but if these senses are 
affected it is likely that others will be as well. An example would be the 
peculiar sense of balance which is exhibited by people with autism. We 
subscribe to the theory that gluten (and casein) derived peptides with 
opioid activity are reducing tramsmission in the brain and, thereby 
reducing the perception from all the senses. In the case of the "balance" 
situation, we would regard the unusual skill as the consequence of the 
inhibition of transmission of impulses between the semi-circular canals 
of the ear to the interpretive centres of the brain. 
Thus, when the source of the opioids is removed, the sensations will get 
through and the situation as you describe will result. In the same way, 
when the gluten is re-introduced, the opioid peptides would re-appear and 
exert their effect. It is interesting that some folk have reported that 
upon initiation of such interventions their child apears, temporarily at 
least, to urinate much more frequently than before. 
I appreciate that I have missed out most of the explanatory information 
but my posts have a habit of being overlong anyway. Congratulations on 
reaching this far. 
Paul Shattock 
Date:         Wed, 20 Dec 1995 17:27:18 -0500 
From:         Kevin Lawson ( 
Subject:      Re: Blood Test Lab 
The serological diagnosis of CD is made by these three tests (IgG and IgA 
anti-gliadin, endomysial (EMA) and reticulin (ARA). To obtain meaningful 
results, it is essential that the tests be performed on well-standardized 
test kits by experienced laboratory personnel. Because of these limitations 
the results may vary from laboratory to laboratory. I would advise sending 
the results to laboratories that specialize in these tests. 
Dr. Vijay Kumar 
Date:         Thu, 21 Dec 1995 11:59:55 -0500 
From:         Kevin Lawson ( 
Subject:      Re: need advice 
Celiac Disease can easily be diagnosed by simple blood tests. These blood 
tests, when performed by experienced laboratory personnel are very specific 
for CD. If you believe you and your family member have CD and it is 
precipated by wheat, I recommend that you have blood samples sent to a 
specialized lab. I believe several have been mentioned on this list in 
previous postings. 
Vijay Kumar 
President IMMCO Diagnostics 
Date:         Fri, 22 Dec 1995 15:44:27 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC disease and response to GFD 
The issue of how long it takes to get a response to the start of a GFD in 
a celiac has to be individualised to the patient and the type of symptoms 
the patient has.  Most patients notice some change in the symptoms within 
days  or 1-2 weeks of starting the GFD. A few will take longer to start 
to respond.  "start to respond means less severe symptoms not no 
symptoms. The more exacting the gluten free diet is the faster there may 
be healing.  Lactose intolerance may take longer to get better so 
avoiding milk products for a while these people sometimes help. Rare 
complications may delay healing. 
The most common reason for a deal in remission of symptoms is a diet that 
is NOT GF. 
Dermatits herpetiformis responds more slowly to the GFD. It may take 
months for theitchy attacks to go away, sometimes even longer.  Hence 
Dapsone and other drugs are used to suppress the symptoms of the itch. 
These usually do this quite effectively, but need close monitoring as 
they can be associated with some side effects. 
Not Medical advice 
Joe Murray 
Date:         Fri, 22 Dec 1995 16:01:29 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: fat malabsorption, investigation 
The finding of increased fecal fat in the stool when measured over a 2-3 
day period is almost always a sign of GI problem, not irritable bowel 
syndrome. There are literally 100's of causes of steatorrhea( thats the 
medical term) some have normal mucosa, some do not. A normal d-Zylose 
test implies it is some  problem with normal mucosa that is causing fat 
but not always. Pancreatic or liver problems can cause fat malabsorption 
and have nornal biopsies of the intestine. 
This is  a very difficult area of diagnosis as there are so many causes. 
Not Medical advice 
Joe Murray 
Date:         Fri, 22 Dec 1995 16:44:41 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: diagnosis, blood tests and biopsies 
There have been many recent statements on the list that I feel I should 
reply to regarding the diagnosis of Celiac disease. 
The 2 most important and accepted criteria for the diagnosis of CD in 
adults involves the demonstration of damage in the intestine and a 
subsequent response to the elimination of gluten from the diet. This 
combination is usually very adequate to identify the disease.  There are 
caveats to this. One the biopsies should be taken while the people has 
been on a normal ( as opposedto gluten reduced or free diet), two 
several separate biopsies should be taken from the intestine( during the 
same proceedure) 3. these biopsies need to be properly oriented and 
stained ( quality varies dramatically), 4. An experienced pathologist 
needs to read these biopsies and recognize that there is a suspicion for 
celiac disease. 5.  The GI has to interpret the results appropriately. 
Sometimes the pathologist will describe the abnormal findings but not 
mention celiac disease as a possibility.  If the GI is aware of the 
findings relevance to celiac disease he may not make the connection. 
Single biopsies may miss patchy changes. 
Blood tests( endomysial, reticulin and gliadin ) have been around for 
several years in various forms.  These tests when used in research 
studies in europe mostly have been shown to coorelate well with classic 
celiac disease found on biopsy. These tests are not perfect.  There is 
much variation between labs.  There are people who have celiac disease 
whose blood tests are negative but who have it on biopsy. There are some 
people wo may have false positive tests( that is have a positive test but 
dont have the disease), though this is rare. 
Whether blood tsts alone can replace the need for biopsy is still 
undecided and broader experience in general usage will determine how well 
they stand  up to the test of time. 
This all goes to illustrate that the diagnosis is not simple and 
sometimes it can provide problems for patient and doctor alike. 
It also shows that quality in all things makes a big difference. 
Sometimes cost containment does not not deliver quality. For those of us 
in the USA where HMO's PPO's and other managed care systems are growing 
there may be decreased access to quality specialty care due to const 
containment measures that limit patients access to special services or 
make it very difficult to get good care for conditions that are rare or 
ill understood. Celiac disease will need vigorous representatioin at all 
levels to get it on the managed care map and keep it there.  How can one 
influence health care decisions.  If you are an individual who has choice 
over what kind on health insurance you get ( lucky you if you can afford 
it) ask a lot of quastions about how they deal with rare diseases?, do 
they allow access to academic centers? what is the referral process for 
out of network referrals?  etc. If you work for a large corporation, try 
to get on the employeee committees that oversee negotiation with health 
insurers, etc. They have to pay at least lip service to quality issues. 
Not medical advice 
heck it's not even good political advice 
Joe Murray 
Date:         Tue, 26 Dec 1995 09:31:42 -0500 
From:         Kevin Lawson ( 
Subject:      Re: need advice 
There are three serum tests (EMA, ARA, AGA) for the detection of celiac 
disease. According to the criteria set forth by the European Society for 
Pediatric Gastroenterology and Nutrition (ESPGAN), two of the three 
serological tests must be positive for the diagnosis of CD. EMA has proven to 
provide the highest degree of specificity and sensitivity. Results will vary 
somewhat according to the expertise of the laboratory and the experience of 
the laboratory personnel. 
If you have any questions, I would be glad to hear from you. 
Vijay Kumar, Ph.D., F.A.C.B. 
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