Expert Postings
April 1995

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

Table of Contents

 
This file contains postings made by the following professionals: 
 
   Dr. Alessio Fasano--a pediatric gastroenterologist at the University 
      of Maryland School of Medicine in Baltimore.  Dr. Fasano is the 
      director of the Division of Pediatric Gastroenterology and 
      Nutrition at the University of Maryland.  With his colleagues at 
      the University of Maryland he conducted pilot studies suggesting 
      that CD is highly underdiagnosed in the USA.  His major goal is to 
      expand these preliminary studies and to establish an educational 
      program for colleagues to gain more insights on CD. 
 
   Dr. Ivor Hill--a pediatric gastroenterologist at the University of 
      Maryland School of Medicine in Baltimore.  Dr. Hill is attempting 
      to establish a network of collaborators that will be involved in 
      gathering preliminary data to support his belief that if we 
      actively look for CD we will diagnose many more cases at an earlier 
      age. 
 
   Dr. Karoly Horvath--an associate professor of pediatrics ath the 
      University of Maryland at Baltimore.  Dr. Horvath set up the 
      Pediatric Gastrointestinal and Nutrition Laboratory, and is 
      now director of this lab. 
 
   Donald Kasarda--a grain specialist working for the United States 
      Department of Agriculture. 
 
   Dr. Joseph Murray--a gastroenterologist at the University of Iowa, 
      USA, where they have a mutidisciplinary service for the clinical 
      care of people with celiac disease.  They are also involved with 
      clinical research and medical education related to celiac disease. 
 
   Dr. Kalle Reichelt--involved in research in Norway.  He is looking 
      into the impact of gluten intolerance on certain individuals with 
      developmental delays. 
 
   Paul Shattock--Senior Lecturer in Pharmacy, Autism Research Unit, 
      School of Health Sciences, University of Sunderland; Sunderland, 
      England.  He is doing research on the relationship between 
      gluten/casein and autism.  His work has application to other 
      developmental and mental disorders. 
 
========================================================================= 
Date:         Mon, 3 Apr 1995 23:47:44 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: causes of diarrhea in people with CD 
 
If someone has confirmed celiac disease and gets a bout of diarrhea I 
think the most likely reason is gluten.  Looking very closely at the diet 
in the days before the event may explain the diarrhea.  If everyone in 
the family have had diarrhea then it is more likely to be infectious.  If 
there are several episodes of diarrhea happening say every month that is 
too often for infections,  somethings in the diet. Joe Murray 
Not medical advice to be used in individual situations.  More like 
general information.  Individual problems need discussion with a personal 
physician. 
========================================================================= 
Date:         Mon, 3 Apr 1995 23:58:34 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC disease viral connection 
 
The enteropathy that occurs in AIDS is a complex process that may be the 
result of may abnormalities including infections, HIV viral infection 
itself, and autoimmune processes that occur due to the dysregulation of 
the immune system. There are some slight similarities between the two 
conditions.  I have yet to hear of the 2 conditions co-existing in the 
one individual.  The use of the term gluten free in advertisements for 
food supplements for AIDS probably refects the growing awareness among 
these companies of the things to leave out of food supplements like 
lactose, gluten and other things.  Wheat itself may not be completely 
digested in normal individuals and hence the challenged digestion of the 
unfortunate victim of aids enteropathy may have more difficulty with 
wheat than with other foods. 
the observation that CD may become apparent after a viral infection is a 
common phenomenon in many autoimune diseases as well as GI inflammatory 
states.  I have seen 2 cases of inflammatory bowel that occurred after an 
attack of CMV ( a common and usualy very benign disease in healthy 
people. This could be related to the non-specific stimulation of the 
immune system or a more specific incutement of a reaction to a host ( 
patient ) protein leading to disease. The example that has been suggested 
in CD is Adenovirus 12.  see multiple references under KAgnoff M. 
Joe Murray 
========================================================================= 
Date:         Tue, 4 Apr 1995 00:04:45 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Communion wafers 
 
Forgive my theological ignorance but are GFD wafers acceptable to 
catholic churches in Canada? how about Episcopal or Anglican? 
In some churches canon law says that the host is not bread any more, 
therefore , theologically speaking, it can not contain any gluten! 
I would appreciate any suggestions that I can pass onto my 
multidenominational clinc patients. 
Joe Murray 
========================================================================= 
Date:         Tue, 4 Apr 1995 00:18:46 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and osteoporosis 
 
Osteoporosis is not only more common in CD but decreased bone density is 
almost universal in people diagnosed as adults esp in women.  The good 
news is that it usually imptroves with a gluten free diet. Joe murray 
========================================================================= 
Date:         Tue, 4 Apr 1995 00:26:55 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: terminology 
 
The term celiac disease does indeed refer to a disease.  what you call a 
healed celiac I dont know. 
ideas.  we could return to the original term used by Samuel Gee in 1888, 
the Coeliac affliction.  or  gluten sensitivity, 
I did overhear a waitress at hotel in Florida at which a number of people 
with celiac disease were staying and having b'fast call out in a 
wonderful cockney accent " Who are the GLUTONS" 
any one with any suggestions? 
========================================================================= 
Date:         Tue, 4 Apr 1995 19:38:31 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC disease viral connection 
 
I think that asymptomatic peolpe with CD are quite common.  1/2 of 
affected family members have no symptoms.  However if you have fatigue 
then you are not asymptomatic, just atypical rather than classic 
preentation.  Joe Murray. 
Are there any married couples out there who both have CD and at least one 
developed after they met.  Joe Murray 
========================================================================= 
Date:         Tue, 11 Apr 1995 08:30:21 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      Re: Wheat grass 
 
)I am wondering about wheat grass. 
 
Reply from Don Kasarda, Albany, CA 
 
The vegetative tissues of wheat or wheat grass should not contain any of the 
harmful gluten proteins (harmful to celiac patients, that is).  However, if 
heads have formed and grain development initiated, the developing wheat 
grains or grass seeds could have harmful proteins.  Thus, if you are sure 
that no head development has occurred, you are probably safe in eating wheat 
grass.  I am familiar with the sale of juices from wheat grass, but I am not 
familiar with actually eating wheat grass.  In the case of the bottled 
juices (squeezings, pressings), it would be difficult to know the state of 
grass development when the wheat grass was harvested for pressing.  I hope 
this will be of some help. 
========================================================================= 
Date:         Sun, 16 Apr 1995 20:19:09 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: HLA Typing 
 
Jim Lyles writes about the gene typing test to determiine risk for celiac 
disease.  Hla typing May hepl in populations where the genetic make up of 
the celiac population is known and that of the general population is 
known also. Unless I am incorrect I have not seen any stiudy address the 
issue of negative predictive value of HLA typing. In the melting pot of 
the USA i would be a little more circumspect about its value.  Joe 
Murray. 
PS  If you are a HLA matched siblibg of a celiac patient then you will 
have a higher chance of getting it. JM 
========================================================================= 
Date:         Sun, 16 Apr 1995 20:29:41 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Costs of tests 
 
Costs of tests for making a diagnosis are dependent on the patient problems 
1. Antibodies can run anywhere from 120 -240 dollars 
a panel should include endomysial antibody IgA, and gliadin testing IgG, 
and IGA 
2. The process of getting a biopsy involves a doctors visit fee and 
endoscopy charges, a pathology charge for the interpretation. 
These often are considerable charges and vary by location and insurer. 
Real dollar costs can vary 1000-2000 dollars 
and maybe higher in some circumstances/places. 
Remember price doesnt always reflect value or reliablilty.  Joe Murray 
========================================================================= 
Date:         Mon, 17 Apr 1995 10:24:35 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: asymptomatic family members of people with celiac disease 
 
people with Syymptoms of CD and/or positive blood tests ( antibodies) 
should probably have a biopsy too confirm that they have CD. 
Why? 
Osteoporosis 
subtle symptoms like chronic fatigue, depression etc 
Risk of malignancy, 
Certainty: usually needed to motivate diet compliance for life 
Risk of developing symptoms later in life when it may not respond as well 
to gluten withdrawal. 
Perhaps to allow searches of another branch of the family related to 2nd 
person. 
as yet blood tests are not precise enough to make the diagosis without a 
biopsy.  joe Murray 
Disclaimer( not specific medical advice. Individuals should discuss 
matters with their own doctor) 
========================================================================= 
Date:         Mon, 17 Apr 1995 10:36:59 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Where are the irish? 
 
We here in the USA.  The lack of participation probably reflects the 
relative lack of access of the public to the internet in ireland.  only 
Universities and some companies( usually computer companies have e-mail) 
I will personally try to recruit some of my countrymen and women to the 
list. Joe Murray 
========================================================================= 
Date:         Mon, 17 Apr 1995 10:45:39 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: Gliadin IgG postive only test 
 
I believe I have written before on this topic to the list. 
The IgG anti gliadin may be postive alone for many reasons including 
1. The person doesnot have CD 
2. The person has CD and IgA defiency 
3. The person has latent gluten senstivity i.e. There is evidence for 
serum antibodies but a completely normal small intestine and no symptoms 
4. The other antibody tests are wrong and the person does have CD 
5. Occassional low level positives can be seen in normals , people with 
giardiasis, crohn's disease. 
Joe Murray 
disclaimer( not medical advice) 
========================================================================= 
Date:         Mon, 17 Apr 1995 11:05:27 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and hives 
 
There may be an increased risk of hives in celiacs due to the leaky gut 
which allows macromolecules into the blood system where they dont 
belong.  This makes the developement of allergic reactions to the 
allergens more likely. 
On the good side The permeability can iimprove with strict adherence to a 
GFD. Avoidance of the allergen if known is helpful if known 
Prescription mediacation may help to reduce the severity of the illness. 
The other consideration is whether this could an atypical form of 
dermatitis herpetiformis. 
Joe Murray 
Disclaimer( not mediacl advice) 
========================================================================= 
Date:         Mon, 17 Apr 1995 11:18:23 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and dermnatitis herpetiformis 
 
I have put a post on this subject before to the list so search the archives. 
The GIG of seattle have a very nice synopsis on the topic that they 
give/send to health professionals and They may give to you too. 
I am not sure if everyone with a confirmed case of DH needs to have a 
biopsy of the intestine. 
Certainly a definite postive biopsy of the skin confirms gluten 
sensitivity of the individual. 
 If The person adheres to a strict gluten free 
diet to manage their skin condition then It is not always necessary to 
biopsy the intestine. 
The biopsy can provide useful additional information, but if it to 
persaude anwilling patient/dermatologist that a diet if beneficial then a 
careful explanation of the scientiific information should suffice to 
persuade most.  The eventual should be to control the skin condition with 
the GFD alone.  There is no doubt that the drugs used dapsone and sulfa 
drugs are very useful to get the itch under control but they can have 
side effects and do not benefit the intestinal damage that often 
co-exists. 
Joe Murray 
disclaimer( not medical advice) 
========================================================================= 
Date:         Mon, 17 Apr 1995 16:48:06 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      Re: mouth ulcers and white flecks on the nails 
 
Information that might be of interest provided by Don Kasarda, Albany, CA 
 
Cliona O'Farrelly writing in "Gastrointestinal Immunology and 
Gluten-Sensitive Disease" (Eds., C. Feighery and C. O'Farrelly, Oak Tree 
Press, Dublin, 1994, pp. 169-180) states: 
 
"However, there is evidence to suggest that gluten sensitive ROU (recurrent 
oral ulceration) also occurs in the absence of classic celiac disease.  The 
oral lesion in patients with normal small intestinal architecture responds 
to treatment with vitamin B12 and folate suggesting that a malabsorptive 
process was active even in the absence of any detectable small intestinal 
lesion (7, 61).  The small intestinal lesion in these patients may be too 
subtle to be seen by routine histology and yet be sufficient to activate a 
pathogenic process which manifests itself more visibly and actively in the 
buccal mucosa.  It has been proposed that wheat protein plays a primary 
pathogenic role in some of these cases (52, 53)." 
 
)My 6 year old daughter was diagnosed as having celiac disease 2 years 
)ago.  Since starting a gluten-free diet she has been very healthy, and 
)has a good appetite and lots of energy.  However, she does have a problem 
)with mouth ulcers, which come and go quite frequently.  In addition, she 
)has small white flecks in some of her finger nails, which I believe may 
)indicate some vitamin or mineral deficiency. If anyone can offer any 
)suggestions regarding these two complaints, I would be very grateful. 
) 
)Robert Hewitt 
========================================================================= 
Date:         Wed, 19 Apr 1995 11:30:15 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and atypical symptoms 
 
As physicians start to biopsy the small intestine more frequently there 
is an increased awareness of the atypical nature of the symptoms of 
celiac disease.  The majority of the patients I see have not presented 
with the Classic symptoms but much more vague ( Not directly due to the 
small intestinal malabsorbtion) presentations.  Certainly I have seen 
patients who have had reflux as their presentation which gradually tends 
to improve after several months of the diet. I dont know why this but I 
suspect it may be due motor incoordination between the stomach and 
inflammed small intestine.  This might lead to retention of food in the 
stomach for a longer time and a greater risk of reeflux of the acidic 
stomach contents nto the esophagus.  Acid reflux is a very common 
condition and it may be that it just co-exists with the celiac disease. 
The only way of knowing for sure is if all of the symptoms go away after 
a year of a totally gluten free diet. 
Not medical advice 
Joe Murray 
========================================================================= 
Date:         Thu, 20 Apr 1995 17:05:32 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      Gluten in corn? 
 
There is much confusion in terminology when it comes to gluten. Here is the 
way I understand it. 
 
 The term gluten in reference to the cohesive, elastic protein mass 
remaining after starch is washed from a dough goes back to Beccari in 1745. 
Strictly speaking, gluten is found only in wheat because it is difficult to 
wash a cohesive protein mass even from rye, the closest relative to wheat, 
let alone from barley or oats or anything else.  Unfortunately, a misuse of 
the term by the corn industry has become common in recent years. It has 
become fairly common to call corn storage proteins "corn gluten." 
Personally, I think there is no justification for such usage.  Corn may 
contain prolamins, as does wheat, but gluten--no way!  When it comes to 
celiac disease, a similar corruption of the term has become very common. 
There are certain related proteins in wheat, rye, and barley that give rise 
to particular peptides during digestion that are capable of triggering the 
responses typical of celiac disease.  Only in the case of wheat can these be 
strictly considered to be derived from the gluten proteins.  But for lack of 
a suitable term, patients and their physicians began speaking of gluten-free 
or gluten-containing foods.  People ask me, "How much gluten is there in 
quinoa?"  I have to translate this into, "Are there any harmful peptide 
sequences in the proteins of quinoa?"  There is nothing in quinoa that is 
like gluten prepared from a wheat flour dough, which has an unusual, perhaps 
unique, viscoelastic character.  Anyway, as far as we know, corn does not 
seem to cause harm to celiac patients.  Corn has not been studied in the 
extensive way that wheat has in relation to celiac disease, but for 40+ 
years patients and their physicians have seemed to agree that corn is OK. 
The sequences in the corn zein (prolamin) fraction are suspicious, but they 
do differ in an apparently crucial way from the protein sequences of the 
wheat gliadin (prolamin) fraction.  So, I have to admit that there have been 
no modern biopsy based studies of the effects of purified corn proteins on 
the celiac intestine as there have been for wheat, but the mass of evidence 
still seems to point in the direction of corn being safe for celiac patients. 
 
Disclaimer: The above is my opinion, it should not be considered definitive 
in a legal sense nor should it be considered medical advice by anyone. 
 
Don Kasarda, Albany, CA 
========================================================================= 
Date:         Sun, 23 Apr 1995 15:05:11 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      Re: Is diagnosis necessary? 
 
John Tisdale states (an excerpt from a longer communication): 
 
)A close friend and physician suggested that it was the gluten in the 
)wheat that was the problem.  After removing wheat from my diet at age 
)23, all headaches subsided (bleached wheat did not cause headaches for 
)me). 
 
I would just like to point out that bleaching of flour has no effect on 
gluten proteins that I am aware of.  The amino acid sequences found in 
gluten proteins that trigger the intestinal changes of celiac disease would 
still remain and be released to contact with the intestinal surface during 
digestion. 
 
I would also like to make an additional comment: I continue to be concerned 
that the myriad personal symptoms described on this list might make many 
other people with celiac disease think that these symptoms are necessarily 
part of having celiac disease.  I think there is value in having this 
information on the list, but whether many of these symptoms and the remedies 
indicated have anything to do with celiac disease should be considered 
completely unproven.  Psychological/neurological effects experienced upon 
eating wheat seem to be real, but it is also quite possible that the 
mechanisms involved are different from those involved in celiac disease. 
There is little or no solid information available right now.  Are there 
biopsy proven celiacs out there who do not recall having psychological 
disturbances (other than what might be expected by anyone who is sick, 
perhaps from the flu or a bad cold)?  If there are, it would be helpful to 
have brief messages from them.  Also, are there any celiac patients out 
there, again preferably biopsy-proven, who do not have any problems with 
white vinegar or vanilla extracts.  It would be helpful to have brief 
message from them as well? 
 
Don Kasarda, Albany, CA 
 
========================================================================= 
Date:         Sun, 30 Apr 1995 17:05:34 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      Re: Gluten and distillation 
 
I am in complete agreement with what Richard Abrams has written. 
Accordingly, I am puzzled as to why some celiac patients feel so strongly 
that they cannot use white vinegar, which I have been given to understand is 
prepared through fermentation of distilled alcohol.  Perhaps, there is some 
component of the alcohol or the fermentation inoculate (other than gluten 
peptides) that causes some people to react, somewhat the way a few people 
react to sulfites in wine.  I will try to obtain some more detailed 
information about the process by which white vinegar is made. 
 
Don Kasarda, Albany, CA 
 
)I have no experience with the manufacture of distilled beverages, but my 
)understanding of so basic a chemical procedure as distillation is that 
)distillation through a moderately efficient reflux tower is very 
)effective at separating volatile from non-volatile components.  Even any 
)micro-droplets of pot-liquor carried up as spray should be trapped in the 
)upper parts of the distilling apparatus so that non-volatiles such as 
)gluten or peptides if they are formed do not get into the distillate. 
)What does get over are the volatile components of the fermentation 
)mixture, alcohol, esters, and aldehydes and other fusel oil components. 
)It is these non-alcoholic volatile organic components that vary depending 
)upon the grain that was used for fermentation, and they, especially the 
)esters are responsible for the taste of the beverage.  I had hoped that 
)someone experienced in the manufacture of alcoholic liquors would have 
)answered your question, hence my delay in responding. 
========================================================================= 
Date:         Fri, 5 May 1995 16:57:19 -0400 
From:         Ivor Dennis Hill (ihill@UMABNET.AB.UMD.EDU) 
Subject:      Re: Growing out of CD 
 
On Fri, 5 May 1995 MOTORADD@AOL.COM wrote: 
 
) I understood from a gastrointerologist that one should periodically perform 
) a "gluten challenge" presumably because it is possible to "grow out of it" 
) being CD.  Does anyone have more info on this? 
 
Celiac disease is a permanent (lifelong) condition which affects 
genetically predisposed individuals who are exposed to gluten and related 
products from rye, barley and oats. Once the diagnosis has been confirmed 
there is absolutely no indication for periodically undertaking a gluten 
challenge. It is well known that patients with celiac disease who start 
ingesting gluten again after having been on a gluten free diet may go for 
years without apparently having any symptoms. Despite this there will be 
ongoing histological damage to the intestines. It was this apparent 
prolonged symptom free state that led doctors in the past to believe that 
people could "grow out" out of the condition. This is no longer accepted 
as correct. 
 
Ivor D. Hill 
Professor of Pediatrics 
Clinical Director, Pediatric Gastroenterology 
University of Maryland School of Medicine 
========================================================================= 
Date:         Tue, 9 May 1995 01:05:11 -0400 
From:         Don Wiss (donwiss@panic.com) 
Subject:      Re: HD symptoms 
 
Evelyn Loy (Evey129@AOL.com) asked: 
 
)I was just wondering if someone could please send some info on HD. I have 
)read some posts about it, but still don't know to much about it. Does it 
)always show up as lesions? or could it show up as single pimple-like rash? I 
)have been experiencing the rash and can't figure out where these little spots 
)are comming from. 
 
Are you referring to DH? If so, the following is from Peter Thompson's web 
page at http://www.demon.co.uk:80/webguides/nutrition/diets/glutenfree/ and 
was written by Joe Murray: 
 
Dermatitis Herpetiformis 
 
 
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 are 
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 in 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 
========================================================================= 
Date:         Tue, 9 May 1995 16:47:55 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      toxicity of uncooked beans 
 
Comments from Don Kasarda, Albany, CA 
 
Almost all plants have some toxic components in them, some more than others. 
In general, wheat is a good food with low levels of toxic components (except 
for celiac patients, of course) and wheat protein is highly utilized in 
animal feeding studies, but most uncooked beans and peas have significant 
amounts of protease inhibitors in them, such as trypsin/chymotrypsin 
inhibitors.  These inhibitors make it unwise to eat beans and peas raw. They 
stop the action of digestive enzymes (specifically, in this case, 
proteases), especially those of the pancreas, so the pancreas responds by 
making ever more of the enzymes.  This, however, is not a desirable 
situation on a constant basis.  So, eating a raw bean or two will probably 
not cause any harm--they are not going to cause systemic poisoning, but I 
think it is generally desirable to cook beans and peas of all sorts before 
they are eaten.  This tends to inactivate the protease inhibitors. 
 
Sprouting certainly will produce changes in composition, but these can 
sometimes be harmful as well as helpful.  Alfalfa sprouts will have saponins 
in them (I think more than in alfalfa seeds themselves, although I am not 
going to take the time to research this), for example.  A sprinkling of 
sprouts on a sandwich on occasion is probably not harmful and the other good 
components of the sprouts may be more important than the presence of the bad 
components.  Still, I think it probably would not be a good idea to make 
something like alfalfa sprouts a major part of the diet (piles of them for 
breakfast, lunch, and dinner).  A varied and balanced diet is best. The body 
is generally capable of dealing with the small amounts of toxic components 
present in all plant foods, but defenses can be overwhelmed. 
 
The preceding is not medical advice.  It is somewhat educated opinion.  Let 
the reader beware. 
========================================================================= 
Date:         Tue, 9 May 1995 22:35:15 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: differential diagnosis of CD 
 
THe differential diagnosis for CD is very broad indeed.  If one takes 
classic malabsorptive CD then the differential includes the follwing not 
exclusive list 
Giardiasis 
Common variable hypogammaglobulinemia 
IgA def 
Crohn's disease 
Whipple's disease 
Cow milk allergy( in kids) 
Pseudoobstruction 
Ischemic bowel 
Scleroderma of the small intestine 
intestinal diverticulosis 
rare cangenital defects in the mucosa 
Bacterial overgrowth syndromes 
Pancreatic failure 
Effects of some drugs 
HIV enteropathy 
protein losing enteropathy( lymphangiectasia) 
The list goes on forever. 
Most can be distinguished on biopsy and with other tests but this is a 
very complex part of the body and not very accessible to examination 
Some of these can coexist with CD 
If one considers all of the possible presentations of CD then there is 
even wider number of possibilities. 
Joe Murray 
**Not medical advice** 
========================================================================= 
Date:         Tue, 9 May 1995 23:01:40 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease and colon cancer and Ireland 
 
There was one study looking at family histories of CD patients and an 
increased prevalence of colon cancer cases was hinted at. 
Intestinal cancer in the setting of celiac disease may actually be 
lymphoma or adenocarcinoma of the small intestine both directly? related 
to CD.  A causal relationship to colon cancer is speculative.  Holmes 
group in Britain di not reveal an increased incif=dence of colon cancer 
in their patients. 
Their is no ready explanation for the incidence in Ireland. 
One could speculate that Ireland's subsistence on the potatoe for 
200years might have allowed celiacs to flourish unencumbered by gluten 
and the reintroduction of gluten lead to the disease. 
Other possibilities migt include early infant feeding practices or a 
limited genetic stock. Their are equally high areas of incidence in other 
places, parts of Sweden, Italy, and Israel. 
Joe murray 
========================================================================= 
Date:         Fri, 12 May 1995 10:03:01 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      Re: Chickpea flour 
 
In regard to toxic substances in raw beans and peas, Paul Shattock indicated 
in a recent posting that lectins and hemagglutinins are the harmful 
substances in red kidney beans and chick peas.  I had indicated in my 
posting that trypsin/chymotrypsin inhibitors are the main problem in beans 
and peas.  In checking with colleagues, I find thatlectins and 
hemagglutinins are the most harmful components, with trypsin/chymotrypsin 
inhibitors coming in second.  There may also be other toxic substances that 
are small molecules (proteins are large) and can be washed out to some 
degree. These various toxic components can be found in most (probably all) 
beans and peas.   Paul stated also that lectins are destroyed by wet heat, 
but will not be affected by dry heat and that beans should be soaked before 
cooking to make sure that they are thoroughly hydrated. This will deactivate 
the lectins and hemagglutinins, and largely deactivate the inhibitors. 
 
Eating raw beans or bean flour that has never been cooked seems not to be a 
good idea.  Perhaps beans could be cooked, dried, and then ground into flour? 
 
Don Kasarda, 
Albany, CA 
 
 
)I have been reading the posts on this topic.  I like to go back 
)country camping and am always looking for food ideas.  I met a person 
)who told me he takes a large bag of chick pea flour with him and makes 
)hummus while he's in the back country.  He mixes it with water and 
)whatever spices he's brought along.  Considering the discussion on the 
)possible toxicity of raw chick peas, does anyone have a comment on 
)how safe this is?  It sounds like a great idea, and an excellent 
)alternative for GFer's.  Would one be better served by heat treating 
)the flour, say in a warm oven or microwave (as the objective is to 
)keep it dry for travel). 
) 
)Jennifer 
========================================================================= 
Date:         Wed, 17 May 1995 16:21:36 -0400 
From:         Karoly Horvath (khorvath@UMABNET.AB.UMD.EDU) 
Subject:      Serological tests in celiac disease 
 
John Dennis asked me to explain the implications of serological tests in 
celiac disease. These are immunological tests. They are reflecting 
whether there is an activation of the immune system in the patients. The 
trigger for this immune response is the gliadin. The difference between a 
celiac and non-celiac individual is that a non-celiac does not have 
immune response to gliadin. 
 
If a patient has active disease and he/she is on a non-restricted diet 
the serological tests are positive, which means that he/she has 
high concentration of antibodies in his/her serum. 
 
We are performing three different tests: 
   -anti-gliadin IgG antibody test 
   -anti-gliadin IgA antibody test 
   -anti-endomysium antibody test 
 
The most sensitive and specific test is the anti-endomysium test,
however it can give false negative results in small children (Less Than
2 years of age) and in patients with selective IgA deficiency. IgA
deficiency occurs in one out of 500-600 people. In IgA defificent
patients only the anti-gliadin IgG test will be positive, and additional
absorptive studies are necessary before the intestinal biopsy. 
 
The combination of these three antibody measurements allows us to reach an 
approximately 96% specificity and sensitivity. It means that we can miss 
4% of patients if we rely on only the serological tests. 
 
If somebody on a gluten-free diet these tests become negative by 6 month 
of the gliadin-free diet. The decline of the initially high antibody 
levels may suggest a good compliance. In the absence of the "gliadin 
trigger" the immune system does not produce new antibodies, and generally 
it takes 6 months to eliminate the "old antibodies". A  positive 
test during a long-term diet indicates accidental gluten consumption. 
 
The serological tests are useful in the diagnosis of celiac disease, and 
helpful in the estimation of strictness of the diet. 
 
If a celiac patients has some unusual symptom during the diet these 
tests can help to estimate whether these symptoms are related to the 
gliadin or we should look for some other reason. In Europe most of the 
patients have serological test results at the time of diagnosis, on diet, 
and during a rechallenge with gluten, which makes their management much 
easier. 
 
If you have any question concerning diagnostic tests in celiac disease me 
and my colleagues will be happy to answer them. We established a 
Celiac Center here at the University of Maryland to help children and 
adults with celiac disease all over the U.S. 
 
Karoly Horvath, M.D., Ph.D. 
========================================================================= 
Date:         Thu, 18 May 1995 18:26:52 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      Re: Are oats safe for celiacs? (fwd) 
 
Reply from Don Kasarda, Albany, CA 
 
As Richard Abrams has indicated, the Irish work has not been published as a 
full paper yet. A final publication is being worked on.  It is touchy for me 
to comment on this because of my position as a government employee and this 
work is not cleared for publication yet.  Probably best to wait for full 
publication and then all can evaluate the study fully.  However, I will 
stick my neck out, after reiterating that I am not a physician and the 
reader should beware, by saying that this work looks very good to me.  The 
Dublin researchers used all the latest information and methods in the study. 
Of course, 10 patients is still a small number.  I will also mention that 
they had considerable difficulty buying supplies of oats that were not 
contaminated with wheat and used extensive laboratory testing to clear their 
supplies.  So how are you going to be sure that your oats are not 
contaminated? Wheat can grow in fields of oats quite readily and 
contamination can occur at many steps thereafter in the pathway to market. I 
think this work is important and that people should be aware of these 
findings, but if they wish to pursue a trial, it should be under the 
guidance of a knowledgeable physician and they should be well-informed about 
pitfalls and risks. Also,I think it is possible for a person to be 
sensitive/intolerant to oats without having celiac disease. 
 
With regard to Gln-Gln-Gln-Pro being in oats (a very good point!), I have 
recently done an identity search of the sequence data bases, which indicates 
that this sequence shows up in many, many proteins, including at least one 
zein (corn) and and one rice protein, so I now think it may be part of a 
toxic sequence, but is insufficient in itself. I don't think we can rule out 
the possibility that oats are non-toxic on the basis of Gln-Gln-Gln-Pro 
being present in the sequences of avenins.  Again, I disclaim responsibility 
for the above opinions.  They are presented for information purposes and for 
discussion purposes only. 
 
)How toxic are oats for celiacs?  There is anecdotal evidence pro and 
)con. 
)                                -Rich Abrams, Pittsburgh, PA 
========================================================================= 
Date:         Tue, 23 May 1995 09:51:33 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      quinoa, amaranth, buckwheat, tef, millet 
 
From:  Don Kasarda, Albany, CA 
 
I am afraid I am largely to blame for my "grains letter" not appearing in 
the archives because I was concerned about USDA regulations concerning 
publication and possible legal responsibility.  I have decided that I am 
probably being overly conservative and will just post the letter here 
publicly--with permission as far as I am concerned to put it in the archive. 
A copy of the letter, which was sent originally to Phyllis Brogden follows: 
(The only updates I would like to make are that oats may be non-toxic on the 
basis of some recent testing, but I would recommend waiting until results 
are published and then consulting an experienced physician before trying 
oats and there is considerable anecdotal evidence developing, as I expected 
for these wheats, that spelt and Kawmut are harmful. 
 
August 27, 1991 
 
Ms. Phyllis Brogden, Co-chairperson 
Celiac Sprue Support Group 
Greater Philadelphia Area 
6318 Farmar Lane 
Flourtown, PA 19031 
 
Dear Phyllis, 
 
 Since you, Elaine Hartsook, Mary Alice Warren, Annette Bentley, and Elaine 
Monarch have all asked me from time-to-time about the safety for celiac 
patients of some particular foods, I thought I would just put together a 
general statement for you covering a number of the concerns.  I am supplying 
copies to the other group chairpersons.  These are my opinions based on 
quite a few years of research in the area of proteins as they relate to 
celiac disease, but, of course, do not necessarily represent those of the 
Agricultural Research Service,U. S. Department of Agriculture.  You may use 
any of the information that seems of interest in your newsletters, but if 
you attribute it to me, it would be best to indicate that the opinions are 
mine as a researcher and are not intended to define USDA policy. 
 
 The only plants demonstrated to have proteins that damage the small 
intestines of people with celiac disease are those from wheat, rye, barley, 
and oats (and the man-made wheat-rye cross called triticale).  These species 
are members of the grass family and are quite closely related to one another 
according to various schemes of plant classification (taxonomy).  However, 
not all members of the grass family damage the intestines of celiac 
patients.  Rice and corn, for example, are apparently harmless. 
 
 Many other grains have not been subjected to controlled testing or to the 
same scrutiny as wheat, rye, barley, oats, rice, and corn in relation to 
celiac disease.  If we accept corn and rice as safe, then members of the 
grass family that are more closely related to these species (on the basis of 
taxonomy) than to wheat are likely to be safe.  Such grasses include 
sorghum, millet, teff, ragi, and Job's tears, which appear to be reasonably 
closely related to corn.  In some cases, there are protein studies in 
support of this conclusion, although the studies are not sufficiently 
complete to provide more than guidance. Scientifically controlled feeding 
studies with celiac patients would provide a better answer.  However, such 
studies are not likely to be carried out in the next few years because of 
high costs and the difficulty of obtaining patient participation (such 
studies would likely involve intestinal biopsy).  In lieu of feeding 
studies, further studies of protein (and DNA) would provide the next best 
way to evaluate my suggestion that millet, sorghum, teff, ragi, and Job's 
tears are not likely to be toxic in celiac disease. 
 
 The scientific name for bread wheat is Triticum aestivum--the first part of 
the name defines the genus (Triticum) and the second part, the species 
(aestivum). Species falling in the genus Triticum are almost certain to be 
harmful to celiac patients.  Grain proteins of these species include the 
various types characteristic of the gluten proteins found in bread wheats 
(including the alpha-gliadins) that cause damage to the small intestine in 
celiac disease. Some Triticum species of current concern include Triticum 
spelta (common names include spelt or spelta), Triticum polonicum (common 
names include Polish wheat, and, recently, Kawmut), and Triticum monococcum 
(common names include einkorn and small spelt).  I recommend that celiac 
patients avoid grain from these species. 
 
 Rye (Secale cereale) and barley (Hordeum vulgare) are toxic in celiac 
disease even though these two species are less closely related to bread 
wheat than spelta and Kawmut.  They belong to different genera, Secale and 
Hordeum, respectively, and lack alpha-gliadins, which may be an especially 
toxic fraction. 
 
 You have asked especially for my opinion regarding spelta and Kawmut. 
Evidently there have been anecdotal reports suggesting a lack of toxicity in 
celiac disease for spelta and Kawmut.  Controlled tests would be necessary 
to draw a firm conclusion.  I don't consider anecdotal reports as reliable 
for the following reasons. 
 
 The diagnosis, sometimes self-diagnosis, of celiac disease is occasionally 
made without benefit of reasonably rigorous medical or clinical tests, 
especially intestinal biopsy.  Individuals who are "diagnosed" in this way 
without rigorous testing may not actually have celiac disease.  Claims that 
particular foods cause this latter group no problems in relation to their 
celiac disease could cause confusion. 
 
 Furthermore, celiac patients who report no problems in the short run with 
spelta or Kawmut might experience relapse later.  There is now adequate 
evidence that when celiac patients on a "gluten-free" diet (that is, a diet 
free of any proteins or peptides from wheat, rye, barley, and oats) have 
wheat reintroduced to their diets, times-to-relapse vary enormously among 
individuals, ranging from hours to months, or even years. And this is for 
wheat, presumably the most toxic of all cereal grains to celiac patients. 
 
 Additionally, the relapse may not be accompanied by obvious symptoms, but 
be recognized only by physicians through observation of characteristic 
changes in the small intestinal tissues obtained by biopsy.  The reasons for 
the enormous variability of response times are not known.  It may be 
speculated that they have something to do with the degree of recovery of the 
lining of the small intestine on a gluten-free diet, the degree of stress 
that the patient had been experiencing (including infections), and 
individual genetic differences. 
 
 As I have indicated, all known grain species that cause problems for celiac 
patients are members of the grass family.  In plant taxonomy, the grass 
family belongs to the Plant Kingdom Subclass known as monocotyledonous 
plants (monocots).  The only other grouping at the Subclass level is that of 
dicotyledonous plants (dicots).  Some other species about which celiac 
patients have questions actually are dicots, which places them in very 
distant relationship to the grass family.  Such species include buckwheat, 
amaranth, quinoa, and rape.  The seed of the last plant listed, rape, is not 
eaten, but an oil is pressed from the seeds that is becoming commonly used 
in cooking.  This oil is being marketed as canola oil.  Because of their 
very distant relationship to the grass family and to wheat, it is highly 
unlikely that these dicots will contain the same type of protein sequence 
found in wheat proteins that causes problems for celiac patients.  Of 
course, some quirk of evolution could have given rise in these dicots to 
proteins with the toxic amino acid sequence found in wheat proteins.  But if 
such concerns were carried to a logical conclusion, celiac patients would 
have to exclude all plant foods from their diets.  For example, buckwheat 
and rhubarb belong to the same plant family (Polygonaceae). If buckwheat 
were suspect for celiac patients, should not rhubarb, its close relation, be 
suspect as well? 
 
 It may be in order to caution celiac patients that they may have 
undesirable reactions to any of these foods--reactions that are not related 
to celiac disease.  Allergic reactions may occur to almost any protein, but 
there is a great deal of individual variation in allergic reactions.  Also, 
buckwheat, for example, has been claimed to contain a photosensitizing agent 
that will cause some people who have just eaten it to develop a skin rash 
when they are exposed to sunlight.   Such reactions should be looked for, 
but for most people, buckwheat eaten in moderation apparently does not cause 
a problem.  (Buckwheat is sometimes found in mixture with wheat, which of 
course would cause a problem for celiac patients.)  It seems no more 
necessary for all people with celiac disease to exclude buckwheat from their 
diets because some celiac patients react to it than it would be for all 
celiac patients to exclude milk from their diets because some celiac 
patients have a problem with milk. 
 
 In conclusion, scientific knowledge of celiac disease, including knowledge 
of the proteins that cause the problem, and the grains that contain these 
proteins, is in a continuing state of development.  There is much that 
remains to be done.  Nevertheless, steady progress has been made over the 
years.  As far as I know, the following statements are a valid description 
of the state of our knowledge: 
 
o  Spelt or spelta and Kawmut are wheats.  They have proteins toxic to 
celiac patients and should be avoided just as bread wheat, durum wheat, rye, 
barley, oats and triticale should be avoided. 
 
o  Rice and corn (maize) are not toxic to celiac patients. 
 
o  Certain cereal grains, such as various millets, sorghum, teff, ragi, and 
Job's tears are close enough in their genetic relationship to corn to make 
it likely that these grains are safe for celiac patients to eat.  However, 
significant scientific studies have not been carried out for these latter 
grains. 
 
o  There is no reason for celiac patients to avoid plant foods that are very 
distantly related to wheat.  These include buckwheat, quinoa, amaranth, and 
rapeseed oil (canola).  Some celiac patients might suffer allergies or other 
adverse reactions to these grains or foodstuffs made from them, but there is 
currently no scientific basis for saying that these allergies or adverse 
reactions have anything to do with celiac disease.  A celiac patient may 
have an allergy to milk, but that does not mean that all celiac patients 
will have an adverse reaction to milk. 
 
 I hope this information will be helpful.  Please contact me if you need 
further details or clarifications. 
 
   Sincerely, 
 
 
   Donald D. Kasarda 
   Research Chemist 
   Crop Improvement and Utilization Research Unit 
 
cc: 
Elaine Hartsook, Gluten Intolerance Group, Seattle, WA 
Mary Alice Warren, Gluten Intolerance Group of Florida, Cocoa Beach, FL 
Annette Bentley, American Celiac Society, Dietary Support Coalition, 
  West Orange, NJ 
Elaine Monarch, Celiac Disease Foundation, Studio City, CA 
Antoinette Betschart, Director, Western Regional Research Center, Albany, CA 
Wilda Martinez, Associate Deputy Administrator, Agriproducts & Human 
Nutrition Sciences, Agricultural Research Service, Beltsville, MD 
========================================================================= 
Date:         Fri, 26 May 1995 10:02:17 EDT 
From:         Bill Elkus (Bill_Elkus@JEFCO.com) 
Subject:      Reichelt on hyperactivity and diet. 
 
As promised, here is a guest post from Dr. Reichelt.  This may be of value to 
parents of ADHD children who are doing their own reading in the area (or to 
their doctors).. 
 
From: K.L.Reichelt @ rh.uio.no 
Date: 05/26/95 05:36:59 PM 
 
Hi. 
Just a few references to diet and hyperactivity syndrome. 
1: Egger J et al (1985) Controlled oligoantigenic treatment of the 
hyperkinetic syndrome. The Lancet .march 9th :540-544. 
2:Kaplan SJ et al (1989) Dietary replacement in preschool-aged hyperactive 
boys. Pediatrics 83:7-17. 
3: Egger J et al (1992) Controlled trial of hyposensitisation with 
food-induced hyperkinetic syndrome .The Lancet 339:1150-1153. 
4:Carter CM et al (1993) Effects of a few food diet in attention deficit 
disorder. Arch Dis Child 69:564-568. 
5: Marshall  (1989) Attention deficit disorder and allergy :A neurochemical 
model of the relationship between illnesses. Psychol Bulletin 106: 434-446. 
Furthermore high intake of low roughage ( purified ) carbohydrates cause 
rapid increases in blood sugar followed by rapid insulin increase and 
subsequent steep fall.This is prevented by high fiber additions concomitant 
with carbohydrate intake. It is possible to have an overshoot with 
postprandial hypoglycemia. 
This is more common in habitually violent offenders in Finland. 
Virkkunen M (1982)) Reactive hypogycemia tendency among habitually vioent 
offenders. Neuropsychopharmacol 8: 35-40. 
 
Finally we have found peptide increases (possibly 
phosphorylated/glycosylated?) in Hyperkinesia. ( Hole K et al ( 1988) 
Attention defciti disorders: A study of peptide-containing urinary 
complexes. j develop behav Pediatrics. 9: 205-212.). 
 
It should also be noted that concentrated glucose can increase the 
paracellular uptake in the gut .That is also more protein and peptides can 
be taken up. 
Ref : Pappenheimer JR and Madara JL (1993) Role of active transport in 
regulation of junctional permeability and paracellualr absorption of 
nutrients   by intestinal epithelia .in Istonic transport in leaky Epithelia 
(Alfred 
benzen Symposium)Munksgaard ,Copehagen : pp 221-232. 
 
Hope this may be of some use to at least some parents. 
 
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:         Fri, 26 May 1995 09:53:39 EDT 
From:         Bill Elkus (Bill_Elkus@JEFCO.com) 
Subject:      Kasarda on cross contamination 
 
On May18th, Don Kasarda commented on the recent pilot study 
suggesting that oats may be safe for Celiacs (generally, he advised 
caution, the study was small, full study not published, etc.)... 
He also said in that May 18th post: 
 
DK  I will also mention that they had considerable difficulty buying 
DK supplies of oats that were not contaminated with wheat and 
DK used extensive laboratory testing to clear their supplies. 
DK  So how are you going to be sure that your oats are not 
DK contaminated? 
 
In a private email, I asked Don if there was something about oats 
in particular which makes them more likely to be contaminated 
with wheat than other grains, such as rice, corn, or the exotic grains. 
 
His reply follows (with his permission): 
 
DK With regard to your question about oats--I think oats may be more 
DK frequently contaminated with wheat (or rye or barley) than other 
DK grains because it may be grown in rotation with wheat or in 
DK adjacent fields so that volunteer wheat might well be present in 
DK the fields and be harvested with the oats. I am not sure, but I 
DK would make a guess that most farmers growing oats probably also 
DK grow wheat so that contamination from truck beds, machinery, and 
DK storage facilities is possible.  Grains like corn are often grown 
DK separately from wheat, to some extent even in different parts of 
DK the country, and the way they are grown makes contamination less 
DK likely. This may be true of amaranth, quinoa, etc., as well. 
DK 
DK Beyond that, contamination during transportation and processing 
DK would probably not be much different than for other grains. 
 
I would add (from the little that I know about agriculture) that rice tends 
to be grown in a completely different climate from wheat, and should also 
be less likely to be contaminated in the fields. 
 
Bill Elkus 
========================================================================= 
Date:         Sun, 28 May 1995 16:09:26 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      lemon grass harmful? 
 
Dain Smith requested information about lemon grass (Cymbopogon citratus). 
 
Reply from Don Kasarda, Albany, CA 
 
As far as we know, the proteins harmful in celiac disease are expressed only 
in the grain of certain grasses, wheat being the primary one, so stalks and 
leaves in themselves are not likely to be harmful unless contaminated with 
seeds or grain or exudates from seeds or grain (as in pressing). According 
to the Manual of Grasses of the Grasses of the United States (Hitchock, 2nd 
ed., U. S. Government Printing Office, 1950), lemon grass falls in Tribe 13, 
Andropoganeae.  For comparison, in this particular taxonomy, wheat, barley, 
and rye fall in Tribe 3, oats in Tribe 4, rice in Tribe 9, and maize (corn) 
in Tribe 14.  I interpret this as indicating that lemon grass is much more 
closely related to corn than to wheat and even the seeds (grain) are not 
likely to be harmful. 
 
This is not medical advice and I know of no scientific testing of lemon 
grass in regard to its potential toxicity in celiac disease. 
========================================================================= 
Date:         Tue, 30 May 1995 10:08:43 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      vinegar 
 
)celiacs, in my view, should err on the side of safety!  CSA/USA must have 
)some good reasons for prohibiting distilled vinegar. 
 
I certainly agree that full information should be available and then each 
person can make a decision based on that information.  In this regard, I 
hope that someone from CSA/USA (or any other celiac group that prohibits 
grain alcohol based vinegar) will provide the basis for their prohibition. 
It would be helpful. If I knew what this belief was based on, perhaps I 
could do some checking. 
 
Don Kasarda 
Albany, CA 
========================================================================= 
Date:         Fri, 9 Jun 1995 10:43:33 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      Patient Support Group 
 
Addition from Don Kasarda to list of support groups provided by Don Wiss. 
 
I think that Phyllis J. Brogden, Chairman of the Greater Philadelphia 
Celiac-Sprue Support Group, is doing an outstanding job with her group and 
felt that the Greater Philadelphia group should certainly be included in the 
listing of patient support groups.  I am not sure what the membership fee 
is, but Phyllis can be contacted for information.  I understand that an 
extensive information packet is supplied to each new member. 
 
Phyllis J. Brogden, Chairman 
Greater Philadelphia Celiac-Sprue Support Group 
6318 Farmar Lane 
Flourtown, PA 19031 
Telephone: 215/836-7518 
========================================================================= 
Date:         Tue, 13 Jun 1995 09:46:55 -0400 
From:         Alessio Fasano (afasano@UMABNET.AB.UMD.EDU) 
Subject:      CD and growth problems 
 
Dear Kathy, 
your question about CD and poor growth is one of the most frequent 
questions that I deal with in my practice and I am more then happy to try 
to give you more insight on this issue.  Children with typical 
symptoms of the disease (i.e. chronic diarrhea, irritability, distended 
abdomen, etc.) present poor weight gain or weight loss, while the high 
is usually not affected, at least in the first stage of the disease. 
Consequently, they appear dystrophic (weight/high Lt 5 centile).  These 
patients do not offer any problems in terms of diagnosis.  More difficult 
to identify are the cases presenting atypical symptoms.  Sometimes the 
short stature is the only symptom present.  In other cases the weight 
and/or the high may fall off from the growth chart (i.e. weight gain 
unappropriate for their age, high growth LT 6.5 cm/year), but no 
gastrointestinal symptoms are present.  As concern your child, the "drop" 
in centile at 15 month of age is not unusual and may be due to changes in 
diet, eruption of teeth, etc.  On the other hand, he had a proportional 
growth since age two, remaining on the same centiles. Based on the previous 
considerations, it is unlikely that he is affected by CD. 
Different story would be if he is a first degree relative of a proved CD 
patients.  Since the prevalence of CD among first relatives of celiacs is 
higher then in the general population, it is now general recommendation 
to screen them for the presence of antigliadin and antiendomysium 
antibodies in the blood, despite the presence of symptoms resembling CD. 
 
Alessio Fasano, M.D., Director 
Division of Pediatric Gastroenterology and Nutrition 
University of Maryland, School of Medicine 
22 S. Greene St., PO Box 140 
Baltimore, MD 21201 
========================================================================= 
Date:         Tue, 13 Jun 1995 18:33:03 -0500 
From:         J. Murray (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: re skin rash that got better on GFD and RAST 
 
The improvement of an itching rash with the introduction of a GFD should 
suggest the possibility of dermatitis herpetiformis.  This can be 
diagnosed by special biopsies done by a dermatologist that suspects the 
condition. See earlier postings on the subject. 
RAST testing is a very controversial topic with little hard scientific 
basis for its use in diagnosing food allergies( this is apersonal opinion) 
Serology testing for celiac disease is much more precise.  I would regard 
a careful history , exclusion and rechallenge( perferable blinded as a 
better test of allergies.  However these are not always possible or 
practical. 
The whole area of food allergies is also affected by food intolerances 
which include lactose intolerance, chemical effects of foods, chocolate, 
coffee would be two examples. 
I regard CD as simple as compared to food allergies. 
Joe Murray 
(not medical advice) 
========================================================================= 
Date:         Thu, 15 Jun 1995 16:20:51 PDT 
From:         Donald D. Kasarda (kasarda@PW.USDA.gov) 
Subject:      rice bran 
 
)From Don Kasarda, Albany, California  (kasarda@pw.usda.gov) 
 
There have been some questions on the list recently about bran as a fiber 
source.  Unless wheat bran is very specially washed for the celiac market, I 
would expect it to have some endosperm contamination (endosperm being the 
part of the grain that has gluten proteins and is the source of white flour) 
and would not recommend it. 
 
I think rice bran is a good alternative for celiac patients.  Rice is a 
major crop in California. There has been a problem with rice bran developing 
rancidity because of lipase enzymes and this laboratory has developed a 
process for rice bran stabilization that involves extrusion cooking, which 
inactivates the lipase.  If anyone wishes to try to find some retail sources 
of the stabilized rice bran, he or she might might contact one of the 
companies using the extrusion cooking process developed here. The following 
address is for one of them: 
 
Food Extrusion, Inc. 
Daniel L. McPeak, CEO 
1241 Hawk's Flight Court 
El Dorado Hills, CA 95630 
Tel. 916/933-3000. 
 
Alternatively, if a full-fat fresh rice bran could be obtained right after 
milling (from the California or East Texas/Louisiana mills), storing the 
bran in a freezer should prevent development of rancidity. 
========================================================================= 
Date:         Mon, 19 Jun 1995 22:34:25 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: CELIAC Disease as a contagious entity? 
 
As far as we know CD is not an infectious disease.  I have had only one 
husband/wife pair with celiac disease and have never seen unrelated 
adopted children both get it. If anyone has experience of that finding 
please e-mail me post it.  There is certainly conflicting evidence on 
whether a infection triggers the presentation( not necessarily the start 
of the disease) in a genetically predisposed person. Not all of the cause 
is genetic in that 3 out 4 identiacl twins will have the diseae but not 
all pairs.  Joe Murray 
========================================================================= 
Date:         Tue, 20 Jun 1995 00:12:28 -0500 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: latex allergy and biopsy 
 
The presence of latex allergy is becoming more common and can be 
serious.  However more centers are becoming aware of this problem and can 
now carry out many mediacl and surgocal roceedures without exposure to 
latex.  Endoscopically directe d biopsy can be done latex free so long a 
careful exclsion of latex is made.  Most endoscopes dont not have latex 
components on the insertion tube.  they can have elsewhere.  medications 
need to be specially prepared also. 
it can also be reasonable to study the patient in a less precise way by 
antibodies and absorbtion tests. 
Joe Murray 
not medical advice 
========================================================================= 
Date:         Thu, 22 Jun 1995 14:40:44 EDT 
From:         Bill Elkus (Bill_Elkus@JEFCO.com) 
Subject:      Reichelt: Schizophrenia and diet 
 
A guest post from Kalle Reichelt, MD, PhD (in reply to the recent posts on 
this topic) 
 
Hi. 
I would like to draw your attention to a wee paper from us (1) on diet and 
schizophrenia ,where we followed completely blind 10 semichronic (not the 
best starting point) male schizophrenics for 1 year. We could conlcude : 
 
a) That both urinary peptide excretion and rating scales (Comprehensive 
Pyschopathological rating scale and Whitaker Index of schizophrenic 
thinking) as well as clinical state improved slowly on diet, with regression 
in those off.  This was a crossover study. 
 
b) It is not unreasonable that changes will be slow because the kidneys are 
efficient peptide, aminoacid and protein preserving organs. 
 
c) The trophic changes in brain in schizophrenia  established 
macroscopically and microscopically in a great many publications the last 
10 years, would take time to correct if at all possible. Probably not 
completely being maturational defects to some extent ( 2).There is also the 
problem of an optimal timing for maturation of nerve cells as demonstrated 
in the visual cortex. This means that experiments on chronic cases is a poor 
way to test the hypothesis. Fairly fresh cases would be ideal. 
 
We have recently been able to demonstrate the presence of at least 5 (five) 
peptides with opioid activity in urines and dialysis fluid from 
schizophrenics that react to antibodies against bovine casomorphin 1-8.One 
of these cochromatogrpahs and has the same amino acid composition as bovine 
casomorphin 1-8.(Reichelt submitted ; as in autists (3)).The very fulminant 
psychosis seen in post-partum psychosis seems to be mediated by human 
casomoprhin (4) and demonstrates that such peptides do have access to the 
Central nervous system (CNS). 
Furthermore IgA antibodies against gliadin .beta-lactoglobulin and casein 
are increased in male schizophrenics (5)indicating a connection.NB: The 
biopsies were normal so that this is not coeliac disease, but a state with 
increased transmucosal protein/peptide transport. After all uptake in small 
amounts of intact protein and peptides is well documented (see earlier 
communications) 
WE think therefore that it is important to be gluten/gliadin free and 
milkprotein free if diet is to be used.The more so because gliadinomorphin 
and casomorphin are very similar and gliadinomorphin is part of the coeliac 
disease peptide B3142(6) 
Gliadinomorphin : Y-P-Q-P-Q-P-F 
Casomorphin(b)    Y-P-F-P-G-P-I etc. 
There are a series og gluten derived opioids too. This is one of the 
reasons why we remove both protein sources in autistic syndromes too 
(2,7,8)with  again long term but clearly measureable effects and regression 
in all who quit diet. 
The paper that was read to Dohan  has been changed to : Can schizophrenia be 
reasonably explained by Dohan s hypothesis on genetic interaction with a 
dietary peptide overload? . It is hard ot get this published because it goes 
against the present trends. However, I think it extremely important so I 
keep trying ( I am of course rather partial to the hypothesis which makes 
it difficult). 
I find it remarkable that given the complete lack of aetiology directed 
treatment that  a proper clinical trial should be so difficult to 
establish.After all also an American has published data along these lines (9) 
using our old urine screening assay.Our new technique based on Shattocks 
groups work in the UK but changed a little( Reichelt in prep) is of course 
available to anyone who is interested.It is fast and with fewer false 
positives.They are also wellcome here to learn by doing. 
Finally it should be stressed that opiods do have maturation inhibitory 
effects in rat brain (10),which would fit Crows(2) data quite nicely . 
References 
1: Reichelt KL et al (1990) The effect of a gluten free diet on 
glycoprotein associated urinary peptide excretion in schizophrenia J Ort 
Mrd 5: 223-239. 
2:Crow T(1994) Aetiology of schizophrenia .Current Opin.Psychiat7: 39-42 
3:Reichelt Kl et al (1991) The probable etiology and possible treatment of 
childhood autism . Brain Dysfunct. 4:308-319. 
4:Lindstr|m LH et al (1984) CSF and plasma beta-casomorphin-like opioid 
peptides in post-partum psychosis. Amer.j psychiat. 141:1059-1066. 
5: Reichelt Kl and Landmark J (1995) Specific IgA antibody increases in 
schizophrenia. J Biol Psychiat37:410-413. 
6. Wieser H et al (1984) Amino-acid sequence of the coleiac active peptide 
B 3142. Z Lebensmittel Untersuch Forsch 79:3371-3376. 
7:Knivsberg A-M et al (1990) Dietary intervention in autistic syndromes. 
Brain Dysfun.3:315-327. 
8: Knivbserg A-M et al (1995) Autistic syndromes and diet .A four year 
follow-up study of 15 subjects. Scand J Educat. Res : In press (accepted) 
9: Cade R et al (1990)The effects of dialysis and diet in schizophrenia 
Psychiatry: A World prespective 3:494-500. 
10:Zagon IS and Mclaughlin PJ (1987) Endogenous opioid systems regulate 
cell proliferation in the developing rat brain .Brain Res 412:68-72 
 
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:         Fri, 23 Jun 1995 09:44:33 -0400 
From:         Alessio Fasano (afasano@UMABNET.AB.UMD.EDU) 
Subject:      Couple convicted in son's death - Reply 
 
Dear Mr and Mrs. Kennedy, 
I red your e-mail concerning the frustration about the resistance of 
doctors to "try a gluten free diet".  It is out of discussion that there 
are many phisicians (including gastroenterologists) that are poorly 
knowdlegible about celiac disease and their advises may sometimes 
generate confusion.  But it is also out of discussion that there are 
outstanding experts on the disease that spent a great deal 
of time and effort to come out with reccomendations and guidelines for 
the correct diagnosis of the disease.  When you state: "..it IS possible 
to just try the diet rather then put kids.. thru the biopsy", you 
contribute to generate this confusion.  As you well know, Celiac disease 
is a life-long condition (in other words, when you got, you got it!). 
You cannot commit yourself for the rest of your life to a challenging 
diet without being 100% sure of the diagnosis.  Currently, there are no 
short cuts:  testing for the antigliadin and antiendomysium antibodies, 
followed by the intestinal biopsy (if the antibodies are positive) is the 
ONLY way to make the diagnosis.  Trying a diet, without being sure of the 
diagnosis, is like treating yourself as a "guinea pig".  If we really want to 
avoid that other patients will experience the same frustrations that you and 
other people had suffered, we should work togheter to educate the american 
scientific community and the next generation of physicians to learn 
about the disease.  We are working very hard on this task as well as to 
prove that celiac disease is not a negligible condition in USA. 
 
Alessio Fasano, M.D., Director 
Division of Pediatric Gastroenterology and Nutrition 
University of Maryland, School of Medicine 
Baltimore,MD 
afasano@umabnet.ab.umd.edu 
========================================================================= 
Date:         Fri, 23 Jun 1995 09:28:59 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      schizophrenia, arthritis, ms 
 
Mike Johnson stated that: 
 
Schizophrenia, arthritis, and multiple sclerosis seem to be associated with 
gluten and that there seem to be practical and statistical indications to 
the contrary. 
 
Comment from Don Kasarda, Albany, CA 
 
I would be very much interested in the literature references that provide 
significant statistical indications of an association of the above mentioned 
conditions with gluten ingestion.  I am mainly aware of studies in the area 
of schizophrenia where those that claim a significant correlation are 
canceled by others that haven't found such a correlation.  This may well be 
a problem of experimental design rather than indicating a lack of any 
connection, but I haven't been convinced of a significant correlation by 
what I have seen so far.  I understand the frustration that results when 
needed research isn't being done, but research costs money, often big money, 
and the funding frequently isn't available to researchers no matter how 
interested they might be in the problem.  Also, when dealing with human 
subjects, there are major problems finding willing, suitable participants 
for studies and, in the case of schizophrenia, for example, with informed 
consent by subjects. 
========================================================================= 
Date:         Mon, 26 Jun 1995 08:28:33 -0400 
From:         Karoly Horvath (khorvath@UMABNET.AB.UMD.EDU) 
Subject:      Biopsy or self-diagnosis? 
 
        I have read the comments about the necessity of biopsy in celiac 
disease and a patient's letter who was diagnosed by biopsy and his/her 
symtoms did not improve. Let me write down my opinion shortly. 
        -The biopsy is absolutely necessary in the diagnosis in CD,especially 
in adult. I do not want to list all the reasons. One of them, that there is 
a condition so called hypoplastic villus atrophy (CD is a 
hyperplastic diseas with increased mitosis number), which is not CD, but 
should be followed carefully, because of the possibility of malignancy. 
        -A second reason: when we are performing a biopsy we analyze the 
activity of lot of digestive enzyme. Tipically the enzymes localized 
in the luminal part of intestinal cells can have low activities. It 
means that at the beginning we should start not only a gluten-free 
diet, but should consider the malabsorption of lactose, sucrose etc. If 
somebody does not improve in gluten-free diet immediately one reason can 
be a so-called secondary dissacharidase deficiency. The recovery time 
of  the damaged intestine mucosa is generally much slower in adult than 
in children. 
        -Third: I have written down in the Celiac BBS that the biopsy is 
nor a dangerous procedure and necessary for the diagnosis. 
        -I understand the frustation of lot of people in this country 
having celiac disease. However, I feel a bit "upset" that this negative 
feeling are directed to gastroenterologist, who really have expertise in 
the diagnosis of this disease (e.g. I have 18 years experience with 
children), by questioning the necessity of intestinal biopsy and a proper 
diagnosis. 
 
Karoly Horvath, M.D. 
University of Maryland 
========================================================================= 
Date:         Tue, 27 Jun 1995 09:20:19 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      reactions 
 
leanne Wenzel wrote: 
 
)In Canada French's mustard is considered to be safe. Tumeric is a spice and 
)does not contain any gluten. Cocoa processed with alkali definitely does not 
)contain gluten. If you have reactions to these substances it has nothing to 
)do with a gluten intolerance. 
 
Comment from Don Kasarda, Albany, CA 
 
My guess is that about 90% of the claims of "hidden gluten" made on this 
list have nothing to do with gluten intolerance.  People react to all kinds 
of things and not always consistently. It seems to me unreasonable to 
attribute every twist and turn of the intestinal tract to "hidden gluten." 
========================================================================= 
Date:         Thu, 29 Jun 1995 15:08:23 PDT 
From:         "Donald D. Kasarda" (kasarda@PW.USDA.gov) 
Subject:      time req. for challenge 
 
Comment from Don Kasarda, Albany, CA. 
 
Laura Johnson-Kelly complained that no medical professional had replied to 
her question about guidelines on what is necessary for a challenge.  I 
suspect the reason for a lack of response from the medical professionals has 
to do with the complexity of the issue.  It would take many hours of 
literature review and writing to put together even a minimally adequate 
response. 
 
In the absence of comment from the medical professionals, however, I will 
offer some comments from a non-medical professional (me). 
 
Back in the mid 1970's, I thought it might be interesting to test celiac 
patients with bread from a wheat in which geneticists had removed a large 
block of alpha-gliadin genes (the protein product of which is known as 
A-gliadin) in the hopes that it might be a non-toxic wheat.  At that time, 
we only knew for sure that gliadins as a whole were toxic and that the 
A-gliadin fraction was toxic (the only fraction that had been adequately 
tested).  With the collaboration of a highly experienced and expert group at 
the National Institutes of Health (NCI), which had patients available for 
participation, we tested the nulli-6A bread (as I named it) by feeding it, 
and bread from a normal wheat as a control, to 6 well-characterized adult 
celiac patients.  Characterization included biopsy. 
 
We fed either 1 loaf per week or 2 loaves per week (corresponding 
approximately to 4 grams and 8 grams of gluten, respectively, per day). 
Later we fed them the normal bread.  This was almost entirely done with the 
patients hospitalized, so they were under complete control. 
 
The least responsive patient had only very minor symptoms after two weeks on 
the nulli-6A bread (4 loaves total), but showed mild to moderate villous 
atrophy when biopsied (biopsy had been normal at start).  None of the 
patients showed severe symptoms on the nulli-6A bread, but all 4 who were 
biopsied showed at least some deterioration of the mucosa on biopsy.  As a 
control, the normal bread was then fed to 4 of the same patients for 1 week 
(1 loaf) and all experienced diarrhea by the end of the week. Only 1 patient 
was biopsied at this point and showed mucosal damage. At that time, standard 
antibody screening had not been developed, so studies of antibody 
development upon challenge were not done.  I should indicate that, 
unfortunately, when a paper on this work was submitted to the journal 
Gastroenterology, the referees and editor rejected the paper and so it has 
never been published.  Personally, even after all these years, I don't think 
there was any adequate reason for rejection of the paper, which contained 
some very valuable information about gluten challenge with controlled 
amounts of bread only, as opposed to just putting the patient on a normal 
diet.  Any defects in the presentation of the work in the manuscript could 
easily have been remedied, but rejection is not unusual in the world of 
scientific publishing.  Some highly arbitrary decisions are made by very few 
people.  Some junk gets published and some good work does not. 
 
We concluded that the nulli-6A bread was likely to be of lower toxicity than 
normal bread, but still definitely toxic.  With our knowledge now that all 
gliadins are toxic, this would be expected. 
 
In another study that I know of, 0.5 gram of gluten per day (a relatively 
small amount) was fed to 4 adult patients for about 6 weeks. Two patients 
showed villous atrophy at the end of the period and the other two showed 
signs of infiltration by intraepithelial lymphocytes, which is considered to 
the be the very first sign of mucosal change in gluten challenge. 
 
In a paper published in 1988 by Ansaldi et al., they reported that of 13 
children placed on a normal gluten-containing diet (Italy), 9 had symptoms 
at the end of one month and 12 showed a flat mucosal biopsy at that time. 
 
Finally, however, there are some reasonably well documented cases where 
properly diagnosed patients (usually children) have gone back to a normal 
diet for years before relapsing, as indicated by regular biopsies. 
 
Being aware of much of the literature involving challenges, I think it is 
extremely difficult to specify the amount of gluten and the time required 
for proper challenge because of the enormous variability among patients. 
Perhaps, however, the information I have given will be of some help to 
patients contemplating a gluten challenge. 
 
I am surprised by the number of people who write to the list about instant 
reactions to gluten.  My long-time impression of many studies involving 
challenge has been that most celiac patients do not respond with immediate 
distress within hours of first eating wheat. Perhaps this is incorrect. 
Perhaps there has been a strong self-selection factor involved in that 
people who have severe reactions are not likely to volunteer for or agree to 
gluten challenge studies.  There may also be a self selection factor for BBS 
communications in that the people who have the greatest problems and odd 
symptoms may tend to communicate to the list to a greater extent than those 
who have few problems. 
 
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