Expert Postings
November 1994

Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1994 - All rights reserved worldwide.
Disclaimer

Table of Contents

 
This file contains postings made by the following professionals: 
 
   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. 
 
(Disclaimer:  Verify this information before applying it to your situation.) 
 
========================================================================= 
Date:         Wed, 9 Nov 1994 09:15:41 GMT 
From:         Kalle Reichelt (K.L.Reichelt@rh.uio.no) 
Subject:      Intolerance to food proteins 
 
There are several different types of intolerance. Coeliac disease is one 
where  certain peptides from gliadin and gluten are toxic to the gut mucosa 
due to lack of break down. Usually these people have certain Major 
histocompatability genes  or surface molecules on cells that bind peptides. 
They show IgA often IgG antibodies to gluten and gliadin as well as 
endomycium antibodies.(ref to peptides Wieser et al (1984) 
lebensmittelundersuch.Forsh.79:3371-1176), Cornell (1988) Clin Chim Acta 
176:279-229.) 
 
It is especially important to stay on diet confirmed by biopsy because of 
certain malignant lymphomas that may develop especially in symptom free 
coeliac disease(not all get diarrhroea), as well as certain types of epilepsy 
(Gobbi et al (1992) The Lancet 340:439-443). IgA and endomycium bodies 
together may make biopsies superfluous, but as of today, biopsies are 
probably necessary. 
 
The other type of intolerance is due to psychoactive peptides formed in the 
gut such as exorphins (Opioids formed in the gut). Especially important are 
casein, gliadin and gluten . Also intact proteins are taken up from the gut 
postprandially [after meals] Husby et al (1985) Scand J Immunol 22:83-92. 
Although little (2-5 nanomles per ml blood) insufficient break-down may end 
in peptide build up over time with psychoactive effects . More than the 
expected number of psychotic patients have specific IgA antibodies increase 
but not endomycium antibodies. There are 15 opioid sequences in one molecule 
of gluten as found by Prof Yoshikawa, Japan . It is easy to see that this may 
develop into a problem if the breakdown is insufficient of inhibited. 
 
                                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:         Mon, 14 Nov 1994 12:07:21 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: Wild rice 
  
)  My mom (who has a gluten intolerance) says she read that wild rice is 
)somehow related to oats. Is this true? If it is true, does it affect celiacs? 
)  (She read this in the syndicated L.M. Boyd trivia column, and it had no 
)further information, but, better to be safe....) 
) 
)  Doug 
)  dougnbarb@aol.com 
) 
At least according to Hitchcock, Manual of the Grasses of the United States 
1950, wild rice belongs to the tribe Zizaniae whereas oats belongs to the 
tribe Aveneae.  I see no obvious relationship between wild rice and oats in 
Hitchcock's taxonomy.  It would be interesting to know where L. M. Boyd 
obtained his information. 
 
Donald D. Kasarda 
========================================================================= 
Date:         Mon, 14 Nov 1994 15:57:59 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: menus 
 
 
 
)) What's this about vanilla extracted from alcohol? 
) 
)Extracted _in_ alcohol, actually.  Most vanilla extracts are 
)based on grain-derived alcohol, and in some cases it appears 
)that a gluten residue can remain.  It's something to watch out 
)for; we generally avoid using any product that lists "vanilla" 
)in its ingredients, and buy things with "vanillin" (an artificial 
)substitute) instead. 
) 
)You can find alcohol-free extracts for cooking at home; Dietary 
)Specialties carries one I think, and I know for sure that 
)Trader Joes does (for you west-coasters). 
) 
)                                        eh 
) 
I am extremely skeptical about any gluten residue that could cause harm to a 
celiac patient being present in distilled alcohol of any sort, including 
alcohol prepared from wheat grain.  Is there any evidence for such a gluten 
residue? 
 
Donald D. Kasarda 
========================================================================= 
Date:         Mon, 14 Nov 1994 17:29:15 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: menus 
 
)Donald, I've had mild but distinct celiac reactions from accidentally 
)eating foods prepared with real vanilla. Any food derived from a 
)gluten source seems to be a potential problem for celiacs, although 
)people seem to have different levels of sensitivity. I've also reacted 
)to K.C. Masterpiece sauce, which tested out as having a very low and 
)supposedly "acceptable" level of gluten (acceptable to who?) in our 
)home kit (although word is those kits are not completely reliable.) 
) 
)Wendy Betts, web@armory.com 
) 
Is it possible that some people have a reaction to some component of real 
vanilla, an extremely complex extract, that has nothing to do with alcohol 
or celiac disease?  There are people with milk allergy who do not have to 
avoid wheat, rye, barley, or oats.  There are people with celiac disease who 
cannot tolerate milk, but does that mean that milk allergy is fundamentally 
connected with celiac disease and that no celiac patient should drink milk? 
It is important when dealing with anecdotal information about celiac disease 
to make the distinction between an individual's reaction and the general 
(defining) characteristics of the disease.  Also, I have personally seen 
anecdotal information (not involving vanilla extracts) that turned out to be 
incorrect when the complaining individual was subjected to blind testing. 
Psychological effects can be strong. 
 
Donald D. Kasarda 
========================================================================= 
Date:         Tue, 15 Nov 1994 12:15:54 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: menus 
  
)Um...how it can it be a psychological effect when I ate it 
)accidentally? In each case, I had the reaction and then 
)discovered that vanilla extract had been used. No problem 
)with vanilla from beans or extracted from non-gluten sources. 
)I suppose we could try our gluten-testing kit on some vanilla, 
)but frankly, it was so expensive I hate to waste it on something 
)that I *know* affects me. 
) 
)I agree that anecdotal evidence is not evidence but in the 
)case of sprue it's often all we have.  In the face of all 
)the contrary advice and information we're given--sometimes 
)from the same organization!--I prefer to play it safe, 
)especially when my experience supports the conclusions. 
) 
)Wendy, web@armory.com 
) 
Wendy, 
 
I don't disagree with most of what you say.  I think it is entirely 
reasonable for any one person to pay attention to what seems to cause a 
problem for her or him and act accordingly.  Nevertheless, psychological 
effects are real, although the sorting out of what is psychological and what 
is not may be extremely difficult and, consequently, probably not worth 
bothering about. 
 
I do have concern about what I see is a very strong tendency for each 
individual celiac to ascribe his or her own responses to all celiac 
patients--to celiac disease in general.  I have talked with celiac patients 
who seem to eat (pure!) buckwheat with no problem (what I would expect from 
taxonomical relationships) and yet some celiac patients claim they have a 
terrible problem with buckwheat. These people who do have a problem seem 
unwilling to consider the possibility that their problem has nothing to do 
with celiac disease.  I would caution people to be careful about extending 
their own experiences to others.  As far as we know at present, the only 
substances that cause problems for celiac patients are wheat, rye, barley, 
and probably oats.  I suspect there are a great many celiacs following 
unnecessary dietary restrictions because of this tendency for individuals to 
generalize. 
 
    This business about alcohol being a problem is indeed puzzling to me. 
It is not expected that the peptides responsible for celiac disease would be 
sufficiently volatile to carry over in a distillation process. Accordingly, 
I would not expect even grain alcohol from wheat to contain any peptides 
that would harm a celiac patient. Perhaps it would be a worthy goal of some 
of the celiac patient groups to actually set up some double blind tests on 
controversial food items  with sufficient numbers involved to make the 
results meaningful. 
 
    Anyway, supposing, for the sake of argument, there is some carryover in 
distillation.  Celiac disease itself does not seem to involve an instant 
reaction to wheat gliadin peptides.  This creates a problem in challenging 
people in that some people go for months or even years eating a normal diet 
before any evidence can be obtained of harm.   Those people who have instant 
reactions to foodstuffs pose an interesting question.  Is this another 
immune response, perhaps more characteristic of allergy, rather than the 
immune response characteristic of celiac disease?  We don't know the answer 
to this question because we don't understand the mechanisms involved.  But 
just remember that there are true celiac patients, properly diagnosed, who 
can eat a couple of slices of wheat bread and never notice any effect. These 
certainly would never notice the "residue' in alcohol used to extract 
vanilla beans. 
 
Donald D. Kasarda 
========================================================================= 
Date:         Mon, 21 Nov 1994 07:29:04 GMT 
From:         Kalle Reichelt (K.L.Reichelt@rh.uio.no) 
Subject:      Diet and mental disease 
  
Due to epidemiology Prof Dohan, Philadelphia proposed that there was a 
clearcut connection of gluten to schizophrenia (Dohan et al (1984) Biol 
Psychiat 19:385-399; Dohan (1983) Biol psychiat 18:561-564). See also Lorenz 
K (1990) Adv in Cereal Sci and Technol X:435-469. The effect of diet takes a 
long time because the kidneys are very well adapted to preserve peptides and 
proteins. We found that it took 28 weeks of strict diet to normalize the 
urinary excretion of peptides in a double blind study of diet followed with 
urine analysis and rating scales (Reichelt et al (1990) J Orthomol Med 
5:223-239). Most experiments on diet have been far too short in time ,but 
even then all admit to individuals being  much improved on diet although not 
statistically for the group (Rice JR et al (1978) Amer J psychiat 
135:1417-1148; Storms LH et al (1982) Arch Gen Psychiat 39:323-327;NB: 
Vlissides DN et al (1986) Brit J Psychiat 148:441-452) 
 
The low number partaking in the experiments have been citizised (King DS 
(1985)Biol Psychiat 20 :785-787.). Clearcut effect of diet in schizophrenia 
was found by a) Dohan and Grasberger (1973) Am J Psychiat 130:685-686: Singh 
and Kay (1976) Science 191: 401-402; Cade R et al (1990) Psychiatry :A world 
perspective 3: 494-500 (he uses our urine screening too). 
 
In autistic children we have very good results as documented with STRICT diet 
 (Knivsberg SA-M et al (1990) Brain Dysfunct 3: 315-327 and also Reichelt Kl 
et al (1991) Brain Dysfunct 4:308-319).In the last publication evidence for 
the identification of bovine casomorphin 1-8 immunoreactive peptides was 
reported, and opioids are formed from food proteins in the gut .Also 
extremely important is the fact that everybody takes up bioactive peptides 
and also trace amounts of protein from the gut (Gardner MLG (1994) in 
Physiology of the gastrointestinal tract (Johnson LR : edit) Rave Press, NY 
pp 1795-1820) ,That this is so can be seen from the fact that we all have IgG 
antgibodies to food proteins .Because there are 15 opioid sequences in one 
molecule of gluten (Fukudome and Yoshokawa (1991) Febs lett 296:107-111) even 
trace amount so protein uptake can be catastsrophic if not properly broken 
down. 
 
In general we also find increased IgA antibody levels in schizophrenics 
(reichelt et al in press) and usually peptide increased in the urine. The 
problem is usually that diet is tried as a last resort , and because there 
are strong indications that opioids inhibit the normal maturation of the 
CNS (Zagon and Mclaughlin (1987)Brain Res 412:66-72) it is no wonder that we 
often are too late or that it takes time to change the course of the disease. 
 NMR studies are quite clear that trophic changes do take place . The opioids 
do get in the CNS as in Post partum psychosis ,which is a dramatic and 
symptom rich psychosis (Lindstr|m et al 1984)Amer j psychiat 141:1059-1066) 
 
Diet is however, not easy and may be experiences as a socially isolating 
procedure. It must also be strict. Finally the opioids make it difficult to 
quit  the food in question as in all addictive states. More details can be 
obtained by writing me directly   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 
  
--- n.b. from Bill:  if you do email Reichelt privately, please post anything 
of interest on the Celiac conference, as there are a number of subscribers 
who are very interested in this topic.  He has authorized me to post any of 
his letters to this conference. 
========================================================================= 
Date:         Mon, 21 Nov 1994 11:25:47 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      allergy, definitions, schizophrenia 
  
In the Canadian Celiac Society survey (Campell et al. 1991. J. Canadian 
Dietetic Association 52:161-165), Table 2, which lists percentages of celiac 
patients who had symptoms from various foods, indicates that 11% of 
biopsy-proven celiac patients reported problems with white vinegar and 11% 
reported problems with citrus fruit.  Almost everyone, celiac or not, has at 
least minor problems with some of the foods they eat.  The immune system of 
the gut must deal with a great many foreign proteins, and other molecules, 
that we encounter through eating. It should not crank up any mechanisms that 
might harm our tissues when it encounters these food molecules (foreign to 
the body). At the same time, it must protect us from viruses, bacteria, and 
parasites, that we also take in through eating. Tissue damage can be an 
acceptable side effect when it comes to protecting the life of the organism 
against these invaders. The differences between food proteins and, say, 
viral coat proteins can be subtle. The complexity of the system is 
impressive and imperfectly understood at present.  Sometimes the complexity 
works against us and causes reactions against food molecules.  Breaks of the 
game.  On the whole and with the vast majority of people, the system works 
well, but individual failures and breakdowns are not uncommon. 
 
Maize is another name for corn.  Zein is the prolamin protein fraction of 
maize or corn.  Zein is the maize equivalent of gliadin in wheat. 
 
I can't find the article or abstract right now, but if I recall correctly, 
researchers in the West of Ireland (Galway and nearby) found no significant 
association between celiac disease and schizophrenia.  This does not prove 
that wheat ingestion has no association with the symptoms or origins of 
schizophrenia.  Independent effects of wheat and wheat proteins-- with 
different mechanisms and resulting from different peptide sequences would 
not be ruled out. 
 
Donald D. Kasarda 
========================================================================= 
Date:         Tue, 22 Nov 1994 07:32:41 GMT 
From:         Kalle Reichelt (K.L.Reichelt@rh.uio.no) 
Subject:      autism and gluten (corrected) 
 
The only certainly established peptide problem so far is gliadin,gluten and 
casein. However,people can be allergic (IgE mediated) to almost anything. 
Opioids may also be formed from hemoglobin(hemoceptins) so I guess it is 
better not to consume blood products. 
 
For autistic children and schizophrenics it is best to stick with 
gluten,gliadin and casein ,because that is what we have studied.After all 
we all need proteins of some sort to develop normally and it is important 
to warn against overenthusiastic slashing of this and that in an arbitrary 
way.Growth is a good variable to monitor adequate nutrition. 
 
There should always be a posyive identifiable reason for removing  any item 
from the diet and preferably some scientific evidence.  Children all the way 
up to puberty are quite adaptable in their CNS and two year olds definitely 
so. 
 
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:         Tue, 22 Nov 1994 13:27:40 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: allergy, definitions, schizophrenia 
 
My name is Joe Murray and for those that dont know me.  I am a 
gastroenterologist at the University of Iowa.  I was brought up in 
the west if Ireland and have been exposed to friends neighbours and 
more recently patients with celiac disease.  We have a dedicated 
multidisciplinary service for the clinical care of people with celiac 
disease, which also is involved with clinical research and medical 
education related to this condition and dermatitis herpetiformis. 
Our particular interests are in application of serologic tests, 
atypical presentation and refractory disease. 
 
I Look forward to gleening information for my patients from the 
conference as well as an intellectual interchange of ideas. I will 
attempt to participate in clinical discussions as my time permits but 
will not be able address any individual patient questions due to 
professional and ethical limitations. 
 
After that long introduction my question/reply is this:  What are the 
plant toxonomy differences or characteristics that differenciate one 
grass from another.  Do these characteristics always imply a 
different phylogenetic origin for these plant species.  For example 
buckwheat is not classified as a grass but it sue looks like wheat 
and tastes like wheat(sort of) and mills like wheat and well you get 
the idea. Can we depend on the taxonomy as it stands to distinquish 
the 2 plants as regards the nature of their storage proteins? 
 
Joe Murray 
========================================================================= 
Date:         Tue, 22 Nov 1994 14:08:28 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      quinoa, buckwheat 
 
    I am about to leave for a week's vacation and will just make a short 
reply to Joe Murray about buckwheat and say that Bill Elkus has pretty much 
done it for quinoa.  I agree with everything he said. Bill had asked me to 
post my grains letter, but unfortunately it had been transferred to a backup 
Syquest drive some time ago and now I can't seem to find that cartridge.  I 
will keep looking. 
 
    Joe, I guess you and I have different sensory responses to buckwheat. To 
me, it doesn't look like wheat, taste like wheat, or behave like wheat, but 
that is obviously a subjective judgement. 
 
    A major division of the plant kingdom is into dicots and monocots.  The 
grasses, including wheat, rye, barley, oats, rice, and corn are all 
monocots. So all toxic grains are grasses and these are very closely related 
taxonomically, yet some relatively close relations are not toxic (rice, 
corn).  When we consider species far away taxonomically, such as the dicot 
species buckwheat, quinoa, and amaranth, these are so distantly related to 
the toxic grains that it seems no more reasonable to ascribe toxicity in 
celiac disease to them than to any other plant species.  Every plant would 
become suspect. I emphasize that because we have not characterized and 
sequenced all the proteins from those species (not likely to be done) and I 
don't know of completely satisfactory scientific testing of the grains in 
question, we cannot rule out the possibility that a quirk of evolution has 
led to some identical amino acid sequences in, say, buckwheat proteins, to 
those that are harmful in wheat proteins.  Seems pretty unlikely though. 
Anyway, there is no possibility that buckwheat is a close relative of wheat. 
Not to say that some people may not be able to tolerate buckwheat, but has 
that anything to do with celiac disease? 
 
    I think that when celiac patient groups say that something must be 
avoided--white vinegar, buckwheat, quinoa, grain alcohol, whatever, they 
should say why.  Is there any scienific evidence? How many people have been 
polled? Is it just one of the key people in the organization who reacts? Any 
controls?  Too much mere opinion flying around. Let's try to separate 
individual responses from those that truly are a fundamental part of having 
celiac disease. 
 
    Bill Elkus made the very important point that many products that feature 
buckwheat or quinoa and so forth in their names or labels may also have 
wheat in them.  My guess is that most buckwheat products (pancake mixes, for 
example) on supermarket shelves contain wheat. 
 
Happy Thanksgiving! 
 
Don Kasarda 
========================================================================= 
Date:         Tue, 22 Nov 1994 16:49:25 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      conference on epilepsy and celiac disease 
 
Some of you may be interested to know about an upcoming scientific 
meeting to be held in the republic of san marino( a little country 
surrounded by italy) in april of 1995.  It is devoted to the topic of 
epilepsy( and other neurologic diseases in  celiac disease. The address 
for information is 
Ufficio attivita Promozionali 
Istituto Sicurezza sociale 
Via La Toscana-cailungo 
47031 Repubbulica San Marino 
tel +39/549/994535 
fax +39/549/903706 
 
The program lists speakers addressing nerve, muscle, cognitve disorders 
in celiac disease. 

It is encouraging to know that there is a signifigant number of 
researchers interested in an area I barely knew existed 1 year ago. 
joe murray 
========================================================================= 
Date:         Tue, 22 Nov 1994 23:44:19 +0000 
From:         "P.SHATTOCK" (hs0psh@ORAC.SUND.AC.UK) 
Subject:      Buckwheat 
 
I have been looking for an excuse to prod my nose onto this list and at 
last an opportunity has presented itself. 
 
Joe Murray raised a question about plant taxonomy and, in particular, 
about "Buckwheat" and its relationship to "Wheat". In spite of their 
English names, the two plants are completely unrelated and look entirely 
different. Buckwheat is the name given to "Fagopyrum esculentum" which is 
a broad leaved plant. Wheat ("Triticum aestivum" alternatively called 
riticum sativum") is, as you say, a grass and, therefore, a very "
different plant. The protein content would be totally different in the 
two flours. 
 
Not a particularly startling debut to this list but at least I am here. 
 
Paul S. 
========================================================================= 
Date:         Mon, 28 Nov 1994 21:35:35 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: quinoa, buckwheat 
 
I am grateful for the enlightenment of the group on the questions 
relating to buckwheat/quinoa.  It does reveal the real difficulties not 
only for gluten intolerant individuals but also for those professionals 
that advise those intolerant individuals.  My practise jas been to err on 
the safe side.  Being Irish I tend to emphasize the more commonly 
available starch sources such as rice and root vegetables ( including 
potatoes) and advise individual patients not to utilise large quantities 
or frequent use of flours generated from exotic or unusual grains. 
Obviously this needs to be tailored to individual patients 
sensitivities.  In patients with celiac disease gluten ingestion does not 
always lead to symptoms but it may lead to damage or chronic delayed 
onset symptoms. My impression is that people who are quite adventurous
(from a dietetic point of view) are more likely to have continued problems. 
 Joe Murray 
========================================================================= 
Date:         Mon, 28 Nov 1994 22:15:25 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Bacterial overgrowth, yea... 
 
There has been one study examining the prevalence of helicobacter pylori 
carriage in celiacs form England.  The rate of helicobacter was the smae 
in the celiac group as in the general population. 
I have seen some patients with celiac disease who have had severe 
hearburn which seems to improve with a GFD. Have any of the Physicians or 
People with celiac similar experiences. 
As a Gastroenterologist I beg to differ with your GI docter who doesnot 
believe that adults get CD.  Our experience in Iowa would suggest that 
adult CD outnumbers childhood CD by at least 10:1.  So it is 
predominantly an adult disease. Joe Murray 
 
On Mon, 28 Nov 1994 BORYR@AOL.COM wrote: 
 
) On 11-18 JRGates wrote 
) 
) 
) subject Bacterial overgrowth, yeast, antibiotics, and stomach acidity 
) Date:   94-11-18 09:55:59 EST 
) 
) 
) ))Having recently joined this group because of my professional interest in 
) )CS, I would appreciate knowing what the experiences of this group )has been 
) )in the following: 
) 
) )1.  It is commonly known that antibiotic therapy (as well as such )things as 
) )    acute stress, gastroenteritis, etc.) affects the natural intestinal 
) )    flora, potentially resulting in overgrowth of bacteria in the normally 
) )    relatively sterile small intestine and/or overgrowth of pathogenic 
) )    bacteria in the large intestine. My question:  How many celiac 
) )    sufferers can trace back the "origins" of their symptoms to a 
) )    gastrointestinal event like the ones mentionned above? 
) Four years ago, I was given antibiotics before seeing a dentist. About 3 days 
) later had bad reaction, from both ends of the digestive tract. Was rushed to 
) ER when my wife believed that I was in bad shape. Was in Hospital for 1 week 
) being rehydrated, and tested. Results "Colstridium Difficile Infection" 
) caused by antibiotic. Treated with another antibiotic for 3 months. Most 
) symptoms disapeared but some remained. Other tests, finally Small Bowel 
) Biopsy, with diagnoses as Celiac Disease. Gastro specialist still doesn't 
) believe that Adults have CD, but pathologist is certain that I do. . Have 
) been retested after 3 months and found great improvement but still some 
) signs. Have been on GF diet since and althought there are still days when I 
) know I must have cheated, (not on purpose), I really feel quite good. I am am 
) male age 60 and have "a nervous stomach" since my teens. 
) )2.  Have any individuals here with celiac sprue supplemented with 
) )    a hydrochloric acid compound (ex. betaine + pepsin)? Results? 
) 
) )3.  Have any individual here w/ celiac sprue also been tested for 
) )    either H. pylori (known to affect stomach acidity) or Candida 
) )    albicans? 
) 
) )At some time in the near future I will post (...you are collectively 
) )interested, otherwise individually)  a brief review of my research 
) )into the relationship of intestinal bacterial ecology to disease )processes 
) and their hypothetical link to CS. 
) Will be most interested in any information you might share. 
) )best regards, 
) )JR Gates, DHSc MPH 
) )Cornell Un. Dept Nutr Sc. 
) 
) Boris Rapport  
========================================================================= 
Date:         Tue, 29 Nov 1994 17:34:56 EST 
From:         Bill_Elkus#123#Notes#c#_Bill_Elkus#064#Jefferies#125#@JEFCO.COM 
Subject:      Dr. Murray answers 3 questions 
 
I asked the following three questions of Dr. Joe Murray for the benefit of the 
whole Celiac list, and his replies follow -- Bill Elkus 
) question.. 
) 1)  My son's gastroenterologist said that when he does a follow-up biopsy on 
) a confirmed Celiac on a gluten free diet, he always sees residual damage to 
) the intestine.  His personal feeling is that the intestines should completely 
) heal on a truly gluten free diet, and that this residual damage is due to the 
) fact that it is almost impossible to be truly gluten free ---  in modern 
) society, there are so many opportunities for gluten to sneak into food, or be 
) accidentally introduced due to cross contamination that no one is 100% 
) gluten free. 
 
answer.. 
I believe that a Celiac intestine can heal  completely and I usually 
aim for just that in the follow-up biopsy.  The  length of time it 
takes to heal seems to be longer in older individuals than in younger 
people. The earlier one rebiopsies the less likely there  will have 
been time for the gut to heal. 
 
question 
) 2)  How much gluten can be tolerated with de minimus damage?  It is said that 
) the intestines can be damaged even when the patient feels fine after eating a 
) small amount of gluten.  The mechanics of damage to the villi seem to imply 
) that very small amounts of gluten are sufficient to bind to ALL the villi 
) cells, so that once this initial quanta of gluten has been ingested, all the 
) damage is already done, and additional amounts of gluten do no further 
) damage.....unlike a dieter cheating on his diet for a CD patient the damage 
) is not proportional to the amount of cheating.  Is this true? 
 
answer... 
Can gluten occupy all the receptors in the villi thereby blocking the 
subsequent effect of further doses of gluten ?  This is unlikely as I 
see a cumulative effect of continued exposure to gluten over the long 
term. 
 
question... 
) 3)  By now you have seen a number of posts on he issue of gluten and casein 
) intolerance and the possible link to autism. From what you know of the 
) mechanics of gluten damage, does it make sense that casein  (or even 
) other proteins) could cause analogous damage to the villi --- or instead 
) is a totally different mechanism in place, a mechanism which coincidentally 
) involves gluten but is not itself classic Celiac disease?  From what I have 
) read, I would have thought it is the latter, but my son was biopsy confirmed 
) Celiac. 
 
answer... 
Related to casein and whether it can cause a similar lesion in the 
intestine as gluten does in Celiac disease.  Yes, in young children, 
there can be a patchy enteropathy that is thought to be milk protein 
allergy. 
 
These are short answers to what are rather involved questions but I don't 
type very fast.  Joe Murray 
========================================================================= 
Date:         Wed, 30 Nov 1994 12:34:52 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      celiac disease - mechanisms 
 
question 
) 2)  How much gluten can be tolerated with de minimus damage?  It is said that 
) the intestines can be damaged even when the patient feels fine after eating a 
) small amount of gluten.  The mechanics of damage to the villi seem to imply 
) that very small amounts of gluten are sufficient to bind to ALL the villi 
) cells, so that once this initial quanta of gluten has been ingested, all the 
) damage is already done, and additional amounts of gluten do no further 
) damage.....unlike a dieter cheating on his diet for a CD patient the damage 
) is not proportional to the amount of cheating.  Is this true? 
 
Although there are many speculations, I would say that there is no clear 
understanding of how certain peptides, derived by digestion of gluten 
proteins, trigger responses in the body that ultimately lead to destruction 
of intestinal epithelial tissues, including the absorptive cells or 
enterocytes.  This makes it difficult to speculate then on whether minimal 
amounts of these peptides can be tolerated or not.  For the sake of 
discussion, however, I put forward the following considerations:  It is my 
impression (based on the work of C. E. Rubin) that it is not unusual for a 
celiac with full blown disease and severe damage to the parts of the 
intestine nearest to stomach to have NO damage to the distal small bowel 
(farthest downstream part of small intestine, or ileum). Yet the ileum is 
capable of being damaged when gluten proteins are instilled directly into 
it.   J. R. Hobbs and others have suggested that this is a pretty good 
indication that the intestine is capable of digesting the harmful peptide or 
peptides.  The access of the peptides to the intestinal surface in the 
upstream part of the intestine is sufficient to trigger the mechanisms that 
lead to damage, but even large amounts of gluten proteins and peptides 
eventually are digested as they move along the considerable length of the 
small intestine--thus the lack of damage to the ileum. 
 
Accordingly, it is possible that very small amounts of these peptides might 
be digested before they cause significant harm.  This is speculation that 
cannot be evaluated right now without detailed understanding of mechanisms. 
 
Consider an alternative.  It is possible that binding to a key (but as yet 
unknown) receptor site is stronger than binding to the enzymes capable of 
digesting the peptide and takes precedence for first exposure, even for very 
small amounts of protein.  Eventually, however, the weaker binding to the 
proteolytic enzymes could still result in complete digestion before the 
peptides reach the far end of the small intestine. 
 
Donald D. Kasarda 
========================================================================= 
Date:         Fri, 2 Dec 1994 16:11:57 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: BIOCHEMISTRY of Autism 
 
Does anyone know if individuals with autism have been HLA typed as celiac 
disease seems to a have a pretty strong association with DQW2? Joe Murray 
========================================================================= 
Date:         Fri, 2 Dec 1994 19:31:50 GMT 
From:         William Elkus (Maxwell@LAMG.COM) 
Subject:      Murray on adult vs. juvenile Celiacs 
 
I asked Dr. Murray: 
 
) You said that your clinic sees adult Celiacs ten times more often than 
)  children-- do you think this is because Celiac is primarily an adult 
)  -onset disease, or that children's Celiac is underdiagnosed? 
) If it is primarily an adult phenomena, 
)  then this means individuals who could properly digest 
) gluten for decades have something triggered in them which 
)  suddenly screws up their metabolism. 
) This makes me wonder whether autistic children with gluten intolerance 
) have a different type of Celiac disease, since these children typically 
)  react poorly to gluten from their first introduction to their diet. 
) 
 
Dr. Murray's reply: 
 
With regard to your question regarding whether CD actually developes 
later in life rather than just not been diagnosed at an earlier stage. 
There are some examples in the literature of individuals with DH who had 
a normal biopsy followed several years later with a flat biopsy who most 
have had not developed the disease.  It is also possible there the 
biopsies while normal to the eyes of the pathologist may have harboured a 
patchy or very mild that was not biopsied or was very subtle. 
 
I suspect that some patient have some damage but no symptoms for many 
years and other patients may have neither symptoms or damage until some 
precipitating event occurs, such as gastroenteritis, surgery. 
However without preceeding biopsies it is not possible to conclude what 
this means.  Certainly there is some, albeit conflicting, evidence looking 
at mucosal permeability in asymptomatic relatives of CD patients which 
suggests that there may be an underlying defect even in seemingly 
unaffected individuals. 
 
I am unaware of whether there has been any work looking at mucosal 
permeabiltiy in patients with autism or schizophrenia. 
Perhaps someone out there is aware of some work in this regard. 
 
Joe Murray 
========================================================================= 
Date:         Sat, 3 Dec 1994 14:45:14 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      spelt 
 
Spelt is wheat.  It should be avoided by celiac patients. 
 
Donald D. Kasarda 
========================================================================= 
Date:         Mon, 5 Dec 1994 12:02:06 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Spelt as a wheat alternative 
 
Due to the similarity of spelt and wheat it would be prudent if a bakery 
is manufacturing gluten free products that these should be separated from 
spelt also. it seems to me that the resurgence of spelt is a marketing 
triumph rather any advancement in food science. joe murray 
 
On Sun, 4 Dec 1994, Tanya Heikkinen wrote: 
 
) And since someone else was wondering, I am not a celiac, nor do I have 
) any diagnosed food allergies.  I am a baker, and am interested in 
) providing alternative products to those of our customers who need them, 
) and those who simply enjoy a change of pace.  I originally wanted to 
) start producing gluten-free products for our bakery, but after reading 
) many posts here, I have decided that the best way to go gluten-free would 
) be to have two kitchens - there is simply too much opportunity for 
) gluten-contamination the way we are set up now.  Many celiacs seem to be 
) *extremely* sensitive, and I wouldn't want to put those people at risk. 
========================================================================= 
Date:         Mon, 5 Dec 1994 14:23:48 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      celiac disease-spelt-proteins 
 
Spelt is so close to normal bread wheat (closer than durum wheat, used for 
pasta, is to normal bread wheat) that I would guess the chances of someone 
being allergic to wheat and not to spelt as being something like 1 in a 
million. By allergy, I shall arbitrarily limit my discussion to people who 
primarily have respiratory symptoms or who develop skin wheals upon eating 
wheat (these are associated with IgE type allergies) as opposed to people 
who have gastrointestinal problems, which might result from either celiac 
disease (especially involving IgA) or allergy.  Allergy may be caused by 
proteins in wheat that are different from gluten proteins--at least this is 
true for baker's asthma.  I have the definite impression that allergy may be 
quite variable in any given individual--a person may react strongly one day 
and weakly another, hence sometimes giving the impression that he/she can 
handle spelt; psychological factors may also be involved.  On the other 
hand, there is almost no question now that spelt is harmful to celiac 
patients.  Spelt should be avoided by celiac patients. 
 
Similarity of wheat, rye, and barley proteins:  Proteins are polymers of 
amino acids.  The amino acids are joined together by peptide bonds like 
beads on a string.  There are 20 different amino acids commonly found in 
proteins and the sequence in which these 20 different amino acids appear in 
the string is important to determining the type of protein.  Wheat, rye, and 
barley all have proteins that differ by species; the proteins of barley can 
be distinguished from the proteins of wheat, but wheat, rye, and barley 
proteins have some considerable similarities in  amino acid sequence. 
Although a typical gluten protein may have 300 amino acids in its chain, it 
has been essentially proved that a 19-amino acid piece of that chain or 
string can cause damage in celiac disease. Even smaller pieces may be 
active. Some of the key suspect sequences appear in the wheat, barley, or 
rye storage proteins. Traditionally, gluten (highly cohesive and elastic) is 
found only in wheat and actually is made up of storage proteins, which 
provide a source of nitrogen and amino acids for the new plant upon 
germination of the seed.  A gluten ball is difficult or impossible to wash 
from rye or barley, but celiac patients have come to call all toxic proteins 
or peptides (pieces of the protein, usually resulting from the digestive 
process) "gluten".  So when a celiac asks does a grain have gluten? I 
translate in my head immediately into, "Does the grain have any proteins 
that include any of the suspect sequences."  Strictly speaking, rye and 
barley have storage proteins with some important similarities in sequence to 
the wheat proteins.   The situation with oats is more complex.  Most of the 
proteins do not have similarities, but a small fraction does have some 
suspect sequences.  If oats holds up as toxic, then it is likely to be 
because of these particular sequences.  No other plants are known to have 
these key sequences, but, of course, the number of proteins sequenced from 
various species is not all that large in comparison with the enormous number 
of possiblities.  The exorphins and the celiac-active peptides appear 
generally to consist of pieces having different amino acid sequences. 
 
Donald D. Kasarda 
========================================================================= 
Date:         Tue, 6 Dec 1994 17:50:04 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: celiac disease-spelt-proteins 
 
)As both a chemist and an allergic type, I don't find it at all 
)surprizing that people can be allergic to wheat but not allergic 
)to spelt. ANY change in a protein or other substance, no matter how 
)small, can make drastic changes in its effect. This is why it 
)is reasonable to test a food in different forms when testing for 
)allergy-- for example, you may react to the cooked food but not the 
)raw or vice versa. I reacted to soy at one time when in the form of 
)roasted soy beans or cooked soy beans, but not to tofu (processed 
)from soybeans). Some people can drink raw milk but not pasteurized, 
)for example. 
)    Then there are people who tend to react to whole families of 
)foods in all their forms (a reason why in the rotation diet, it 
)is suggested that food families be rotated rather than just individual 
)foods). Mysterious are the ways of the human body.... 
)              Peace, Cathy Flick  cathyf@earlham.edu 
) 
I don't disagree with what Cathy says, but I don't think it is all that 
pertinent to the wheat vs. spelt controversy.  If cooked spelt is OK, then 
cooked wheat would very likely be OK as well. The differences (as indicated 
by gel electrophoresis) in protein components among wheat varieties are as 
large as the differences between wheat varieties and spelt varieties, which 
is not unexpected because spelt does not belong to some other family--it is 
essentially a variety of wheat.  I suppose one variety of, say, peanut might 
be OK for a given person allergic to peanuts, while another might not, but I 
am not aware of this. If there is evidence for varietal variations in 
allergenicity I would be very much interested in hearing about it. It is not 
impossible, as Cathy maintains, for spelt to be differentiated from wheat by 
an allergic individual, but I still think it is highly unlikely.  As usual, 
however, scientifically controlled testing would be necessary to go beyond 
'I think.' 
 
Don Kasarda 
========================================================================= 
Date:         Tue, 6 Dec 1994 20:51:12 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      Re: celiac disease - mechanisms 
 
)Dear Dr. Kasarda: 
)It has ocurred to me that silica (or silicon) may be beneficial in 
)healing the gut wall since it is essential for the maintainance of mucous 
)membrane linings in the body. Horsetail is an excellent source of natural 
)silica and I was wondering if it is gluten free?  Thank you for all your 
)interesting and very informative postings. 
)                                -Portia 
)(parent of an autistic two and a half year old with celiac symptoms) 
) 
Portia, 
 
I would say that the ancient plant, horsetail (Equisetum), is not likely to 
have the harmful protein amino acid sequences that cause damage in celiac 
disease. (As usual, I have to caution that this plant has not been tested in 
a scientific way, and I am making a guess based on taxonomy, but probably 
only wheat can be put in the scientifically tested category.) Horsetails 
were around long before any flowering plants, including the grasses, 
developed on the earth.  However, I don't know whether or not horsetails are 
a good thing to eat.  My guess is that they are not, but perhaps Joe Murray 
can help us on this.  Many horsetails contain silica deposits that are very 
abrasive and might damage the digestive tract.  In colonial times, 
horsetails were used for scouring pots.  Horsetails are rather amazing 
plants; they plague me by pushing right up through my concrete driveway at 
times. They will not be denied and I have never found a way to get rid of them. 
 
Don Kasarda 
========================================================================= 
Date:         Wed, 7 Dec 1994 12:56:56 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: celiac disease-spelt-proteins 
 
While rotation diets are interesting and may even have some potential in 
allergic individuals they are not appropriate for celiacs unless celiacs 
have an unrelated allergic condition. Due to the simimlarity in sequences 
and the repetitive nature of some of these sequences in grain proteins it 
likely that at least some of the deleterious sequences can persist 
follwing cooking or other treaatment.  A small amount of gluten can go a 
long way.  It seems to me that spelt is little more than an inefficient 
form of wheat. Joe Murray 
 
On Tue, 6 Dec 1994 cathyf@EARLHAM.EDU wrote: 
 
) As both a chemist and an allergic type, I don't find it at all 
) surprizing that people can be allergic to wheat but not allergic 
) to spelt. ANY change in a protein or other substance, no matter how 
) small, can make drastic changes in its effect. This is why it 
) is reasonable to test a food in different forms when testing for 
) allergy-- for example, you may react to the cooked food but not the 
) raw or vice versa. I reacted to soy at one time when in the form of 
) roasted soy beans or cooked soy beans, but not to tofu (processed 
) from soybeans). Some people can drink raw milk but not pasteurized, 
) for example. 
)     Then there are people who tend to react to whole families of 
) foods in all their forms (a reason why in the rotation diet, it 
) is suggested that food families be rotated rather than just individual 
) foods). Mysterious are the ways of the human body.... 
)               Peace, Cathy Flick  cathyf@earlham.edu 
) 
========================================================================= 
Date:         Wed, 7 Dec 1994 13:02:12 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: celiac disease - mechanisms 
 
It seems that i recall some mention of silica being suggested as a 
possible carcinogen at some point.  I have certainly not heard of it 
having any role in enhancing gut mucosal regeneration.   i would 
certainly be interesting in seeing it if there were. Joe murray 
 
On Tue, 6 Dec 1994, `|4nD4|_ wrote: 
 
) Dear Dr. Kasarda: 
) It has ocurred to me that silica (or silicon) may be beneficial in 
) healing the gut wall since it is essential for the maintainance of mucous 
) membrane linings in the body. Horsetail is an excellent source of natural 
) silica and I was wondering if it is gluten free?  Thank you for all your 
) interesting and very informative postings. 
)                                 -Portia 
) (parent of an autistic two and a half year old with celiac symptoms) 
) 
========================================================================= 
Date:         Wed, 7 Dec 1994 13:12:22 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: healing the gut wall 
 
I have no knowledge of how to speed up the healing of the gut apart from 
adhering to  strict gluten free diet.  there is somne evidence from A 
study done in DH that the use of a elemental diet may speed healing of 
the skin lesions. I advise that people take a nutriationally balanced 
diet and try to ensure that they have an adequate supply of 
micronutrients either from the diet or if there are marked defiencies by 
adding vitamins to the diet temporarily. 
I still suggest that it is necessary to have a biopsy of the intestine to 
confirm celiac disease. Gluten intolerant individuals who have not got 
celiac disease are an intellectual challenge and responses to trial of 
dietary intervention seem to be necessary to support the diagnosis. 
Have any of the studies on autism / schizophrenia been done double blind? 
Autism and schizophrenia are common in ireland, whether it is more or 
less common than elsewhere I dont know.  joe murray 
 
On Tue, 6 Dec 1994, Portia wrote: 
 
) Dear Joe Murry: 
) Thank you for your many interesting postings. I was wondering if you or 
) anyone has any advice on how to speed up the healing of the leaky gut 
) wall once gluten has been removed from the diet?  I have been using fresh 
) aloevera gel twice a day and natural silica gel orally for my son.A shot 
) in the dark but harmless and worth a try. Also vit. E. Any ideas? 
) Another question: is there a higher incidence of autism in countries 
) such as Ireland where celiac disease ocurrs more frequently? 
) My two and a half year old autistic son improved quite a lot when I 
) removed casein and gluten from his diet; esp. gluten. He was quite 
) addicted to bread and noodles to the exclusion of almost all other foods 
) before we changed his diet.  The diet resulted in reduced hyperactivity, 
) near ceasation of autistic self stimulating behaviors, normalization of 
) sleep habits and ceasation of hand biting and teeth grinding. My son has 
) had just about every symptom of celiac disease that I have read about and 
) has had diareaha all his life. He appears to metabolize everything 
) improperly but gluten and casein are the worst by far. I thought that if 
) I could give him digestive enzymes it might help reduce the amount of 
) peptides passing through the gut wall.  However I have read that the ph 
) of the stomach is too acidic for these orally ingested enzymes to survive 
) on their way to the gut. It has been suggested that bicarb (such as the 
) pancrease excretes) be given before meals and the enzymes given with 
) meals.  What do you think about this and what amount of bicarb and what 
) sort of timing would be optimal? 
========================================================================= 
Date:         Sat, 10 Dec 1994 09:20:04 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Dermatitis Herpetiformis 
 
In response to your questions about DH, The following represents my views 
about this curious and very itchy condition. 
In general DH is a severely itchy skin condition that often starts 
abruptly, affecting the elbows knees buttocks and scalp and the back. It 
usually starts as little bumps that can become tiny blisters and then 
aare usually scratched off.  It can occur in one spot only but usually 
occurs in many differnt areas.  The condition is related to the deposit 
under the skin of IgA deposits.  These occur in response to the ingestion 
of gluten iun the diet.  However once deposited there, they are only 
slowly cleared by the body even when the individual is gluten free. 
While most individuals with DH do not have obvious GI symptoms almost all 
have some damage in their intestine. They the potential for all of the 
nutritional complications of celiac disease. 
The diagnosis is made by taking a skin biopsy and preforming 
immunoflorescence studies on it ( a specialised type of stain in major 
laboratories)  The test is usually reliable but it takes a signifigant 
dedication to detect early cases where there is a short history of rash 
rather than years or months of rash. 
It is unusual to develope DH after the the start of a GFD for CD.  About 
5 % of CD patients will develope DH usually in the first 6-12 months. 
This probably reflects the long lasting nature of the deposits under the 
skin. 
treatment for DH is 2 fold. 
Remove the cause Gluten 
suppress the skin response with drugs Dapsone or some other sulphones 
The latter is the most common treatment used as it is rapidly relieves 
the the itch.  However there are some side effects associated with these 
mediacations and they need to be taken under mediacal monitoring with 
blood tests to detect side effects. 
It is my practise that DH should be treated with a GFD for life and use 
of drugs to get immediate relief in the short term.  It is usually 
possible to get pateint off the dapsone after several months of a strict 
GFD. 
The most common complication of DH is scarring which ususally fades with 
time. Occassionally there can be secondary infection from scratching. 
There is probably a slightly increased chance of malignancy in DH not on 
a gfd diet. 
Several physical triggers are known to set off an attack of DH. 
especially exposure to iodides and bromides which are contained in 
household cleaners. 
A very good reference for DH is available from  the GIG in washington. 
Joe murray 
 
On Fri, 9 Dec 1994, Dave Kinnaman wrote: 
 
) I am curious about the skin condition that I understand is associated with 
) celiac sprue. Here are some questions about the skin condition. 
) 
)  1. Is it *always* confined to certain parts of the body? 
) 
)  2. Does every celiac have the dermatitis at one time or another? 
) 
) I understand it must be red, and itchy, with raised spots. 
) 
)  3. Does it cover square inches of skin or is it very small? 
) 
)  4. What do the doctors like to do to treat it? 
) 
)  5. Are there any self-care comfort measures that help make it more 
)     tolerable or help it heal? Does heat or cold, for instance, make 
)     the dermatitis feel better? 
) 
)  6. How long does it stay after one has an outbreak? 
) 
)  7. What is the worst damage that dermatitis herpetiformous can cause? 
========================================================================= 
Date:         Sun, 11 Dec 1994 17:12:26 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      flour in the air 
 
In regard to the following statement by Michael Jones in a recent communication: 
 
"I know a well respected celiac who walked through a rice flour mill 
while they were also processing wheat flour.  She had a definite 
celiac reaction and never finished the tour." 
 
I know Mike Jones personally and have great respect for the excellent and 
vigorous work he is doing for celiac patients, but I have some concerns 
about this incident and statement in relation to celiac disease.  Perhaps 
some discussion by way of the bulletin board would not be out of order. 
 
I don't question that one person had a reaction when she/he walked through a 
plant that was processing wheat.  But does this have significance for the 
vast majority of celiac patients? When you say "a definite celiac reaction," 
what does that mean exactly?  As far as I know, celiac patients react to 
wheat they have eaten.  I haven't heard of a reaction from inhalation 
(although granted that may well just be because of my limited knowledge in 
the area).  There are allergies to flour that has been inhaled (baker's 
asthma, for example), but this is something other than celiac disease.  I 
wonder if any of the celiac patients reading this bulletin board have ever 
been in a kitchen where someone was making bread, cake, or cookies with 
wheat flour?  If they have, did they notice any reaction?  Perhaps we could 
have some response on this. Perhaps I am quite wrong in thinking that 
probably most celiac patients do not have such a reaction. I am not 
recommending that manufacturers co-process wheat and wheat-free products in 
the same room. I don't.   But, on the other hand, I wouldn't like celiac 
patients to be overly concerned about something that may not be a major 
problem.  They have enough to worry about as it is. 
 
Don Kasarda 
========================================================================= 
Date:         Mon, 12 Dec 1994 10:37:45 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: flour in the air 
 
The issue of airborne exposure to gluten should not be of concern to the 
vast majority of people with celiac disease.  The potential problem would 
likely relate to the swallowing of flour that wold have picked up by the 
mucous membranes of the nose and lower airways which is usually 
swallowed and ends up in the stomach.  i have had one patient who a 
relapse of her prblems diarrhea, when she started baking a large amount 
of cookies(gluten containing) on a dialy basis. 
A more likely route for ingesting gluten is through contamination of the 
food preparation surfaces.  I dont suggest a prohibition of celiac 
patients cooking with gluten, but i do suggest careful cleaning of 
preparation surfaces and avoiding clouds of flour. 
bread machines may present some challenges to get them really clean after 
using regular flour. Do peolpe  have any problems with cleaning their 
bread machines? 
 
Joe Murray 
 
On Sun, 11 Dec 1994, Donald D. Kasarda wrote: 
 
) In regard to the following statement by Michael Jones in a recent 
 communication: 
) 
) "I know a well respected celiac who walked through a rice flour mill 
) while they were also processing wheat flour.  She had a definite 
) celiac reaction and never finished the tour." 
) 
) I know Mike Jones personally and have great respect for the excellent and 
) vigorous work he is doing for celiac patients, but I have some concerns 
) about this incident and statement in relation to celiac disease.  Perhaps 
) some discussion by way of the bulletin board would not be out of order. 
) 
) I don't question that one person had a reaction when she/he walked through a 
) plant that was processing wheat.  But does this have significance for the 
) vast majority of celiac patients? When you say "a definite celiac reaction," 
) what does that mean exactly?  As far as I know, celiac patients react to 
) wheat they have eaten.  I haven't heard of a reaction from inhalation 
) (although granted that may well just be because of my limited knowledge in 
) the area).  There are allergies to flour that has been inhaled (baker's 
) asthma, for example), but this is something other than celiac disease.  I 
) wonder if any of the celiac patients reading this bulletin board have ever 
) been in a kitchen where someone was making bread, cake, or cookies with 
) wheat flour?  If they have, did they notice any reaction?  Perhaps we could 
) have some response on this. Perhaps I am quite wrong in thinking that 
) probably most celiac patients do not have such a reaction. I am not 
) recommending that manufacturers co-process wheat and wheat-free products in 
) the same room. I don't.   But, on the other hand, I wouldn't like celiac 
) patients to be overly concerned about something that may not be a major 
) problem.  They have enough to worry about as it is. 
========================================================================= 
Date:         Mon, 12 Dec 1994 11:04:24 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Attn NZ List members 
 
does anyone have knowledge of cd occuring in aboriginal peoples? Joe murray 
========================================================================= 
Date:         Mon, 12 Dec 1994 10:41:12 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      celiac dis. in aboriginals 
 
Joe Murray wrote: 
 
does anyone have knowledge of cd occuring in aboriginal peoples? Joe murray 
 
Joe, 
 
You might be interested in the article by Dohan et al., Biological 
Psychiatry 19:385-399 (1984), entitled "Is schizophrenia rare if grain is 
rare?" This article includes some studies of remote regions of New Guinea, 
the Solomon Islands, and Micronesia.  It does not deal specifically with 
celiac disease, however.  I suspect that aboriginal populations do not carry 
high frequencies of the histocompatibility antigens (MHC proteins) strongly 
associated with celiac disease. 
 
Don Kasarda 
========================================================================= 
Date:         Wed, 14 Dec 1994 11:46:48 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Celiac Blood Test 
 
These are some of my comments on the article below: 
serological testing has been a very useful tool in identifying potential 
patients with celiac disease.  However my enthusiasm for these tests is 
tempered by my experience,  These tests are not universally reliable, and 
are subject to occasional errors.  both false positive and false negative 
occur with all of the tests.  The studies that were done were all done in 
research labs on serum samples that were saved and run together.  How 
good these tests will be when done in commercial labs on an ongoing basis 
will be the proof of how good it is going to be in clinical practise.  in 
the US there is no standard version or methodology of how these tests 
should be run.  the EMA tests is very much interpretor dependent in that 
it requires an immunopathologist to look for a particular pattern of 
staining which can be difficult to call on occassion.  This is done in a 
dark room looking down a microscope at multiple samples.  it is not hard 
to imagine that there may be some fatigue if one is doing a large number 
of samples at the same time. 
 
With regard to the number of biopsies required for diagnosis unless I'm 
wrong the European pediatric Gastro and Nutrition assoc. has modified 
their criteria to require only one biopsy in most instances so long as 
the patient has good clinical repsonse to the diet.  I will occassionally 
do biopsies subsequently if questions remain regarding the original 
biopsy or to monitor reponse.  All decisions need to individualised to a 
particular patients needs and circumstances and these comments do not 
represent medical advice. 
 
It interesting to me that the diagnostic criteria for celiac disease are 
set by the EUropean pediatric group while the majority of patients are 
been diaggnosed in adulthood where the differential diagnosis may be 
quite different. 
 
On Tue, 13 Dec 1994, Michael Jones wrote: 
 
)                      The Celiac ActionLine, Fact Sheet 
)          Diagnosis of Celiac Disease and Dermatitis Herpetiformis 
) 
) 
)  Serological or Noninvasive Screening: 
) 
) 
)  The recent development of blood tests for the detection and screening  of 
)  celiacs and their relatives have produced  a useful aid to diagnosis  and 
)  monitoring.  The tests have a clinical utility in: 
) 
) 
)       *    Screening at-risk populations to identify biopsy candidates 
) 
)       *    Providing information to support a diagnosis of GSE 
)                                                      i 
)       *    Monitoring adherence to a gluten-free diet 
) 
) 
)  The blood samples required for the tests can be taken at your physician's 
)  office and shipped to a lab  for processing.  A national laboratory  that 
)  performs the serological tests is: 
) 
) 
) 
)       Specialty Laboratories, 2211 Michigan Avenue, Santa Monica, CA 
)  90404, phone (800) 421-7110 
) 
) 
) All three tests can be performed at Specialty Laboratories at a cost of 
)  $155.00.  A total of two ml. of serum is required to be shipped at 
)  ambient temperature.  The test is called the Celiac Disease or Gluten 
)  Sensitive Evaluation, test code number 1076.  Results are normally mailed 
)  within four days.  If the physician desires, these individual tests can 
)  be performed: 
) 
) 
)       Code Name                                    Cost 
)       1266 Anti-gliadin antibodies (IgG and IgA)   $98.00 
)       1162 Reticulin antibody (IgA)                $40.00 
)       1191 Endomysial antibody                     $50.00 
) 
) 
) 
)  Each test reports the following general information: 
) 
) 
)     * IgG and IgA Gliadin Antibodies 
)       IgG AGA is highly sensitive but is not as specific as IgA AGA. 
)       Histological evidence of muscosal response can appear from 2 
)       months to two years or more after reintroduction of gluten; 
)       however IgA AGA levels increase rapidly in response to the 
)       presence of gluten in the diet and decreases rapidly when 
)       gluten is absent from the diet.  IgG levels of AGA do not 
)       respond as rapidly. 
) 
) 
)     * IgA Reticulin Antibodies (ARA) 
)     * 
)       IgA ARA (R1 type) are highly specific for untreated CD.  The 
)       presence of IgA ARA correlates with flat mucosa; the antibodies 
)       typically disappear as the mucosa recovers. 
) 
) 
)    *  IgA Endomysial Antibodies (EmA) 
) 
)       The combination of IgA AGA and IgA EmA provides increased 
)       sensitivity and 100% specificity in screening patients with 
)                             ii 
)       active, untreated GSE. 
) 
) 
)       The  sensitivities  and  specificities  of  the  IgA  and   IgG 
)       antigliadin antibody and  the IgA  antireticulin antibody  have 
)       been compared with the  recently described endomysial  antibody 
)       directed against  the basement  membrane  of smooth  muscle  in 
)       monkey oesophagus. . . .   Endomysial antibodies were found  in 
)       all  patients  with  untreated  coeliac  disease  and  subtotal 
)       villous atrophy and in 47% of patients on a non-strict  gluten- 
)       free diet.    One patient  on  a strict  gluten-free  diet  was 
)       positive and had partial villous atrophy while all patients  in 
)       disease control groups  were negative.   Results were  variable 
)       with the antirectulin and antigliadin antibodies.   Sensitivity 
)       and correlation with subtotal villous atrophy in the  untreated 
)       patient was 100%.  It is concluded that the endomysial antibody 
)       is superior to other current antibody tests and should be  used 
)                                                          iii 
)       in preference for the diagnosis of coeliac disease. 
) 
) 
)       The blood test is a screening tool.  The biopsy remains the "Gold 
)  Standard". 
) 
) 
) 
)                                   Tests: 
) 
) 
)  The standard for identification of CD is a series of three biopsies. 
) 
) 
)       The first is to verify the typical pathological features of the 
)     gut. 
) 
) 
)       The second biopsy shows regrowth of the villi after several 
)     months on the GF diet.  There is one disease that gives a similar 
)     biopsy report and it can only be eliminated by the biopsy after 
)     improvement on the GF diet. 
) 
) 
)     The third biopsy is performed after a gluten challenge.  This 
)     biopsy is under dispute and some physicians do not require it. 
) 
)     It is critical that the physician and pathologists communicate 
)     regarding the suspicion of celiac disease. 
) 
) 
) 
)       A new variation of the test has been devised, which is simpler, 
)       safer, and more reliable.  The test involves challenging the 
)       patient with a rectal dose of gluten rather than an oral dose. 
)       A rectal biopsy, far easier to obtain than a jejunal biopsy, is 
)       then examined for the diagnosis.  The test was assessed in 11 
)       patients though to have celiac disease and 21 patients with 
)       other types of bowel disorder.  Six hours after rectal 
)       challenge with gluten digest, a rectal biopsy was obtained and 
)       examined for an increased in the number of lymphocytes within 
)       the epithelia tissue.  An increase of 10 percent of more was 
)       taken as indicative of celiac disease.  Among patients tested, 
)       the procedure produced one false positive and one false 
)       negative.  The result demonstrated that the rectal challenge is 
)       effective; it is also more rapid that the traditional oral 
)       test.  In addition, the test is preferred by some patients, who 
)       may refuse an oral test that must be followed by a jejunal 
)              iv 
)       biopsy. 
) 
) 
)  Research has produced  three simple and  noninvasive screening tests  for 
)  the detection and tentative diagnosis of  CD.  The tests show changes  in 
)  antibodies found in the blood.  The concepts of the tests are: 
) 
) 
)     In the active phase of the disease, serum IgA is markedly increased 
)     whereas IgM  remains  stable;  IgG decreases  probably  because  of 
)     protein-losing enteropathy.    These variations  revert  to  normal 
)     within a few  months of starting  a gluten-free  diet, in  parallel 
)     with mucosal lesions.  Simultaneously, antibodies directed  against 
)     a number of alimentary antigens, in particular against proteins  of 
)     other  cereals,  of  milk  and  egg  can  be  demonstrated  in  the 
)     circulation with  frequencies and  titres greater  than in  healthy 
)     children. 
) 
) 
)     Only  recently   have   newer  methods   of   detection   (indirect 
)     immunofluorescence, enzyme-linked immunoassy  (ELISA), antigens  of 
)     greater  purity  and  characterization   of  antibodies  to   their 
)     isotypes) allowed the extensive use of antigliadin antibodies as  a 
)     sensitive non-invasive  screening test.   Thus,  in young  children 
)     with active CD IgG antigliadin antibodies are found in 90 - 100% of 
)     cases while sensitivity of IgA antibodies  is somewhat lower (60  - 
)     100%).   On  the  contrary, IgA  antigliadin  antibodies  are  more 
)     specific (86 - 100%) than IgG  antibodies (60 - 95%).  Titres,  and 
)     the overall sensitivity of both IgA and IgG antigliadin  antibodies 
)     tend to decrease with age to 50 - 60% in children ) 3 years of age, 
)                    v 
)     or adolescents. 
) 
) 
) 
)  Additional information on this subject can be found in the articles: 
) 
) 
)     "IgA Antiendomysial Antibody Testing, A Step Forward in Celiac 
)       Disease Screening", Digestive Disease and Science, Vol. 36, 
)       Num. 6, 1991, pp. 752-756. 
) 
) 
)       "Disease Specificity and Dynamic of Changes in IgA Class 
)       Antiendomysial Antibodies in Celiac Disease"' Journal of 
)       Pediatric Gastroenterology and Nutrition, Vol. 6, Num. 4, 1987, 
)       pp. 529-534. 
) 
) 
) Disclaimer:    All  recommendations,  information,  dietary  suggestions, 
)  menus, and recipes promulgated  by this fact sheet  are intended for  the 
)  benefit of our readers and the  general public.  No liability is  assumed 
)  for the use of this information by GIG of Florida or Celiacs of  Orlando. 
)  Individuals should consult with their personal physician before following 
)  any medical  recommendations  mentioned  in this  newsletter.    Opinions 
)  expressed are those of the author and are not necessarily endorsed by GIG 
)  of Florida or Celiacs of Orlando.   Products mentioned or omitted do  not 
)  constitute endorsement.   Original  material used  in The  ActionLine  is 
)  placed in  the  public  domain for  the  benefit  of all  celiacs.    The 
)  information  is  not  copyrighted   to  facilitate  exchange  of   celiac 
)  information and thoughts.  January 8, 1994. 
) 
========================================================================= 
Date:         Thu, 15 Dec 1994 21:20:15 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Is food in tube feeding GF? 
 
In my experience most tube feeding solutions are mostly gluten free.  I 
say mostly because like most heavily processed food matierals it is 
difficult to track down all of the individual suppliers.  I usually 
recommend avoiding the flavor packets that are sometimes added to the 
mixtures.  Of note most of the solutions use soya protein which may upset 
some people with CD.  Joe murray 
 
On Wed, 14 Dec 1994, Sam Wylde wrote: 
 
) Dear Gabriel: 
) 
) I think Mary Alice Warren Warren of the Gluten Intolerance Group of Florida 
) may have had some experience which can help you. 
========================================================================= 
Date:         Wed, 21 Dec 1994 12:33:05 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: fatigue and celiac disease 
 
I am wondering if members of the list have had significant muscle 
weakness associated with CD that has not responded to the GFD. I realise 
that most patients with untreated CD have fatigue I am presently seeing a 
small number of individuals who have severe muscle fatigue that has not 
repsonded to a GFD even though the GUT has healed. An exhaustive search 
for autoimmune diseases is negative exept in one case ANA antibody 
positive.  There are no apparent nutritional defeciencies.  has anyone 
out there had a good response of severe fatigue symptoms to either 
dietary or other therapy, conventional or unconventional? 
  Joe Murray 
========================================================================= 
Date:         Wed, 21 Dec 1994 12:40:35 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      the impact of managed health care on the diagnosis of CD 
 
I am wondering what people's experience has been with HMO's etc and 
whether that type of health care insurance has had any impact on their 
getting medical care or diagnosis.  It has been my impression that some 
managed care plans make life quite difficult for people with rare or 
underrecognised conditions such as celiac disease. 
joe Murray 
========================================================================= 
Date:         Wed, 21 Dec 1994 23:28:09 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: the impact of managed health care on the diagnosis of CD 
 
I feel I should comment on the rationale that suggests that it is 
acceptable practice not to investigate a patient for suspected CD when 
the patient has already commenced the treatment .e. the GFD. 
Certainly it is cheaper for the HMO and probably the patient in the short 
term. 
I feel that proper confirmation of the diagnosis is necessary and should 
remain the "standard of care" with few exceptions such as a history of 
life-threatening eactions to gluten challenge. 
1. Lack of a firm diagnosis can leave some patients with an uncertainity 
that can undermine thier motivation to remain on the diet. 
2. There may be another diagnosis instead of celiac disease.  One can 
occassionally see patients with crohn's disease respond to dietary 
manipulation. 
3. May patients who really have CD but have been treated with a gfd 
without any real confirmation may not be gluten-free enough to result in 
healing of the mucosa of the intestine.  The mucosal condition not 
necessarily symptoms determine the risk of complications of CD 
4. Many people really neeed to know for their own peace of mind 
5. Family risk of CD is really dependent on the original patient having a 
solid diagnosis of CD 
 
I wonder if the rather cursory suggestion of well you're on the treatment 
anyway so just continue is reasonalbe.  Would I want to continue to take 
blood pressure pills if I really did not have hypertension? 
 
I would be interested in hearing the conferences opinions on this 
Joe Murray. 
========================================================================= 
Date:         Wed, 21 Dec 1994 23:45:03 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: fatigue and celiac disease 
 
thank you for the response. 
The response of the celiac's intestinal mucosa seems to be specific to 
certain sequences of aminoacids that are found in the various grains 
Wheat, barley, rye and oats.  A jumble of individual amino acids will not 
cause the same response that we know of. Our knowledge of what causes the 
reaction is based on three observations. 
1. The response of known celiac to challenges of specific grain proteins 
2. Biochemical analysis of protiens and taxonomy( see dr kasorda's 
earlier posts to the conference for details. 
3. some tests in vitro on tissue biopsies to amino-acid sequences. 
 
Because of the variabilty of response times and sensitivity between 
individuals it is quite difficult to be certain about other more exotic 
grains.  Some celiacs dont respond to oats.  However as I have already 
pointed out there may be covert damage ongoing in some individuals 
despite lack of acute symptoms. 
It is unlikely to be just high molecular weight proteins causes problems. 
There very rare reports of other food proteins causing similar leasions 
to CD. In I know of only one definite one  to soy even though a number of 
CD patients report symtoms with soy. 
  My approach is that if a patient with celiac disease knowingly takes 
gluten containing food on a regular basis I suggest that a follow up 
biopsy be done to ensure that covert damage is occurring. 
Of course I much prefer if the individual would eat safe remain well. 
Joe Murray. 
 
On Wed, 21 Dec 1994, Portia wrote: 
 
) Dear Joe Murray: 
) Since celiac disease is immune related could not the sufferer also be 
) suffering from some form of chronic fatigue syndrome? 
) Also, I read the following in a medical book description of celiac: 
) 1)"Gluten and the related substance gliaden are high-molecular-weight 
) proteins found especially in wheat." 
) Q: Could other high-molecular-weight proteins be bothering a celiac? 
) 2) "It has been demonstrated that patients with sprue in remission will 
) develope steatorreah and typical mucosal changes when they are given gluten. 
) Similar results will occur with the administration of peptide 
) hydrolysates containing at least eight amino acids with a terminal 
) glutamine residue." 
) Q: Does this mean that certain foods or amino acid combinations could be 
) harmful in the same way as gluten? 
) Thank you for your thoughtful posts and your reply. 
)                                 -Portia 
========================================================================= 
Date:         Fri, 23 Dec 1994 15:03:26 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: the impact of managed health care on the diagnosis of CD 
 
It is certainly possible for crohn's patient to have certain foods worsen 
their symptoms.  Crohn's disease may be almost indistinguishable from 
celiac disease in certain circumstances and may even occur in the same 
patient. certainly it is preferable to have celiac disease as its 
treatment is more sucessful than crohn's.  CD has been diagnosed in some 
patients mistakenly diagnosed as Crohn's disease.  Gastroenterologists 
tend to be more aware of crohn's disease than of CD and there may be a 
familiarity-bias involved.  Joe Murray 
 
On Thu, 22 Dec 1994, Bryan Carpenter wrote: 
 
) That's interesting.  I've been diagnosed as having Crohn's disease for 
) several years (a little tentatively---it took the doctors a long time 
) to make up their mind).  A couple of years ago I started experimenting 
) with diet.  I noticed that cutting down bread consumption seemed to 
) improve my health.  That was before I knew anything about gluten-free 
) diets or Celiac disease, and it seemed strange and unlikely at the time. 
) 
) At some stage I found out about Celiac diets, and cut out wheat.  This 
) *seemed* to eliminate most of the Crohn's symptoms. 
) 
) Is it possible for Crohn's sufferers to be gluten sensitive? 
========================================================================= 
Date:         Tue, 27 Dec 1994 07:02:36 GMT 
From:         Kalle Reichelt (K.L.Reichelt@rh.uio.no) 
Subject:      Gluten,autism and schizophrenia 
 
A: Experiments double blind with gluten and schizophrenia:Most have been on 
far too small series and for very short time .We found in a double blind 
study that the peptide patterns took at least 28 weeks to normalize (Reichelt 
et al (1990) J Orthomolec. med 5:223-239.) 
 
Also two positive studies have been reported 1) Singh MM and Kay SR (1976) 
Science 191:401-402.2) Dohan FC and Grasberger JC (1973)Amer J Psychiat 
130:685-686.  Several negative statistically evaluated reports (on small 
series) generally however, describe individuals that respond favourably. They 
were for short periods of time though and on chronic or semichronic patients 
.In these patients we know that there are morphological changes in the CNS. 
The references are : Potkin SG et al (1981) Am J Psychiat 138:1208-1211. 
Storms LH et al (1982) Arch gen Psychiat 39:323-327.Vlissides DN et al 
(1986)Brit J psychiat 148:441-452.Rice JR et al (1978) Am J Psychiat 135: 
1147-1148. All of thes have been citicized for lack of statistical power ( 
King 
DS (1985) Biol Psychiat 20:785-787.) 
 
Double blind on autistic children is very hard to do. Howver,we have run the 
urines blind and applied the strategy of two independent persons to carry out 
functional tests  and evaluation . The results cannot possibly be placebo 
because they last for 4 years  and those that quit diet show REGRESSION. In 
spite of ordaining longer time to complete the tests the children off diet 
could not complete tests easily finished when on diet. References: Knivsberg 
A-M et al (1990) Brain Dysfunction 3:315-327. Reichelt KL et al (1990)J Appl 
Nutrition 42: 1-11. Reichelt KL et al (1994) Dev Brain Dysfunct.7:71-85. 
 
Epidemiology : I would like to draw your attention to two papers that are 
extremely well done: Lorenz K and Lee VA (1977) The nutritional and 
physiological impact of cereal products in human nutrition . CRC Critical 
Reviews in Food Sci and Nutrition 9: 383 -457. Lorenz K (1990) Cereals and 
Schizophrenia .Adv in Cereal Sci and Technol X: 435-469. 
 
Gut permeability : Because peptides ( Gardner MLG(83) Biochem Soc Trans 
11:810-812.and this year a review, and also intact proteins are taken up in 
normal persons (eg Husby S et al (1985) Scand J Immunol 22:83-92); there is 
no need for increased uptake. All we need is decreased breakdown ,something 
which regularly causes peptiduria and peptidaemia (Wright EC et al (1979)J 
Inherit metab Disease 2: 1-3; BlauN et al (1980) J Inherit metab Dis 11 
(suppl 2) 240-242.; Lunde H et al (1982) J neurochem 38:238-246; Abassi Z 
et al (1992) metabolism 41:683-685; Watanabe Y et al (1993) Res Comm. Chem 
Pathol Pharmacol 81:323-350.) 
 
Because peptides generally are good peptidase inhibitors ( La Bella FL et al 
(1985) Peptides 6:645-660) it is easy to see that vicious circles can get 
going. This process may even start before birth because intact antigens have 
been found in mothers milk too (Axelsson I et al (1986)Acta Paed Scand 
75:702-707; Troncone R et al (1987) Acta paed Scand 76:453-456; Kilshaw and 
Cant 81984) Int Arch Allergy Appl Immunol 75:8-15 and Stuart CA et al (1984) 
Clin Allergy 14:533-535). 
 
Finally I would like to draw your attention to the fact that the coeliac 
inducing peptide isolated from gliadin ( Wieser H et al (1984)Z Lebensmittel 
Unters Forsch 179:371-376 contains the gliadinomorphin sequence 
Y-P-Q-P-Q-P-F. Also the gluten molecule contains up to 15 opioid sequnces 
brilliantly elucidated by Prof DR Yoshikawa (Fukudome SI and Yoshikawa M 
(1991) FEBS Letters 296:107-111)and such opioids are formed in the gut. 
 
Some references on gut leakage and schizophrenia will be forwarded later . 
However, Dr Sci MLG Gardner, School of Biomediacl Sci .Univ of 
Bradford,Bradford BD 7 1DP ,United Kingdom is extremely knowledgeable on this 
matter. 
 
Seasonal greeting to all . 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:         Wed, 28 Dec 1994 07:04:22 GMT 
From:         Kalle Reichelt (K.L.Reichelt@rh.uio.no) 
Subject:      Autism and coeliac disease. 
 
1:   Already Prof Asperger in Austria noticed that many (not all) coeliac 
children showed psychiatric problems (Asperger H (1961) Die Psychopathologie 
des Coeliakikranken Kindes. Ann. Paediat.197:146-151).   A similar 
relationship of malabsorption to autism was also indicated in theUSA (Coleman 
M ed: Autistic syndromes .North Holland Press,Amsterdam 1976.)  See also 
Goodwin MS et al (1971) J Autism Child Schizophrenia 1:48-62. 
 
Coeliac disease may go undetected until lyphoma is discovered . It is 
relevant that  one of the dominant symptoms  is depression (carried out in 
Sweden) (eg Hallert C et al (1982) Scand J gastroenterol 17:25-28.) 
 
2: Because we have a) isolated bovine casomorphin 1-8 immunoreactive peptides 
from the urine and dialysis fluid of schizophrenics and autistics (eg 
Reichelt KL et al (1991)Brain Dysfunction 4:308-319) and also find an 
increased frequency  of IgA antibodies higher than the upper normal limit 
(Reichelt et al (1994) Dev Brain Dysfunction 7:71-85; Reichelt and Landmark 
(1994) Biol Psychiat In press), there is reason to believe that opioids from 
the diet are important.The mucosa is normal in these cases as are endomycium 
antibodies. 
 
3: The structure of gliadinomorphin is Y-P-Q-P-Q-P-F and is found inside 
Wieser s peptide causing coeliac disease. The structure of casomorphin 
(bovine) is very similar : Y-P-F-P-G-P-I.  We have recently found evidence 
for gliadinomorphin too (in prep). 
 
4: Opioids may very well be important to the development of autism because 
they modulate trophically CNS development ( Zagon and McLaughlin (1987) Brain 
Res 412:68-72; Zagon and McLaughlin(1989)Brain Res 490:14-25).  Also the 
psychophysiological work of Panksepp is extremely important  and relevant to 
this  problem (eg Panksepp L et al (1980) neurosci Biobehav Rev 4:473-487). 
The pruning of synapses which is essential to normal development is likewise 
disturbed by opioids . 
 
5. Certain epilepsies and CNS damage of various kinds can be related to 
factors derived from gluten in spite of  normal vitamin levels .See for 
instance Gobbi G et al (1992) The Lancet 340:439-443; Paul KD et al(1985) Z 
Klin Med  40:707-709; Cooke WT et al (1966) Brain 89:683-722; Ward ME et al 
(1985) Neurology 35:1199-1201; Kinney HC et al (1982) J neurol Sci 
5:9-22;Finelli PF et al (1980)Neurology 30:245-249). 
 
6.  The important genetic studies done by Sir M Rutter and his crew indicates 
that at least two(2) genetic defects must be present. (Le Cotour A (1988) 
Aspects of Autism .Edit:L Wing, gaskell ,The nat Aut Soc  pp 38-52). It is 
therefore probable that either two peptidase defects ( Reichelt et al 
(1994)Dev brain Dysfunct 7:71-85) or a peptidase defect combined with 
sulphation defect as suggested by Prof Dr R Waring could be the root 
cause.(Waring and Reichelt ; in press). After all defective transulphation 
would cause defects in aminoglycans lining the gut wall and therefore 
increase transmucosal transport or diffusion as shown in certain dieased 
states ( Murch SH et al (1993) The Lancet 341:711-714). Certainly gut uptake 
of various compounds should be performed as soon as possible in these 
diseases. 
 
7: Dr Sci MLG Gardner ,Univ of Bradford School of Biomed Sci is an authority 
on the gut and various uptake mechanisms .His fax no is - 0274 309 742 
England. 
 
8.: In post-partum psychosis ,which is one of the most vivid psychotic 
conditions known , the Swedes have shown that human casomorphin is the 
mediator and accumulates in blood, spinal fluid and urine. (Lindstrom L et al 
(1984)Am J Psychiat 141:1059-1066.) Human casomorphin is present as a family 
of peptides and has the structure Y-P-F-V-E-P-I-P and exists as 1-8,1-7,1-6 
etc.   It has long been known that stopping milk production fast (before 
receptor changes take place) eleviates the psychotic condition . 
 
9: There is going to be a very technical and basic meeting on the 
relationship of gluten to disease especially epilepsy in San Marino (a small 
independent country inside Italy)  april 10-12 1985. The registration  is in 
the hands of: 
San marino Conference c/o Ufficio Attivita promozionali 
Instituto Sicurezza Sociale ,Via la Toscana -Cailungo 
47031 Republica San Marino. 
 
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:         Wed, 28 Dec 1994 14:25:15 PST 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.GOV) 
Subject:      lactose intolerance 
 
As an addition to Bill Elkus's posting on lactose intolerance, I will 
mention that about 80% of Northern Europeans are lactose tolerant as adults 
(through maintenance of their levels of the enzyme lactase), but that leaves 
20% who are lactose intolerant as adults.  Throughout much of the rest of 
the world these numbers are reversed, with about 80% of the populations 
intolerant of lactose as adults.  If you are someone with celiac disease who 
happens to be among the 20% (or 80% in the second case) who are lactose 
intolerant, you probably will not be able to tolerate lactose even when 
largely recovered on a gluten-free diet because your lactase levels have 
declined in what is a largely normal process after the need for digestion of 
breast milk (with high lactose levels) has disappeared.  I have heard, 
however, that lactose intolerant individuals can usually tolerate small 
amounts of lactose, but, say, consumption of a large glass of milk would 
probably get to them pretty quickly. 
 
Don Kasarda 
========================================================================= 
Date:         Sat, 31 Dec 1994 21:54:35 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Anemias and celiac disease 
 
This is to address the issue of anemia in celiac disease. 
Anemia is common in untreated CD and is often due to IRON def, folate 
acid def as the two most common nutritional deficiencies. 
Anemia that persists after the GFD is started may of course be due to the 
preceeding def. state or an associated condition.  the most common one is 
pernicious anemia.  This is another autoimmune disease that affects the 
abilty to absorb vit B12.  Oral b12 does not make up for this.  It is 
easily diagnosed with a blood test.  Other conditions can also cause 
anemia such as LUPUS, ulcers( these can be peptic or more seriously 
occur  as a complication of celiac disease in the intestine. 
another cause is intestinal blood loss from the GI tract due a malignant 
or sometimes benign growth.  The continuation of anemia in a celiac or 
the new occurence in a trEATED celiac should prompt careful consideration 
of the diagnostic considerations NOT empiric trials of self prescribed 
regimes.  this is especially important in patients over 40 years of age 
There are many other rare causes of anemia so its not always simple 
sometimes requires the attention of a hematologist in addition to a 
gastroenterologist. 
Joe murray 
 
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Disclaimer

This fact sheet has been designed to be a general information resource. However, it is not intended for use in diagnosis, treatment, or any other medical application. Questions should be directed to your personal physician. This information is not warranted and no liability is assumed by the author or any group for the recommendations, information, dietary suggestions, menus, and recipes promulgated. Based upon accepted practices in supplying the source documents, this fact sheet is accurate and complete. Products mentioned or omitted do not constitute endorsement.

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