Expert Postings
July 1995

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

Table of Contents

 
 
This file contains postings made by the following professionals: 
 
   Dr. Ivor Hill--a pediatric gastroenterologist at the University of 
      Maryland School of Medicine in Baltimore.  Dr. Hill is attempting 
      to establish a network of collaborators that will be involved in 
      gathering preliminary data to support his belief that if we 
      actively look for CD we will diagnose many more cases at an earlier 
      age. 
 
   Donald Kasarda--a grain specialist working for the United States 
      Department of Agriculture. 
 
   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:         Wed, 5 Jul 1995 11:38:18 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and self diagnosis 
 
I must disagree with the notion that celiac disease is like any other 
allergy.  It certainly resembles allergy in that avoidance is the 
treatment, however the damage that is caused both to the intestine and 
subsequent effects on other parts of the body due to the malabsorbtion 
are not like allergies. 
 
Further, depending on the lack of symptoms as a sign of wellness may not 
be enough in following up celiac disease especiallt that is diagnosed in 
adulthood.  It is well recognised that significant damage can be present 
in the intestine in the absence of symptoms especially in family members 
of patients with celiac disease. 
 
I define a satisfactory response to the GFDas  signs of healing of the 
intestine.  one sign may be loss of symptoms, but in many it is not 
enough. 
 
Celiac disease also needs to be differentiated from simple maldigestion 
of wheat, which is very common and has none of the longterm implications 
of CD.  in the situation of simple wheat intolerance ( without evidence 
for CD) all one needs to do is to avoid wheat to the extent that symtpoms 
are avoided.  this is not the same as the complete lifelong avoidance of 
gluten required in CD. 
 
(not medical advice) 
Joe Murray 
Iowa 
========================================================================= 
Date:         Wed, 5 Jul 1995 11:54:28 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and mediacl professionals 
 
What can the lay community do about informing the mediacl community about 
celiac disease. 
 
1.  If you have a support group and have identified an interested Dr or 
even one who was helpful or even listed well: invite he/she to liase with 
your group.  Provide the MD with information from your own sources.  If 
you have a big group buy the MD a copy of Micheal Marsh's book 'Coeliac 
disease" by blackwell scientific publications 1992.  Invite to your 
meetings.  Remenber they may have inherited some misconceptions about 
celiac disease.  If they are/become knowledgeable encourage to speak at 
hospiatl mediacl rounds to inform their colleagues about celiac disease. 
 
If you have any family members who are doctors send them info too. 
 
Direct mailings are not likely to get thru the mass of junk mail that 
most MD's get. 
Publishing articles in medical journals relating to celiac disease does 
occur, maybe not as much or on as many related topics as we would like 
but some of us try.  For thoe of us in academics review articles are not 
considered as important as new research reports. few research reports on 
CD emanate from the US because there are so few researchers interested in 
it and there is a lack of research funding for it. 
 
If there is research being doone in academic centers then the faculty 
doing the research will usually have an interest in what their researching 
and the disease that it is focussed on. They then enthusiastically teach it 
students and trainees who will absorb some it and carry it out with them 
into practise.  That is not a fast process but it has happened with 
infalmmatory bowel disease largely due to the efforts of the CCFA( crohn's 
colitis foundation of America) If anyone knows any really rich people with 
celiac disease suggest that a foundation to support celiac disease research 
is sorely needed 
 
Joe Murray 
University of Iowa 
========================================================================= 
Date:         Wed, 5 Jul 1995 12:00:27 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and dapsone 
 
Dapsone does not treat celiac disease, infact it has no effect on the 
small intestinal damage at all. 
 
Dapsone IS used to relieve the itching and suppress the skin rash from 
DH and has been used for this purpose for may years. It does not block 
the intestinal damage from gluten that occurs in DH. 
 
Joe Murray 
University of Iowa 
========================================================================= 
Date:         Wed, 5 Jul 1995 12:05:41 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and jewish people 
 
People of jewish origin are quite prone to celiac disease.  There are 
many studis done in Isreal documenting an increased prevalence there. 
The single largest ethnic group among the causcasians that I see 
ifddentify themselves as jewish. Jewish people also have a higher 
incidence of crohn's disease and ulcerative colitis.  these assciations 
are well recognised by the medical communities. 
 
Joe Murray 
University of iowa 
( not mediacl advice) 
========================================================================= 
Date:         Wed, 5 Jul 1995 12:26:46 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Medical students and simple answers 
 
The training of mediacal students consists of 2 major stages 
 
1. stuff their heads with as much background information 
anatomy, physiology biochemistry, pathology etc etc 
 
2. expose them to actual clinical situations where they are supposed to 
draw on that info to explain/ treat the patients problem. 
This process may lead to loss of curiosity in the face of lack of time 
and sleep and the need to come a diagnosis rapidly.  The trend toward 
managed care where a doctors effectiveness may be measured by howmany 
patients he can treat himself at the lowest cost with teh least use of 
consultants will likley make the trend worse.  The same push for fast and 
dogmatic answers occurs in countries where there is limited access to 
medical care and greatly overworked doctors. 
 
Humility is a trait that has not been in high regard in modern culture 
and does not seem to be prized in individuals who have major 
responsibilities such as lawyers,business executives, or doctors. 
 
All we can do in academic medicine is to try to teach the value of 
humility in our daily endeavors to our students.  We cannot diagnose 
everything, treat everything, or understand  everthing about the human 
condition. There is often more than one right answer and many wrong ones 
previously taught as dogma. 
 
Not medical advice 
Joe Murray 
University Of Iowa 
========================================================================= 
Date:         Thu, 6 Jul 1995 17:00:45 PDT 
Name:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      vinegar 
 
Comment from Don Kasarda, Albany, CA. 
 
This is not medical advice, etc., etc., etc. Each of you should follow your 
own inclinations, etc., etc., etc.  Some people may not tolerate vinegar, 
etc., etc., etc. (Wasn't Yul Brynner great in The King and I?) 
 
I am a research chemist specializing in the gluten proteins, but I have not 
done any research on vinegar, because I don't think it would be in the least 
worthwhile. 
 
Given the above caveats, in my personal opinion, this whole vinegar thing is 
simply absurd.  The only vinegar that there is the slightest reason to think 
might have any harmful peptides (harmful for celiac patients) in it would be 
barley malt vinegar.  My mind boggles at all those people out there 
searching for gluten-free vinegar. 
========================================================================= 
Date:         Fri, 7 Jul 1995 10:50:46 PDT 
Name:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      vinegar II 
 
Comments from Don Kasarda, Albany, CA  (kasarda@pw.usda.gov) 
 
I am gratified by the response to my comments about vinegar.  I think we are 
getting somewhere.  I was trying to get your attention and it seems to have 
worked. 
 
I am trying to look into some of the questions about production, possible 
contamination, individual response vs. celiac disease, etc., etc., etc. 
(sorry, couldn't resist).  But time is very hard to come by, and it may take 
a few months before I am ready to comment further.  I do appreciate having 
another food scientist, Leanne Wenzel, providing comments to the list 
because it is a big job trying to educate non-scientists, non-biological 
chemists, about the chemistry side of things.  Everything is very 
specialized these days and I often don't understand what the molecular 
biologists in the lab next door are doing, so I can sympathize, but if I 
spend much more time on celiac disease, I am going to have problems with my 
superiors. 
 
For the moment, I am going to take some shortcuts and pontificate because I 
just don't have time for more. 
 
Forget gluten testing.  It is for specialists only because it is fraught 
with too many possible complications. 
 
Barley malt may not have proteins, but it does have parts of harmful 
proteins, called peptides, that are produced during malting or germination 
of barley (even some food scientists don't seem to understand that).  Some 
of these peptides are likely to be harmful to celiac patients.  The Tesco 
supermarket people may or may not understand this and I can't say whether 
their barley malt vinegar is or is not safe without knowing how they make it. 
 
To Mike Johnson:  If you will send me your mailing address, I will mail you 
a photocopy of an article I wrote many years ago (but I think it is still 
not too out-of-date) on gliadin proteins in relation to celiac disease that 
I think will help you understand gluten proteins. Gliadins are a major part 
of the gluten proteins. 
 
I agree with Leanne that the list can be frustrating to a scientist, but an 
enormous amount of good is coming out of it.  If we can just keep the level 
of misinformation to a minimum! 
========================================================================= 
Date:         Sun, 9 Jul 1995 16:15:35 PDT 
Name:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      information 
 
Comments from Don Kasarda, Albany, CA 
 
Bill Elkus wrote: 
 
)In the meantime, those on the GF side of this issue should at least 
)understand that it is the position of most celiac societies in the US that 
)grain vinegar must be avoided.  As long as this is the case, many people on 
)this list will not eat it. 
 
This certainly seems to be true. Should the quality of information coming 
from "most celiac societies in the US" be of concern to this list? 
========================================================================= 
Date:         Mon, 17 Jul 1995 10:43:09 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and biopsy 
 
The necessity for a biopsy to diagnose celiac disease is currently 
without an alternative.  The risk of a biopsy when carried out by a well 
qualified physician is extremely low.  The issue of whether a patient 
needs to be on a gluten challenge is one that needs to be discussed with 
the doctor beforehand.  How much gluten, for how long and when to do the 
biopsy should all be discussed well ahead of the biopsy. Please bring up 
the topic if the doctor does not mention it. I agree that the decision is 
the patients in all matters related to their health.   the doctor has to 
agree to do something if he feels that it is reasonable and indicated. At 
a recent meeting meeting in Baltimore it was agreed by all the 
professional participants that a biopsy isa required to make the 
diagnosis of celiac disease. 
Not medical advice 
Joe Murray 
========================================================================= 
Date:         Mon, 17 Jul 1995 10:58:17 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and diverticulosis 
 
As far as I know thee is no connection between diverticulosis of the 
colon and celiac disease.  Symptoms may be similiar. Diverticulosis is 
very common in the general american population affecting 40% of people 
over 50 years and I would expect that it would affect the same % of 
celiac disease patients 
Joe Murray 
Not Medical advice 
========================================================================= 
Date:         Mon, 17 Jul 1995 11:16:37 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and diglycerides 
 
While tese are derivatives of fats carbohydrate chains may be used a 
binding substance in their preparation. and this needs to be checked out 
with the manufacturer. 
Canned vegetables are not desirable in any ones diet because there is 
loss of the vitamins in the canning process and often there may be a lot 
of salt.  fresh vegetables are much preferable for many reasons including 
the relativly safety for celiacs. 
Not Medical advice 
Joe murray 
University of iowa 
========================================================================= 
Date:         Mon, 17 Jul 1995 11:07:14 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and "elephant POOPS" 
 
The escription by several posters to the list conferenece describing 
daily elephant poops is suggestive of malabsorptive stoold especially if 
these are smelly and lighter colored.  Discuss this with your 
pediatricians and ask about malabsorbtion and celiac disease.  The term 
"wheat allergy" when used in combination with elephant poops makes it 
highly suspicious for celiac disease.  Non-permanent gluten intolerance 
is probably quite rare. 
Not medical advice 
Joe Murray 
University of Iowa 
========================================================================= 
Date:         Mon, 17 Jul 1995 11:56:14 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and weight loss 
 
Continued weight loss or new weight loss in an adult celiac may be due to 
the diet being lower in calories than before. However the absorption of 
food should be better resulting in a greater availability of nutrition to 
the individual.  Failure to gain weight in a malnourished patient should 
suggest non-compliance with the GFD, a complication of celiac disease or 
the possibility nor an alternative diagnosis either with celiac disease 
or instead of it. 
These problems are not simple and require careful nutritional and GI 
review to address the problem. 
Not Medical advice 
Joe Murray 
University of Iowa 
========================================================================= 
Date:         Mon, 17 Jul 1995 12:07:27 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and dementia 
 
There are some reports of people with mental decline that resembled 
alzheimers disease who had celaic disease diagnosed around the same time. 
There is likely a connection thought it is nor clear how exactly. 
Joe murray 
Iowa 
Not medical advice 
========================================================================= 
Date:         Mon, 17 Jul 1995 12:20:57 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and Sjogren's disease 
 
Yes there is an association betwen Sjogren's disease and celiac disease. 
In one scandanvian study a series of patients attending a rheumatological 
clinic for joint pains had gliadin testing done and 10% of the sjogren's 
patients had celiac disease.  it is likely the they occur due to the 
similar genetics predisposition. 
Joe Murray 
University of Iowa 
Not medical advice 
========================================================================= 
Date:         Mon, 17 Jul 1995 12:17:53 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and muscle weakness 
 
Muscle weakness in celiac disease could be due to mnay things including 
Myasthenia gravis 
lupus 
Low calcium or magnesium, potassium 
poor nutrition 
polymyositis 
neuropathy 
sjogren's syngdrome( fatique) 
Anemia, addison's disease 
This list is not organised as to the frequency of these things occur 
.. 
there are other inheritied muscle problems that can be seen but do not 
occur in any greater frequency in CD than other conditions. 
Not medical advice 
Joe Murray 
University of Iowa 
========================================================================= 
Date:         Thu, 20 Jul 1995 09:41:46 EDT 
Name:         Bill Elkus (Bill_Elkus@JEFCO.com) 
Subject:      Reichelt: ear infections, allergy, autism & gluten 
 
On 16 Jul 1995, Don Wiss forwarded the following (excerpted here) from Jack 
Challem, Editor of The Nutrition Reporter (TM) newsletter: 
 
)Michael, I'm sure you'll hear a lot of opinions. But I'll point to you to a 
)specific journal citation that confirmed what people have been saying for 
)years. The fundamental cause of ear infections is allergy, which causes fluid 
)retention in the ear, which creates a great breeding ground for bacteria. The 
)most common allergens for small children are milk and wheat. 
 
)Nsouli TM, "Role of food allergy in serous otitis media," Annals of Allergy, 
)September 1994;73:215-219. 
------------------------------------------------------------ 
I showed this to Dr. Kalle Reichelt, who had the following to say (quoted with 
his permission): 
------------------------------------------------------------ 
This is quite intersting because the IgA antibodies formed in the gut are 
transported to all mucous membranes in the body and may react with 
appropriate antigens. because intact antigens are taken up into the blood 
postprandially (1) and we have also demonstrated increased levels of IgA 
antibodies to gluten,gliadin and casein in some autistic patients (2,3); I 
can easily see a possible connection, where all mucosal membranes are 
irritated by the circulating antigen reacting with deposited IgA 
antibodies. 
References: 
1: Husby S et al (1985) Scand J Immunol 22:83-92. 
2: Reichelt Kl et al(1990) J Applied Nutr. 42:1-11 
3: Reichelt KL et al (1994) Develop Brain Dysfunct.7:71-85 
 
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:         Sat, 22 Jul 1995 00:05:00 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and biopsies 
 
I am intriqued by the story of a celiac having 6 endoscopies in one 
year.  It seems unlikely that celiac disease alone could necessitate that 
# of biopsies.  I presume these were for other reason like to treat a 
narrowing. If someone has a endoscopy with adequate biopsies of the small 
intestine which identifiy the abnormalities in the intestine, there is little 
reason to rebioipsy that person within 6 months unless there is a concern 
for some other problem.  It is too early to check for healing to do it 
less that 6 months after starting the diet. I have heard of people having 
a repeat biopsy after only 6 weeks to check for healing, that is too 
short a time. Some patients will not need another biopsy. 
The decision to rebiopsy and when is not simple and should be 
individualised to the patients situation. 
Not medical advice 
Joe Murray 
Univ of Iowa 
========================================================================= 
Date:         Mon, 24 Jul 1995 12:20:52 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and vaccinations5 
 
I would not regard most people with celiac disease as immunocompromised 
in the sense that people with AIDS or on chemotherapy or transplant 
patients would be considered immunocompromised,  So having someone with 
uncomplicated celiac disease in 
the household is not a contraindication for a child to get routine 
vaccinations even with live attenuated viruses. The immune defect if it 
is present with regard to resistance to infections is a reflection of 
hyposplenism and that sems to predispose to bacterial infections such as 
pneummoccal infection.  Pneumovax may be a good idea for older celiacs 
who have some evidence of hyposplenism ( seen on blood smear examination) 
There may be special circumstances in which celiac disease may cause more 
severe immune depression such as severe malnutrition or lymphoma. In this 
situation the live viral vaccinations may need to be avoided in household 
contacts 
 Not Medical advice 
Joe Murray 
Univ Of Iowa 
========================================================================= 
Date:         Wed, 2 Aug 1995 00:19:55 +0100 
Name:         "P.SHATTOCK" (hs0psh@ORAC.SUND.AC.UK) 
Subject:      Re: MALT AND BEER 
 
It is great to be able to contribute to a discussion of such significance. 
Like John Wisemen, I have oft succumbed to the pleasures of drinking 
Guinness in Ireland. I know that it is exported all over the world but 
unless you have tried it in the country of its origin you will not 
appreciate what a drink it is. 
 
Back to the point.  I was reading how after drinking Guinness John didn't 
get the reaction he expected from it and wonder if the method of 
manufacture of the malt has anything to do with it.  As has been pointed 
out, the barley grains are allowed to just germinate so that the starch 
is converted into fermentable sugar.  The grains are then roasted before 
these sugars are extracted.  The malt barley used in Guinness is roasted 
at a temperature considerably higher than normal beers and this leads to 
the much darker colour and burnt taste of the drink.  It may be that this 
heat causes a much increased breakdown of the proteins than would 
otherwise be the case. 
 
Another contributor has pointed out that the proteins would normally be 
filtered out of a beer (clear US type beer that is) but even then I would 
guess that some of the shorter peptide sequences could persist and cause 
problems. I believe but am not sure (See I admit I do not know 
everything.) that Guinness, like a number of other specialist brews, is 
filtered less enthusiastically than most of its rivals and will still 
contain some yeast etc. 
 
I have worked up quite a thirst writing all this - perhaps just a small 
one before going to bed. 
 
To John, Michael, Karen, Joe and all  --  Cheers. 
 
Paul Shattock 
========================================================================= 
Date:         Fri, 4 Aug 1995 16:59:49 EDT 
Name:         Jim Lyles (lylesj@CADCAM.ATG.GMEDS.com) 
Subject:      Unorthodox WWW Celiac Information 
 
Recently the list owners have become aware of a WWW (World Wide Web) 
home page suggesting that celiac disease is sometimes curable.  It 
also describes an unconventional treatment for celiac disease.  Here 
is a portion of the information on the page: 
 
WW ...If you have only had Celiac Disease for less than two years 
WW there is a possibility for a cure (not guarenteed).  Otherwise 
WW you must rely on one of two treatments. The first is to stop 
WW eating gluten (the gliaden protein) and is the best researched 
WW and most common. The second option is Dr. Hitzig's Fen/Phen 
WW treatment.  This option may allow the Celiac to ingest gluten 
WW safely... 
 
This is information that we have never seen before.  We requested 
more information from the owner of the WWW page, but did not receive 
a reply.  So we asked Dr. Ivor Hill to comment on this information, 
with the understanding that we would share it with the list.  Dr. 
Hill is from the University of Maryland's Celiac Clinic which hosted 
last month's celiac conference in Baltimore, and is well-qualified to 
comment on this matter.  This was Dr. Ivor Hill's response: 
 
IH Thanks for the information.  I was totally unaware of this 
IH physician and his ideas on treatment.  I have also not been able 
IH to find any of his work on celiac disease published in the 
IH reputable scientific literature - which is something that always 
IH raises serious questions in my mind.  If you can get any 
IH references please forward them to me so that I can read more. 
IH Until then I shall remain extremely skeptical about this form of 
IH therapy. 
IH 
IH I would also strongly caution any patients with celiac disease 
IH against the idea that if you treat celiac disease early there is 
IH potential for a cure.  It is much more likely that if you cure 
IH "celiac disease" the patient probably did not have it in the 
IH first place. 
IH 
IH Regards 
IH Ivor Hill (ihill@umabnet.ab.umd.edu) 
 
The list owners wish to remind all subscribers that web pages can be 
placed on the internet by anyone who wishes to do so, and that there 
is no overriding authority to verify the accuracy of any information 
you find.  The World Wide Web can be a wonderful repository of good 
information, but it also contains quite a bit of misinformation.  We 
are not suggesting which category this particular web page falls into, 
but would caution against taking anything from the web at face value 
unless you can find good references that independently support it. 
 
----- Jim Lyles, 200-2214@mcimail.com ----- 
--- speaking for the CELIAC list owners --- 
========================================================================= 
Date:         Thu, 3 Aug 1995 12:05:03 PDT 
Name:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      alcohol 
 
)From Don Kasarda, Albany, CA 
 
A recent message contained the following statement, which I think refers to 
distilled alcohol from grain being used in flavor extracts: 
 
)You may still have a difference of opinion about the potential of Gluten 
)contamination through the use of grain derived extracts as some chemists 
)believe they are removed during the extraction process. 
 
My question is:  are there ANY chemists who don't believe that gluten 
peptides are removed during alcohol distillation? 
========================================================================= 
Date:         Sun, 6 Aug 1995 00:51:35 +0100 
Name:         P.SHATTOCK (hs0psh@orac.sund.ac.uk) 
Subject:      Re: alcohol 
 
Don Kasarda has stated categorically, on a number of occasions, that 
vinegar cannot contain gluten or the peptides from gluten which could 
cause problems. I agree with him completely but with one little proviso. 
 
Originally, as the name implies, vinegar was prepared from wine which had 
gone off (vin aigre) and it still is in continental Europe. Unless some 
fiend has added gluten to it, this must be gluten free. In the UK and I 
believe in North America, vinegar is largely prepared from synthetic 
acetic acid - no gluten there. Of course, it may have been derived from 
alcohol which has been distilled from fermented barley but it is not 
possible for gluten (or peptide products) to distil in this way. Peptides 
and gluten are definitely not volatile and so will not be present in the 
vinegar. 
 
Now comes the proviso. This distilled vinegar would be colourless (White 
vinegar) but consumers prefer a brown product. The most likely source of 
the brown colouration is caramel aka burned sugar. It is possible that 
the sugars have been derived from malt but there are very much cheaper 
sources and, in any case, they should not contain gluten products. 
 
If anyone suspects a problem with vinegar, use vinegar from wine or apple 
cider or white vinegar. 
 
I am, therefore, agreeing completely with Don Kasarda's assertions. 
 
At the same time, I believe the list-members who have had a problem with 
vinegar. I would suspect that where this does occur the mechanisms do not 
involve a straight gluten reaction. 
 
Paul Shattock, School of Pharmacy, University of Sunderland, England. 
========================================================================= 
Date:         Wed, 16 Aug 1995 10:39:06 PDT 
Name:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      beer 
 
from Don Kasarda, Albany, CA  (kasarda@pw.usda.gov) 
 
I don't have enough information to evaluate the testing of the Negra Modelo 
beer (which I have had a few times and agree that it is good) in Germany. I 
would need a lot more detail about the electrophoresis mentioned and if 
ELISA was used, what the antibody preparation was and how the antibodies 
were prepared. My guess is that the testing is inadequate to prove the 
absence of any barley hordein peptides as this is a difficult problem.  Most 
proteins are broken down by enzymes during malting, so no intact hordein 
proteins will show up, but smaller pieces (peptides) may still be present 
and quite small peptides (13 amino acid residues) from wheat proteins have 
shown toxicity.  Whether the small peptides in beer retain toxicity is a 
question that has not been settled to my knowledge.  I think the best 
approach is to get assurance from the manufacturer that no barley, rye, or 
wheat was used in any stage of the process rather than relying on testing. 
However, should there be any, the amount of toxic peptides in beer is likely 
to be quite small and not likely to cause any immediate reaction in most 
celiac patients.  The person who has done some interesting recent work on 
barley peptides in beer is: Dr. Clare Mills, Institute of Food Research, 
Norwich, UK.  She might have some unpublished information available if 
someone in England would like to ask her about it.  I don't have her E-mail 
address or I would contact her myself. 
========================================================================= 
Date:         Sat, 26 Aug 1995 01:14:46 +0100 
Name:         "P.SHATTOCK" (hs0psh@ORAC.SUND.AC.UK) 
Subject:      Gluten withdrawal in young children with autism 
 
Many parents around the world have been experimenting with gluten and/or 
casein free diets for their children with autism and the vast majority 
have claimed benefits which are often substantial. Practical experience 
and theoretical considerations both suggest that the earlier the 
offending products are removed from the diet the better. Our group 
continues to be coy about promulgating information on this topic until 
the evidenceof effectiveness is conclusive. Also, I would hate to be 
sued. In spite of this, we are contacted on a daily basis by parents for 
advice on this matter. 
 
We have learned to insist (OK strongly recommend) that parents discuss 
their plans with their GP and, where appropriate, a nutritionalist of 
dietician to ensure adequate replacement of cereal and dairy produce. 
Diagnosis of autism does not usually occur until the child is at least 2 
years old and more likely 4. It is unusual, therefore, for us to be 
contacted by a parent whose child is only 20 months old. She had heard 
about dietary intervention and wnted to give it a go. We warned her that 
this is not a game and to be prepared for "withdrawal symptoms". The boy 
had existed largely on "Weetabix" and milk and this was withdrawn from 
his diet. The results were, by all accounts dramatic. Normally we 
experience anxiety and clinginess and a few tears but this boy was 
absolutely distraught and cried and screemed almost solidly for a couple 
of days. 
 
At this point, the mother decided to give him back his Weetabix. The 
results were disastrous in that the screeming was hugely intensified and 
the child arched his back and generally went berserk. At this point he 
was hospitalised for a couple of days and is now back at home (eating his 
Weetabix). 
 
Naturally, we were alarmed at this tale and there are a number of 
plausible explanations ranging from pure coincidence to the fact that the 
child was very young and so did not have any of the biologically active, 
gluten derived, peptides stored in his tissue. Thus removal of the gluten 
led to a "Cold Turkey" type response which would not be seen in older 
children or adolescents. 
 
We are unaware of any other experiences with children as young as this 
but wondered if others on the list would like to comment. I appreciate 
that although there are links between coeliac and autistic conditions 
they are not the same. It may be, however, that others may have comments. 
 
In the meantime, we have decided that when dealing with very young 
children, we will suggest that the gluten be withdrawn in two stages 
about a week apart. 
 
I would welcome any comment on this. 
 
Paul Shattock 
========================================================================= 
Date:         Sat, 26 Aug 1995 18:06:30 PDT 
Name:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      gluten levels in foods 
 
Bill Elkus stated in a recent communication: 
 
)Some Celiac support groups warn that there is no established minimum 
)level of gluten ingestion without damage..... 
 
I think that although it isn't possible to find a clear statement to the 
effect that there is a minimum level of gluten ingestion that will not cause 
damage, I will put forward for the sake of argument that such a level has 
been established by the studies of Holmes et al. (Malignancy in coeliac 
disease--effect of a gluten-free diet, Gut 30:333-338, 1989).  In their 
paper, Holmes et al. report that people (celiac patients) eating a diet 
containing gluten had higher levels of lymphoma and some other cancers than 
the population in general.  They also report that for patients consuming a 
strict gluten-free diet for more than five years, there was no significant 
increase in overall cancer risk.  What Holmes et al. do not say is that the 
108 patients in their group on a strict gluten-free diet were probably 
regularly consuming wheat starch products--because at the time their study 
was carried out, such products were (perhaps still are in the UK) considered 
acceptable in a strict gluten-free diet.  I think this is a reasonable 
assumption although, of course, I cannot prove that the patients in the 
gluten-free group of Holmes et al. were eating wheat starch products. 
 
Commercial wheat starches almost certainly contain gliadin, which is part of 
the gluten, although it is extremely difficult to put a number on how much 
gluten they contain because of analytical problems.  I will make a very 
rough estimate that a person eating 100 grams of wheat starch per day would 
have a gliadin (gluten) intake of 10-50 mg per day depending on how well the 
starch preparation had been washed.  Now this is a very small amount of 
gluten.  Nevertheless, I interpret the results of Holmes et al., if they are 
accepted as definitive, as indicating that there is a minimum amount of 
gliadin intake that causes no harm for celiac patients. 
 
Counter arguments and criticism of my logic as presented above will be 
welcomed. 
 
Don Kasarda, Albany, CA 
========================================================================= 
Date:         Sun, 27 Aug 1995 18:16:11 PDT 
Name:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      cancer and cd 
 
Kemp Randolph's comments are well taken, but I would like to add further 
comment using one of his statements as a starting point: 
 
)Still, the relative risk for getting a GI cancer from the 
)gluten in a normal diet seems to be 10- 100 times the normal rate for these 
)same cancers. (Based on the Holmes article and that Marsh chapter.) 
 
The reason I sent my previous communication and follow up with this one is 
because I feel that many celiac disease patients are likely to be scared out 
of their wits by statements such as: your risk is 100 times the normal rate. 
This statement is not incorrect, but it is possible to look at it from a 
different perspective.  I suspect that the continual harping on cancer is 
driving people into irrational and compulsive behavior with regard to diet 
(my opinion of course--not proven fact).  I strongly recommend a good solid 
gluten-free diet for celiac patients, but I don't think they should be 
terrified of looking at the facts and making an intelligent decision with 
regard to diet.  As Kemp Randolph said, "Yes, if you eat less gluten, your 
risk will be less, but somewhere for each of us there'd be a point at which 
the extra effort in excluding more wouldn't seem worth it." 
 
With regard to cancer, let us just look at the coin from the other side--how 
many will not develop cancer.  If I turn to the chapter by Holmes and 
Thompson (in the book Coeliac Disease, edited by Mike Marsh, Blackwell 
Scientific, 1992), I find in their Table 5.6 entitled "Cancer morbidity in 
CD by diet group" that for the 108 patients in the normal diet or reduced 
gluten diet group the number of all tumours was 2.6 times the expected 
number whereas for the gluten-free diet group, it was 1.5 times the expected 
number (the 1.5 was not considered significantly different from normal on a 
statistical basis). The actual numbers of tumours of all kinds (all sites) 
for the gluten-containing group was 14 for 108 subjects and the number for 
the gluten-free group was 17 out of 102, thus 13% vs. 17%.  So despite the 
significant increase in cancer for the group that was eating gluten over the 
group that was not (except perhaps for the wheat starch as I discussed 
yesterday), one could conclude that the vast majority of celiac patients 
could pay no attention to diet whatsoever for their whole lives and still 
never develop cancer. 
 
In this same table, Holmes and Thompson indicate that the observed to 
expected ratio of lymphoma was 78 times greater for the gluten-eating group. 
Now we are getting close to that 100 times greater number.  But the expected 
number was only 0.09 per 102 patients.  Therefore, the 78 times greater 
number comes out to be 7.8 patients out of 100 (they actually observed 7 
cases out of 102 patients studied for the gluten-eating group and observed 2 
cases out of 108 patients in the gluten free group).  Now, I do not in any 
way make light of these numbers.  Obviously, they are of concern to anyone 
with celiac disease.  However, I thought it might be a good idea for people 
to know a little bit more about where these numbers come from and what they 
mean. 
 
Sure hope I haven't made any mistakes.  As before, corrections and criticism 
are welcome.  In the end, each and every one of us is responsible for making 
arbitrary personal decisions about our behavior in regard to health, 
frequently with incomplete information.  My goal is to try to make sure that 
you do have at least what information is available. 
 
Don Kasarda 
========================================================================= 
Date:         Fri, 1 Sep 1995 10:26:59 GMT 
Name:         William Elkus (Maxwell@LAMG.com) 
Subject:      Reichelt on  behaviour and gluten 
 
I received the following 'guest post' from Dr. Reichelt this morning, in 
reply to some of the recent posts about behavioral changes due to 
gluten: 
 
Hi 
 
Classic works on autistic symptoms in coeliac disease have been published 
(1) and also depression (2). But of course not in all (is there ever 
something that applies to all?) 
 
It is extremely relevant that we find very high IgA antibodies against food 
proteins in Downs syndrome(3). The effect of food proteins are also manifest 
from our data on on diet and autism (4). 
 
Furthermore a series of neurological conditions have been related to gluten 
intolerance. Thus spinocerebellar degeneration, neurological symptoms, 
cerebellar syndromes and degeneration of the CNS have all been 
implicated(5-8). Gluten provocation in young children  with coeliac disease 
can cause long lasting EEG (Electroencephalographic ) changes in spite of 
normal vitamin levels (9). In adults gluten intolerance, occipital 
calcifications and a parietal epilepsy have been found (10). 
 
Finally it is important that proteins which contain many eg. exorphin 
sequences such as gluten where there are 15 per molecule (11), even trace 
amounts may cause problems when the break down is decreased or intestinal 
uptake increased swamping even normal digestive capacity. 
Animal model of extreme relevance because monoamine changes are similar to 
those described in human coeliac patients  by Hallert(2) is that carried 
out in Canada by Thibeault(12). Cats usually do not eat gluten. 
 
References: 
1: Asperger H (1961) Die Psychopathologie des Coeliakiekranken Kindes.Ann 
Paediatr. 197:146-151. 
2: Hallert C et al (1982) psychic disturbances in adult coeliac disease 
III.reduced central monoamine metabolism and signs of depression. Scand J 
Gastroenterol. 17: 25-28. 
3: Reichelt Kl et al (1994) Increased levels of antibodies to food proteins 
in Downs syndrome. Acta Paediat Japon. 36: 489-492. 
4:Reichelt Kl et al (1994)Nature and consequences of hyperpeptiduria amd 
bovine casomorphin found in autistic syndromes. Develop brain Dysfunct. 
7:71-85. 
5:Ward ME et al (1985) Celiac Disease and Spinocerebellar Degeneration with 
Normal Vitamin E status. Neurology 35:1199-1201. 
6:Cooke WT et al (1966)Neurological disorders associated with adult coeliac 
disease .Brain 89: 683-722. 
7: Finelli PF et al (1980) Adult coeliac disease presenting as cerebellar 
syndrome. neurology 30: 245-249. 
8:Kinney HC et al (1982) Degeneration of the central nervous system 
associated with coeliac disease. J Neurol Sci 5: 9-22. 
9:Paul KD et al (1985) EEG-Befunde bei Zoeliakikrnaken Kinderen in 
Abh{ngigheit der Ern{hrung. Z Klin med  40: 707-709. 
10 : Gobbi G et al (1992) Coeliac disease, epilepsy and cerebral 
calcifications.Lancet 340:439-443. 
11: Fukudome Si and Yoshikawa M (1991) Opioid peptides derived from wheat 
gluten: their isolation and characterization. FEBS Lett 296: 107-111. 
12: Thibault L et al (1988) Changes in serum amino acids content and 
dopamine-beta-hydroxylase and brain neurotransmitter interaction in cats 
fed casein with and without gluten . J Clin Biochem Nutr.4: 209-221. 
13:Zagon IS and McLaughlin PJ (1987) Endogenous opioid systems regulate 
mcell proliferation in the developing rat brain. Brain res 412:68-72 
 
Conclusion: Because gluten can cause neurological problems it is not 
strange at all that it may also give behavioural problems.The opposite 
would be improbable. 
We believe (4) that the mediators of these problems are peptides and 
specifically exorphins that do have inhibition of  nerve development as one 
of their effects (13) 
 
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:         Sun, 3 Sep 1995 19:19:59 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and back pain 
 
Not mediacl advice 
 
There are many possible connections between nack pain and CD 
The most likely problem relates to osteoporosis and shortening of the 
spinal,column. Another possibility is the weakenin of the back muscles 
due to malnutrition and loss of muscle mass or calcium and magnesium 
deficiency leading to weakness.  each of these can lead to poor posture 
which further leds to pain.  Osteomalacia ( due to Vit D def is a 
specific type of bone problem that leads to weak bones. 
 
Another cause of back pain is referred pain from the small intestine to 
the back. 
 
These are just some of the causes of back pain in asociation with CD 
 
Joe Murray 
========================================================================= 
Date:         Sun, 3 Sep 1995 19:31:03 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Mc Donalds and gluten 
 
I would like anyone who has had any experience and/or contacts with 
Macdonalds in the USA about gluten free nature of any of their products 
to e-mail me wityh the details ( as precise as possible.  I have been 
contacted by a chemist working for Macdonalds to discuss this matter.  I 
want to have as much anecdotal info as possible. 
 
Joe Murray 
========================================================================= 
Date:         Sun, 3 Sep 1995 19:35:11 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: gluten questions 
 
Not medical advice 
1. I cant see how the gluten would be get to the intestine from the skin. 
2. Gluten on the skin does not set off DH. ( any DH patients out thee 
   (not on dapsone whho bake with wheat flour?) 
3. Most of the prep pads use isopropyl alcolhol which ids not derived 
   from wheat that I know of 
4  I dont know but I doubt it 
 
Joe Murray 
 
On Mon, 31 Jul 1995, ROSALIE JALBERT wrote: 
 
) 1.  Does gluten on the skin (like in lotions) get absorb to the intestines 
) to cause a reaction? 
) 
) 2. Would a person with DH have a breakout if they were to put something 
) with gluten on their skin? 
) 
) 3.  Is there grain alcohol in alcohol prep pads? 
) 
) 4. If someone were to have a blood transfusion from a diagnosed celiac, 
) would the person receiving the blood have a reaction to gluten if they ate 
) some? 
) 
) 4. Re: oral surgery--is their gluten in the packings or the dissolvable 
) sutures? 
========================================================================= 
Date:         Mon, 11 Sep 1995 14:04:46 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: How much gluten is okay 
 
I want to clarify my views on how often a celiac can eat gluten and get 
away with it. 
The best way is to always avoid it. 
If a patient tells me they have eaten gltuten once a month and had one or 
two days of symptoms then that is probably all they will get. 
The problem is we're all human and most tend to under-report the 
transgressions. 
Certainly the intake of gluten every week with the production of symptoms 
will have a high liklihood of prodcing chronic damage. 
I dont know how much gluten is enough to produce damage or increase the 
risk of cancer. 
But it seems to be sensible to avoid it as far as possible 
Not medical advice 
 
Joe Murray 
========================================================================= 
Date:         Wed, 13 Sep 1995 10:30:18 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Gluten challenge 
 
Not medical advice 
I believe the issue of gluten challenge was addressed in a previous 
posting several months ago.  Perhaps someone more able than I with 
computers can retrieve it. 
In brief 
There are not hard data on this and the differing views. 
I usually practise the following in adults. 
Have the patient take a small test dose like one wheat cracker for 2 days 
or so.  Then if there has not been a horrible or dangerous reaction have 
the patient gradully increase the intake of gluten over several days to 
get to a dose of 3-4 wholemeal slices of bread a day.  This is continued 
for 2-3 wekks if the patient has developed classic GI symptoms Diarrhea, 
bloating etc. 
If the patient has not developed any symptoms at all then I continue the 
diet for 3 months and check the antibody levels.  If these are positive 
then I biopsy.  If the patient is asymptomatic I continue the diet for a 
further 3-6 months and repeat the antibodies. 
The tricky bit is where the patient developes atypical symptoms.  This 
situation needs to tailored to the individual case. 
A challenge must be discussed in advance with the doctor who must be kept 
updated on the advent of any symptoms. 
Too short a challenge or too little gluten may make it difficult to 
confirm the diagnosis. 
Much more research into this is needed and is being done in some European 
centers. 
 
Joe Murray 
Univ Of Iowa 
Not medical advice, please discuss this with your physician before 
following any information given here. 
========================================================================= 
Date:         Mon, 25 Sep 1995 23:01:18 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and reality 
 
I sympathise with the post that rails about how people with celiac 
disease are told to put up with everything and pay for the priviledge.  I 
know several people who have used the americans with disabilities act to 
help stress the requirement to accomodate their needs as they would some 
who is challenged because of sight, mobility, hearing or other problems. 
Other groups have made society pay attention to their problems.  See the 
warning labels about phenylalanine on soda cans. 
To get type of recognition requires a lot of concerted effort, applied in 
the right places and in the right way.  It should start with education 
and then force of numbers.  A confrontational approach leads to just that 
confrontation and then alienation of the other party.  They may rather 
not to deal with the person rather than work a compromise. 
It the individual's need to keep well that is the individual's 
responsibility but it is in coming together that the individuals can make 
life easier for them. Take every opportunity to inform others about 
gluten intolerance ( in simple easy to understand terms) and some of 
these people may be taking decisions that affect celiacs either in 
deciding about some food preparation style, selection of medications etc. 
If you are unfortunate to be going into hospital contact the dietitian as 
early as possible so she/he can work on your needs.  I think Joe Warren 
related the experiences Mary Alice and He had in this regard. 
 
Joe Murray 
========================================================================= 
Date:         Mon, 25 Sep 1995 17:19:30 GMT 
Name:         William Elkus (Maxwell@LAMG.com) 
Subject:      forward of bounced message 
 
Date: Mon, 25 Sep 1995 14:57:56 +0100 (BST) 
Name: "P.SHATTOCK" (hs0psh@orac.sunderland.ac.uk) 
Subject: Re: Vitamin E 
 
Vitamin E (or tocopherol) is often derived from wheat germ oil. I don't 
know what the situation is in the States but some of our (UK) 
manufacturers list the chemicals as if supplied in pure form but it is in 
fact just the oil which is supplied. Thus it may have been a wheat-germ 
oil capsule. 
 
In the same way, some of our multivitamin products with long lists of B1, 
B2, B6 etc. etc. just use Brewers Yeast. The assumption being that the 
quoted vitamin content requirement will be met and no-one worries about 
the extras. Of course, if it specifies some other source of the Vitamin E 
there should not be a problem. 
 
Paul Shattock 
========================================================================= 
Date:         Thu, 28 Sep 1995 16:34:17 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Vitamin E 
 
One of the sources for vitamin E is wheat germ.  I would suggest that 
anyone taking Vit E check the source. 
Not Medical advice 
Joe Murray 
========================================================================= 
Date:         Thu, 28 Sep 1995 16:52:01 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and ulcers 
 
Not medical advice 
While I cannot speak about kids, it is not infrequent to see adults who 
have some type of break in the mucosal lining of the small intestine in 
untreated CD.  Some of these breaks are actual ulcers some milder than 
that.  I suspect that they are the result of the inflammation related to 
the celiac disease.  Of course regular peptic ulcers are common at least 
in the adult population. Usually in adults peptic ulcers are related to a 
bug H. Pylori which if it is not present suggests that the ulcer is 
related to celiac disease. 
Joe Murray 
========================================================================= 
Date:         Thu, 28 Sep 1995 17:23:37 -0500 
Name:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and finger prints 
 
There was some interest in fingerprint abnormalities in celiac disease 
about 20+ years ago.  it was not specific or very sensitive so it has not 
really been follwed up.  If anyone knows of any recent work on it I would 
be interested to see it. 
Joe Murray 
 
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